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HOSPICE SOCIAL WORK: LINKING POLICY,
PRACTICE, AND RESEARCH
A REPORT FROM THE MARCH 25, 2010
SYMPOSIUM
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TABLE OF CONTENTS
About the Symposium ..............................................................
About Hospice ..........................................................................
What is Hospice Social Work? ..................................................
Current Status of Hospice Social Work Research ......................
Federal Rules and Priorities ......................................................
Accreditation and Professional Standards for Practice of Hospic
This report is the product from the Symposium, Hospice Social Work: Linking Policy Practice
and Research, hosted by the Social Work Policy Institute on March 25, 2010. Copies can be
downloaded from the Institute’s website at SocialWorkPolicy.org.
For more information contact:
Joan Levy Zlotnik, PhD, ACSW
Director
Social Work Policy Institute
750 First Street, NE, Suite 700
Washington, DC 20002
202.336.8393
[email protected]
SocialWorkPolicy.org
Conclusions ..............................................................................
Social Workers’ Roles in Hospice Care ........................
Research and Hospice Social Work ..............................
Hospice Social Work/Policy Connections ....................
Recommendations for Action ....................................................
To Advance the Role of Hospice Social Work and Addr
To Enhance Diversity in Hospice Services ....................
To Promote Interdisciplinary Team Functioning ..........
To Promote Research-Practice Linkages ......................
To Promote Research on Hospice Social Work ............
To Promote Collaborations with Federal Agencies ......
References ................................................................................
Appendix ..................................................................................
Recommended Citation – Social Work Policy Institute (2010). Hospice Social Work: Linking
Policy, Practice and Research, Washington, DC: National Association of Social Workers.
©2010 National Association of Social Workers. All Rights Reserved.
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TABLE OF CONTENTS
About the Symposium ..........................................................................................................................1
About Hospice ......................................................................................................................................2
What is Hospice Social Work? ..............................................................................................................4
Current Status of Hospice Social Work Research ..................................................................................6
Federal Rules and Priorities ................................................................................................................10
Accreditation and Professional Standards for Practice of Hospice Care ..............................................12
he Symposium, Hospice Social Work: Linking Policy Practice
cial Work Policy Institute on March 25, 2010. Copies can be
website at SocialWorkPolicy.org.
W
00
Conclusions ........................................................................................................................................13
Social Workers’ Roles in Hospice Care ..................................................................................13
Research and Hospice Social Work ........................................................................................15
Hospice Social Work/Policy Connections ..............................................................................16
Recommendations for Action ..............................................................................................................18
To Advance the Role of Hospice Social Work and Address Practice Issues ............................18
To Enhance Diversity in Hospice Services ..............................................................................19
To Promote Interdisciplinary Team Functioning ....................................................................20
To Promote Research-Practice Linkages ................................................................................21
To Promote Research on Hospice Social Work ......................................................................21
To Promote Collaborations with Federal Agencies ................................................................22
References ..........................................................................................................................................23
Appendix ............................................................................................................................................24
l Work Policy Institute (2010). Hospice Social Work: Linking
Washington, DC: National Association of Social Workers.
Association of Social Workers. All Rights Reserved.
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
Appendix B) included expert presentations (see Appendix C)
the presentations, the participants engaged in roundtable deli
hospice psychosocial research, emerging practices in end-of-li
role on the interdisciplinary team, and strengthening research
Drawing from the presentations and discussions, recommend
challenges identified in regard to research, practice, policy an
HOSPICE SOCIAL WORK: LINKING
POLICY, PRACTICE AND RESEARCH
The symposium was particularly timely since the Conditions
minimum federal standards for hospice services were compre
Medicare and Medicaid Services (CMS) in 2008 and are now
revised standards could both serve as input to the symposium
recommendations that emerged from the meeting. In addition
activities, plans were underway for the NASW 2010 Annual
Critical Role in End of Life Care (www.socialworkers.org/na
default.asp) to be held August 3-4, 2010 in Boston, MA. The
shape the agenda for that conference. In addition, the sympo
connections between the social work community and CMS b
social work practice and increasing social work’s awareness o
its priorities regarding quality improvement.
ABOUT THE SYMPOSIUM
Hospice is an increasingly prevalent service to provide end-of-life care that addresses both quality
of care and quality of life and focuses on meeting psychosocial needs for both the patient and their
loved ones. Since the inception of hospice care, social workers have served as key members of the
hospice interdisciplinary care team.
Planning for the symposium occurred in partnership with the
Care Organization (NHPCO), a provider organization with w
collaborative initiatives.
In March 2010, to more fully explore the connections between quality hospice social work
services, the mission of hospice, federal requirements, professional standards, and the current state
of hospice research by social workers, a think tank meeting was convened by the Social Work
Policy Institute (SWPI) of the National Association of Social Workers (NASW) Foundation. The
symposium, Hospice Social Work: Linking Policy, Practice, and Research brought together
practitioners, administrators, regulators, researchers, policy-makers and national leaders. The goal
of the symposium was to explore:
•
In advance of the symposium, the Social Work Policy Institut
hospice legislation, standards and credentials, continuing edu
activities of national organizations involved with hospice, an
research and researchers. This information helped to inform t
included in the Appendix of this report.
Social work’s contribution and challenges in building comprehensive community-based
end-of-life care,
•
Research on hospice social workers’ roles and intervention practices,
•
Regulations for hospice and hospice social workers, and
•
Promotion of high quality psychosocial care in hospice.
Hospice Facts
Source: National Hospice and Palliative Care Organization, 2009
• There are currently more than 4,850 hospice programs in the United States that
• It is estimated that about 38.5% of deaths are under hospice care.
• Just under half of hospice care organizations are for-profit (46%), half are non-p
U.S. Department of Veterans Affairs).
• Nearly all hospice care is paid for through the Medicare or Medicaid Hospice Ben
• Social workers have an average caseload of 24.2 patients; nurses have on avera
The think tank participants (see Appendix A) included representatives from social work research
and practice and key stakeholders representing hospice programs, federal research and regulatory
agencies, national organizations and foundations. The anticipated outcome was the development
of a set of action steps to enhance the state of hospice social work. The symposium agenda (see
ABOUT HOSPICE
Hospice History
Hospice services help patients and their families deal with the
include palliative care and comfort services as well as followbereavement. One of the unique qualities of hospice services
services with the patient’s loved ones after the patient’s death
The term, “hospice” originates from the Latin word “hospitium” or guesthouse. It described a house provided for sick persons returning
from pilgrimages. The first modern hospice movement, which used a team approach to professionally administer pain management and
compassionate caregiving to the dying, was founded near London in the 1960s by Cicely Saunders, a British social worker, nurse and
physician. Hospice care arrived in America in 1974, with the first center opening in New Haven, Connecticut (HFA, n.d.; Cicely Saunders
Foundation, 2010).
SOCIAL WORK POLICY INSTITUTE
Hospice services may take place in the patient’s own home, in
increasingly as an adjunct to nursing home, hospital and assi
1
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Appendix B) included expert presentations (see Appendix C) and facilitated discussions. Following
the presentations, the participants engaged in roundtable deliberations on the current status of
hospice psychosocial research, emerging practices in end-of-life care, enhancing the social worker’s
role on the interdisciplinary team, and strengthening researcher/practitioner/policy connections.
Drawing from the presentations and discussions, recommendations were developed to address the
challenges identified in regard to research, practice, policy and professional development.
CIAL WORK: LINKING
CTICE AND RESEARCH
The symposium was particularly timely since the Conditions of Participation (CoP) that set the
minimum federal standards for hospice services were comprehensively revised by the Centers for
Medicare and Medicaid Services (CMS) in 2008 and are now being implemented. Thus, the
revised standards could both serve as input to the symposium deliberations and be a catalyst for
recommendations that emerged from the meeting. In addition, among NASW’s hospice-focused
activities, plans were underway for the NASW 2010 Annual Practice Conference, Social Work’s
Critical Role in End of Life Care (www.socialworkers.org/nasw/conferences/boston2010/
default.asp) to be held August 3-4, 2010 in Boston, MA. The symposium outcomes could help
shape the agenda for that conference. In addition, the symposium helped to strengthen the
connections between the social work community and CMS by enhancing CMS’s knowledge of
social work practice and increasing social work’s awareness of CMS’s rule-making procedures and
its priorities regarding quality improvement.
M
ervice to provide end-of-life care that addresses both quality
on meeting psychosocial needs for both the patient and their
pice care, social workers have served as key members of the
Planning for the symposium occurred in partnership with the National Hospice and Palliative
Care Organization (NHPCO), a provider organization with which NASW has several
collaborative initiatives.
the connections between quality hospice social work
al requirements, professional standards, and the current state
a think tank meeting was convened by the Social Work
l Association of Social Workers (NASW) Foundation. The
nking Policy, Practice, and Research brought together
rs, researchers, policy-makers and national leaders. The goal
In advance of the symposium, the Social Work Policy Institute pulled together information on
hospice legislation, standards and credentials, continuing education opportunities, the roles and
activities of national organizations involved with hospice, and hospice relevant social work
research and researchers. This information helped to inform the agenda for the meeting and is
included in the Appendix of this report.
d challenges in building comprehensive community-based
Hospice Facts
Source: National Hospice and Palliative Care Organization, 2009
• There are currently more than 4,850 hospice programs in the United States that served 1.45 million people in 2008.
• It is estimated that about 38.5% of deaths are under hospice care.
• Just under half of hospice care organizations are for-profit (46%), half are non-profit (50%), and 4% are operated by the government (e.g.,
U.S. Department of Veterans Affairs).
• Nearly all hospice care is paid for through the Medicare or Medicaid Hospice Benefit, which covers about 89% of hospice patients.
• Social workers have an average caseload of 24.2 patients; nurses have on average 13.3 patients per caseload.
rkers’ roles and intervention practices,
ospice social workers, and
chosocial care in hospice.
ndix A) included representatives from social work research
resenting hospice programs, federal research and regulatory
oundations. The anticipated outcome was the development
state of hospice social work. The symposium agenda (see
ABOUT HOSPICE
Hospice services help patients and their families deal with the complexity of end of life and
include palliative care and comfort services as well as follow-up support to deal with grief and
bereavement. One of the unique qualities of hospice services is that follow-up bereavement
services with the patient’s loved ones after the patient’s death is a core service that is offered.
“hospitium” or guesthouse. It described a house provided for sick persons returning
ent, which used a team approach to professionally administer pain management and
d near London in the 1960s by Cicely Saunders, a British social worker, nurse and
with the first center opening in New Haven, Connecticut (HFA, n.d.; Cicely Saunders
Hospice services may take place in the patient’s own home, in residential hospice programs, and
increasingly as an adjunct to nursing home, hospital and assisted living services. Hospice services
1
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
are provided to persons who are considered to be near the end of life (usually with a life
expectancy of six months or less) who are living with cancer, HIV/AIDS, Alzheimer’s disease, heart
disease, chronic respiratory diseases or other serious medical conditions. Hospice services are
provided to individuals in the context of their families, and are provided to both children and adults.
WHAT IS HOSPICE SOCIAL WORK?
The overall model for hospice services is viewed as a psychos
of the interdisciplinary perspective beyond what a physician a
social worker is a member of the interdisciplinary team whos
psychosocial support to the patient/family unit, define social
problems, and provide both counseling and casework to mee
The federal role in hospice care began in 1982 and was made permanent in 1986, by the Medicare
Hospice Benefit Amendment to the Social Security Act (Title 18, Section 1861, Subsection dd).
The law defines hospice care and the extent to which a patient must be terminally ill in order to
qualify for services. Further, the law stipulates the minimum requirements for services
administered such as core services and the required involvement of a doctor, nurse, pastoral or
other counselor, and a social worker on the interdisciplinary care team (see Appendix D for
excerpt from the Social Security Act). Following passage of the law, the Health Care Financing
Administration (HCFA), which is now called the Centers for Medicare and Medicaid Services
(CMS), developed Conditions of Participation (CoP) which set the minimum federal standards by
which hospice programs must operate.
Hospice Social Worker Roles and Responsibilities
Hospice social workers help develop and implement the inter
goal of delivering the highest quality social services to patient
should aim to ensure that continuity and comprehensive care
workers’ responsibilities, as members of the interdisciplinary
In addition to the federal minimum standards for hospice care which are monitored through a
survey and certification process, national organizations have also developed hospice standards,
accreditation guidelines, credentials and certifications for both programs and hospice professionals.
•
Administering a psychosocial assessment and consulta
•
Providing patient advocacy (on the team, in the progr
In 2008 after an extensive review process, CMS issued the revised CoP. This revision resulted in a
change to the personnel qualifications for social workers providing hospice care that from the
profession’s perspective somewhat weakened the requirement. Whereas the original CoP required
either a bachelor’s or master’s degree in social work, the revised CoP allows a person with a degree
in a field other than social work to serve as a hospice social worker under the supervision and
clinical guidance of an MSW. During the symposium, representatives from CMS cited that one
reason that the end result was a broadened social work personnel qualification in the newly
revised CoP was the lack of a robust body of research that clearly supported the need for
individuals to hold a specific degree in social work in order to ensure quality patient care and
safety. (See Federal Rules for more discussion of CMS and hospice regulations).
•
Educating the family and team on psychosocial issues
•
Working toward fostering team collaboration,
•
Conducting joint visits with other team members to e
•
Arranging group meetings with multiple members of t
team, and
•
Participating in medical social worker on-call rotation
of patients and families.
This current requirement is of concern to the social work community, other service providers and
advocates because it can result in someone providing social work services in hospice that may
have little or no hospice experience or professional training as a social worker. Understanding the
social work role in hospice and fulfilling those functions is a critical aspect of ensuring quality
psychosocial care.
In addition, hospice social workers also:
Federal Social Work Qualifications for Hospice Care
Conditions of Participation 418.114 (b) Standard: Personnel qualifications for certain disciplines:
3. Social worker. A person who—
(i) (A) Has a Master of Social Work (MSW) degree from a school of social work accredited by the Council on Social Work Education and
one year of social work experience in a healthcare setting; or
(B) Has a baccalaureate degree in social work from an institution accredited by the Council on Social Work Education; or a
baccalaureate degree in psychology, sociology, or other field related to social work and is supervised by an MSW as described in
paragraph (b)(3)(i)(A) of this section; and
(ii) Has one year of social work experience in a healthcare setting; or
(iii) Has a baccalaureate degree from a school of social work accredited by the Council on Social Work Education, is employed by the
hospice before December 2, 2008, and is not required to be supervised by an MSW” (CMS, 2009, p.32218).
SOCIAL WORK POLICY INSTITUTE
•
Maintain appropriate documentation in the hospice p
•
Attend weekly team meetings for patient chart review
•
Participate in training and in-service education,
•
Assist in developing and coordinating relations betwe
medical/health care services, and
•
Facilitate bereavement group activities.
Social workers provide a critical element to achieving the hos
insight to the patient’s, caregivers’, and/or families’ psychosoc
to both prevent and cope with crisis and deal with issues as th
Code of Ethics and NASW’s Standards for Practice in End-of
to act as an advocate for the patient and family members and
developing treatment plans that work to meet the biological,
of both the patient and family. Social workers must engage th
and at times other outside resources and supports, to help de
3
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idered to be near the end of life (usually with a life
o are living with cancer, HIV/AIDS, Alzheimer’s disease, heart
r other serious medical conditions. Hospice services are
of their families, and are provided to both children and adults.
WHAT IS HOSPICE SOCIAL WORK?
The overall model for hospice services is viewed as a psychosocial model, valuing the importance
of the interdisciplinary perspective beyond what a physician and nurse might provide. A hospice
social worker is a member of the interdisciplinary team whose primary function is to provide
psychosocial support to the patient/family unit, define social service goals for alleviating identified
problems, and provide both counseling and casework to meet the established service goals.
in 1982 and was made permanent in 1986, by the Medicare
ocial Security Act (Title 18, Section 1861, Subsection dd).
extent to which a patient must be terminally ill in order to
tipulates the minimum requirements for services
d the required involvement of a doctor, nurse, pastoral or
on the interdisciplinary care team (see Appendix D for
Following passage of the law, the Health Care Financing
w called the Centers for Medicare and Medicaid Services
cipation (CoP) which set the minimum federal standards by
.
Hospice Social Worker Roles and Responsibilities
Hospice social workers help develop and implement the interdisciplinary plan of care with the
goal of delivering the highest quality social services to patients and families. This plan of care
should aim to ensure that continuity and comprehensive care are provided. Hospice social
workers’ responsibilities, as members of the interdisciplinary team include:
andards for hospice care which are monitored through a
nal organizations have also developed hospice standards,
nd certifications for both programs and hospice professionals.
•
Administering a psychosocial assessment and consultation,
•
Providing patient advocacy (on the team, in the program, in the community),
cess, CMS issued the revised CoP. This revision resulted in a
for social workers providing hospice care that from the
akened the requirement. Whereas the original CoP required
n social work, the revised CoP allows a person with a degree
rve as a hospice social worker under the supervision and
the symposium, representatives from CMS cited that one
dened social work personnel qualification in the newly
body of research that clearly supported the need for
n social work in order to ensure quality patient care and
cussion of CMS and hospice regulations).
•
Educating the family and team on psychosocial issues, family and group dynamics,
•
Working toward fostering team collaboration,
•
Conducting joint visits with other team members to enhance care,
•
Arranging group meetings with multiple members of the family, facility, and hospice care
team, and
•
Participating in medical social worker on-call rotation/schedule in order to meet the needs
of patients and families.
n to the social work community, other service providers and
eone providing social work services in hospice that may
professional training as a social worker. Understanding the
ng those functions is a critical aspect of ensuring quality
In addition, hospice social workers also:
ations for Hospice Care
dard: Personnel qualifications for certain disciplines:
rom a school of social work accredited by the Council on Social Work Education and
thcare setting; or
om an institution accredited by the Council on Social Work Education; or a
gy, or other field related to social work and is supervised by an MSW as described in
•
Maintain appropriate documentation in the hospice patient chart,
•
Attend weekly team meetings for patient chart review,
•
Participate in training and in-service education,
•
Assist in developing and coordinating relations between the hospice agency and outside
medical/health care services, and
•
Facilitate bereavement group activities.
Social workers provide a critical element to achieving the hospice care mission by providing
insight to the patient’s, caregivers’, and/or families’ psychosocial needs, and are essential in helping
to both prevent and cope with crisis and deal with issues as the illness progresses. The NASW
Code of Ethics and NASW’s Standards for Practice in End-of-Life Care call hospice social workers
to act as an advocate for the patient and family members and to strive to include them in
developing treatment plans that work to meet the biological, social, emotional, and spiritual needs
of both the patient and family. Social workers must engage the interdisciplinary team, the family,
and at times other outside resources and supports, to help develop a comprehensive plan of care
healthcare setting; or
social work accredited by the Council on Social Work Education, is employed by the
t required to be supervised by an MSW” (CMS, 2009, p.32218).
3
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that minimizes unmet needs. Furthermore, social workers must also seek to understand the
treatment philosophies and motivations of other disciplines in developing plans of care.
CURRENT STATUS OF HOSPICE SOCIA
Hospice Social Worker’s Clinical Responsibilities1
Research about hospice by social workers cuts across three m
workers’ roles in hospice care settings; provides the social wo
and interventions; and identifies issues related to the educatio
workers. Social work research about hospice care brings a cri
depth and meaning to our understanding of these services.
• Assessment:
◊ Physical
◊ Social network, family
◊ Psychosocial
◊ Cultural and spiritual
◊ Financial and legal
◊ End of Life “Needs”
◊ Home and environment safety
◊ Protective issues- abuse and neglect (physical, sexual, fiduciary)
Dual Pathways of Social Work Research
• PATHWAY ONE relates to the expertise and perspective on clients, systems, ethics,
work researcher brings to research questions.
• PATHWAY TWO relates more specifically to research on the development and imp
used by social workers.
• Interventions
◊ Specific symptom relief (interventions for fear, grief, depression, anger, pain. etc.)
◊ Patient and family education
◊ Community and internal resources and referrals; including governmental benefits
◊ Discharge planning
◊ Assistance in securing documents
◊ Patient and family advocacy
◊ Identification of abuse and neglect
◊ Bereavement care
Up to now there has been no rigorous systematic review of h
are few studies that specifically examine the effectiveness of h
following provides an overview of recent research by social w
relevant topics (See Appendix K for full citations).2 It should
systematic in its development and therefore may exclude som
topics and/or authors.
Research on the role of social workers in hospice explores:
• Education and interventions for pediatric patients, siblings and for children of adult patients
• Social workers provide to the team:
◊ Psychosocial consultation,
◊ Patient advocacy —on the team, in the program, in the community
◊ Education re: psychosocial issues/family and group dynamics
◊ Care Plan Development—-Team meeting participation
◊ Joint visits with other team members to enhance care
◊ Group meetings (patient, family, facility, hospice team, etc.).
•
Techniques of assessment (Reese, Raymer, Orloff, Ger
Wise-Wright & Huber, 2006).
•
The nature of roles of social workers in various end-o
hospital palliative care, home hospice, prison hospice
Wright, 2006; Lawson, 2007).
•
Outcomes of social workers involvement in specific in
hospice service delivery, e.g., assessment, treatment, b
•
Assessing client and caregiver satisfaction with social
Doherty & Deweaver, 2004).
Research on perspectives about social workers’ roles consider
1
2
Prepared by Beckwith and Fried for presentation at the Hospice Symposium
SOCIAL WORK POLICY INSTITUTE
5
•
Addressing ethical issues of care such as “death with
Hedlund & Soule, 2006).
•
Managing ethical issues: Consider medical condition,
terminality (Csikai, 2004).
•
Philosophies on palliative and end-of-life care from on
social workers v. nursing home social workers (Becke
This review is based on the presentation by Deborah Waldrop at the SWPI Hospic
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more, social workers must also seek to understand the
ns of other disciplines in developing plans of care.
CURRENT STATUS OF HOSPICE SOCIAL WORK RESEARCH
nical Responsibilities1
Research about hospice by social workers cuts across three major areas. It evaluates social
workers’ roles in hospice care settings; provides the social work perspective on hospice practices
and interventions; and identifies issues related to the education and training of hospice social
workers. Social work research about hospice care brings a critical perspective that helps to add
depth and meaning to our understanding of these services.
Dual Pathways of Social Work Research
• PATHWAY ONE relates to the expertise and perspective on clients, systems, ethics, cultural competence, and communities that a social
work researcher brings to research questions.
• PATHWAY TWO relates more specifically to research on the development and implementation and effectiveness of specific interventions
used by social workers.
physical, sexual, fiduciary)
s for fear, grief, depression, anger, pain. etc.)
Up to now there has been no rigorous systematic review of hospice social work research and there
are few studies that specifically examine the effectiveness of hospice social work practice. The
following provides an overview of recent research by social workers and about social work
relevant topics (See Appendix K for full citations).2 It should be noted that this analysis is not
systematic in its development and therefore may exclude some related and pertinent research
topics and/or authors.
nd referrals; including governmental benefits
Research on the role of social workers in hospice explores:
ts, siblings and for children of adult patients
e program, in the community
mily and group dynamics
ng participation
to enhance care
lity, hospice team, etc.).
•
Techniques of assessment (Reese, Raymer, Orloff, Gerbino, Valade, Dawson, Butler,
Wise-Wright & Huber, 2006).
•
The nature of roles of social workers in various end-of-life and palliative care settings, e.g.,
hospital palliative care, home hospice, prison hospice, etc. (Bradsen, 2005; Bronstein &
Wright, 2006; Lawson, 2007).
•
Outcomes of social workers involvement in specific interventions and certain stages of
hospice service delivery, e.g., assessment, treatment, bereavement (Reese & Raymer, 2004).
•
Assessing client and caregiver satisfaction with social work (Archer & Boyle, 1999;
Doherty & Deweaver, 2004).
Research on perspectives about social workers’ roles considers:
2
at the Hospice Symposium
5
•
Addressing ethical issues of care such as “death with dignity” practices in Oregon (Miller,
Hedlund & Soule, 2006).
•
Managing ethical issues: Consider medical condition, involvement of family, denial of
terminality (Csikai, 2004).
•
Philosophies on palliative and end-of-life care from oncology social workers vs. hospice
social workers v. nursing home social workers (Becker, 2004).
This review is based on the presentation by Deborah Waldrop at the SWPI Hospice Symposium.
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•
The ambiguity of dying and the decisions behind dyin
(Bern-Klug, 2008).
Strengths and challenges social workers face in using collaboration in service delivery
(Parker Oliver, Bronstein, & Kurzejeski, 2005; Parker Oliver & Peck, 2006).
•
“Possible” or “ambiguous dying” among nursing hom
Bern-Klug, 2006).
Interfacing with caregivers about pain management (Parker Oliver, Wittenberg-Lyles,
Washington, & Sehrawat, 2009).
•
How older adult dyads’ negotiate the ambiguity of dy
life’s end (Gardner, 2008).
Increasing patient and family involvement with interdisciplinary teams (Parker Oliver,
Porock, Demiris, & Courtney, 2005).
•
Short hospice utilization: Can this be enough? (Waldr
•
The relationship between terminal restlessness with p
& Faul, 2005).
Research on social workers’ roles as a member of the interdisciplinary team addresses:
•
•
•
Research on family and caregiver involvement examines:
•
What, if any, unmet needs the families may have (Arnold, Martin, Griffith, Person &
Graham, 2006).
•
Conflict within the family at life’s end (Kramer, Boelk, & Auer, 2006).
•
The roles of family caregivers in decision-making, assistance with daily living activities,
and medication management (Hauser & Kramer, 2004).
•
Coping with end-of-life transitions in caregiving, including comprehending terminality,
near-acute care, executive functioning, and final decision making (Waldrop, Kramer,
Skretny, Milch & Finn, 2005).
•
Relationships between high levels of caregiver grief and Alzheimer’s Disease (Sanders, Ott,
Kelber, & Noonan, 2008).
•
Psychosocial stressors in end-of-life caregiving (Waldrop, Milch & Skretny, 2005).
•
Consideration of the family’s concerns and values in determining care (Csikai, 2004).
Research on the quality of dying in long-term care facilities a
•
Family perspectives on what defines a good death in a
examined include staffing adequacy, training, consiste
empathy, hospice contributions (Munn & Zimmerma
Williams, Biola & Zimmerman, 2008),
•
The under-utilization of hospice services in long term
Rachlin, 2007).
•
How comfort care should be defined (Waldrop & Kir
Social work research evaluates the experiences of diverse and
are facing issues of advanced illness and end -of-life care by:
•
Investigating what matters to older African American
their decisions to complete or not complete advanced
& Bradley. (2005).
Research that tests and examines interventions includes:
•
•
•
•
Exploring racial variations in end-of-life decision-mak
Study of the FACES Project, a tool to assess caregiver strain (Townsend, Ishier, Vargo,
Shapiro, Pitorak & Matthews, 2007.
•
Examining the specific social stressors and facilitators
populations who reside there (Francoeur, Payne, Rave
Use of formally structured social work visits to accomplish advanced care planning at
home (Ratner, Norlander & McSteen, 2001).
•
Examining caregivers experiences with hospice and pa
(Sanders, Butcher, Swails, & Power, 2009).
•
Identifying factors that contribute to the under-utiliza
Americans (Washington, Bickel-Swenson, & Stephens
Lessons learned from “model” programs (Kramer & Auer, 2005).
Social work research also seeks to understand a patient’s perspective on the process of dying by
assessing:
•
How patients seek control over decision-making, independence, mental attitude, daily
living activities, instrumental daily living activities, and relationships (Schroepfer, Noh &
Kavanaugh, 2009).
•
The reasons people desire to hasten death, e.g., poor quality of life and concern for
suffering (Arnold, Atkin, Person & Griffith, 2004).
•
How conflictual social support systems predict the consideration of hastening death
(Schroepfer, 2008).
With the field of hospice care continually expanding, research
competent social workers for careers in hospice. Research on
hospice social workers:
•
SOCIAL WORK POLICY INSTITUTE
7
Stresses the need to expand curriculum in MSW progr
social workers in hospice care through education and
& Black, 2006).
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•
The ambiguity of dying and the decisions behind dying (is dying allowed v. contested?)
(Bern-Klug, 2008).
l workers face in using collaboration in service delivery
Kurzejeski, 2005; Parker Oliver & Peck, 2006).
•
“Possible” or “ambiguous dying” among nursing home residents (Bern-Klug, 2005;
Bern-Klug, 2006).
out pain management (Parker Oliver, Wittenberg-Lyles,
9).
•
How older adult dyads’ negotiate the ambiguity of dying and the search for meaning at
life’s end (Gardner, 2008).
•
Short hospice utilization: Can this be enough? (Waldrop & Rinfrette, 2009).
•
The relationship between terminal restlessness with psychosocial & spiritual distress (Head
& Faul, 2005).
member of the interdisciplinary team addresses:
nvolvement with interdisciplinary teams (Parker Oliver,
2005).
olvement examines:
families may have (Arnold, Martin, Griffith, Person &
Research on the quality of dying in long-term care facilities analyzes:
fe’s end (Kramer, Boelk, & Auer, 2006).
•
Family perspectives on what defines a good death in a long term care setting. Factors
examined include staffing adequacy, training, consistency, facility environment, staff
empathy, hospice contributions (Munn & Zimmerman, 2006; Munn, Dobbs, Meier,
Williams, Biola & Zimmerman, 2008),
•
The under-utilization of hospice services in long term care (Chapin, Gordon, Landry &
Rachlin, 2007).
•
How comfort care should be defined (Waldrop & Kirkendall, 2009).
in decision-making, assistance with daily living activities,
Hauser & Kramer, 2004).
ions in caregiving, including comprehending terminality,
ctioning, and final decision making (Waldrop, Kramer,
vels of caregiver grief and Alzheimer’s Disease (Sanders, Ott,
Social work research evaluates the experiences of diverse and under-represented populations who
are facing issues of advanced illness and end -of-life care by:
of-life caregiving (Waldrop, Milch & Skretny, 2005).
•
Investigating what matters to older African Americans at life’s end and what influences
their decisions to complete or not complete advanced directives (Bullock, McGraw, Blank
& Bradley. (2005).
oncerns and values in determining care (Csikai, 2004).
rventions includes:
•
Exploring racial variations in end-of-life decision-making (Hopp & Duffy, 2000).
tool to assess caregiver strain (Townsend, Ishier, Vargo,
2007.
•
Examining the specific social stressors and facilitators in the inner city and with minority
populations who reside there (Francoeur, Payne, Raveis & Shim, 2007).
ial work visits to accomplish advanced care planning at
McSteen, 2001).
•
Examining caregivers experiences with hospice and patients who have end-stage dementia
(Sanders, Butcher, Swails, & Power, 2009).
•
Identifying factors that contribute to the under-utilization of hospice services by African
Americans (Washington, Bickel-Swenson, & Stephens, 2008).
programs (Kramer & Auer, 2005).
derstand a patient’s perspective on the process of dying by
With the field of hospice care continually expanding, research also addresses the efforts to prepare
competent social workers for careers in hospice. Research on the education and training of
hospice social workers:
r decision-making, independence, mental attitude, daily
daily living activities, and relationships (Schroepfer, Noh &
•
asten death, e.g., poor quality of life and concern for
on & Griffith, 2004).
Stresses the need to expand curriculum in MSW programs and better define the role of
social workers in hospice care through education and training (Huff, Weisenfluh, Murphy
& Black, 2006).
rt systems predict the consideration of hastening death
7
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
•
Identifies the need for focus on spiritual care; role conflict and ambiguity (Wesley, Tunney
& Duncan, 2004).
FEDERAL RULES AND PRIORITIES
•
Analyzes end-of-life care content in textbooks (Kramer, Pacourek, Hovland & Scafe, 2003)
Revising and Implementing the Conditions of Participatio
•
Identifies social work competencies in palliative and end-of-life care (Gwyther, Altilio,
Blacker, Christ, Csikai, Hooyman, Kramer, Linton, Raymer & Howe, 2005).
•
Examines end-of-life content in conferences (Moon & Cagle, 2009).
The Centers for Medicare and Medicaid Services (CMS) regu
States. Hospice providers and suppliers must be Medicare-cer
hospice services that they administer to Medicare beneficiarie
Survey Agency. To be Medicare-certified, hospice agencies mu
Participation (CoPs).
Agenda Development for Hospice Research: A Look to the Future
It took approximately ten years to fully revise the Hospice Co
within CMS, the Department of Health and Human Services
Management and Budget (OMB) as well as input from the pu
prescribed public comment period. The final rule was publish
2008, and implementation of the new CoPs began in Decemb
Bern-Klug, Kramer, and Linder (2005) and Kramer, Bern-Klug and Francouer (2005) have
proposed a national social work research agenda related to palliative and end-of-life care. This
agenda highlights areas for research that align with the social work professions’ mission and
values. The imperative to develop the agenda emerged from the 2002 and 2005 Social Work
Summits on End-of-Life and Palliative Care, organized by the Social Work Leadership
Development Awards Program, sponsored by the Open Society Institute’s Project on Death in
America (PDIA), a project of the Soros Foundation. The Leadership Development Program
supported 42 scholars and led to the creation of the Social Work Hospice and Palliative Care
Network (SWHPN) (www.swhpn.org).
A wide variety of comments regarding the need and feasibilit
social workers was discussed in CMS’s publication of the fina
5, 2008. CMS’s response indicated several reasons for a broa
noted that because not all states administer equivalent social
requirements CoP defers to states’ regulations for social work
licensure. All hospice social workers must be licensed in acco
requirements of the state(s) in which they practice. Comment
potential need to provide waivers to rural hospice agencies be
and qualified social workers if the personnel qualifications w
Medicaid Programs, 2008). CMS stated that it encourages ho
qualified social workers possible, but expressed that because
hospice industry on this issue,” personnel qualifications could
rewrite of the CoP (Medicare and Medicaid Programs, 2008,
Palliative and End of Life Care Research Agenda
• Continuity, gaps, fragmentation, transitions in care
• Diversity and health care disparities
• Financing
• The policy/practice nexus
• Mental health concerns and services
• Communication
• Individual and family care needs and experiences
• Quality of care
• Decision-making
• Grief and bereavement
• Pain, symptom management
• Curriculum
Highlights of the Revised CoP
An important theme of the revised CoPs is the use of a patien
reinforce the interdisciplinary team approach and seek to adv
service improvement. Highlights of the provisions of the revis
(For more detail on the revised CoPs see Appendix E).
In addition to the social work research agenda, national organizations, such as the NHPCO
(2004) and the Hospice and Palliative Nurses Association (HPNA) have released agendas focusing
on various elements of care and service administration for palliative and end-of-life care. The
efforts of social work researchers contribute both to the discipline-specific and interdisciplinary
research agendas. In the coming year, the effort to increase interdisciplinary research will result in
the release of a collaborative research agenda from the American Academy of Hospice and
Palliative Medicine (AAHPM), NHPCO, HPNA, and the Social Work Hospice and Palliative Care
Network (SWHPN).
John A. Hartford Foundation’s
The Geriatric Social Work Initiative www.gswi.org
Launched in 1999, the John A. Hartford Foundation’s Geriatric Social Work Initiative has 2 key programs that have helped to support hospice
and end-of-life focused research by social workers. The Hartford Faculty Scholars Program supports early career social work researchers
interested in aging. The Hartford Doctoral Fellows Program provides dissertation support to those social work doctoral students examining
gerontology relevant topics. Appendix O provides information on Hartford Scholars and Fellows who have pursued hospice-relevant studies.
3
SOCIAL WORK POLICY INSTITUTE
3
9
•
The establishment of patient’s rights CoP in hospice c
reporting violations of those rights.
•
The requirement of an initial assessment of the patien
hospice care and a comprehensive assessment within 5
hospice care.
•
The creation of interdisciplinary groups (IDG) that in
social worker, and a pastoral or other counselor; all o
the patient’s and family’s needs during treatment.
•
The requirement that the IDG create a comprehensive
regularly reviewed and revised to best meet the patien
Based on presentations made by CMS staff Mary Rossi-Coajou and Danielle Shea
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n spiritual care; role conflict and ambiguity (Wesley, Tunney
FEDERAL RULES AND PRIORITIES
ent in textbooks (Kramer, Pacourek, Hovland & Scafe, 2003)
Revising and Implementing the Conditions of Participation
ncies in palliative and end-of-life care (Gwyther, Altilio,
man, Kramer, Linton, Raymer & Howe, 2005).
The Centers for Medicare and Medicaid Services (CMS) regulates hospice programs in the United
States. Hospice providers and suppliers must be Medicare-certified to be paid by Medicare for the
hospice services that they administer to Medicare beneficiaries. This is enforced by the State
Survey Agency. To be Medicare-certified, hospice agencies must meet the established Conditions of
Participation (CoPs).
n conferences (Moon & Cagle, 2009).
Research: A Look to the Future
It took approximately ten years to fully revise the Hospice CoP. The process required approval
within CMS, the Department of Health and Human Services (DHHS), and the Office of
Management and Budget (OMB) as well as input from the public that was provided through a
prescribed public comment period. The final rule was published in the Federal Register in June
2008, and implementation of the new CoPs began in December 2008.
) and Kramer, Bern-Klug and Francouer (2005) have
rch agenda related to palliative and end-of-life care. This
hat align with the social work professions’ mission and
agenda emerged from the 2002 and 2005 Social Work
e Care, organized by the Social Work Leadership
ored by the Open Society Institute’s Project on Death in
s Foundation. The Leadership Development Program
creation of the Social Work Hospice and Palliative Care
).
A wide variety of comments regarding the need and feasibility for higher qualifications for hospice
social workers was discussed in CMS’s publication of the final rule in the Federal Register on June
5, 2008. CMS’s response indicated several reasons for a broadened personnel requirement. It
noted that because not all states administer equivalent social work licensure, the personnel
requirements CoP defers to states’ regulations for social workers to dictate requirements for
licensure. All hospice social workers must be licensed in accordance with the licensure
requirements of the state(s) in which they practice. Commenters also raised concerns about the
potential need to provide waivers to rural hospice agencies because of limited access to supervision
and qualified social workers if the personnel qualifications were increased (Medicare and
Medicaid Programs, 2008). CMS stated that it encourages hospice agencies to employ the most
qualified social workers possible, but expressed that because “no standard or consensus in the
hospice industry on this issue,” personnel qualifications could not be raised during the present
rewrite of the CoP (Medicare and Medicaid Programs, 2008, p. 32160).
are Research Agenda
re
3
• Individual and family care needs and experiences
• Quality of care
• Decision-making
• Grief and bereavement
• Pain, symptom management
• Curriculum
Highlights of the Revised CoP
An important theme of the revised CoPs is the use of a patient-centered focus. The CoPs also
reinforce the interdisciplinary team approach and seek to advance quality measurement and
service improvement. Highlights of the provisions of the revisions to the CoPs are noted below.
(For more detail on the revised CoPs see Appendix E).
h agenda, national organizations, such as the NHPCO
Nurses Association (HPNA) have released agendas focusing
e administration for palliative and end-of-life care. The
tribute both to the discipline-specific and interdisciplinary
the effort to increase interdisciplinary research will result in
agenda from the American Academy of Hospice and
CO, HPNA, and the Social Work Hospice and Palliative Care
’s
itiative www.gswi.org
s Geriatric Social Work Initiative has 2 key programs that have helped to support hospice
he Hartford Faculty Scholars Program supports early career social work researchers
rogram provides dissertation support to those social work doctoral students examining
formation on Hartford Scholars and Fellows who have pursued hospice-relevant studies.
3
9
•
The establishment of patient’s rights CoP in hospice care settings and a method for
reporting violations of those rights.
•
The requirement of an initial assessment of the patient within 48 hours of the election of
hospice care and a comprehensive assessment within 5 calendar days of the election of
hospice care.
•
The creation of interdisciplinary groups (IDG) that include a doctor, a registered nurse, a
social worker, and a pastoral or other counselor; all of which must meet to assess and meet
the patient’s and family’s needs during treatment.
•
The requirement that the IDG create a comprehensive plan of care for the patient that is
regularly reviewed and revised to best meet the patient’s needs and goals.
Based on presentations made by CMS staff Mary Rossi-Coajou and Danielle Shearer at the Symposium
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•
The development and implementation of methods for monitoring quality/performance and
identifying opportunities for improvement.
•
The definition of personnel qualifications for various members of the IDG, including social
workers.
HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
ACCREDITATION AND PROFESSIONA
PRACTICE OF HOSPICE CARE
Accreditation of Hospice Programs
Quality Assessment and Performance Improvement (QAPI)
CMS has granted deeming authority to the Joint Commis
Accreditation Program (CHAP), and the Accreditation Co
(See Appendix G for more details of these programs). Eac
accreditation to home care and hospice programs and the
standards established by CMS and the established standa
A key focus for CMS is the effort to enhance the quality of care for hospice patients and their
families. This is to be accomplished through provisions for quality assessment and performance
improvement (QAPI) that are incorporated into the newly implemented Conditions of
Participation.
National Hospice and Palliative Care Organization (NHP
www.nhpco.org/i4a/pages/Index.cfm?pageID=4900
QAPI operates at both a patient level and a hospice agency level, requiring data collection at both
levels to assess quality. For the patient level portion of QAPI a hospice collects data on an
individual patient’s assessment/reassessment, care plan, and clinical notes with the goal of
improving patient outcomes. The hospice level portion of QAPI looks at the clinically-focused
aggregate data of the patients, as well as data from other sources such as client satisfaction data,
administrative data, marketing data, profitability data, and data on fundraising for the entire
hospice agency with the goal of improving clinical and non-clinical operations. Data is used to
identify opportunities for improvement, and demonstrate performance improvement in one or
more areas. The goal is to use data in conjunction with clinical and managerial expertise and
experience to drive decision-making at the patient level and hospice agency level. CMS is currently
developing quality measures to comprehensively evaluate hospice services (See Appendix F).
NHPCO provides a framework of standards for both clin
hospice organizations to have a means for measuring, eva
care. The standards consist of ten components that seek t
and families by focusing on patient and family-centered c
striving for clinical excellence, ensuring inclusion and acc
comprehensive quality service evaluations (see NHPCO S
Appendix H).
National Association of Social Workers Standards for Pa
www.socialworkers.org/practice/bereavement/standar
The methods and the quality of record keeping and reporting by hospice social workers and other
clinicians can positively impact a hospice’s ability to measure quality in a consistent and
meaningful manner. Lack of access to electronic clinical records and non-social work-focused
electronic record formats can, however, diminish the quality of records social workers provide to
interdisciplinary care files.
The NASW has established standards for social work
and end-of-life care. These standards expand upon th
a framework for roles and responsibilities of a hospic
ethics and values, required knowledge for practice, as
treatment planning, attitude and self-awareness, empo
quality documentation, interdisciplinary teamwork, c
education, and supervision, leadership, and training (
Appendix I).
National Association of Social Workers Credentials
Advanced Certified Hospice and Palliative Social Wo
www.socialworkers.org/credentials/credentials/chpsw
Certified Hospice and Palliative Social Worker (CHP
www.socialworkers.org/credentials/credentials/chpsw
The premier credentials for social workers in hospice
a BSW and MSW level credential jointly with the Nat
Organization (NHPCO). These credentials were desig
and palliative care for social workers who meet natio
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entation of methods for monitoring quality/performance and
mprovement.
ACCREDITATION AND PROFESSIONAL STANDARDS FOR
PRACTICE OF HOSPICE CARE
alifications for various members of the IDG, including social
Accreditation of Hospice Programs
nce Improvement (QAPI)
CMS has granted deeming authority to the Joint Commission, the Community Health
Accreditation Program (CHAP), and the Accreditation Commission for Health Care (ACHC)
(See Appendix G for more details of these programs). Each organization administers
accreditation to home care and hospice programs and the deeming is based on the minimum
standards established by CMS and the established standards of the group.
nhance the quality of care for hospice patients and their
hrough provisions for quality assessment and performance
rated into the newly implemented Conditions of
National Hospice and Palliative Care Organization (NHPCO) Standards for Practice
www.nhpco.org/i4a/pages/Index.cfm?pageID=4900
and a hospice agency level, requiring data collection at both
level portion of QAPI a hospice collects data on an
sment, care plan, and clinical notes with the goal of
pice level portion of QAPI looks at the clinically-focused
as data from other sources such as client satisfaction data,
profitability data, and data on fundraising for the entire
oving clinical and non-clinical operations. Data is used to
nt, and demonstrate performance improvement in one or
conjunction with clinical and managerial expertise and
t the patient level and hospice agency level. CMS is currently
ehensively evaluate hospice services (See Appendix F).
NHPCO provides a framework of standards for both clinical and non-clinical areas of care for
hospice organizations to have a means for measuring, evaluating, and improving all areas of
care. The standards consist of ten components that seek to increase quality of care for patients
and families by focusing on patient and family-centered care, adhering to ethical practice,
striving for clinical excellence, ensuring inclusion and access, and regularly conducting
comprehensive quality service evaluations (see NHPCO Standards for Practice Details,
Appendix H).
National Association of Social Workers Standards for Palliative and End-of-Life Care
www.socialworkers.org/practice/bereavement/standards/default.asp
d keeping and reporting by hospice social workers and other
pice’s ability to measure quality in a consistent and
electronic clinical records and non-social work-focused
er, diminish the quality of records social workers provide to
The NASW has established standards for social workers practicing in the field of palliative
and end-of-life care. These standards expand upon the NASW Code of Ethics and provide
a framework for roles and responsibilities of a hospice social worker. Standards discuss
ethics and values, required knowledge for practice, assessment of clients, intervention and
treatment planning, attitude and self-awareness, empowerment and advocacy, proper and
quality documentation, interdisciplinary teamwork, cultural competence, continuing
education, and supervision, leadership, and training (see a summary of NASW Standards,
Appendix I).
National Association of Social Workers Credentials
Advanced Certified Hospice and Palliative Social Worker (ACHP-SW)
www.socialworkers.org/credentials/credentials/chpsw.asp
Certified Hospice and Palliative Social Worker (CHP-SW)
www.socialworkers.org/credentials/credentials/chpsw.asp
The premier credentials for social workers in hospice and palliative care, NASW developed
a BSW and MSW level credential jointly with the National Hospice and Palliative Care
Organization (NHPCO). These credentials were designed by social work leaders in hospice
and palliative care for social workers who meet national standards of excellence.
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
CONCLUSIONS
•
Addressing tensions between different team members
resolving disagreements related to assessing and treati
Social Workers’ Roles in Hospice Care
•
Encouraging all team members to provide quality doc
developing, implementing, and evaluating care plans.
Social Work Expertise is Essential in End-of-Life Care
Working with individuals and families through transitions during life’s final chapter, including
hospice, requires competent social workers with requisite knowledge, skills and values.
Encouraging social workers toward careers in end-of-life care necessitate that social work
education programs at both the BSW and MSW level offer specialized and infused curriculum as
well as field placements and collaborations with community-based programs. Continuing
professional development is also critical.
Workload and Organizational Supports May be Challenging
As in several other fields of social work practice, hospice soci
caseloads, low salaries, limited access to training, lack of soci
administrative support. As noted in Assuring the Sufficiency
Study of Licensed Social Workers - Special Report on Social
(NASW, 2006), social workers in health care settings have ca
complexity. This is occurring as resources and supports are d
social workers, the study found that continuing education is
higher than in other healthcare settings and salaries are the lo
Roles Need On-Going Clarification and Advocacy
Although the social worker’s roles in hospice and the importance of having professionally trained
social workers deliver such services may be well articulated within the profession, it is not as clear
to policy makers, hospice administrators, and other professions involved in hospice care. This
unclear role definition is compounded by the increasing medicalization of hospice which may limit
social workers’ opportunities to fully assess and treat the psychosocial needs of the patient and
their family.
Documentation
CMS surveys of hospice programs exposed some challenges t
providing thorough, timely, and quality documentation pertin
workers are often out in the field and may have limited acces
electronic case files do not have space to easily note social wo
care. Lastly, some social workers may default to the nurse, th
about the patient’s plan of care. Without this quality docume
cannot recognize the valuable work that social workers perfo
Since a number of agencies may provide both hospice and home health services, such agencies
need to be clear that hospice and home health regulations differ. For example, in hospice the social
worker might be the first person to engage with a patient and their family; in home health it is
required that a nurse be at the initial meeting and recommend social work services.
One step to advocate for the documentation of social worker
documentation of services provided over the telephone. For s
not just with the family or the patient, but may also include o
community resources (CR 6440).
Credentials are a Resource to Use
The recent launch of two credentials for hospice social workers (see NASW credentials), offered
through NASW and jointly developed between NASW and NHPCO provide an excellent
opportunity to further clarify and quantify the skills and knowledge required for hospice social
work practice. Encouraging agencies and hospice social workers to pursue the credential and
advocating for hospice agencies to recognize the value of such credentials will be critical.
Clarity of Roles across Different Service Settings
With the expansion of eligibility for hospice services to those
group care and assisted living settings, the hospice social wor
social workers, nurses, or other professionals in the other sett
clear roles and functions, and clear communication channels
members.
Interdisciplinary Team Participation
Social workers should continually strive to be integral members of the interdisciplinary care team
and remain active and engaged in developing and maintaining a patient’s plan of care. The
competencies articulated through NASW standards and credentials as well as the growing research
base provide a strong framework to use in increasing awareness and understanding of social
work’s valuable role in hospice.
Research and Hospice Social Work
There is a growing body of social work research on hospice a
interdisciplinary hospice research (see Annotated Bibliograph
agendas have sought to demonstrate the effectiveness of hosp
review of the research conclusively demonstrates this effective
care and/or the interventions used in practice. The PDIA prog
the Hartford Faculty Scholars and Doctoral Fellows program
visibility for hospice social work research. The launching of t
Life Care & Palliative Care has provided an important venue
While role conflicts are not always the case, in some instances role conflicts do occur – sometimes
between the social worker and the nurse, and in some cases between the social worker and
pastoral counselor or other spiritual/religious provider. Efforts to enhance interdisciplinary team
functioning includes:
•
Holding regular trainings about increasing team functioning and educating each team
member about the responsibilities and perspectives of all the professions in hospice care.
•
Stressing the uniqueness and responsibilities of each team member in providing quality
hospice care.
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are
End-of-Life Care
s through transitions during life’s final chapter, including
rkers with requisite knowledge, skills and values.
areers in end-of-life care necessitate that social work
and MSW level offer specialized and infused curriculum as
tions with community-based programs. Continuing
al.
•
Addressing tensions between different team members and providing a framework for
resolving disagreements related to assessing and treating a patient’s needs.
•
Encouraging all team members to provide quality documentation of their efforts in
developing, implementing, and evaluating care plans.
Workload and Organizational Supports May be Challenging
As in several other fields of social work practice, hospice social workers often struggle with high
caseloads, low salaries, limited access to training, lack of social work supervision, and a lack of
administrative support. As noted in Assuring the Sufficiency of a Frontline Workforce: A National
Study of Licensed Social Workers - Special Report on Social Work Services In Health Care Settings
(NASW, 2006), social workers in health care settings have caseloads that are increasing in size and
complexity. This is occurring as resources and supports are decreasing. Specifically for hospice
social workers, the study found that continuing education is often unavailable; vacancy rates are
higher than in other healthcare settings and salaries are the lowest in hospice.
nd Advocacy
hospice and the importance of having professionally trained
ay be well articulated within the profession, it is not as clear
ors, and other professions involved in hospice care. This
by the increasing medicalization of hospice which may limit
assess and treat the psychosocial needs of the patient and
Documentation
CMS surveys of hospice programs exposed some challenges that social workers experience in
providing thorough, timely, and quality documentation pertinent to a patient’s care. Social
workers are often out in the field and may have limited access to patient clinical records. Many
electronic case files do not have space to easily note social worker-related items for a patient’s
care. Lastly, some social workers may default to the nurse, the case coordinator, to make notes
about the patient’s plan of care. Without this quality documentation, hospices and surveyors alike
cannot recognize the valuable work that social workers perform.
de both hospice and home health services, such agencies
e health regulations differ. For example, in hospice the social
gage with a patient and their family; in home health it is
meeting and recommend social work services.
One step to advocate for the documentation of social workers’ activities is related to
documentation of services provided over the telephone. For social workers, the contacts are often
not just with the family or the patient, but may also include other service providers and/or
community resources (CR 6440).
or hospice social workers (see NASW credentials), offered
between NASW and NHPCO provide an excellent
ntify the skills and knowledge required for hospice social
and hospice social workers to pursue the credential and
ognize the value of such credentials will be critical.
Clarity of Roles across Different Service Settings
With the expansion of eligibility for hospice services to those who are in hospitals, nursing homes,
group care and assisted living settings, the hospice social worker may need to coordinate with
social workers, nurses, or other professionals in the other settings. Efforts must be made to have
clear roles and functions, and clear communication channels with the patient and the family
members.
ve to be integral members of the interdisciplinary care team
eloping and maintaining a patient’s plan of care. The
SW standards and credentials as well as the growing research
se in increasing awareness and understanding of social
Research and Hospice Social Work
There is a growing body of social work research on hospice and social work involvement in
interdisciplinary hospice research (see Annotated Bibliography, Appendix X). Social work research
agendas have sought to demonstrate the effectiveness of hospice social workers, yet no rigorous
review of the research conclusively demonstrates this effectiveness of social workers in hospice
care and/or the interventions used in practice. The PDIA program, participation in SWHPN and
the Hartford Faculty Scholars and Doctoral Fellows programs have provided support and
visibility for hospice social work research. The launching of the Journal of Social Work in End of
Life Care & Palliative Care has provided an important venue for publication of relevant articles.
e case, in some instances role conflicts do occur – sometimes
rse, and in some cases between the social worker and
eligious provider. Efforts to enhance interdisciplinary team
ut increasing team functioning and educating each team
ties and perspectives of all the professions in hospice care.
esponsibilities of each team member in providing quality
13
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
Funding for Hospice Social Work Research
Beyond the pilot research funding still available through the Hartford Scholars and Fellows
program, there is limited research funding available for hospice social work researchers. While the
new health care reform legislation Patient Protection and Affordable Care Act (PPACA (Pub.L.
111-148)includes provisions related to hospice services for children, there is little research by
social workers focused on services to children in hospice.
Interdisciplinary Research
Since hospice is an interdisciplinary team model, interdiscipli
should be used to examine service delivery that can result in o
optimal quality care. Joint research teams that use multiple p
a multi-faceted view of interdisciplinary team functioning, an
challenges.
Only a few social work researchers have been successful in garnering National Institutes of Health
(NIH) funding for their scholarship (e.g., Social Work Principal Investigators Otis-Green,
Parker-Oliver, Schroepfer, Waldrop, and Zimmerman). In most instances, the successful applicants
previously had received support as Hartford Faculty Scholars and/or Hartford Doctoral Fellows,
and may also have attended summer institutes offered to social work researchers to enhance their
skills and success at applying for NIH funding.
Dissemination
Dissemination of research to practitioners is a dilemma in ma
social workers acquire information used in clinical practice fr
published in peer-reviewed journals and is not necessarily or
Enhanced tools for dissemination are needed to get pertinent
practitioners and better use might be made of various on-line
research interpreted for practice.
Although NIH hosted a State of the Science Consensus meeting on End of Life Care in 2004
(http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm), social work research was
not a contributing discipline to this effort. The National Institute on Nursing Research (NINR)
has a lead role in the trans-NIH efforts related to end-of-life care. However, there is no
stand-alone review group that reviews grant submissions on hospice and end-of-life care nor is
there an NIH effort to particularly develop the research careers of end-of-life and hospice
researchers. This is a gap identified across multiple disciplines.
Addressing Disparities in Access to and Use of Hospice Care
There are demographic disparities in both the hospice workfo
have access to, and/or receive hospice care. Social workers sh
demographic disparities in both the worker and patient popu
research to develop new methods for reaching these underser
more diverse workforce. As one step to give greater visibility
preconference that was held in conjunction with the annual A
included the session Understanding Diversity: How culturally
and palliative care with presenters Karen Bullock, Karen Kay
Research/Practice Disconnect
Another challenge identified at the symposium included the oft identified problem of the
disconnect between the questions that researchers might seek to ask and the concerns that
practitioners have in regard to practice and/or patient care. Practitioner involvement in research
development can help to create study questions that are relevant for practice. Incorporating the
experiences of patients and families within hospice research is also important. However patient
involvement can be difficult given the deteriorating physical and mental health of the patient.
Hospice Social Work/Policy Connections
The symposium highlighted the value of building and strengt
social work and federal agencies in regard to social work’s ro
from CMS were actively engaged in the think tank and value
familiar with the social work researchers and practitioners w
There is the potential for forming new exchanges among fede
practitioners, and national organizations with the goal of adv
delivery and the role of various members of the interdisciplin
regularly engaged with representatives from NHPCO and oth
would be extremely beneficial to enhance the involvement of
organizations with CMS and other federal agencies. This wou
well as outcomes from social work research.
Creating research that is more relevant and applicable to practice will encourage hospice social
workers to value research in practice and help to legitimize the field of social work as driven by
evidenced-based interventions.
Research Design and Methods
Use of multiple methods of research is important in order to expand and better define our
knowledge on the role and interventions of hospice social work. Qualitative research methods can
help to give insight about quality indicators and better understand the nuances of hospice.
Quantitative research techniques will help to establish the effectiveness of hospice social workers
and the interventions used to treat hospice patients and families. Further research will also help to
identify gaps and challenges in care.
CMS’s development of new quality measures is a prime area
and researchers to contribute. Social work ethics and standar
CMS goals of providing patient-centered and quality care. Th
provide valuable insight to quality indicators, specifically in e
and outcomes of hospice care.
Future research on social workers in hospice care would also benefit from considering elements of
cost effectiveness. Cost effectiveness research can focus at multiple levels including examining
outcomes related to the well-being of the family and loved ones after the patient dies.
Since the National Institutes of Health (NIH) already has a p
(see http://obssr.od.nih.gov/pdf/SWR_Report.pdf) highlightin
to build hospice social work research is relevant to multiple i
This would include the National Cancer Institute, the Nation
Building a sufficient body of research so that there is opportunity to complete systematic reviews
will also help build the evidence-base for hospice social work services. Entities like the Campbell
Collaboration (www.campbellcollaboration.org) with active involvement of social work
researchers can provide a venue for undertaking such a rigorous and transparent review.
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
search
available through the Hartford Scholars and Fellows
ding available for hospice social work researchers. While the
ient Protection and Affordable Care Act (PPACA (Pub.L.
o hospice services for children, there is little research by
children in hospice.
Interdisciplinary Research
Since hospice is an interdisciplinary team model, interdisciplinary research is a critical avenue that
should be used to examine service delivery that can result in outcomes and insights to achieve
optimal quality care. Joint research teams that use multiple practice philosophies can also provide
a multi-faceted view of interdisciplinary team functioning, and could help solve current gaps and
challenges.
ave been successful in garnering National Institutes of Health
.g., Social Work Principal Investigators Otis-Green,
nd Zimmerman). In most instances, the successful applicants
artford Faculty Scholars and/or Hartford Doctoral Fellows,
nstitutes offered to social work researchers to enhance their
funding.
Dissemination
Dissemination of research to practitioners is a dilemma in many fields. Although many hospice
social workers acquire information used in clinical practice from books, most new research is
published in peer-reviewed journals and is not necessarily or readily seen by practitioners.
Enhanced tools for dissemination are needed to get pertinent research into the hands of
practitioners and better use might be made of various on-line web resources and newsletters to get
research interpreted for practice.
cience Consensus meeting on End of Life Care in 2004
ndOfLifeCareSOS024html.htm), social work research was
fort. The National Institute on Nursing Research (NINR)
s related to end-of-life care. However, there is no
s grant submissions on hospice and end-of-life care nor is
velop the research careers of end-of-life and hospice
ross multiple disciplines.
Addressing Disparities in Access to and Use of Hospice Care
There are demographic disparities in both the hospice workforce and for those who choose to,
have access to, and/or receive hospice care. Social workers should explore the nature of the
demographic disparities in both the worker and patient populations. Policy makers can use this
research to develop new methods for reaching these underserved populations and recruiting a
more diverse workforce. As one step to give greater visibility to this need the 2010 SWHPN
preconference that was held in conjunction with the annual AAHPM/HPNA Annual Assembly
included the session Understanding Diversity: How culturally based interventions impact hospice
and palliative care with presenters Karen Bullock, Karen Kayser, and J. Ernest Aguilar.
mposium included the oft identified problem of the
researchers might seek to ask and the concerns that
e and/or patient care. Practitioner involvement in research
questions that are relevant for practice. Incorporating the
ithin hospice research is also important. However patient
deteriorating physical and mental health of the patient.
Hospice Social Work/Policy Connections
The symposium highlighted the value of building and strengthening the connections between
social work and federal agencies in regard to social work’s role in hospice. The representatives
from CMS were actively engaged in the think tank and valued the opportunity to become more
familiar with the social work researchers and practitioners who were their fellow participants.
There is the potential for forming new exchanges among federal agencies, hospice researchers,
practitioners, and national organizations with the goal of advancing quality hospice service
delivery and the role of various members of the interdisciplinary team. While CMS staff are
regularly engaged with representatives from NHPCO and other hospice provider organizations, it
would be extremely beneficial to enhance the involvement of social workers and social work
organizations with CMS and other federal agencies. This would highlight the social work role as
well as outcomes from social work research.
t and applicable to practice will encourage hospice social
and help to legitimize the field of social work as driven by
important in order to expand and better define our
ons of hospice social work. Qualitative research methods can
cators and better understand the nuances of hospice.
help to establish the effectiveness of hospice social workers
spice patients and families. Further research will also help to
CMS’s development of new quality measures is a prime area for hospice social work practitioners
and researchers to contribute. Social work ethics and standards for practice align closely with the
CMS goals of providing patient-centered and quality care. Therefore, social workers are poised to
provide valuable insight to quality indicators, specifically in evaluating the psychosocial elements
and outcomes of hospice care.
hospice care would also benefit from considering elements of
esearch can focus at multiple levels including examining
the family and loved ones after the patient dies.
Since the National Institutes of Health (NIH) already has a plan to enhance social work research
(see http://obssr.od.nih.gov/pdf/SWR_Report.pdf) highlighting the fit of that agenda with the need
to build hospice social work research is relevant to multiple institutes and offices beyond NINR.
This would include the National Cancer Institute, the National Institute on Aging, the National
so that there is opportunity to complete systematic reviews
for hospice social work services. Entities like the Campbell
ration.org) with active involvement of social work
ndertaking such a rigorous and transparent review.
15
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
Center for Complementary and Alternative Medicine, the National Center for Minority Health
and Health Disparities, the Office of Behavioral and Social Sciences Research, the Office of AIDS
Research, etc.
RECOMMENDATIONS FOR ACTION
To Advance the Role of Hospice Social Work and Addres
In addition, health care reform include provisions related to endorsing pediatric hospices,
identification of a funding model for providing concurrent care of hospice and curative treatment,
along with some potential funding cuts. Thus, the need for social work’s voice on developing and
implementing policy continues to be important and potentially powerful.
•
Hospice social workers can:
◊
◊
◊
◊
◊
◊
◊
•
◊
◊
◊
◊
◊
17
Advocate for hospice administrators to promote t
tools to provide quality documentation (electroni
plan of care. This will help CMS better document
social workers.
Participate in research on hospice social work to
to identify practice challenges and develop eviden
Remain abreast of hospice social work research a
their own practice.
Develop group supervision and peer support netw
and increase skills for practice.
Partner with social workers in other areas (e.g., h
social workers, oncology social workers) to prom
asset in providing quality care at the end of life.
Decreasing caseloads.
Offering competitive salaries that reward social w
and acquired licenses and credentials.
Offering incentives for social workers that seek tr
incorporate research into practice.
Providing quality and consistent supervision and
social workers to help build practice skills and eff
evaluate performance to increase effectiveness an
Helping define and support the social worker’s ro
interdisciplinary care team.
Ensuring electronic case notes have sections desig
work service delivery.
National social work organizations can:
◊
◊
SOCIAL WORK POLICY INSTITUTE
Utilize information provided in the NASW Stand
professional development strategies to implement
Hospice agencies can enhance the quality of services p
◊
•
Continually reinforce their role on the interdiscip
and co-workers, and with other organizations tha
Work with CMS and other federal agencies in ord
value of hospice social work in efficiently admini
Work with NIH to support research to evaluate t
interdisciplinary care teams and explore innovativ
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
native Medicine, the National Center for Minority Health
Behavioral and Social Sciences Research, the Office of AIDS
RECOMMENDATIONS FOR ACTION
To Advance the Role of Hospice Social Work and Address Practice Issues
e provisions related to endorsing pediatric hospices,
providing concurrent care of hospice and curative treatment,
ts. Thus, the need for social work’s voice on developing and
mportant and potentially powerful.
•
Hospice social workers can:
◊
◊
◊
◊
◊
◊
◊
•
◊
◊
◊
◊
◊
Advocate for hospice administrators to promote the need for social work relevant
tools to provide quality documentation (electronic or paper format) of the patient’s
plan of care. This will help CMS better document and recognize the role of hospice
social workers.
Participate in research on hospice social work to better establish its effectiveness and
to identify practice challenges and develop evidence-based practices.
Remain abreast of hospice social work research and how its outcomes are relevant to
their own practice.
Develop group supervision and peer support networks in order to decrease isolation
and increase skills for practice.
Partner with social workers in other areas (e.g., hospital social workers, nursing home
social workers, oncology social workers) to promote hospice services as a valuable
asset in providing quality care at the end of life.
Decreasing caseloads.
Offering competitive salaries that reward social workers for educational achievements
and acquired licenses and credentials.
Offering incentives for social workers that seek training opportunities and continually
incorporate research into practice.
Providing quality and consistent supervision and consultation of social workers by
social workers to help build practice skills and efficacy; document outcomes; and
evaluate performance to increase effectiveness and efficiency of service delivery.
Helping define and support the social worker’s roles and responsibilities on the
interdisciplinary care team.
Ensuring electronic case notes have sections designed for capturing elements of social
work service delivery.
National social work organizations can:
◊
◊
17
Utilize information provided in the NASW Standards as a guide, including creation of
professional development strategies to implement social work competencies.
Hospice agencies can enhance the quality of services provided by social workers by:
◊
•
Continually reinforce their role on the interdisciplinary care team with administrators
and co-workers, and with other organizations that serve hospice patients.
Work with CMS and other federal agencies in order for them to better understand the
value of hospice social work in efficiently administering hospice services.
Work with NIH to support research to evaluate the social work role on
interdisciplinary care teams and explore innovative techniques in practice.
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
◊
•
To Promote Interdisciplinary Team Functioning
Engage in partnerships with national hospice organizations and accrediting bodies to
educate and promote the role of the social worker and the value it provides in hospice
service delivery.
•
Hospice social work researchers can:
◊
◊
◊
◊
•
HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
◊
Develop research agendas that incorporate evaluations of hospice social worker
effectiveness including cost effectiveness.
◊
Conduct rigorous systematic research that examines the effectiveness and cost
effectiveness of hospice social workers at different level of qualification (e.g., MSW v.
BSW, related degree v. social work degree, supervised v. not supervised, etc.).
◊
Use mixed methods to explore and conclusively define the roles and responsibilities of
hospice social workers.
•
Seek to develop tools for capturing and evaluating quality indicators related to
psychosocial needs that can be useful to CMS’s development and implementation of
the QAPI program.
◊
Increase infusion of information about hospice services into the curriculum.
◊
To Enhance Diversity in Hospice Services
•
◊
◊
◊
◊
◊
•
◊
Hospice social workers and social work and hospice organizations can:
◊
•
Advocate for the expansion of services and outreach to more ethnically and culturally
diverse populations by engaging with members of the local community and other
health care professionals to educate them on the value of hospice.
◊
◊
Partner with other hospice organizations to develop awareness campaigns geared at
populations that are not utilizing hospice services to demonstrate the benefits of
hospice care.
Encourage hospice agencies to increase access of services to populations not utilizing
hospice services.
•
Encourage hospice agencies to seek out employees from diverse backgrounds to help
enrich the cultural richness of their care teams.
Partner with other hospice agencies and national
interdisciplinary collaboration in practice.
Develop quarterly or annual team building exerci
all disciplines understand the value of each team
philosophies.
Provide tools to increase collaboration in treatme
disciplines on elements of the plan of care.
Model expectations for mutual respect of interdis
the uniqueness and importance of each team mem
for providing quality and comprehensive hospice
Provide tools that increase trust and communicat
Provide incentives to team members for taking ef
Develop and disseminate tools to hospice leaders
interdisciplinary collaboration and team function
Advocate for federal agencies involved in hospice
methods for increasing interdisciplinary team fun
Advocate for federal agencies involved in hospice
collaboration and valuing different practice philo
plans of care.
Hospice social worker researchers can:
◊
◊
Help recruit qualified social workers from diverse backgrounds to explore careers in
end-of-life care.
Conduct trainings on the role of social work and
members about their role in hospice service delive
National social work and hospice organizations can:
◊
Incorporate patient’s and family’s involvement in developing a plan of care, which
includes the patient’s and family’s cultural considerations of care.
Social work researchers can:
◊
◊
◊
Develop a curriculum track that prepares social workers for a career in end-of-life
care.
Work to build trust and communication with oth
care team.
Hospice agencies can:
◊
Social work educators can:
◊
Social workers can help build a dialogue with agencie
to understand the nature of each role on the care team
Conduct rigorous research and systematic review
interdisciplinary team functioning.
Engage in interdisciplinary research on hospice ca
treatment philosophies in treatment planning and
also help discover the reasons for gaps and challe
collaboration in hospice care.
Explore the reasons for racial and ethnic disparities in both the hospice workforce and
patient population and seek to develop methods for adding cultural diversity to the
hospice care environment.
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To Promote Interdisciplinary Team Functioning
th national hospice organizations and accrediting bodies to
role of the social worker and the value it provides in hospice
•
rs can:
Social workers can help build a dialogue with agencies and interdisciplinary team members
to understand the nature of each role on the care team. For example, social workers could:
◊
that incorporate evaluations of hospice social worker
t effectiveness.
◊
tic research that examines the effectiveness and cost
cial workers at different level of qualification (e.g., MSW v.
ial work degree, supervised v. not supervised, etc.).
◊
plore and conclusively define the roles and responsibilities of
•
capturing and evaluating quality indicators related to
an be useful to CMS’s development and implementation of
◊
◊
mation about hospice services into the curriculum.
◊
rvices
◊
cial work and hospice organizations can:
•
on of services and outreach to more ethnically and culturally
gaging with members of the local community and other
o educate them on the value of hospice.
◊
◊
e organizations to develop awareness campaigns geared at
tilizing hospice services to demonstrate the benefits of
◊
•
es to seek out employees from diverse backgrounds to help
s of their care teams.
Develop quarterly or annual team building exercises to foster team cohesion and help
all disciplines understand the value of each team member and differing treatment
philosophies.
Provide tools to increase collaboration in treatment planning and include all
disciplines on elements of the plan of care.
Model expectations for mutual respect of interdisciplinary team members by stressing
the uniqueness and importance of each team members’ roles and their responsibilities
for providing quality and comprehensive hospice services.
Provide tools that increase trust and communication among team members
Provide incentives to team members for taking efforts to increase collaboration.
Develop and disseminate tools to hospice leaders and employees to foster
interdisciplinary collaboration and team functioning.
Advocate for federal agencies involved in hospice regulation and research to evaluate
methods for increasing interdisciplinary team functioning.
Advocate for federal agencies involved in hospice regulation to stress interdisciplinary
collaboration and valuing different practice philosophies in developing comprehensive
plans of care.
Hospice social worker researchers can:
◊
◊
al workers from diverse backgrounds to explore careers in
Partner with other hospice agencies and national organizations seeking to foster
interdisciplinary collaboration in practice.
National social work and hospice organizations can:
family’s involvement in developing a plan of care, which
family’s cultural considerations of care.
es to increase access of services to populations not utilizing
Conduct trainings on the role of social work and develop trainings with other team
members about their role in hospice service delivery including treatment philosophies.
Hospice agencies can:
◊
k that prepares social workers for a career in end-of-life
Work to build trust and communication with other members of the interdisciplinary
care team.
Conduct rigorous research and systematic reviews that evaluate elements of successful
interdisciplinary team functioning.
Engage in interdisciplinary research on hospice care to better understand the varying
treatment philosophies in treatment planning and implementation. This research can
also help discover the reasons for gaps and challenges to interdisciplinary
collaboration in hospice care.
cial and ethnic disparities in both the hospice workforce and
ek to develop methods for adding cultural diversity to the
19
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
•
Psychosocial Outcomes
“Hospice is one (if not the only) area of health care in which psychosocial outcomes out shadow physiological outcomes in a profound and
demonstrable way. If the research bridge can be built, the standing of social work/psychosocial intervention in this and other areas of
health care will rise significantly.” — A think tank participant
Hospice social work researchers can:
◊
◊
Develop relationships with CMS to regularly and
outcomes of research on hospice social work and
Seek dissemination methods that will most effecti
NASW member updates, webinars, tele-training,
practice books, inclusion in newsletters, and othe
To Promote Collaborations with Federal Agencies
To Promote Research-Practice Linkages
•
Hospice social workers can:
◊
◊
◊
•
•
◊
◊
Maintain quality patient records that can be used in larger evaluations of hospice
social work outcomes, and also in the social workers’ own practice evaluations.
◊
Develop strategies for conducting outcome evaluations in the agency and then using
the findings to enhance practice.
Increase accessibility for practitioners to research journals.
National hospice social work organizations could incentivize credentials, such as the
Advanced Certified Hospice and Palliative Social Worker (ACHP-SW) by offering access to
journals targeted at social work in hospice and palliative care.
•
Hospice social work researchers can:
◊
◊
◊
Engage with CMS surveyors to illustrate areas of
ensure that quality indicators represent the servic
Report concerns and violations of the regulation
workers are not asked to perform duties outside o
Hospice agencies can work with CMS to develop
assess all areas of service delivery including psych
Hospice social work researchers and national org
connections for researchers with CMS to better in
changes.
Hospice is a patient and family-centered service delivery para
interdisciplinary collaboration and highlights the importance
quality of life needs. Social workers are a key part of that ser
will help not only those current and future social workers in
patients and families served by hospice as well.
Provide incentives to clinicians that incorporate research into practice.
•
◊
◊
Seek out connections with local or prominent hospice social work researchers to help
originate relevant practice research questions and develop valuable and effective
research methodologies.
Hospice agencies can:
◊
Hospice social workers can:
Incorporate practitioners in the research design process from the outset, including in
development of the research questions.
Promote the use of community-based participatory research strategies.
Structure journal articles to be geared toward implementation in or consideration for
practice.
To Promote Research on Hospice Social Work
•
National hospice and social work organizations can:
◊
◊
◊
Advocate for increased funding from Congress to explore and enhance the social work
role in research (e.g. The National Center for Social Work Research Act, S.114).
Develop a network of researchers that can collaborate to design high quality studies
that may be more eligible for grant funding, and that would also increase the scale and
rigor of the research.
Promote the value of research to its members who are clinicians as essential for
increasing the value and legitimacy of the social work profession in hospice care.
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
•
in which psychosocial outcomes out shadow physiological outcomes in a profound and
lt, the standing of social work/psychosocial intervention in this and other areas of
articipant
Hospice social work researchers can:
◊
◊
Develop relationships with CMS to regularly and effectively communicate the
outcomes of research on hospice social work and interventions.
Seek dissemination methods that will most effectively reach practitioners, such as
NASW member updates, webinars, tele-training, inclusion in hospice social work
practice books, inclusion in newsletters, and other publications.
To Promote Collaborations with Federal Agencies
ages
•
Hospice social workers can:
◊
◊
local or prominent hospice social work researchers to help
research questions and develop valuable and effective
◊
ecords that can be used in larger evaluations of hospice
d also in the social workers’ own practice evaluations.
◊
ducting outcome evaluations in the agency and then using
actice.
ractitioners to research journals.
Engage with CMS surveyors to illustrate areas of concern for practice and work to
ensure that quality indicators represent the services administered by social workers.
Report concerns and violations of the regulation to CMS to help ensure that social
workers are not asked to perform duties outside of their assigned role.
Hospice agencies can work with CMS to develop quality indicators that accurately
assess all areas of service delivery including psychosocial elements of treatment.
Hospice social work researchers and national organizations can develop stronger
connections for researchers with CMS to better inform regulation development and
changes.
Hospice is a patient and family-centered service delivery paradigm that provides a model for
interdisciplinary collaboration and highlights the importance of attending to psychosocial and
quality of life needs. Social workers are a key part of that service. Implementing this action agenda
will help not only those current and future social workers in hospice but the well-being of the
patients and families served by hospice as well.
cians that incorporate research into practice.
organizations could incentivize credentials, such as the
nd Palliative Social Worker (ACHP-SW) by offering access to
k in hospice and palliative care.
rs can:
n the research design process from the outset, including in
ch questions.
unity-based participatory research strategies.
o be geared toward implementation in or consideration for
ocial Work
ork organizations can:
nding from Congress to explore and enhance the social work
National Center for Social Work Research Act, S.114).
earchers that can collaborate to design high quality studies
for grant funding, and that would also increase the scale and
arch to its members who are clinicians as essential for
egitimacy of the social work profession in hospice care.
21
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
REFERENCES
APPENDIX
HFA [Hospice Foundation of America]. (n.d.) What is Hospice. Retrieved from
www.hospicefoundation.org/pages/page.asp?page_id=47055.
Appendix A:
List of Participants
Appendix B:
Symposium Agenda
Appendix C:
Presenter Biographies
Cicely Saunders International. (n.d). Dame Cicely Saunders Biography. Retrieved from
www.cicelysaundersfoundation.org/about-us/dame-cicely-biography.
Appendix D: Social Security Act – Hospice Section
Medicare and Medicaid Programs: Hospice Conditions of Participation; Final Rule, 73 Fed.
Reg. 32159-31260; 32218 (2008) (to be codified at 42 C.F.R. pt. 418).
NASW Center for Workforce Studies. (2006). Assuring the Sufficiency of a Frontline Workforce:
A National Study of Licensed Social Workers – Special Report: Social Work Services in
Health Care Settings. Washington, DC: NASW. Retrieved from
http://workforce.socialworkers.org/studies/prac_area.asp#health.
Appendix E:
CMS Conditions of Participation
Appendix F:
CMS Quality Assessment and Performance Im
Appendix G: CMS Approved Hospice Deemed Status Progr
Appendix H: NHPCO Standards for Practice
National Hospice and Palliative Care Organization. (2009). NHPCO Facts and Figures:
Hospice Care in America. Retrieved from: www.nhpco.org/files/public/
Statistics_Research/NHPCO_facts_and_figures.pdf.
Appendix I:
NASW Standards for Palliative and End-of-Li
Appendix J:
Credentials and Training for Hospice Social W
Appendix K:
Citations for “Current Status of Social Work R
Appendix L:
Annotated Bibliography
Appendix M: Hospice Resources
Appendix N: Pending Legislation
Appendix O: Social Work Researchers on End-of-Life Care
Fellows)
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
APPENDIX
a]. (n.d.) What is Hospice. Retrieved from
ages/page.asp?page_id=47055.
Dame Cicely Saunders Biography. Retrieved from
n.org/about-us/dame-cicely-biography.
Appendix A:
List of Participants
Appendix B:
Symposium Agenda
Appendix C:
Presenter Biographies
Appendix D: Social Security Act – Hospice Section
ospice Conditions of Participation; Final Rule, 73 Fed.
08) (to be codified at 42 C.F.R. pt. 418).
(2006). Assuring the Sufficiency of a Frontline Workforce:
Social Workers – Special Report: Social Work Services in
ton, DC: NASW. Retrieved from
s.org/studies/prac_area.asp#health.
Appendix E:
CMS Conditions of Participation
Appendix F:
CMS Quality Assessment and Performance Improvement (QAPI)
Appendix G: CMS Approved Hospice Deemed Status Programs
Appendix H: NHPCO Standards for Practice
Organization. (2009). NHPCO Facts and Figures:
rieved from: www.nhpco.org/files/public/
acts_and_figures.pdf.
Appendix I:
NASW Standards for Palliative and End-of-Life Care
Appendix J:
Credentials and Training for Hospice Social Workers
Appendix K:
Citations for “Current Status of Social Work Research” Section
Appendix L:
Annotated Bibliography
Appendix M: Hospice Resources
Appendix N: Pending Legislation
Appendix O: Social Work Researchers on End-of-Life Care (Hartford Scholars and Doctoral
Fellows)
23
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX A: PARTICIPANT LIST
Suzanne Adelman, DCSW
Stacy Collins, MSW
Clinical Supervisor
Hospice of Jewish Social Services Agency
Robert Arnold, MPS
Senior Practice Associate – Children and Adolescent
Health
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
Director
National Association of Social Workers Foundation
Deirdre Downes, MSW, LCSW
Samira Beckwith, ACSW, LCSW, FACHE
Social Work Manager
Jewish Home Life Care
President & CEO
Hope Hospice
Judi Lund Person, MPH
Tracy Schro
Vice-President
Compliance and Regulatory Leadership
National Hospice and Palliative Care Organization
Assistant Pro
School of So
University of
Jeri Miller, PhD
J. Donald S
Head
NINR Office of End-of-Life Palliative Care Science,
Investigator Training, and Education
National Institute of Nursing Research
President &
National Ho
Danielle Sh
Sherri Morgan, JD, MSW
Senior Healt
Centers for M
Michael Francum
Associate Counsel
LDF and Office of Ethics and Professional Review
National Association of Social Workers
Deborah W
Pamela Bennett, RN
MSW Intern
National Association of Social Workers
Rebecca Myers, LSW, ACSW
Executive Director of Healthcare Alliance Development
Purdue Pharma
Ronald Fried
Kathy Brandt, MS
Vice-President
Public Affairs
VITAS Innovative Hospice Care
Vice President
Innovation and Access
National Hospice and Palliative Care Organization
Laura Bronstein, PhD, ACSW
Associate Professor & Department Chair
College of Community and Public Affairs
Binghamton University
Director
External Relations
National Association of Social Workers
Bekki Ow-Arhus, ACSW, DCSW, C-ACYFSW
Senior Practice Associate
Professional Development
National Association of Social Workers
Barbara Guest, MSW, MPH
Program Analyst
Office of the Associate Director
National Cancer Institute
Debra Parker Oliver, PhD, MSW
Associate Pro
School of So
University at
Karyn Wals
Senior Practi
Center for W
National Ass
Briana Wal
MSW Intern
Social Work
National Ass
NASW Pioneer
Associate Professor
Rural Sociology, Social Work
University of Missouri
Board Chair
National Hospice and Palliative Care Organization
President & CEO
Hospice of the Bluegrass - Lexington
Chris Herman, MSW, LICSW
Judith Peres, MSW, LCSW-C
Senior Practice Associate – Aging
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
Supporting Successful Transitions
Sherri Weis
Kim Roche, BSN, MA
Associate Cl
Hospice of th
Karen Bullock, PhD
Elizabeth Hoffler, MSW, ACSW
Tracy Whita
Associate Professor
School of Social Work
University of Connecticut
Special Assistant to the Executive Director
Lobbyist
National Association of Social Workers
Nurse Consultant
Survey and Certification Group
Centers for Medicare and Medicaid Services
Elizabeth J. Clark, PhD, ACSW, MPH
Ayisha Jones
Executive Director
National Association of Social Workers
MSW Intern
National Association of Social Workers
Paul Clark, PhD
James J. Kelly, PhD, ACSW
Assistant Professor
Department of Social Work
George Mason University
President
National Association of Social Workers
Gretchen Brown, MSW
Bernice Harper, MSW, MSPh, LLD
Mary Rossi-Coajou, MS, RN
Captain, U.S. Public Health Service
Senior Nurse Consultant
Centers for Medicare and Medicaid Services
Annette Schmidt
Mirean Coleman, MSW, LICSW
Senior Practice Associate – Clinical Social Work
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
SOCIAL WORK POLICY INSTITUTE
Director
U.S. External Affairs
sanofi-aventis U.S.
Donald List, LCSW-C
Palliative Care Social Worker
The Harry J. Duffey Family Pain and Palliative
Care Program
Johns Hopkins Medicine
25
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Jennifer Wa
Assistant Dir
National Ass
Director
Center for W
National Ass
Gail Woods
Director of C
National Ass
Joan Levy Z
Director
Social Work
National Ass
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ANT LIST
dation
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Judi Lund Person, MPH
Tracy Schroepfer, PhD
Vice-President
Compliance and Regulatory Leadership
National Hospice and Palliative Care Organization
Assistant Professor
School of Social Work
University of Wisconsin-Madison
Jeri Miller, PhD
J. Donald Schumacher, PsyD
Head
NINR Office of End-of-Life Palliative Care Science,
Investigator Training, and Education
National Institute of Nursing Research
President & CEO
National Hospice and Palliative Care Organization
Stacy Collins, MSW
Senior Practice Associate – Children and Adolescent
Health
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
Deirdre Downes, MSW, LCSW
Danielle Shearer
Sherri Morgan, JD, MSW
Senior Health Insurance Specialist
Centers for Medicare and Medicaid Services
Michael Francum
Associate Counsel
LDF and Office of Ethics and Professional Review
National Association of Social Workers
Deborah Waldrop, PhD, MSW
MSW Intern
National Association of Social Workers
Rebecca Myers, LSW, ACSW
Social Work Manager
Jewish Home Life Care
Director
External Relations
National Association of Social Workers
Ronald Fried
Vice-President
Public Affairs
VITAS Innovative Hospice Care
Bekki Ow-Arhus, ACSW, DCSW, C-ACYFSW
Senior Practice Associate
Professional Development
National Association of Social Workers
Barbara Guest, MSW, MPH
Program Analyst
Office of the Associate Director
National Cancer Institute
Debra Parker Oliver, PhD, MSW
Associate Professor
School of Social Work
University at Buffalo
Karyn Walsh, MSW, LCSW, ACSW
Senior Practice Associate – Health, Cancer, & WebEd
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
Briana Walters
MSW Intern
Social Work Policy Institute
National Association of Social Workers Foundation
NASW Pioneer
Associate Professor
Rural Sociology, Social Work
University of Missouri
Chris Herman, MSW, LICSW
Judith Peres, MSW, LCSW-C
Senior Practice Associate – Aging
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
Supporting Successful Transitions
Sherri Weisenfluh, MSW, LCSW, ACHP-SW
Kim Roche, BSN, MA
Associate Clinical Officer of Counseling Services
Hospice of the Bluegrass
Nurse Consultant
Survey and Certification Group
Centers for Medicare and Medicaid Services
Tracy Whitaker, DSW
Bernice Harper, MSW, MSPh, LLD
Elizabeth Hoffler, MSW, ACSW
Special Assistant to the Executive Director
Lobbyist
National Association of Social Workers
Mary Rossi-Coajou, MS, RN
Captain, U.S. Public Health Service
Senior Nurse Consultant
Centers for Medicare and Medicaid Services
Ayisha Jones
MSW Intern
National Association of Social Workers
Annette Schmidt
James J. Kelly, PhD, ACSW
Director
U.S. External Affairs
sanofi-aventis U.S.
President
National Association of Social Workers
Donald List, LCSW-C
Jennifer Watt
Assistant Director
National Association of Social Workers Foundation
Director
Center for Workforce Studies and Social Work Practice
National Association of Social Workers
Gail Woods-Waller, MS
Director of Communications
National Association of Social Workers
Joan Levy Zlotnik, PhD, ACSW
Director
Social Work Policy Institute
National Association of Social Workers Foundation
Palliative Care Social Worker
The Harry J. Duffey Family Pain and Palliative
Care Program
Johns Hopkins Medicine
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APPENDIX B: SYMPOSIUM AGENDA
Thursday, March 25, 2010
NASW National Office
7th Floor Conference Center
1:45 PM
Report Out on Gaps, Challenges, and Emerging
2:15 PM
PART 3: DEVELOPING AN ACTION PLAN
Action Planning Work Groups
•
Building the Science – Agenda and Research
8:30 AM
REGISTRATION & CONTINENTAL BREAKFAST
•
National Collaborations and Partnerships
9:00 AM
GREETINGS & INTRODUCTIONS
•
Creating Research-Practice Bridges
Joan Levy Zlotnik, PhD, ACSW, Director, Social Work Policy Institute
Elizabeth J. Clark, PhD, ACSW, MPH, Executive Director, National Association of
Social Workers
Gretchen Brown, MSW, Chair, National Hospice and Palliative Care Organization
•
Implications and Recommendations for Polic
9:30 AM
3:00 PM
Break
3:15 PM
Report Out and Identification of Action Steps an
3:45 PM
Wrap-up & Next Steps
4:00 PM
Adjourn
PART 1: FRAMING THE ISSUES
Building Comprehensive Community-Based End-of-Life Care – Social Work
Contributions and Challenges for the Future
Samira Beckwith, ACSW, Hope Hospice, Fort Myers, Florida
Ronald Fried, Vitas Innovative Hospice Care, Washington, DC
Social Work’s Role in Hospice – An Overview of Research
Deborah Waldrop, PhD, School of Social Work, University at Buffalo
Promoting the High Quality Psychosocial Care in Hospice
Mary Rossi-Coajou, MS, RN & Danielle Shearer,
Centers for Medicare and Medicaid Services, Office of Standards and Quality
11:00 AM Break
11:15 AM Questions and Discussion
11:45 AM Overview of NASW Hospice and Palliative Care Resources and Activities
Elizabeth J. Clark, PhD, ACSW, MPH
12:00 PM Lunch (Provided)
12:45 PM PART 2: IDENTIFYING GAPS, CHALLENGES, AND EMERGING PRACTICES
Roundtable Facilitated Discussions
•
Current Status of Hospice Psychosocial Research – Answered and Unanswered
Questions
•
Emerging Practices in End-of-Life Care – Opportunities for Social Work
•
Enhancing Social Worker’s Role on the Interdisciplinary Team
•
Enhancing Researcher/Practitioner/Policy Connections
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UM AGENDA
1:45 PM
Report Out on Gaps, Challenges, and Emerging Practices for Hospice Social Workers
2:15 PM
PART 3: DEVELOPING AN ACTION PLAN
Action Planning Work Groups
•
Building the Science – Agenda and Research Training
NTINENTAL BREAKFAST
•
National Collaborations and Partnerships
DUCTIONS
•
Creating Research-Practice Bridges
ACSW, Director, Social Work Policy Institute
ACSW, MPH, Executive Director, National Association of
•
Implications and Recommendations for Policy
3:00 PM
Break
3:15 PM
Report Out and Identification of Action Steps and Targets
3:45 PM
Wrap-up & Next Steps
4:00 PM
Adjourn
Chair, National Hospice and Palliative Care Organization
E ISSUES
Community-Based End-of-Life Care – Social Work
enges for the Future
CSW, Hope Hospice, Fort Myers, Florida
nnovative Hospice Care, Washington, DC
spice – An Overview of Research
hD, School of Social Work, University at Buffalo
lity Psychosocial Care in Hospice
MS, RN & Danielle Shearer,
e and Medicaid Services, Office of Standards and Quality
n
pice and Palliative Care Resources and Activities
ACSW, MPH
GAPS, CHALLENGES, AND EMERGING PRACTICES
iscussions
spice Psychosocial Research – Answered and Unanswered
End-of-Life Care – Opportunities for Social Work
rker’s Role on the Interdisciplinary Team
r/Practitioner/Policy Connections
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX C: PRESENTER BIOGRAPHIES
Deborah Waldrop, PhD, LMSW
Deborah Waldrop, PhD, LMSW is an Associate Professor at t
Social Work. Deborah joined the UBSSW faculty after spendi
variety of healthcare settings. Drawing from the experiences
families Dr. Waldrop now conducts research about the needs
end. Deborah is currently studying how people make decision
timing of that decision. She is also involved in an ongoing de
care, a newly emerging model for care at life’s end.
Samira Beckwith, ACSW, LCSW, FACHE
Samira K. Beckwith, ACSW, LCSW, FACHE, has over 30 years’ experience in professional health
care and social services. She has served as President and CEO of Hope Healthcare Services, based
in Fort Myers, Florida, since 1991. When she joined Hope, the agency was caring for a small
number of hospice patients in the immediate Fort Myers area. Under her leadership, Hope has
created an array of services for the frail elderly and children and today serves more than 2,200
people and their families in a 10,000 square-mile area throughout southwest and mid-Florida. She
earned her BA in Sociology and Master’s in Social Work at The Ohio State University. Ms.
Beckwith has become a leader in improving and advancing health care on the local, state and
national levels. She has broadened the continuum of health care, enabling adults to live
comfortably and with dignity through old age and into the final chapter of life. Former Governor
Jeb Bush appointed Samira to the state’s Long-Term Care Policy Board and she is a frequent
participant in national health policy forums and has provided expert testimony before government
bodies including the US House Judiciary Committee. Ms. Beckwith is serving for a third time on
the Board of the National Hospice and Palliative Care Organization and is the 2009 recipient of
the NASW Foundation’s Knee/Wittman Lifetime Achievement Award for Health & Mental Health
Practice.
Captain Mary Rossi-Coajou, MS, RN
Captain Mary Rossi-Coajou serves as a Senior Nurse Consul
and Medicaid Services (CMS), Office of Clinical Standards an
degree in Science and Nursing from the State University of N
degree in Community Health from the University of Marylan
Federal service in 1989 at the National Institutes of Health, B
in the areas of occupational health, clinical staff nursing, nur
is currently employed at CMS, Baltimore office as a senior nu
hospice and community mental health programs, were she is
Participation (CoPs).
Ronald Fried
Ron Fried brings more than 15 years of hospice management and administrative responsibilities
and more than 30 years of experience in legislative and regulatory affairs to his role as Senior Vice
President of Development and Public Affairs for VITAS Innovative Hospice Care. Ron identifies
and develops partnership opportunities with hospices around the country. In addition, he handles
strategic growth opportunities, such as relationships with health care providers that complement
VITAS’ service such as disease management and palliative care. Ron also oversees public policy
issues for VITAS and manages those activities at both the state and federal level. Ron serves on the
Boards of Directors of the National Hospice and Palliative Care Organization and Florida
Hospices and Palliative Care. He is a member of the Executive Committee for each organization.
Ron brings to VITAS more than 15 years of experience in domestic and international strategic
development, including eight years previously spent with VITAS – first, as a public policy
consultant and, subsequently, as Director of Development. Ron’s areas of expertise include
strategic business planning, public policy, acquisition strategy, analysis, negotiation and operations
integration. Ron served as Director of Development for VITAS from 1992-1997 and provided
public policy guidance to VITAS from 1988-1992. During his tenure, VITAS successfully added
the California hospice programs—formerly known as Community Hospice Care—as well as
Hospice of Miami Valley in Cincinnati and Florida’s first not for profit hospice program, Hospice
of Central Florida in Orlando. Those programs have continued to grow as a part of VITAS and
today care for more than 3,000 patients and families each day. Early in Ron’s career, he served on
Capitol Hill as Legislative Assistant to Congressman Claude Pepper, public health policy advisor
to former Florida Governor Bob Graham and National Finance Director for Senator Bob Kerrey’s
1992 Presidential Campaign. Ron received his bachelor’s degree in government and politics from
the University of Maryland in College Park, MD.
SOCIAL WORK POLICY INSTITUTE
Danielle Shearer
Danielle Shearer is a senior health insurance specialist at the
Services. She has worked with the Medicare hospice program
proposed and final hospice rules, teaching hospice surveyors,
develop hospice quality measures. Danielle is also responsible
Agency CoPs and Life Safety Code CoPs for all Medicare and
facilities.
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ER BIOGRAPHIES
Deborah Waldrop, PhD, LMSW
Deborah Waldrop, PhD, LMSW is an Associate Professor at the University at Buffalo School of
Social Work. Deborah joined the UBSSW faculty after spending 20 years as a social worker in a
variety of healthcare settings. Drawing from the experiences of older adult patients and their
families Dr. Waldrop now conducts research about the needs and concerns that emerge at life’s
end. Deborah is currently studying how people make decisions about hospice utilization and the
timing of that decision. She is also involved in an ongoing descriptive study of residential hospice
care, a newly emerging model for care at life’s end.
ACHE
ACHE, has over 30 years’ experience in professional health
d as President and CEO of Hope Healthcare Services, based
hen she joined Hope, the agency was caring for a small
mediate Fort Myers area. Under her leadership, Hope has
il elderly and children and today serves more than 2,200
square-mile area throughout southwest and mid-Florida. She
er’s in Social Work at The Ohio State University. Ms.
oving and advancing health care on the local, state and
continuum of health care, enabling adults to live
old age and into the final chapter of life. Former Governor
e’s Long-Term Care Policy Board and she is a frequent
orums and has provided expert testimony before government
ary Committee. Ms. Beckwith is serving for a third time on
d Palliative Care Organization and is the 2009 recipient of
an Lifetime Achievement Award for Health & Mental Health
Captain Mary Rossi-Coajou, MS, RN
Captain Mary Rossi-Coajou serves as a Senior Nurse Consultant with the Centers for Medicare
and Medicaid Services (CMS), Office of Clinical Standards and Quality. She holds a Baccalaureate
degree in Science and Nursing from the State University of New York at Brockport and a Masters
degree in Community Health from the University of Maryland. CAPT Rossi-Coajou began her
Federal service in 1989 at the National Institutes of Health, Bethesda Maryland. She has worked
in the areas of occupational health, clinical staff nursing, nurse manager, and nurse consultant. She
is currently employed at CMS, Baltimore office as a senior nurse consultant and analyst for the
hospice and community mental health programs, were she is responsible for the Conditions of
Participation (CoPs).
of hospice management and administrative responsibilities
in legislative and regulatory affairs to his role as Senior Vice
Affairs for VITAS Innovative Hospice Care. Ron identifies
es with hospices around the country. In addition, he handles
s relationships with health care providers that complement
ement and palliative care. Ron also oversees public policy
ctivities at both the state and federal level. Ron serves on the
Hospice and Palliative Care Organization and Florida
member of the Executive Committee for each organization.
ars of experience in domestic and international strategic
eviously spent with VITAS – first, as a public policy
ctor of Development. Ron’s areas of expertise include
icy, acquisition strategy, analysis, negotiation and operations
Development for VITAS from 1992-1997 and provided
1988-1992. During his tenure, VITAS successfully added
merly known as Community Hospice Care—as well as
i and Florida’s first not for profit hospice program, Hospice
programs have continued to grow as a part of VITAS and
nts and families each day. Early in Ron’s career, he served on
o Congressman Claude Pepper, public health policy advisor
ham and National Finance Director for Senator Bob Kerrey’s
eived his bachelor’s degree in government and politics from
Park, MD.
Danielle Shearer
Danielle Shearer is a senior health insurance specialist at the Centers for Medicare & Medicaid
Services. She has worked with the Medicare hospice program for the past seven years, drafting the
proposed and final hospice rules, teaching hospice surveyors, and managing a special project to
develop hospice quality measures. Danielle is also responsible for writing the Home Health
Agency CoPs and Life Safety Code CoPs for all Medicare and Medicaid-certified health care
facilities.
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APPENDIX D: THE SOCIAL SECURITY ACT REGARDING
HOSPICE
(B) has an interdisciplinary group of personnel wh
(I) one physician (as defined in subsection (r)(1))
(II) one registered professional nurse, and
Title 18, Section 1861, Subsection dd
(III) one social worker”
“(dd) (1) The term “hospice care” means the following items and services provided to a terminally
ill individual by, or by others under arrangements made by, a hospice program under a written
plan (for providing such care to such individual) established and periodically reviewed by the
individual’s attending physician and by the medical director (and by the interdisciplinary group
described in paragraph (2)(B)) of the program.
(3) (A) An individual is considered to be “terminally ill” if th
that the individual’s life expectancy is 6 months or less” (Soci
Section 1861,Subsection dd)
(A) nursing care provided by or under the supervision of a registered professional
nurse,
(B) physical or occupational therapy, or speech-language pathology services,
(C) medical social services under the direction of a physician,
(D) (i) services of a home health aide who has successfully completed a training
program approved by the Secretary and
(ii) homemaker services,
(E) medical supplies (including drugs and biologicals) and the use of medical
appliances, while under such a plan,
(F) physicians’ services,
(G) short-term inpatient care (including both respite care and procedures necessary for
pain control and acute and chronic symptom management) in an inpatient facility
(H) counseling (including dietary counseling) with respect to care of the terminally ill
individual and adjustment to his death, and
(I) any other item or service which is specified in the plan and for which payment may
otherwise be made under this title.
(2) The term “hospice program” means a public agency or private organization (or a subdivision
thereof) which:
(A) (i) Provides the services listed above as well as “bereavement counseling for the
immediate family of terminally ill individuals” and
(ii) Provides for such care and services in individuals’ homes, on an outpatient
basis, and on a short-term inpatient basis, directly or under arrangements made
by the agency or organization,
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AL SECURITY ACT REGARDING
(B) has an interdisciplinary group of personnel which—(i) includes at least—
(I) one physician (as defined in subsection (r)(1)),
(II) one registered professional nurse, and
dd
(III) one social worker”
ans the following items and services provided to a terminally
rangements made by, a hospice program under a written
ndividual) established and periodically reviewed by the
y the medical director (and by the interdisciplinary group
program.
(3) (A) An individual is considered to be “terminally ill” if the individual has a medical prognosis
that the individual’s life expectancy is 6 months or less” (Social Security Act, 2008, Title 18,
Section 1861,Subsection dd)
by or under the supervision of a registered professional
al therapy, or speech-language pathology services,
under the direction of a physician,
health aide who has successfully completed a training
the Secretary and
s,
ding drugs and biologicals) and the use of medical
r such a plan,
are (including both respite care and procedures necessary for
and chronic symptom management) in an inpatient facility
dietary counseling) with respect to care of the terminally ill
ment to his death, and
ce which is specified in the plan and for which payment may
der this title.
ns a public agency or private organization (or a subdivision
s listed above as well as “bereavement counseling for the
terminally ill individuals” and
are and services in individuals’ homes, on an outpatient
-term inpatient basis, directly or under arrangements made
anization,
31
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
with the attending physician within 5 calendar days of the ele
comprehensive assessments should be updated by the IDG as
requires and at a minimum of every 15 days.
APPENDIX E: CMS CONDITIONS OF PARTICIPATION
Conditions of Participation Development Process:
Comprehensive assessments must include an evaluation of th
The CoPs were drafted during the regulation development period and then proceed to a clearance
process within CMS to ensure the new regulations concur with other CMS components. After an
internal review, the CoPs are approved and sent to regulatory clearance process within DHHS to
ensure that the CoPs concur by other department agencies and are then approved by the Secretary
of the DHHS. Finally, the Office of Management and Budget (OMB) reviews and approves the
CoPs and are then published in the Federal Register.
•
Physical, psychosocial, emotional, and spiritual needs
•
Nature and condition causing admission
•
Complications and risk factors
Overview of the Conditions of Participation Requirements
•
Functional status
The CoPs focus on enhancing patient rights; initial and comprehensive assessment of the patient;
interdisciplinary group, care planning, and coordination of services; and quality assessment and
performance improvement.
•
Imminence of death
•
Symptom severity
§ 418.52 Patient’s rights
•
Drug profile
The patient must be given a notice of their rights and responsibilities during the initial assessment
visit and in advance of furnishing care, both verbally and in writing in a language that the patient
understand. The patient must also be informed about developing advanced directives and the
notice of rights and responsibilities must be signed by the patient or representative. Patients have
the right to exercise their rights, be treated with respect, voice grievances, and be protected from
discrimination or reprisal for exercising their rights. Hospices must immediately investigate all
alleged violations and complaints, take appropriate corrective action, and report all verified
violations. The rights of the patient include:
•
Bereavement
•
Referrals
•
Pain management and symptom control
•
Be involved in developing plan of care
•
Refuse care or treatment
•
Choose attending physician
•
Confidential clinical record/ HIPAA
•
Be free of abuse
•
Receive information about hospice benefit
•
Receive information about scope and limitations of hospice services
Hospices organizations must include patient level data from e
individual patient outcomes. These data elements must be use
evaluation and in the hospice’s quality assessment performan
The data elements collected must be documented in a consist
§ 418.56 Interdisciplinary group, care planning, and coordin
The interdisciplinary group (IDG) includes a doctor of medic
worker, and a pastoral or other counselor and works togethe
family. The RN is tasked with coordinating care, ensuring co
and family’s needs, and ensuring the implementation and revi
of care is developed, it must include consultation with the att
or representative, and the primary caregiver. All hospice servi
plan of care, and patients and primary caregiver(s) are instruc
responsibilities. The plan of care should include:
•
Patient and family goals
•
Interventions for identified problems
•
All services necessary for palliation and management
conditions
•
Scope and frequency of services
•
Measurable outcomes
•
Drugs and treatments
§ 418.54 Initial and comprehensive assessment of the patient
The patient must receive an initial assessment by a registered nurse (RN) within 48 hours of the
election of hospice care. Assessments are frequently done in conjunction with a social worker, but
social workers are not required to be present during the initial assessment. Other members of the
interdisciplinary group (IDG), including social workers, may visit the patient prior to the nurse’s
assessment. A comprehensive assessment must be completed by the hospice IDG in consultation
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with the attending physician within 5 calendar days of the election of hospice care. These
comprehensive assessments should be updated by the IDG as frequently as the patient’s condition
requires and at a minimum of every 15 days.
NDITIONS OF PARTICIPATION
pment Process:
Comprehensive assessments must include an evaluation of the following:
ulation development period and then proceed to a clearance
w regulations concur with other CMS components. After an
d and sent to regulatory clearance process within DHHS to
department agencies and are then approved by the Secretary
anagement and Budget (OMB) reviews and approves the
deral Register.
•
Physical, psychosocial, emotional, and spiritual needs
•
Nature and condition causing admission
•
Complications and risk factors
icipation Requirements
•
Functional status
rights; initial and comprehensive assessment of the patient;
, and coordination of services; and quality assessment and
•
Imminence of death
•
Symptom severity
•
Drug profile
•
Bereavement
•
Referrals
their rights and responsibilities during the initial assessment
e, both verbally and in writing in a language that the patient
informed about developing advanced directives and the
ust be signed by the patient or representative. Patients have
eated with respect, voice grievances, and be protected from
ng their rights. Hospices must immediately investigate all
e appropriate corrective action, and report all verified
clude:
Hospices organizations must include patient level data from each assessment to measure
individual patient outcomes. These data elements must be used in patient care planning and
evaluation and in the hospice’s quality assessment performance improvement (QAPI) program.
The data elements collected must be documented in a consistent, systematic, and retrievable way.
§ 418.56 Interdisciplinary group, care planning, and coordination of services
m control
The interdisciplinary group (IDG) includes a doctor of medicine or osteopathy, a RN, a social
worker, and a pastoral or other counselor and works together to meet the needs of the patient and
family. The RN is tasked with coordinating care, ensuring continuous assessment of each patient’s
and family’s needs, and ensuring the implementation and revision of the plan of care. As the plan
of care is developed, it must include consultation with the attending physician (if any), the patient
or representative, and the primary caregiver. All hospice services must follow what is stated in the
plan of care, and patients and primary caregiver(s) are instructed on their identified care
responsibilities. The plan of care should include:
n of care
IPAA
spice benefit
pe and limitations of hospice services
•
Patient and family goals
•
Interventions for identified problems
•
All services necessary for palliation and management of terminal illness and related
conditions
•
Scope and frequency of services
•
Measurable outcomes
•
Drugs and treatments
ssessment of the patient
essment by a registered nurse (RN) within 48 hours of the
are frequently done in conjunction with a social worker, but
present during the initial assessment. Other members of the
ng social workers, may visit the patient prior to the nurse’s
ent must be completed by the hospice IDG in consultation
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•
Medical supplies and appliances
•
Documentation of the patient’s or representative’s level of understanding, involvement and
agreement with the plan of care
HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX F: CMS QUALITY ASSESSM
PERFORMANCE IMPROVEMENT (QAP
§ 418.58 Quality assessment and performance improvement
A revised plan of care includes information from the updated comprehensive assessment and track
progress toward specified outcomes and goals and should be completed as frequently as the
patient’s condition requires, but no less frequently than every 15 calendar days. The hospice will
coordinate the services administered to the patient and should develop and maintain a system of
communication. The IDG is responsible for directing, coordinating, and supervising the care and
services provided, and ensuring that the plan of care is followed. Information about a patient’s
condition and needs should be shared between all disciplines involved in care and with other
non-hospice healthcare providers.
As the core of the patient-focused and outcome oriented revis
Participation, CMS developed the Quality Assessment and Pe
The goal is to achieve desired outcomes by monitoring qualit
opportunities for improvement, and making changes to achie
outcomes are specifically tied to the other regulations (e.g., p
comprehensive assessments, interdisciplinary group, care plan
QAPI operates on both a patient level and a hospice agency l
to assess quality, use the data to identify opportunities for im
performance improvement in one or more areas. The goal is t
clinical and managerial expertise and experience to drive deci
hospice agency level. CMS is currently testing multiple qualit
services that hospices may be able to use in their future QAPI
QAPI collects data on an individual patient’s assessment/reas
with the goal of improving patient outcomes. The hospice lev
clinically focused aggregate data of the patients, and other da
data, administrative data, marketing data, etc. for the entire h
improving clinical and non-clinical operations.
The method and quality of reporting by hospice social worke
outcomes of a hospice’s QAPI. Decreased access to electronic
electronic record formats can diminish the quality of records
interdisciplinary care files.
The hospice must ensure the development, implementation, a
ongoing, hospice-wide, data-driven QAPI program that:
•
Reflects the complexity of its organization and service
•
Involves all hospice services (including those services f
arrangement)
•
Focuses on indicators related to palliative outcomes
•
Takes actions to demonstrate improvement in hospice
Additionally, the hospice must maintain documentary eviden
to demonstrate its operation to CMS
•
Program Scope
◊
◊
SOCIAL WORK POLICY INSTITUTE
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Measure, analyze and track indicators to assess p
operations
Show measurable improvement in indicators of p
services
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es
APPENDIX F: CMS QUALITY ASSESSMENT AND
PERFORMANCE IMPROVEMENT (QAPI)
s or representative’s level of understanding, involvement and
re
§ 418.58 Quality assessment and performance improvement
ation from the updated comprehensive assessment and track
nd goals and should be completed as frequently as the
ss frequently than every 15 calendar days. The hospice will
o the patient and should develop and maintain a system of
ble for directing, coordinating, and supervising the care and
he plan of care is followed. Information about a patient’s
between all disciplines involved in care and with other
As the core of the patient-focused and outcome oriented revision of the Conditions of
Participation, CMS developed the Quality Assessment and Performance Improvement (QAPI) CoP.
The goal is to achieve desired outcomes by monitoring quality and performance, identifying
opportunities for improvement, and making changes to achieve improvement. These desired
outcomes are specifically tied to the other regulations (e.g., patient’s rights, initial and
comprehensive assessments, interdisciplinary group, care planning, and coordination of services).
QAPI operates on both a patient level and a hospice agency level, both of which must collect data
to assess quality, use the data to identify opportunities for improvement, and demonstrate
performance improvement in one or more areas. The goal is to use data in conjunction with
clinical and managerial expertise and experience to drive decision making at the patient level and
hospice agency level. CMS is currently testing multiple quality measures to evaluate hospice
services that hospices may be able to use in their future QAPI efforts. The patient level portion of
QAPI collects data on an individual patient’s assessment/reassessment, care plan, and clinical notes
with the goal of improving patient outcomes. The hospice level portion of QAPI looks at the
clinically focused aggregate data of the patients, and other data sources such as client satisfaction
data, administrative data, marketing data, etc. for the entire hospice agency with the goal of
improving clinical and non-clinical operations.
The method and quality of reporting by hospice social workers will have a direct impact on the
outcomes of a hospice’s QAPI. Decreased access to electronic case files and inappropriate
electronic record formats can diminish the quality of records social workers can contribute to
interdisciplinary care files.
The hospice must ensure the development, implementation, and maintenance an effective,
ongoing, hospice-wide, data-driven QAPI program that:
•
Reflects the complexity of its organization and services
•
Involves all hospice services (including those services furnished under contract or
arrangement)
•
Focuses on indicators related to palliative outcomes
•
Takes actions to demonstrate improvement in hospice performance
Additionally, the hospice must maintain documentary evidence of its QAPI program and be able
to demonstrate its operation to CMS
•
Program Scope
◊
◊
35
Measure, analyze and track indicators to assess processes of care, hospice services and
operations
Show measurable improvement in indicators of palliative outcomes and hospice
services
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•
•
◊
Collect data
■
•
Timing and detail approved by governing body
■
Monitor effectiveness, safety of services, and quality of care
■
Identify opportunities and priorities for improvement
◊
Patient-level QAPI: Individual patient’s outcomes or e
◊
◊
Use data
◊
◊
◊
Program activities
Collect data on what happened for an individual
Assessment/reassessment (§418.54)
Care plan (§418.56)
Clinical notes
Use the data to improve quality of care and outco
The hospice’s performance improvement activities must:
■
Focus on high risk, high volume, problem prone areas affecting palliative
outcomes, patient safety and quality of care (consider incidence, prevalence,
severity)
■
Track adverse events; analyze causes and develop processes and training to
prevent them
■
Take action to improve where and when necessary, AND measure (assess) to
ensure that improvement is sustained
Performance improvement projects
◊
◊
•
Two Levels of QAPI
Program Data
◊
•
HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
Number and scope must be based on needs, and reflect scope, complexity and past
performance of hospice
Document what, why and how successful (measurable improvement)
Executive responsibilities
◊
◊
◊
•
QAPI program is defined, implemented and maintained
Quality of care and patient safety priorities are identified and addressed effectively
Hospice-Level QAPI
◊
Individual(s) are designated to be responsible for operating the QAPI program
◊
Other CoPs that Integrate QAPI
■
Aggregate (patient-level) data
■
Collect satisfaction data
Non-clinically focused
■
Administrative data
■
Marketing - Referral source contact
(b) Standard: Control
■
Outreach to community
(c) Licensed professionals must participate in
the hospice’s quality assessment and
performance improvement program
■
Profitability
■
Fundraising
418.54 Comprehensive Assessment of the Patient
(e) Standard: Patient outcome measures
418.60 Infection Control
418.62 Licensed Professional Services
•
418.76 Hospice aide and homemaker services
(g) Standard: Hospice aide assignments and
duties
418.100 Organization and administration of
services
(b) Standard: Governing body and
administrator
SOCIAL WORK POLICY INSTITUTE
Clinically focused
37
Data from both levels is used to improve clinical oper
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Two Levels of QAPI
•
proved by governing body
Patient-level QAPI: Individual patient’s outcomes or events. Tasks include:
◊
◊
◊
s, safety of services, and quality of care
◊
s and priorities for improvement
◊
Collect data on what happened for an individual patient
Assessment/reassessment (§418.54)
Care plan (§418.56)
Clinical notes
Use the data to improve quality of care and outcomes for that patient (§418.56)
e improvement activities must:
igh volume, problem prone areas affecting palliative
fety and quality of care (consider incidence, prevalence,
; analyze causes and develop processes and training to
ve where and when necessary, AND measure (assess) to
ment is sustained
ojects
be based on needs, and reflect scope, complexity and past
how successful (measurable improvement)
•
implemented and maintained
nt safety priorities are identified and addressed effectively
Hospice-Level QAPI
◊
ed to be responsible for operating the QAPI program
◊
I
the Patient
Clinically focused
■
Aggregate (patient-level) data
■
Collect satisfaction data
Non-clinically focused
■
Administrative data
■
Marketing - Referral source contact
(b) Standard: Control
■
Outreach to community
(c) Licensed professionals must participate in
the hospice’s quality assessment and
performance improvement program
■
Profitability
■
Fundraising
(e) Standard: Patient outcome measures
•
services
(g) Standard: Hospice aide assignments and
duties
tion of
(b) Standard: Governing body and
administrator
37
Data from both levels is used to improve clinical operations and non-clinical operations
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
QAPI Next Steps
•
PEACE Project (Prepare. Embrace. Attend. Communicate. Empower.)
◊
◊
◊
◊
•
◊
◊
◊
◊
◊
◊
M9: Provision of interpreter or translator fo
patients.
■
M10: Percentage of patients who had moder
rating scale at any time in the last week of li
■
M11: Percentage of patients with chart docu
discussion that there is no advance directive.
■
M12: Selected number of occurrences per 10
–
Four types of issues are tracked: falls, medic
malfunction, or error), and patient/family co
Completed in February 2008
Listed 34 suggested measures along with data definitions and a tool for data collection
Available at www.medqic.org
Completed by the Carolinas Center for Medical Excellence, the North Carolina QIO
AIM Project (Assessment. Intervention. Measurement.)
◊
■
◊
Uses the PEACE quality measures and a modified version of the PEACE data
collection tool to assess the quality of care in participating hospice sites, identify areas
for performance improvement, and measure quality of care improvements after
performance improvement projects are implemented.
Examines various factors related to the quality of the data collection tool and quality
measures in accordance with NQF standards.
Identifies factors contributing to disparate and inequitable access to and use of hospice
services.
The AIM Project is divided into 8 tasks and will r
1.
A comprehensive literature review of existin
end-of-life care.
2.
An intervention package, including the appr
collection tools, and education and instructi
QIOs can use to measure and improve the q
patients.
3.
A report on the quality measures and data c
relevant information for the quality measure
national consensus body.
4.
A final report that describes the entire projec
participating sites, challenges encountered an
possibilities for future hospice quality measu
August 2009 – November 2010
Conducted by IPRO, the New York State QIO
Implemented in 7 hospices and 1 palliative care site within the state of New York that
volunteered to participate in the project. The participating sites are representative of
hospices nationwide.
AIM Project is testing 12 quality measures
■
M1: Percentage of patients admitted to hospice who had a screening for
symptoms during the admission visit.
■
M2: Percentage of patients who had a comprehensive assessment completed
within 5 days of admission.
■
M3: For patients who screened positive for pain, the percentage whose pain was
at a comfortable level within 2 days of screening.
■
M4: For patients who screened positive for dyspnea, the percentage who
improved within 1 day of screening.
■
M5: For patients who screened positive for nausea, the percentage of patients
who received treatment within 1 day of screening.
■
M6: Percentage of patients on opioids who have a bowel regimen initiated within
1 day of opioid initiation.
■
M7: For patients who screened positive for anxiety, the percentage of patients
who received treatment within 2 weeks of diagnosis.
■
M8: Percentage of families reporting the hospice attended to family needs for
information about medication, treatment, and symptoms.
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race. Attend. Communicate. Empower.)
■
M9: Provision of interpreter or translator for non-English-speaking or deaf
patients.
■
M10: Percentage of patients who had moderate to severe pain on a standard
rating scale at any time in the last week of life.
■
M11: Percentage of patients with chart documentation of an advance directive or
discussion that there is no advance directive.
■
M12: Selected number of occurrences per 1000 patient days
–
Four types of issues are tracked: falls, medication errors, DME issues (complaint,
malfunction, or error), and patient/family complaints
008
ures along with data definitions and a tool for data collection
org
as Center for Medical Excellence, the North Carolina QIO
rvention. Measurement.)
◊
measures and a modified version of the PEACE data
e quality of care in participating hospice sites, identify areas
ment, and measure quality of care improvements after
t projects are implemented.
related to the quality of the data collection tool and quality
ith NQF standards.
The AIM Project is divided into 8 tasks and will result in 4 major products:
1.
A comprehensive literature review of existing research related to disparities in
end-of-life care.
2.
An intervention package, including the appropriate quality measures, data
collection tools, and education and instruction materials, which hospices and
QIOs can use to measure and improve the quality of care provided to hospice
patients.
3.
A report on the quality measures and data collection tools that provides all
relevant information for the quality measure and tool endorsement process by a
national consensus body.
4.
A final report that describes the entire project, including the experiences of
participating sites, challenges encountered and overcome, lessons learned, and
possibilities for future hospice quality measure and improvement efforts.
ting to disparate and inequitable access to and use of hospice
2010
New York State QIO
s and 1 palliative care site within the state of New York that
in the project. The participating sites are representative of
quality measures
atients admitted to hospice who had a screening for
admission visit.
atients who had a comprehensive assessment completed
ission.
o screened positive for pain, the percentage whose pain was
l within 2 days of screening.
o screened positive for dyspnea, the percentage who
ay of screening.
o screened positive for nausea, the percentage of patients
ent within 1 day of screening.
atients on opioids who have a bowel regimen initiated within
tion.
o screened positive for anxiety, the percentage of patients
ent within 2 weeks of diagnosis.
milies reporting the hospice attended to family needs for
edication, treatment, and symptoms.
39
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX G: CMS APPROVED HOSPICE DEEMED STATUS
PROGRAMS
The Joint Commission’s 2010 Standards for Home Health, Personal Care and Support
Services, and Hospice
www.jcrinc.com/Accreditation-Manuals/2010-Standards-for-Home-Health-PersonalCare-and-Support-Services-and-Hospice/1826/
Ethics, rights and responsibilities
•
Provision of care, treatment, and services
•
Medication management
•
Surveillance, prevention, and control of infection
•
Improving organization performance
•
Leadership
•
Environmental safety and equipment management
•
Management of human resources
•
Management of information
Step 5: Board of Review: A board will review the hosp
materials completed and make a final accreditation de
6.
Step 6: Accreditation: If the hospice organization is ap
of accreditation and marketing materials.
Accreditation Commission for Health Care (ACHC)
www.achc.org/index.php
ACHC has accreditation for programs in:
Since 1999, The Joint Commission has been the organization authorized to administer
accreditation for hospice programs in the United States. Accreditation is granted to programs that
are in compliance with the CMS’s Conditions of Participation and meet the Joint Commission’s
2010 Standards for Home Health, Personal Care and Support Services, and Hospice. These
accreditation requirements focus on the following areas:
•
5.
Community Health Accreditation Program (CHAP)
www.chapinc.org/
•
Home Health
•
Infusion Nursing
•
Hospice
•
Sleep Lab
•
Home/Durable Medical Equipment Services
•
Clinical Respiratory Care
•
Medical Supply Provider
•
Complex Rehabilitation and Assistive Technology Sup
•
Fitter Services
•
Pharmacy Services
•
Non-Certified/Private Duty Program
•
Private Duty Nursing
•
Private Duty Aide
The accreditation process is as follows:
CHAP has also been accrediting hospice programs since 1999. Their accreditation process involve
six steps:
1.
Step 1: Application/Contract: An application and $500 fee are submitted and upon approval,
an accreditation service agreement (contract) is sent back to the agency.
Determine if Program meets the Eligibility Criteria
◊
◊
Step 2: Self Study: Core services and service-specific services are evaluated by the hospice
agency, using tools provided by CHAP. Additional documents and evaluations are required
for home health and hospice programs.
◊
Step 3: CHAP will then assign a reviewer to conduct a site visit and take a census of the
patients being served.
Your organization has been actively providing inand has served a minimum of ten (10) clients with
submitting an application.
Your organization agrees to grant ACHC and/or
records (including client and personnel) that are n
with the standards.
Your organization agrees to pay fees according to
for Survey.
Step 4: Plan of Correction: If any deficiencies or required actions are determined, the hospice
program receives a tool kit and has about 3-4 weeks to make corrections. Another site visit
will be conducted.
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ROVED HOSPICE DEEMED STATUS
5.
Step 5: Board of Review: A board will review the hospice organization based on the
materials completed and make a final accreditation determination.
6.
Step 6: Accreditation: If the hospice organization is approved, they will receive a certificate
of accreditation and marketing materials.
dards for Home Health, Personal Care and Support
Accreditation Commission for Health Care (ACHC)
www.achc.org/index.php
nuals/2010-Standards-for-Home-Health-Personalspice/1826/
ACHC has accreditation for programs in:
s been the organization authorized to administer
the United States. Accreditation is granted to programs that
nditions of Participation and meet the Joint Commission’s
rsonal Care and Support Services, and Hospice. These
he following areas:
•
Home Health
•
Infusion Nursing
•
Hospice
•
Sleep Lab
•
Home/Durable Medical Equipment Services
•
Clinical Respiratory Care
•
Medical Supply Provider
•
Complex Rehabilitation and Assistive Technology Supplier
•
Fitter Services
•
Pharmacy Services
•
Non-Certified/Private Duty Program
•
Private Duty Nursing
•
Private Duty Aide
ies
nd services
control of infection
mance
pment management
ces
rogram (CHAP)
The accreditation process is as follows:
ice programs since 1999. Their accreditation process involve
1.
pplication and $500 fee are submitted and upon approval,
ment (contract) is sent back to the agency.
Determine if Program meets the Eligibility Criteria
◊
◊
d service-specific services are evaluated by the hospice
y CHAP. Additional documents and evaluations are required
rograms.
◊
viewer to conduct a site visit and take a census of the
Your organization has been actively providing in-home and/or alternate site services
and has served a minimum of ten (10) clients with seven (7) active clients before
submitting an application.
Your organization agrees to grant ACHC and/or its designated agent’s full access to all
records (including client and personnel) that are necessary to ascertain compliance
with the standards.
Your organization agrees to pay fees according to the terms specified in the Contract
for Survey.
deficiencies or required actions are determined, the hospice
d has about 3-4 weeks to make corrections. Another site visit
41
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
◊
◊
Your organization agrees to submit applications for all branch offices.
Register for the ACHC Interpretive Guide for Accreditation Standards
3.
Preparing your Preliminary Evidence Report (PER)
4.
Submission of the Application, Deposit and PER
5.
Fee Estimate and Contract
6.
Scheduling the Survey (3-7 months)
7.
Desk Review
8.
On Site Survey. A survey agenda consists of the following:
◊
◊
◊
◊
◊
◊
◊
◊
9.
APPENDIX H: NHPCO STANDARDS FO
Your organization must be operating within the United States and/or its territories.
2.
◊
HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
National Hospice and Palliative Care Organization (NHP
www.nhpco.org/i4a/pages/Index.cfm?pageID=4900
◊
◊
Patient and Family Centered Care: Providing care and
needs and exceed the expectations of those we serve.
2.
Ethical Behavior and Consumer Rights: Upholding hi
advocating for the rights of the patients and family ca
3.
Clinical Excellence and Safety: Ensuring clinical excel
standards of practice.
4.
Inclusion and Access: Promoting inclusiveness in our
people - regardless of race, ethnicity, color, religion, g
age, disease or other characteristics – have access to o
5.
Organizational Excellence: Building a culture of qual
organization that values collaboration and communic
practices.
6.
Workforce Excellence: Fostering a collaborative, inter
promotes inclusion, individual accountability and wo
professional development, training, and support to al
7.
Standards: Adopting the NHPCO Standards for Hosp
Consensus Project’s Clinical Practice Guidelines for Q
foundation for our organization.
8.
Compliance with Laws and Regulations: Ensuring co
regulations, and professional standards of practice, im
that prevent fraud and abuse.
9.
Stewardship and Accountability: Developing a qualifi
and senior leadership who share the responsibilities o
Opening Conference
Tour of the Facility
Company QI/Performance Improvement Presentation
Review any PER correction (if applicable)
Client/Patient Home Visits
Client/Patient record reviews
Personnel record reviews
Interview with staff and management
Exit conference
Scoring Your Survey and Decision. Outcomes:
◊
1.
Accredited – Very minimal or no deficiencies found. Overall the company is compliant
with ACHC standards. Accreditation is granted, but a POC (Plan of Correction) for
any deficiencies found must be developed and sent to your Account Manager within
30 days.
Deferred – Enough deficiencies that the company did not score high enough for
accreditation status. The company will have an opportunity to submit a POC (Plan of
Correction) for all standards that were “partially met” or “not met” and this POC
will be reviewed by a clinical advisor. If all deficiencies have been resolved, the
company will be granted accreditation.
10. Performance Measurement: Collecting, analyzing, and
measurement data to foster quality and performance
services.
Denied – Many severe deficiencies that cause a company to be outside of the deferred
range. In this instance, the company is out of compliance with ACHC standards and
must re-apply for accreditation. All fees and application documents must be
re-submitted in order to re-apply.
10. Accreditation Status
11. Renewal
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to submit applications for all branch offices.
APPENDIX H: NHPCO STANDARDS FOR PRACTICE
e operating within the United States and/or its territories.
National Hospice and Palliative Care Organization (NHPCO) Standards for Practice
www.nhpco.org/i4a/pages/Index.cfm?pageID=4900
retive Guide for Accreditation Standards
idence Report (PER)
1.
Patient and Family Centered Care: Providing care and services that are responsive to the
needs and exceed the expectations of those we serve.
2.
Ethical Behavior and Consumer Rights: Upholding high standards of ethical conduct and
advocating for the rights of the patients and family caregivers.
3.
Clinical Excellence and Safety: Ensuring clinical excellence and promoting safety through
standards of practice.
4.
Inclusion and Access: Promoting inclusiveness in our community by ensuring that all
people - regardless of race, ethnicity, color, religion, gender, disability, sexual orientation,
age, disease or other characteristics – have access to our programs and services.
5.
Organizational Excellence: Building a culture of quality and accountability within our
organization that values collaboration and communication and ensures ethical business
practices.
6.
Workforce Excellence: Fostering a collaborative, interdisciplinary environment that
promotes inclusion, individual accountability and workforce excellence, through
professional development, training, and support to all staff and volunteers.
7.
Standards: Adopting the NHPCO Standards for Hospice Programs and/or the National
Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care as the
foundation for our organization.
sion. Outcomes:
8.
l or no deficiencies found. Overall the company is compliant
ccreditation is granted, but a POC (Plan of Correction) for
st be developed and sent to your Account Manager within
Compliance with Laws and Regulations: Ensuring compliance with applicable laws,
regulations, and professional standards of practice, implementing systems and processes
that prevent fraud and abuse.
9.
Stewardship and Accountability: Developing a qualified and diverse governance structure
and senior leadership who share the responsibilities of fiscal and managerial oversight.
, Deposit and PER
nths)
da consists of the following:
e Improvement Presentation
n (if applicable)
s
ws
management
ncies that the company did not score high enough for
company will have an opportunity to submit a POC (Plan of
rds that were “partially met” or “not met” and this POC
cal advisor. If all deficiencies have been resolved, the
accreditation.
10. Performance Measurement: Collecting, analyzing, and actively using performance
measurement data to foster quality and performance improvement in all areas of care and
services.
iciencies that cause a company to be outside of the deferred
e company is out of compliance with ACHC standards and
ation. All fees and application documents must be
e-apply.
43
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX I: NASW STANDARDS FOR PALLIATIVE AND
END-OF-LIFE CARE
10. Continuing Education – Social workers shall assume p
continued professional development in accordance wi
Continuing Professional Education (NASW, 2002) an
National Association of Social Workers Standards for Palliative and End-of-Life Care
www.socialworkers.org/practice/bereavement/standards/default.asp
11. Supervision, Leadership, and Training – Social worke
of life care should lead educational, supervisory, admi
individuals, groups, and organizations.
The NASW has eleven standards for practitioners working in palliative and end of life care:
1.
Ethics and Values – The values, ethics, and standards of both the profession and
contemporary bioethics shall guide social workers practicing in palliative and end of life
care. The NASW Code of Ethics (NASW, 2000) is one of several essential guides to ethical
decision making and practice.
2.
Knowledge – Social workers in palliative and end of life care shall demonstrate a working
knowledge of the theoretical and biopsychosocial factors essential to effectively practice
with clients and professionals.
3.
Assessment – Social workers shall assess clients and include comprehensive information to
develop interventions and treatment planning.
4.
Intervention/Treatment Planning – Social workers shall incorporate assessments in
developing and implementing intervention plans that enhance the clients’ abilities and
decisions in palliative and end of life care.
5.
Attitude/Self-Awareness – Social workers in palliative and end of life care shall
demonstrate an attitude of compassion and sensitivity to clients, respecting clients’ rights
to self-determination and dignity. Social workers shall be aware of their own beliefs,
values, and feelings and how their personal self may influence their practice.
6.
Empowerment and Advocacy – The social worker shall advocate for the needs, decisions,
and rights of clients in palliative and end of life care. The social worker shall engage in
social and political action that seeks to ensure that people have equal access to resources to
meet their biopsychosocial needs in palliative and end of life care.
7.
Documentation – Social workers shall document all practice with clients in either the client
record or in the medical chart. These may be written or electronic records.
8.
Interdisciplinary Teamwork – Social workers should be part of an interdisciplinary effort
for the comprehensive delivery of palliative and end of life services. Social workers shall
strive to collaborate with team members and advocate for clients’ needs with objectivity
and respect to reinforce relationships with providers who have cared for the patient along
the continuum of illness.
9.
Cultural Competence – Social workers shall have, and shall continue to develop,
specialized knowledge and understanding about history, traditions, values, and family
systems as they relate to palliative and end of life care within different groups. Social
workers shall be knowledgeable about, and act in accordance with, the NASW Standards
for Cultural Competence in Social Work Practice (NASW, 2001).
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10. Continuing Education – Social workers shall assume personal responsibility for their
continued professional development in accordance with the NASW Standards for
Continuing Professional Education (NASW, 2002) and state requirements.
ANDARDS FOR PALLIATIVE AND
11. Supervision, Leadership, and Training – Social workers with expertise in palliative and end
of life care should lead educational, supervisory, administrative, and research efforts with
individuals, groups, and organizations.
rkers Standards for Palliative and End-of-Life Care
bereavement/standards/default.asp
practitioners working in palliative and end of life care:
s, ethics, and standards of both the profession and
guide social workers practicing in palliative and end of life
cs (NASW, 2000) is one of several essential guides to ethical
n palliative and end of life care shall demonstrate a working
nd biopsychosocial factors essential to effectively practice
hall assess clients and include comprehensive information to
tment planning.
ng – Social workers shall incorporate assessments in
intervention plans that enhance the clients’ abilities and
of life care.
al workers in palliative and end of life care shall
mpassion and sensitivity to clients, respecting clients’ rights
ity. Social workers shall be aware of their own beliefs,
heir personal self may influence their practice.
– The social worker shall advocate for the needs, decisions,
ve and end of life care. The social worker shall engage in
seeks to ensure that people have equal access to resources to
ds in palliative and end of life care.
ers shall document all practice with clients in either the client
These may be written or electronic records.
Social workers should be part of an interdisciplinary effort
y of palliative and end of life services. Social workers shall
m members and advocate for clients’ needs with objectivity
nships with providers who have cared for the patient along
workers shall have, and shall continue to develop,
derstanding about history, traditions, values, and family
tive and end of life care within different groups. Social
le about, and act in accordance with, the NASW Standards
cial Work Practice (NASW, 2001).
45
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX J: TRAINING AND CREDENTIALS FOR HOSPICE
SOCIAL WORKERS
APPENDIX K: CITATIONS FROM CURR
HOSPICE SOCIAL WORK RESEARCH S
(prepared by Deborah Waldrop - see pages 6 to 9)
Credentials
•
Advanced Certified Hospice and Palliative Social Worker (ACHP-SW)
www.socialworkers.org/credentials/credentials/chpsw.asp
•
Certified Hospice and Palliative Social Worker (CHP-SW)
www.socialworkers.org/credentials/credentials/chpsw.asp
Ai, A.L., Hopp, F.P., & Sherer, M. (2006). Getting affairs in o
and religious coping on end-of-life planning among o
Social Work in End-of-Life and Palliative Care, 2(1),
Arnold, E.M., Artin, K.A., Griffith, D., Person, J.L., & Graha
end of life: Perceptions of hospice social workers. Jou
Palliative Care 2(4), 61-83.
Training and Education
•
◊
◊
◊
◊
•
•
Bern-Klug M. (2006). Calling the question of “possible dying
Triggers, barriers and facilitators. Journal of Social W
Care 2(3), 61-85.
Understanding End-of-Life Care: The Social Worker’s Role
Understanding Cancer Caregiving: The Social Worker’s Role
Achieving Cultural Competence to Reduce Health Disparities in End of Life Care
Bern-Klug, M. (2004). “Getting everyone on the same page:”
perspectives on end-of-life care. Journal of Palliative M
A daganatos betegségek megismertetése Magyarországon: A szociális munkások
(Understanding Cancer in Hungary: The Social Worker’s Role)
Bern-Klug, M. (2004). The ambiguous dying syndrome. Heal
NASW’s continuing education program also approves CEUs on hospice social work and
other end-of-life issues provided by other organizations
http://socialworkers.org/ce/approval.asp
Bern-Klug, M. (2008). State variations in nursing home socia
Gerontological Social Work 51(3-4), 379-409.
NHCPO’s Competency-Based Education for Social Workers –
www.nhpco.org/i4a/pages/index.cfm?pageid=3913
Bern-Klug, M. (2009). A framework for categorizing social in
in nursing homes. The Gerontologist 49(4), 495-507.
The purpose of NHPCO’s social work competencies module provides a self-administered
interactive program that helps social workers master skills for practice, foster continual
learning, and establish a strong sense of professionalism and accountability, which will
help increase quality of services for patients and caregivers. The competencies module has
the following goals:
Bern-Klug, M., Kramer, B.J., & Linder, J.F. (2005). All aboar
research agenda in end-of-life and palliative care. Jou
& Palliative Care 1(2), 71-86.
◊
◊
•
Bern Klug, M., & Forbes-Thompson S. (2008). Family memb
residents: “She’s the only mother I got.” Journal of G
NASW WebEd Continuing Education (CEU) on End-of-Life Care
www.naswwebed.org/
Bullock, K. (2006). Promoting advance directive among Afric
Journal of Palliative Medicine, 9(1), 183-195.
“To offer individual practitioners a tool for interactive on-line study and competency
evaluation related to grief and depression;
Bullock, K., McGraw, S.A., Blank, K., & Bradley, E.H. (2005
Americans facing end-of-life decisions? A focus group
End-of-Life & Palliative Care, 1(3), 3-19.
To provide a sample format for agencies seeking to develop programs of competency
education.”
The Hospice Foundation of America (HFA) 2010 National Bereavement Teleconference:
Living with Grief®: Cancer and End-of Life Care
www.hospicefoundation.org/pages/page.asp?page_id=65770
Cagle J.G. & Bolte, S. (2009). Sexuality and life-threatening i
and palliative care. Health & Social Work 34(3), 223
Cagle, J.G., (2009). Education: A complex and empowering s
life. Health & Social Work 34(1), 17-27.
The NASW supports HFA each year for its National Bereavement Teleconference. Social
workers may obtain continuing education units by participating in this event. This year’s
conference is on March 24 and is available online.
SOCIAL WORK POLICY INSTITUTE
Chapin, R., Gordon, T., Landry, S., Rachlin, R. (2007). Hosp
the door of the nursing facility: Implications for socia
End-of-Life & Palliative Care 3(2), 19-38.
47
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTICE, AND RESEARCH REPORT
AND CREDENTIALS FOR HOSPICE
APPENDIX K: CITATIONS FROM CURRENT STATUS OF
HOSPICE SOCIAL WORK RESEARCH SECTION
(prepared by Deborah Waldrop - see pages 6 to 9)
Ai, A.L., Hopp, F.P., & Sherer, M. (2006). Getting affairs in order: Influences of social support
and religious coping on end-of-life planning among open-heart surgery patients. Journal of
Social Work in End-of-Life and Palliative Care, 2(1), 71-94.
nd Palliative Social Worker (ACHP-SW)
ntials/credentials/chpsw.asp
ve Social Worker (CHP-SW)
ntials/credentials/chpsw.asp
Arnold, E.M., Artin, K.A., Griffith, D., Person, J.L., & Graham, K.G. (2006). Unmet needs at the
end of life: Perceptions of hospice social workers. Journal of Social Work in End-of-Life &
Palliative Care 2(4), 61-83.
ucation (CEU) on End-of-Life Care
Bern Klug, M., & Forbes-Thompson S. (2008). Family members’ responsibilities to nursing home
residents: “She’s the only mother I got.” Journal of Gerontological Nursing 34(2), 43-52.
e Care: The Social Worker’s Role
Bern-Klug M. (2006). Calling the question of “possible dying” among nursing home residents;
Triggers, barriers and facilitators. Journal of Social Work in End-of-Life & Palliative
Care 2(3), 61-85.
regiving: The Social Worker’s Role
etence to Reduce Health Disparities in End of Life Care
Bern-Klug, M. (2004). “Getting everyone on the same page:” Nursing home physicians’
perspectives on end-of-life care. Journal of Palliative Medicine 7(4), 533-544.
megismertetése Magyarországon: A szociális munkások
Hungary: The Social Worker’s Role)
Bern-Klug, M. (2004). The ambiguous dying syndrome. Health & Social Work 29(1), 55-65.
program also approves CEUs on hospice social work and
ed by other organizations
proval.asp
Bern-Klug, M. (2008). State variations in nursing home social worker qualifications. Journal of
Gerontological Social Work 51(3-4), 379-409.
Education for Social Workers –
ex.cfm?pageid=3913
Bern-Klug, M. (2009). A framework for categorizing social interactions related to end-of-life care
in nursing homes. The Gerontologist 49(4), 495-507.
al work competencies module provides a self-administered
social workers master skills for practice, foster continual
g sense of professionalism and accountability, which will
s for patients and caregivers. The competencies module has
Bern-Klug, M., Kramer, B.J., & Linder, J.F. (2005). All aboard: Advancing the social work
research agenda in end-of-life and palliative care. Journal of Social Work in End-of-Life
& Palliative Care 1(2), 71-86.
Bullock, K. (2006). Promoting advance directive among African Americans: A faith-based model.
Journal of Palliative Medicine, 9(1), 183-195.
itioners a tool for interactive on-line study and competency
and depression;
Bullock, K., McGraw, S.A., Blank, K., & Bradley, E.H. (2005). What matters to older African
Americans facing end-of-life decisions? A focus group study. Journal of Social Work in
End-of-Life & Palliative Care, 1(3), 3-19.
at for agencies seeking to develop programs of competency
merica (HFA) 2010 National Bereavement Teleconference:
d End-of Life Care
ages/page.asp?page_id=65770
Cagle J.G. & Bolte, S. (2009). Sexuality and life-threatening illness: Implications for social work
and palliative care. Health & Social Work 34(3), 223-233.
Cagle, J.G., (2009). Education: A complex and empowering social work intervention at the end of
life. Health & Social Work 34(1), 17-27.
h year for its National Bereavement Teleconference. Social
g education units by participating in this event. This year’s
d is available online.
Chapin, R., Gordon, T., Landry, S., Rachlin, R. (2007). Hospice use by older adults knocking on
the door of the nursing facility: Implications for social work in Journal of Social Work in
End-of-Life & Palliative Care 3(2), 19-38.
47
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
Csikai, E. (1999). The role of values and experience in determining social workers’ attitudes
toward euthanasia and assisted suicide. Social Work in Health Care 30(1), 75-95.
Kramer, B.J., Kavanaugh, M., Trentham-Dietz, Walsh, M., &
Family Conflict at the End of Life: The experience of
with lung cancer. The Gerontologist 50(2), 215-225.
Csikai, E.L. & Raymer, M. (2005). Social workers’ educational needs in end-of-life care. Social
Work in Health Care 41(1), 53-72.
Lawson, R. (2007). Home and hospital: Hospice and palliativ
impacts the social work role. Journal of Social Work
3-17.
Csikai, E.L. (1999. Euthanasia and assisted suicide: Issues for social work practice. Journal of
Gerontological Social Work 31(3-4), 49-63.
Csikai, E.L. (2004). Social workers’ participation in the resolution of ethical dilemmas in hospice
care. Health & Social Work 29(1), 67-76.
Miller, P.J., Hedlund, S.C., & Soule, A.B. (2006). The challen
death with dignity in Oregon. Journal of Social Work
2(2), 25-43.
Doherty, J.B. & DeWeaver, K.L. (2004). A survey of evaluation practices for hospice social
workers. Home Health Care Services Quarterly 23(4), 1-13.
Moon, R.P. & Cagle, J.G. (2009). An analysis of end-of-life c
proceedings. Gerontology & Geriatrics Education 30
Francoeur, R.B., Payne, R., Raveis, V. H., & Shim, H. (2007, 1). Palliative care in the inner-city:
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425-434.Francoeur, R. B. (2006, 3). A flexible item to screen for depression in inner-city
minorities during palliative care symptom assessment. American Journal of Geriatric
Psychiatry, 14(3), 227-235.
Munn, J. & Zimmerman, S. (2006). A good death for residen
members speak. Journal of Social Work in End-of-Lif
Munn, J.C., Dobbs, D., Meier, A., Williams, C.S., Biola, H.,
end-of-life experience in long-term care: Five themes i
residents, family members and staff. The Gerontologi
Gardner, D.S. (2008). Cancer in a dyadic context: Older couples’ negotiation of ambiguity and
search for meaning at the end of life. Journal of Social Work in End-of-Life & Palliative
Care 4(2), 135-159.
National Hospice and Palliative Care Organization (2004). D
Agenda. Journal of Pain and Symptom Management 2
Parker Oliver & Peck, M. (2006). Inside the interdisciplinary
workers. Journal of Social Work in End-of-Life & Pa
Gwyther, L.P., Altilio, T., Blacker, S., Christ, G., Csikai, E.L., Hooyman, N., Kramer, B.J., Linton,
J., Raymer, M. & Howe, J. (2005). Social work competencies in palliative and end-of-life
care. Journal of Social Work in End-of-Life & Palliative Care 1(1), 87-120.
Parker Oliver, D., Bronstein, L.R., & Kurzejeski, L. (2005). E
successful collaboration on the hospice team. Health
Head, B. & Faul, A. (2005). Terminal restlessness as perceived by hospice professionals. American
Journal of Hospice and Palliative Care 22(4), 277-282.
Hopp, F.P. & Duffy, S. (2000). Racial variations in end-of-life care. Journal of the American
Geriatrics Society, 48(6), 658-663.
Parker Oliver, D., Wittenberg-Lyles, E., Washington, K.T., &
role in hospice pain management: A national survey. J
& Palliative Care 5, 61-74.
Hopp, F.P. (2000). Preferences for surrogate decision-makers, informal communication, and
advance directives among community-dwelling elderly: Results from a national study. The
Gerontologist, 40(4), 449-457.
Ratner, E.R., Norlander, L., McSteen, K. (2001). Death at ho
planning process in the home setting: The kitchen tab
American Geriatrics Society 49(6), 778-781.
Huff, M.B., Weisenfluh, S., Murphy, M., & Black, P.J. (2006). End-of-life care and social work
education: What do students need to know? Journal of Gerontological Social Work
48(1-2), 219-231.
Reese, D.J., Raymer, M. (2004). Relationships between socia
outcomes: Results of a national hospice social work s
Sanders, S. & Power, J. (2009). Roles, responsibilities and rel
caring for wives with progressive dementia and other
Work 34(1), 41-51.
Kramer, B.J., & Auer, C. (2005). Challenges to providing end-of-life care to low-income elders
with advanced chronic disease: Lessons learned from a model program. The Gerontologist
45(5), 651-660.
Sanders, S., Butcher, H.K., Swails, P., & Power, J. (2009). Por
dementia patients receiving hospice care. Death Studi
Kramer, B.J., Boelk, A.Z., & Auer, C. (2006). Family conflict at the end of life: Lessons learned in
a model program for vulnerable adults. Journal of Palliative Medicine 9(3), 791-801.
Sanders, S., Ott, C.H., Kelber, S.T., & Noonan, P. (2008) The
caregivers of persons with Alzheimer’s disease and rel
495-523.
Kramer, B.J., Christ, G.H., Bern-Klug, M., & Francoeur, R.F. (2005) A national agenda for social
work research in palliative and end-of-life care. Journal of Palliative Medicine 8(2),
418-431.
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nd experience in determining social workers’ attitudes
d suicide. Social Work in Health Care 30(1), 75-95.
Kramer, B.J., Kavanaugh, M., Trentham-Dietz, Walsh, M., & Yonker, J.A. (2010). Predictors of
Family Conflict at the End of Life: The experience of spouses and adult children of persons
with lung cancer. The Gerontologist 50(2), 215-225.
ocial workers’ educational needs in end-of-life care. Social
3-72.
Lawson, R. (2007). Home and hospital: Hospice and palliative care: How the environment
impacts the social work role. Journal of Social Work in End-of-Life & Palliative Care 3(2),
3-17.
sisted suicide: Issues for social work practice. Journal of
1(3-4), 49-63.
articipation in the resolution of ethical dilemmas in hospice
9(1), 67-76.
Miller, P.J., Hedlund, S.C., & Soule, A.B. (2006). The challenge to support patients who consider
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Moon, R.P. & Cagle, J.G. (2009). An analysis of end-of-life content in Aging Network conference
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Munn, J.C., Dobbs, D., Meier, A., Williams, C.S., Biola, H., & Zimmerman, S. (2008) The
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Agenda. Journal of Pain and Symptom Management 28(5), 488-496.
Parker Oliver & Peck, M. (2006). Inside the interdisciplinary team experience of hospice social
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Parker Oliver, D., Bronstein, L.R., & Kurzejeski, L. (2005). Examining variables related to
successful collaboration on the hospice team. Health & Social Work 30(4), 279-286.
restlessness as perceived by hospice professionals. American
tive Care 22(4), 277-282.
Parker Oliver, D., Wittenberg-Lyles, E., Washington, K.T., & Sehrawat, S. (2009). Social work
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663.
Ratner, E.R., Norlander, L., McSteen, K. (2001). Death at home following a targeted advance care
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American Geriatrics Society 49(6), 778-781.
rogate decision-makers, informal communication, and
mmunity-dwelling elderly: Results from a national study. The
.
Reese, D.J., Raymer, M. (2004). Relationships between social work involvement and hospice
outcomes: Results of a national hospice social work survey. Social Work 49(3), 415-422.
M., & Black, P.J. (2006). End-of-life care and social work
need to know? Journal of Gerontological Social Work
Sanders, S. & Power, J. (2009). Roles, responsibilities and relationships among older husbands
caring for wives with progressive dementia and other chronic conditions. Health & Social
Work 34(1), 41-51.
lenges to providing end-of-life care to low-income elders
: Lessons learned from a model program. The Gerontologist
Sanders, S., Butcher, H.K., Swails, P., & Power, J. (2009). Portraits of caregivers of end-stage
dementia patients receiving hospice care. Death Studies 33(6), 521-556.
(2006). Family conflict at the end of life: Lessons learned in
le adults. Journal of Palliative Medicine 9(3), 791-801.
Sanders, S., Ott, C.H., Kelber, S.T., & Noonan, P. (2008) The experience of high levels of grief in
caregivers of persons with Alzheimer’s disease and related dementia. Death Studies 32(6),
495-523.
M., & Francoeur, R.F. (2005) A national agenda for social
d end-of-life care. Journal of Palliative Medicine 8(2),
49
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Schroepfer, T.A. (2007). Critical events in the dying process: The potential for physical and
psychosocial suffering. Journal of Palliative Medicine 10(1), 136-147.
Wesley, C., Tunney, K., Duncan, E. (2004). Educational need
assessment and interventions with diverse population
Palliative Medicine 21(1), 40-46.
Schroepfer, T.A. (2006). Mind frames towards dying and factors motivating their adoption by
terminally ill elders. Journals of Gerontology Series B-Psychological Sciences & Social
Sciences 61(3), S129-139.
Williams, S.W., Williams, C.S., Zimmerman, S., Munn, J., Do
Emotional and physical health of informal caregivers
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Sciences 63(3), S171-183.
Schroepfer, T.A. (2008). Social relationships and their role in the consideration to hasten death.
The Gerontologist 48(5), 612-621.
Schroepfer, T.A., Noh, H., & Kavenaugh, M. (2009). The myriad strategies for seeking control in
the dying process. The Gerontologist 49(6), 755-766.
Townsend, A.L., Ishler, K.J., Vargo, E.H., Shapiro, B.M., Pitorak, E.F., & Matthews, C.R. (2007).
The FACES Project: An academic-community partnership to improve end-of-life care for
families. Journal of Gerontological Social Work 50(1-2), 7-20.
Waldrop D.P. (2008). Evidence–based psychosocial treatment at the end of life. Journal of
Gerontological Social Work 50, Suppl 1, 267-292.
Waldrop, D.P. & Kirkendall, A. (2009). Comfort measures: A qualitative study of nursing
home-based end-of-life care. Journal of Palliative Medicine 12(8), 719-724.
Waldrop, D.P. & Rinfrette, E.S. (2009). Can short hospice enrollment be long enough? Comparing
the perspectives of hospice professionals and family caregivers. Palliative and Supportive
Care 7(1), 37-47.
Waldrop, D.P. & Rinfrette, E.S. (2009). Making the transition to hospice: Exploring hospice
professionals’ perspectives. Death Studies 33(6), 557-580.
Waldrop, D.P. (2006). At the eleventh hour: Psychosocial dynamics in short hospice stays. The
Gerontologist 46(1), 106-114.
Waldrop, D.P. (2007). Caregiver grief in terminal illness and bereavement: A mixed methods
study. Health & Social Work 32(2), 197-206.
Waldrop, D.P., Kramer, B.J., Skretny, J.A., Milch, R. & Finn, B. (2005). Final transitions: Family
caregiving at the end of life. Journal of Palliative Medicine 8(3), 623-638.
Waldrop, D.P., Milch R.A., & Skretny, J.A. (2005). Understanding family responses to life-limiting
illness: In-depth interviews with hospice patients and their family members. Journal of
Palliative Care 21(2), 88-96.
Walsh-Burke, K., & Csikai, E.L. (2005). Professional social work education in end-of-life care:
Contribution of the Project on Death in America’s Social Work Leadership Development
program. Journal of Social Work in End-of-Life & Palliative Care 1(2), 11-26.
Washington, K.T., Bickel-Swenson, D., & Stephens, N. (2008). Barriers to hospice use among
African Americans: A systematic review. Health & Social Work 33(4), 267-274.
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s in the dying process: The potential for physical and
l of Palliative Medicine 10(1), 136-147.
Wesley, C., Tunney, K., Duncan, E. (2004). Educational needs of hospice social workers: Spiritual
assessment and interventions with diverse populations. American Journal of Hospice and
Palliative Medicine 21(1), 40-46.
towards dying and factors motivating their adoption by
of Gerontology Series B-Psychological Sciences & Social
Williams, S.W., Williams, C.S., Zimmerman, S., Munn, J., Dobbs, D., & Sloane, P. 2008).
Emotional and physical health of informal caregivers of residents at the end of life: The
role of social support. Journals of Gerontology Series B-Psychological Sciences & Social
Sciences 63(3), S171-183.
nships and their role in the consideration to hasten death.
621.
ugh, M. (2009). The myriad strategies for seeking control in
ologist 49(6), 755-766.
.H., Shapiro, B.M., Pitorak, E.F., & Matthews, C.R. (2007).
mic-community partnership to improve end-of-life care for
gical Social Work 50(1-2), 7-20.
psychosocial treatment at the end of life. Journal of
0, Suppl 1, 267-292.
9). Comfort measures: A qualitative study of nursing
ournal of Palliative Medicine 12(8), 719-724.
). Can short hospice enrollment be long enough? Comparing
ofessionals and family caregivers. Palliative and Supportive
). Making the transition to hospice: Exploring hospice
eath Studies 33(6), 557-580.
hour: Psychosocial dynamics in short hospice stays. The
in terminal illness and bereavement: A mixed methods
32(2), 197-206.
J.A., Milch, R. & Finn, B. (2005). Final transitions: Family
ournal of Palliative Medicine 8(3), 623-638.
y, J.A. (2005). Understanding family responses to life-limiting
th hospice patients and their family members. Journal of
5). Professional social work education in end-of-life care:
Death in America’s Social Work Leadership Development
ork in End-of-Life & Palliative Care 1(2), 11-26.
, & Stephens, N. (2008). Barriers to hospice use among
tic review. Health & Social Work 33(4), 267-274.
51
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
care. Home care hospice social workers have exposure to the
therefore should adapt care to carefully consider this environ
may be administering care) in the assessment and planning of
teamwork is required in both environments. However, hospic
balanced role of care planning than hospital palliative care so
that social workers’ skills and knowledge base for each envir
defined in order to focus the scope of practice for palliative c
standards.
APPENDIX L: ANNOTATED BIBLIOGRAPHY
Social Work’s Role in Hospice Care
Bradsen, C.K. (2005). Social work and end-of-life care: reviewing the past and moving forward.
Journal of Social Work in End-of-Life and Palliative Care, 1(2), 45-70. doi:
10.1300/J457v01n0205.
This article summarizes research on social work in hospice care from 1990 through July 2004 and
provides a deeper background to the more recent articles listed in this bibliography. Discussion
centers on articles that evaluate the roles, practices, and core values of social workers, and the
barriers they experience in providing end-of-life care. Social workers provide psychosocial support
to patients and families including counseling, assessment and referrals to further services,
developing and implementing Advanced Directives, patient advocacy with other care
professionals, case management (e.g., financial information, referrals to community resources,
etc.), bereavement care, ethical considerations for treatment plans, education about death and
dying, assistance with funeral arrangements, and at times spiritual counseling.
Reese, D.J. & Raymer, M. (2004). Relationships between soc
outcomes: results of the national hospice social work
The researchers conducted a quantitative survey with patient
directors to explore outcomes related to social workers’ level
teams. The sample included 330 patients, 66 social workers,
agencies (registered with NHPCO) throughout the country. E
questionnaire about social work involvement in care, hospice
outcomes. Results show that social workers have little involv
38% include social workers at intake). However, when social
it increases their ability to plan for potential barriers to treatm
thereby decreasing future costs of care. Results also indicate a
functioning as a social worker’s credentials increase (e.g., BSW
continue to have higher case loads (16.7 patients to 1 social w
and only 18% are supervised by a social worker. Social work
integration and feeling equally respected as other team memb
recommend establishing higher social work salaries, hiring so
and experience, obtaining social work supervision for social w
intake interviews, and hiring a sufficient number of social wo
When working with other professionals in organizations, social workers assist in giving difficult
diagnoses, assessing a client system to develop treatment plans, facilitating communication
between staff, mentoring and supervising other social workers, educating colleagues on a client’s
social context, developing policies and programs for services related to end-of-life care and
managing staff development and volunteer training. Social workers identify core values as
advocating for a patient’s right to self-determination, pursuing care for the common good,
providing care for patients that address all areas of pain (physical, social, emotional, spiritual),
and maintain respect for those who are dying or are important to the dying person.
Research highlights the need for social workers to be involved at the policy level in educating
hospice stakeholders and decision-makers about the social work roles, values, and barriers to
providing quality end-of-life care. Research also lists the barriers to service delivery as insufficient
educational preparation, role conflicts with other staff in delivering services, ambiguities in
hospice agency policies regarding service delivery, and varying expectations from administrators.
Further, a lack of knowledge between professions about each others’ roles leads to
interdisciplinary communication challenges and differing goals. Lastly, there is an overall lack of
empirical research and funding for research, which can result in the devaluing of social workers as
a hospice care team members. The author concludes from the review that social workers have
been integral members of end-of-life care teams for quite some time, although empirical evidence
showing the importance of their roles is missing. She suggests adding more end-of-life care issues
to the social work BSW and MSW curriculum and setting a research agenda that builds on work
on end-of-life care from other professions and focuses on social workers’ contribution to care
teams.
Parker Oliver, D., Wittenberg-Lyles, E., Washington, K.T., &
role in hospice pain management: A national survey. J
& Palliative Care, 5, 61-74. doi: 10.1080/155242509
These authors evaluated hospice social workers delivery of se
interdisciplinary team, specifically how they assessed and trea
caregivers. A mail survey was sent to social workers using the
Research Network (PopCRN), which yielded 90 respondents
Questions focused on social workers’ delivery of services, inte
members, and interdisciplinary team structure. Results show
had an MSW, an average of 6 years experience, and an avera
average of 11.2 cases). Additionally, social workers can, but d
attitudes in pain management. However, they are regularly co
colleagues and feel like active team participants in team meet
about the increased focus on the medicalization of hospice, th
address, and interface with caregivers about beliefs and abou
of care. While this study and others by the lead author descri
social work integration with hospice teams, the findings are n
was drawn from a network of hospice organizations that are
research and encourage progressive hospice care practices. N
the growing body of knowledge on hospice social work.
Lawson, R. (2007). Home and hospital: Hospice and palliative care: How the environment
impacts the social work role. Journal of Social Work in End-of-Life & Palliative Care,3(2),
3-17. doi: 10.1300/J457v03n02_02.
This invited article summarizes the various aspects of coordination of care, teamwork, and
collaboration of social workers in hospital palliative care and home hospice care environments.
Palliative care social workers provide consistency of care in an unfamiliar and regularly changing
environment, balance a physician-centered treatment model while assessing and advocating for the
whole client, and help ensure that patients are referred to hospice care at the end-of-life stage of
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care. Home care hospice social workers have exposure to the patient’s home environment and
therefore should adapt care to carefully consider this environment, and include caregivers (who
may be administering care) in the assessment and planning of care process. Interdisciplinary
teamwork is required in both environments. However, hospice social work allows for a more
balanced role of care planning than hospital palliative care social workers. The author suggests
that social workers’ skills and knowledge base for each environment are different and should be
defined in order to focus the scope of practice for palliative care and hospice social work practice
standards.
ED BIBLIOGRAPHY
d end-of-life care: reviewing the past and moving forward.
-of-Life and Palliative Care, 1(2), 45-70. doi:
ocial work in hospice care from 1990 through July 2004 and
more recent articles listed in this bibliography. Discussion
les, practices, and core values of social workers, and the
end-of-life care. Social workers provide psychosocial support
nseling, assessment and referrals to further services,
ed Directives, patient advocacy with other care
financial information, referrals to community resources,
erations for treatment plans, education about death and
ments, and at times spiritual counseling.
Reese, D.J. & Raymer, M. (2004). Relationships between social work involvement and hospice
outcomes: results of the national hospice social work survey. Social Work, 49(3), 415-422.
The researchers conducted a quantitative survey with patients, social workers, and hospice
directors to explore outcomes related to social workers’ level of involvement in hospice care
teams. The sample included 330 patients, 66 social workers, and 66 hospice directors from 66
agencies (registered with NHPCO) throughout the country. Each participant was mailed a
questionnaire about social work involvement in care, hospice care processes, and hospice
outcomes. Results show that social workers have little involvement during the intake process (only
38% include social workers at intake). However, when social workers are involved in assessment,
it increases their ability to plan for potential barriers to treatment as well as prevent future crises,
thereby decreasing future costs of care. Results also indicate a positive correlation in team
functioning as a social worker’s credentials increase (e.g., BSW to MSW). Social workers also
continue to have higher case loads (16.7 patients to 1 social worker vs. 5.5 patients to 1 nurse)
and only 18% are supervised by a social worker. Social workers report frustrations with team
integration and feeling equally respected as other team members in the care process. The authors
recommend establishing higher social work salaries, hiring social workers with more education
and experience, obtaining social work supervision for social workers, including social workers in
intake interviews, and hiring a sufficient number of social workers dedicated to client care.
als in organizations, social workers assist in giving difficult
develop treatment plans, facilitating communication
ing other social workers, educating colleagues on a client’s
d programs for services related to end-of-life care and
nteer training. Social workers identify core values as
-determination, pursuing care for the common good,
ss all areas of pain (physical, social, emotional, spiritual),
re dying or are important to the dying person.
l workers to be involved at the policy level in educating
kers about the social work roles, values, and barriers to
earch also lists the barriers to service delivery as insufficient
with other staff in delivering services, ambiguities in
ice delivery, and varying expectations from administrators.
professions about each others’ roles leads to
enges and differing goals. Lastly, there is an overall lack of
earch, which can result in the devaluing of social workers as
thor concludes from the review that social workers have
are teams for quite some time, although empirical evidence
is missing. She suggests adding more end-of-life care issues
rriculum and setting a research agenda that builds on work
ons and focuses on social workers’ contribution to care
Parker Oliver, D., Wittenberg-Lyles, E., Washington, K.T., & Sehrawat, S. (2009). Social work
role in hospice pain management: A national survey. Journal of Social Work in End-of-Life
& Palliative Care, 5, 61-74. doi: 10.1080/15524250903173900.
These authors evaluated hospice social workers delivery of services as a member of an
interdisciplinary team, specifically how they assessed and treated pain as described by patients and
caregivers. A mail survey was sent to social workers using the Population Based Palliative Care
Research Network (PopCRN), which yielded 90 respondents from 19 states across the US.
Questions focused on social workers’ delivery of services, interaction with caregivers and team
members, and interdisciplinary team structure. Results show that 74% of social workers surveyed
had an MSW, an average of 6 years experience, and an average of 23.4 cases (compared to nurses’
average of 11.2 cases). Additionally, social workers can, but do not regularly assess caregiver
attitudes in pain management. However, they are regularly consulted by non-social worker
colleagues and feel like active team participants in team meetings. There were some concerns
about the increased focus on the medicalization of hospice, the need to preventatively assess,
address, and interface with caregivers about beliefs and about pain management and other aspects
of care. While this study and others by the lead author describes higher perceived levels of hospice
social work integration with hospice teams, the findings are not generalizable, because the sample
was drawn from a network of hospice organizations that are more likely to participate in hospice
research and encourage progressive hospice care practices. Nonetheless, this research still adds to
the growing body of knowledge on hospice social work.
al: Hospice and palliative care: How the environment
Journal of Social Work in End-of-Life & Palliative Care,3(2),
2_02.
rious aspects of coordination of care, teamwork, and
pital palliative care and home hospice care environments.
consistency of care in an unfamiliar and regularly changing
tered treatment model while assessing and advocating for the
ients are referred to hospice care at the end-of-life stage of
53
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
Interdisciplinary Collaboration
and caregivers had many unmet needs that lead to a decrease
these unmet needs were patient-related psychosocial and fam
losing independence and being a burden on family and friend
unmet needs are treatable with psychosocial interventions an
care professionals need to assess and intervene effectively to i
to addressing unmet needs include societal and cultural issues
lack of understanding or knowledge about dying or the hospi
Parker Oliver, D., Bronstein, L.R., & Kurzejeski, L. (2005). Examining variables related to
successful collaboration on the hospice team. Health & Social Work, 30(4), 279-286.
The authors evaluated hospice social workers to determine aspects of successful interdisciplinary
collaboration within hospice care teams. The sample consisted of 146 social workers that were
mailed quantitative surveys. All participants were from state licensed hospice agencies in Missouri.
Results show that 53% of respondents had an MSW and 31% were the only social worker in their
agency. The overall perception of interdisciplinary collaboration was high, but with a wide range
in responses. Perceptions of interdisciplinary collaboration were not related to the social worker’s
level of education, the make-up of the hospice agency staff, or the quality of care delivered by the
hospice program. The authors cite many limitations to their study, such as a low response rate and
the use of a sample from only one state. The article calls for more research on the topic to explain
the lack of correlation among variables. Parker Oliver (2006) later uses a qualitative study to
evaluate similar topics (Parker Oliver & Peck, 2006).
Doherty, J.B. & DeWeaver, K.L. (2004). A survey of evaluati
workers. Home Health Care Services Quarterly, 23(4
10.1300/J027v23n04_01.
The authors assessed the methods of supervision for hospice
states. A mail questionnaire was collected from 109 social wo
99% of social workers are evaluated in some way with a grea
evaluation. The most common evaluation methods were revie
work (92%), input from other hospice team members (86%)
direct observation (70%), with 53% being evaluated once a y
patient input because of concerns that it is not a useful metho
and emotional conditions of some patients. The authors iden
indirect evaluation methods, which may be attributed to lack
or the social worker. Suggestions for enhanced quality of care
supervisors to directly observe social workers and to seek pat
satisfaction. They use the NASW code of ethics to cite the soc
advocate for a client’s self-determination as a justification for
Parker Oliver, D. & Peck, M. (2006). Inside the interdisciplinary team experiences of hospice
social workers. Journal of Social Work in End-of-Life & Palliative Care, 2(3), 7-21. doi:
10.1300/J457v02n03_03.
Under the conceptual framework of the Bronstein Model for Interdisciplinary Communication
(Bronstein, 2003), the authors used a qualitative research design to randomly evaluate a
convenient sample to determine self-identified strengths and challenges of teamwork for hospice
social workers. Bronstein’s model views successful collaboration through (1) interdependence, (2)
newly created professional activities, (3) flexibility in traditional roles, (4) collective ownership of
goals, and (5) reflection on process. The sample included 23 social workers from 20 hospice
programs who discussed their employment and involvement with hospice programs, educational
preparation for employment, supervision of performance, and the make-up of the hospice care
team. Results show that teamwork is enhanced when team members have strong communication
and trust among the group, engage in joint home visits with other colleagues, participate in team
building activities, feel equally respected as a member of the team, and receive support from
hospice administration. Challenges of interdisciplinary work for hospice social workers include
large caseloads, the medicalization of hospice care diminishing the social work role, a limited
number of allowed visits, the lack of staff flexibility and administrative support, and personality
conflicts among team members. Lastly, the authors highlight the importance of evaluation to
determine team effectiveness. Only four social workers said this was done at their agency, but
indicated that it was helpful in making changes to enhance the effectiveness of the interdisciplinary
team.
Kramer, B.T., Kavanaugh, M., Trentham-Dietz, A., Walsh, M
of Family Conflict at the End of Life: The Experience
Persons with Lung Cancer, The Gerontologist, 50(2),
Purpose: Guided by an explanatory matrix of family conflict
article was to examine the correlates and predictors of family
adult children of persons with lung cancer.
Design and Methods: A cross-sectional statewide survey of fa
from lung cancer was conducted as part of the larger study o
Satisfaction in Wisconsin.
Results: Significant bivariate correlations were found between
variables (i.e., a history of conflict, younger respondent age, r
wishes of the patient), conditions (i.e., greater physical and p
patient), and contributing factors (i.e., communication constr
In the multivariate model, significant predictors of family con
race, communication constraints, and family members asserti
of the variance in conflict.
Implications: Implications for routine assessment and screeni
recommendations for the development and testing of interven
making and enhance open communication among at-risk fam
Hospice Services with Families
Arnold, E.M., Artin, K.A., Griffith, D., Person, J.L., & Graham, K.G. (2006). Unmet needs at the
end of life: Perceptions of hospice social workers. Journal of Social Work in End-of-Life &
Palliative Care, 2(4), 61-83.
The authors evaluated hospice social workers in two Southeastern states to determine the unmet
needs of patients at the end of life. A total of 212 surveys were collected from social workers
asking them to identify patients’ and caregivers’ unmet needs, and the reasons, interventions and
outcomes, and barriers to addressing these unmet needs. Findings show that the majority of social
workers responding were Caucasian (91.9%), females (91.7%), had a MSW (71.2%) , and were
employed with a hospice agency for an average of 4.24 years. Social workers stated that patients
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and caregivers had many unmet needs that lead to a decrease enjoyment of daily life. Many of
these unmet needs were patient-related psychosocial and family conflict issues, such as a fear of
losing independence and being a burden on family and friends. Social workers perceive that these
unmet needs are treatable with psychosocial interventions and referrals, and suggest that hospice
care professionals need to assess and intervene effectively to increase the quality of care. Barriers
to addressing unmet needs include societal and cultural issues related to death and dying, such as
lack of understanding or knowledge about dying or the hospice care philosophy.
Kurzejeski, L. (2005). Examining variables related to
e hospice team. Health & Social Work, 30(4), 279-286.
workers to determine aspects of successful interdisciplinary
ms. The sample consisted of 146 social workers that were
ipants were from state licensed hospice agencies in Missouri.
s had an MSW and 31% were the only social worker in their
rdisciplinary collaboration was high, but with a wide range
plinary collaboration were not related to the social worker’s
hospice agency staff, or the quality of care delivered by the
ny limitations to their study, such as a low response rate and
te. The article calls for more research on the topic to explain
es. Parker Oliver (2006) later uses a qualitative study to
& Peck, 2006).
Doherty, J.B. & DeWeaver, K.L. (2004). A survey of evaluation practices for hospice social
workers. Home Health Care Services Quarterly, 23(4), 1-13. doi:
10.1300/J027v23n04_01.
The authors assessed the methods of supervision for hospice social workers in five Southeastern
states. A mail questionnaire was collected from 109 social work supervisors. Results indicate that
99% of social workers are evaluated in some way with a great variability in the method of
evaluation. The most common evaluation methods were review of the social workers’ written
work (92%), input from other hospice team members (86%), individual supervision (81%), and
direct observation (70%), with 53% being evaluated once a year. Supervisors do not often look to
patient input because of concerns that it is not a useful method of evaluation given the physical
and emotional conditions of some patients. The authors identify that supervisors more often use
indirect evaluation methods, which may be attributed to lack of time on the part of the supervisor
or the social worker. Suggestions for enhanced quality of care include increased efforts of
supervisors to directly observe social workers and to seek patient feedback to learn about client
satisfaction. They use the NASW code of ethics to cite the social work profession’s commitment to
advocate for a client’s self-determination as a justification for obtaining patient feedback.
Inside the interdisciplinary team experiences of hospice
ial Work in End-of-Life & Palliative Care, 2(3), 7-21. doi:
he Bronstein Model for Interdisciplinary Communication
qualitative research design to randomly evaluate a
dentified strengths and challenges of teamwork for hospice
ws successful collaboration through (1) interdependence, (2)
3) flexibility in traditional roles, (4) collective ownership of
he sample included 23 social workers from 20 hospice
ment and involvement with hospice programs, educational
ion of performance, and the make-up of the hospice care
enhanced when team members have strong communication
joint home visits with other colleagues, participate in team
ed as a member of the team, and receive support from
interdisciplinary work for hospice social workers include
hospice care diminishing the social work role, a limited
taff flexibility and administrative support, and personality
y, the authors highlight the importance of evaluation to
ur social workers said this was done at their agency, but
g changes to enhance the effectiveness of the interdisciplinary
Kramer, B.T., Kavanaugh, M., Trentham-Dietz, A., Walsh, M., & Yonker, J.A., (2010). Predictors
of Family Conflict at the End of Life: The Experience of Spouses and Adult Children of
Persons with Lung Cancer, The Gerontologist, 50(2), 215-225.
Purpose: Guided by an explanatory matrix of family conflict at the end of life, the purpose of this
article was to examine the correlates and predictors of family conflict reported by 155 spouses and
adult children of persons with lung cancer.
Design and Methods: A cross-sectional statewide survey of family members of persons who died
from lung cancer was conducted as part of the larger study on the Assessment of Cancer Care and
Satisfaction in Wisconsin.
Results: Significant bivariate correlations were found between family conflict and family context
variables (i.e., a history of conflict, younger respondent age, race, and specified end-of-life care
wishes of the patient), conditions (i.e., greater physical and psychological clinical care needs of the
patient), and contributing factors (i.e., communication constraints and family asserting control).
In the multivariate model, significant predictors of family conflict included prior family conflict,
race, communication constraints, and family members asserting control; the model explained 72%
of the variance in conflict.
Implications: Implications for routine assessment and screening to identify families at risk and
recommendations for the development and testing of interventions to facilitate shared decision
making and enhance open communication among at-risk families are highlighted.
., Person, J.L., & Graham, K.G. (2006). Unmet needs at the
pice social workers. Journal of Social Work in End-of-Life &
workers in two Southeastern states to determine the unmet
total of 212 surveys were collected from social workers
caregivers’ unmet needs, and the reasons, interventions and
these unmet needs. Findings show that the majority of social
91.9%), females (91.7%), had a MSW (71.2%) , and were
n average of 4.24 years. Social workers stated that patients
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Munn, J., & Zimmerman, S. (2006). A good death for residents of long-term care: Family
members speak. Journal of Social Work in End of Life & Palliative Care, 2, 45-59.
APPENDIX M: HOSPICE RESOURCES
The authors examine family members of recently deceased patients from nursing homes and
residential care/assisted living facilities to determine aspects of care that lead to positive quality of
end-of-life care outcomes in long-term care environments. Family members of 437 recently
deceased residents from 26 nursing homes and 105 from residential care/assisted living facilities
were interviewed by telephone about the residents’ experiences, care provided during the last
month of life, the expectation of death, the process of death, the family and staff involvement, and
the satisfaction of care. The sample was mostly white (91%), female (73%), an average age of 61
years old, and the adult children of the resident (66%). Results indicate outcome measures as the
structure of services, the process of dying, and the outcome of services up until death. Under
structure of services, family members cited a need for more staff, specifically those that are more
educated about end-of-life issues. In regard to the process of care prior to death, social support
from family and staff was seen as instrumental in increasing the quality of care at the end of life.
The highest levels of dissatisfaction in any area were due to a lack of attention and positive
support from staff. Third party care providers (e.g., hospice care providers) were described as even
more helpful in increasing the quality of end-of-life care because of the increased attention the
patient received. The most frequent outcome of services up until death for each patient was “being
comfortable” at the time of death and one-third indicated no additional service would have
increased the quality of care the resident received. The authors cited the need for emotional and
social support during end-of-life care and highlighted many ways in which social workers are
trained to provide these services. However, because of diminished federal care requirements for
nursing homes and residential care/assisted living facilities, social workers are not often enough
involved in administering these services. The article also suggests that hospice care social workers
should consider these elements when working with families in nursing homes and residential
care/assisted living facilities.
Government Agencies
Centers for Medicare and Medicaid Services (CMS)
www.cms.hhs.gov/
•
Hospice Center
www.cms.gov/center/hospice.asp
This website provides links to reports and resources o
hospice care.
•
Data on Medicare Hospice Care
www.cms.gov/Hospice/Downloads/Hospice_Data_19
This link include the 20 most frequent diagnoses, the
stay, and trends over time in length of stay, by diagno
document of the research is also included.
•
Regulations (excerpts listed in brief):
◊
◊
Waldrop, D.P. (2008). Evidence-based psychosocial treatment at end of life. Journal of
Gerontological Social Work, 50(S1), 267-292
End-of-life care has gained recognition as an important interdisciplinary clinical domain during
the past three decades largely because scientific and medical advances have changed the nature of
dying in the US. Advances in the treatment of life-limiting illness have typically focused on medical
issues and on treating the physical symptoms that accompany the final stage of a terminal illness.
However, because the lengthening life span has made more choices available at the end of life,
there is also greater need for evidence-based psychosocial treatment to diminish some of the
prolonged emotional, psychological, social, and spiritual distress that accompanies dying. Both
terminally ill older adults and their caregivers can be helped by interventions that address the need
for information, education, preparation, communication, emotional support, and advocacy. This
paper presents a review of evidence-based psychosocial treatments at the end of life for both older
adults and their caregivers.
Department of Health and Human Services (DHH
Medicaid Services (CMS), Federal Register Part II
Medicaid Programs: Hospice Conditions of Partic
details personnel qualifications for hospice social
http://edocket.access.gpo.gov/2008/pdf/08-1305.p
Social Security Act, Title 18, Section 1861 (Subse
www.ssa.gov/OP_Home/ssact/title18/1861.htm
Agency for Healthcare Research and Quality (AHRQ)
www.ahrq.gov
•
Research in Action Newsletter – (March 2003, Issue 1
Preferences for Care at the End of Life
www.ahrq.gov/research/endliferia/endria.pdf
Accreditation Organizations
The Joint Commission
www.jointcommission.org/
•
2010 Standards for Home Health, Personal Care and
www.jcrinc.com/Accreditation-Manuals/2010-Standa
and-Support-Services-and-Hospice/1826/
Community Health Accreditation Program (CHAP)
www.chapinc.org/
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A good death for residents of long-term care: Family
cial Work in End of Life & Palliative Care, 2, 45-59.
APPENDIX M: HOSPICE RESOURCES
Government Agencies
of recently deceased patients from nursing homes and
s to determine aspects of care that lead to positive quality of
m care environments. Family members of 437 recently
omes and 105 from residential care/assisted living facilities
the residents’ experiences, care provided during the last
h, the process of death, the family and staff involvement, and
as mostly white (91%), female (73%), an average age of 61
e resident (66%). Results indicate outcome measures as the
ing, and the outcome of services up until death. Under
cited a need for more staff, specifically those that are more
egard to the process of care prior to death, social support
rumental in increasing the quality of care at the end of life.
any area were due to a lack of attention and positive
roviders (e.g., hospice care providers) were described as even
of end-of-life care because of the increased attention the
utcome of services up until death for each patient was “being
one-third indicated no additional service would have
ent received. The authors cited the need for emotional and
and highlighted many ways in which social workers are
wever, because of diminished federal care requirements for
sisted living facilities, social workers are not often enough
es. The article also suggests that hospice care social workers
working with families in nursing homes and residential
Centers for Medicare and Medicaid Services (CMS)
www.cms.hhs.gov/
•
Hospice Center
www.cms.gov/center/hospice.asp
This website provides links to reports and resources on a variety of issues related to
hospice care.
•
Data on Medicare Hospice Care
www.cms.gov/Hospice/Downloads/Hospice_Data_1998-2008.zip
This link include the 20 most frequent diagnoses, the number of patients, average length of
stay, and trends over time in length of stay, by diagnosis from 1998-2008. A summary
document of the research is also included.
•
Regulations (excerpts listed in brief):
◊
◊
psychosocial treatment at end of life. Journal of
0(S1), 267-292
n as an important interdisciplinary clinical domain during
scientific and medical advances have changed the nature of
ment of life-limiting illness have typically focused on medical
mptoms that accompany the final stage of a terminal illness.
span has made more choices available at the end of life,
-based psychosocial treatment to diminish some of the
ocial, and spiritual distress that accompanies dying. Both
regivers can be helped by interventions that address the need
on, communication, emotional support, and advocacy. This
ased psychosocial treatments at the end of life for both older
Department of Health and Human Services (DHHS), Centers for Medicare &
Medicaid Services (CMS), Federal Register Part II, 42 CFR Part 418, Medicare and
Medicaid Programs: Hospice Conditions of Participation; Final Rule (Page 32218
details personnel qualifications for hospice social workers)
http://edocket.access.gpo.gov/2008/pdf/08-1305.pdf
Social Security Act, Title 18, Section 1861 (Subsection dd)
www.ssa.gov/OP_Home/ssact/title18/1861.htm
Agency for Healthcare Research and Quality (AHRQ)
www.ahrq.gov
•
Research in Action Newsletter – (March 2003, Issue 12) – Advance Care Planning:
Preferences for Care at the End of Life
www.ahrq.gov/research/endliferia/endria.pdf
Accreditation Organizations
The Joint Commission
www.jointcommission.org/
•
2010 Standards for Home Health, Personal Care and Support Services, and Hospice
www.jcrinc.com/Accreditation-Manuals/2010-Standards-for-Home-Health-Personal-Careand-Support-Services-and-Hospice/1826/
Community Health Accreditation Program (CHAP)
www.chapinc.org/
57
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Accreditation Commission for Health Care (ACHC)
www.achc.org/index.php
Hospice Foundation of America (HFA)
www.hospicefoundation.org/
National Organizations
Social Work Hospice and Palliative Care Network (SWHPN)
www.swhpn.org/
National Hospice and Palliative Care Organization (NHPCO)
www.nhpco.org/templates/1/homepage.cfm
Specialty Journal
•
NHPCO Facts and Figures: Hospice Care in America
www.nhpco.org/files/public/Statistics_Research/NHPCO_facts_and_figures.pdf
•
Social Work Competencies Module
www.nhpco.org/i4a/pages/index.cfm?pageid=3913
Journal of Social Work in End-of-Life & Palliative Care
www.haworthpress.com/store/product.asp?sku=J457
National Association of Social Workers (NASW)
www.socialworkers.org
•
Credentials
◊
◊
•
•
Certified Hospice and Palliative Social Worker (CHP-SW)
www.socialworkers.org/credentials/credentials/chpsw.asp
Standards
◊
NASW Standards for Social Work Practice in Palliative and End of Life Care
www.socialworkers.org/practice/bereavement/standards/default.asp
NASW Policy Statements
www.naswpress.org/publications/practice/speaks.html
◊
◊
•
Advanced Certified Hospice and Palliative Social Worker (ACHP-SW)
www.socialworkers.org/credentials/credentials/chpsw.asp
End-of-Life Care
Hospice Care
Help Starts Here
www.helpstartshere.org
◊
◊
◊
◊
Death and Dying
www.helpstartshere.org/health-and-wellness/death-and-dying-overview.html
Death and Dying – How Social Workers Help – The Role of Social Work in Hospice
and Palliative Care by Mary Raymer, MSW, ACSW
www.helpstartshere.org/health-and-wellness/death-and-dying-how-social-workers-help
.html
Death and Dying – How Social Workers Help: How Social Workers Keep the HOPE
Alive in Hospice by Margo W. Steinberg, MSW, LCSW
www.helpstartshere.org/health-and-wellness/hope-and-hospice.html
Death and Dying Trends – Creativity at the End of Life by Hannah Fiske
www.helpstartshere.org/health-and-wellness/death-and-dying-trends.html
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Care (ACHC)
Hospice Foundation of America (HFA)
www.hospicefoundation.org/
Social Work Hospice and Palliative Care Network (SWHPN)
www.swhpn.org/
Organization (NHPCO)
e.cfm
Specialty Journal
ospice Care in America
atistics_Research/NHPCO_facts_and_figures.pdf
Journal of Social Work in End-of-Life & Palliative Care
www.haworthpress.com/store/product.asp?sku=J457
odule
ex.cfm?pageid=3913
rs (NASW)
ce and Palliative Social Worker (ACHP-SW)
edentials/credentials/chpsw.asp
iative Social Worker (CHP-SW)
edentials/credentials/chpsw.asp
al Work Practice in Palliative and End of Life Care
ractice/bereavement/standards/default.asp
ons/practice/speaks.html
ealth-and-wellness/death-and-dying-overview.html
Social Workers Help – The Role of Social Work in Hospice
ry Raymer, MSW, ACSW
ealth-and-wellness/death-and-dying-how-social-workers-help
Social Workers Help: How Social Workers Keep the HOPE
o W. Steinberg, MSW, LCSW
ealth-and-wellness/hope-and-hospice.html
– Creativity at the End of Life by Hannah Fiske
ealth-and-wellness/death-and-dying-trends.html
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HOSPICE SOCIAL WORK: LINKING POLICY, PRACTIC
APPENDIX N: PENDING LEGISLATION
APPENDIX O: SOCIAL WORK RESEAR
END-OF-LIFE CARE
The Senior Navigation and Planning Act of 2009 (S. 1263 – May 2009)
http://warner.senate.gov/public/index.cfm?p=PressReleases&ContentRecord_id=8aa800a1-5eff42cf-af5f-f42ae841093d&ContentType_id=0956c5f0-ef7c-478d-95e7-f339e775babf&Month
Display=6&YearDisplay=2009
Hartford Faculty Scholars and Doctoral Fellows Research
Mercedes Bern-Klug, PhD
University of Iowa
Research Topic: National Survey of Nursing Home Social Wo
Senator Mark Warner has introduced legislation that would expand education and services for
families and individuals dealing with terminal illnesses. The bill calls for patients with Medicare to
receive hospice services when diagnosed with 18 months to live as opposed the current standard of
6 months to live. Services such as palliative care consultation, patient and family counseling,
respite care, and in-home caregiver training would be provided while allowing the patient to still
seek curative treatments. Medicare payments would also be withheld from physicians and
healthcare providers until a patient diagnosed with a terminal illness receives advanced care
planning information. Incentives would be offered from 2011 to 2020 to in-patient hospitals,
nursing homes, etc. who obtain accreditation and certification to implement a hospice and
palliative care program. After 2020, these providers would receive a decrease in Medicare
payments (with exceptions) until the accredited and certified hospice and palliative care program
is in place. Even more comprehensive discharge planning would be required for hospitals, skilled
nursing facilities, home health agencies, and hospice programs. Lastly, the Department of Health
and Human Services would develop a public awareness campaign to highlight the importance of
end-of-life planning.
Karen Bullock, PhD
University of Connecticut
Research Topic: Preference for Utilization of Medical Treatm
at End of Life
Jean Correll Munn, PhD
Florida State University
Research Topic: Social Work Involvement at the End of Life i
Daniel S. Gardner, PhD
New York University
Research Topic: An Exploratory Evaluation of a Psychoeduca
Adults with Advanced Cancer and their Family Caregivers
Betty J. Kramer, PhD
University of Wisconsin, Madison
Research Topic: Innovations in End-of-Life Care for Elders w
The National Center for Social Work Research Act (S.114 – January 2009)
www.govtrack.us/congress/bill.xpd?bill=s111-114
Senator Daniel Inouye has introduced this legislation in each Congress since 1999. It amends the
Public Health Service Act to establish the National Center for Social Work Research as an agency
of the National Institutes of Health (NIH) to conduct, support, and disseminate targeted research
on social work methods and outcomes related to problems of significant social concern. The
legislation authorizes the Director of the Center to: (1) provide research training and instruction;
(2) establish research traineeships and fellowships; (3) provide stipends and allowances; and
(4) make grants to nonprofit institutions to provide such training, instruction, traineeships,
and fellowships. It directs the Secretary of Health and Human Services to establish an advisory
council for the Center.
Hong Li, PhD
University of Illinois, Urbana-Champaign
Research Topic: Study of Providers of End of Life Care for Fr
Sara Sanders, PhD
University of Iowa
Research Topic: Hospice Care for Individuals with Progressiv
Social Work Providers and Familial Caregivers
Tracy Schroepfer, PhD
University of Wisconsin, Madison
Research Topic: Assessing the Psychosocial Needs of Termina
Deborah Waldrop, PhD
University at Buffalo
Research Topic: At the Eleventh Hour: Psychosocial Factors t
Care for Terminally Ill Older Adults
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G LEGISLATION
APPENDIX O: SOCIAL WORK RESEARCHERS ON
END-OF-LIFE CARE
ng Act of 2009 (S. 1263 – May 2009)
cfm?p=PressReleases&ContentRecord_id=8aa800a1-5effpe_id=0956c5f0-ef7c-478d-95e7-f339e775babf&Month
Hartford Faculty Scholars and Doctoral Fellows Researching End-of-Life Care
Mercedes Bern-Klug, PhD
University of Iowa
Research Topic: National Survey of Nursing Home Social Workers
legislation that would expand education and services for
terminal illnesses. The bill calls for patients with Medicare to
ed with 18 months to live as opposed the current standard of
iative care consultation, patient and family counseling,
aining would be provided while allowing the patient to still
yments would also be withheld from physicians and
agnosed with a terminal illness receives advanced care
ld be offered from 2011 to 2020 to in-patient hospitals,
ditation and certification to implement a hospice and
hese providers would receive a decrease in Medicare
accredited and certified hospice and palliative care program
discharge planning would be required for hospitals, skilled
s, and hospice programs. Lastly, the Department of Health
public awareness campaign to highlight the importance of
Karen Bullock, PhD
University of Connecticut
Research Topic: Preference for Utilization of Medical Treatment among Older African Americans
at End of Life
Jean Correll Munn, PhD
Florida State University
Research Topic: Social Work Involvement at the End of Life in Long-Term Care
Daniel S. Gardner, PhD
New York University
Research Topic: An Exploratory Evaluation of a Psychoeducational Multifamily Group for Older
Adults with Advanced Cancer and their Family Caregivers
Betty J. Kramer, PhD
University of Wisconsin, Madison
Research Topic: Innovations in End-of-Life Care for Elders with Advanced Chronic Disease.
rk Research Act S.114 – January 2009
ll=s111-114
this legislation in each Congress since 1999. It amends the
the National Center for Social Work Research as an agency
NIH) to conduct, support, and disseminate targeted research
s related to problems of significant social concern. The
he Center to: (1) provide research training and instruction;
fellowships; (3) provide stipends and allowances; and
ons to provide such training, instruction, traineeships,
y of Health and Human Services to establish an advisory
Hong Li, PhD
University of Illinois, Urbana-Champaign
Research Topic: Study of Providers of End of Life Care for Frail Elders in Managed Care.
Sara Sanders, PhD
University of Iowa
Research Topic: Hospice Care for Individuals with Progressive Dementia: Beliefs and Practices of
Social Work Providers and Familial Caregivers
Tracy Schroepfer, PhD
University of Wisconsin, Madison
Research Topic: Assessing the Psychosocial Needs of Terminally Ill Elders
Deborah Waldrop, PhD
University at Buffalo
Research Topic: At the Eleventh Hour: Psychosocial Factors that Contribute to Delayed Hospice
Care for Terminally Ill Older Adults
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ABOUT THE SOCIAL WORK POLICY INSTITUTE
The Social Work Policy Institute was established in 2009
NASW Foundation. Its mission is:
• To strengthen social work’s voice in public policy delib
• To inform policy-makers through the collection and d
work effectiveness.
• To create a forum to examine current and future issues
Social Work Policy Institute / NASW Foundation
750 First Street NE, Suite 700 • Washington, DC 2000
Director: Joan Levy Zlotnik, PhD, ACSW
www.SocialWorkPolicy.org • [email protected]
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ABOUT THE SOCIAL WORK POLICY INSTITUTE
The Social Work Policy Institute was established in 2009 and is a division of the
NASW Foundation. Its mission is:
• To strengthen social work’s voice in public policy deliberations.
• To inform policy-makers through the collection and dissemination of information on social
work effectiveness.
• To create a forum to examine current and future issues in health care and social service delivery.
Social Work Policy Institute / NASW Foundation
750 First Street NE, Suite 700 • Washington, DC 20002-4241
Director: Joan Levy Zlotnik, PhD, ACSW
www.SocialWorkPolicy.org • [email protected]
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750 First Street NE, Suite 700
Washington, DC 20002-4241
www.SocialWorkPolicy.org
HOSPICE SOCIAL WORK: LI
PRACTICE, AND RE
A REPORT FROM THE MARC
SYMPOSIUM