M. Kay M. Judge, EdD, RN
Marjorie J. Wells, PhD, ARNP
Impact: Resource Utilization
Introduction
• Nursing’s implied contract with society:
– To value, monitor and attend life transitions, including:
birth, developmental progression through childhood,
puberty, adulthood old age, and end-of-life transition.
– Dealing with the last transition may
present the greatest challenges as well
as the greatest opportunities to health
care professionals.
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Impact: Resource Utilization
Public Policy: Who is Accountable
for Quality in End-of-Life Care?
• Federal law prohibits denial of care to the
critically ill for lack of insurance or other
financial resources.
• Restrictions in some health plans may place
barriers in the way of patients with advanced
illness who need to access EOL services.
• No law that mandates accessibility to good
EOL care even for those who have insurance
coverage.
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Impact: Resource Utilization
Quality Assessment &
Improvement
• Groups examining ways to make
EOL care providers accountable
for the quality of care they provide:
– Public and private policymakers,
purchasers of EOL care, health care
organizations, researchers and other.
• Various settings where EOL care is monitored:
– Hospitals, managed care plans, hospices, home care
agencies, long term care facilities and other settings.
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Impact: Resource Utilization
Definition: Quality of Care
Quality of care is:
– “The degree to which health services for
individuals and populations increase the
likelihood of desired health outcomes and
are consistent with current professional
knowledge”
(IOM, 1990)
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Impact: Resource Utilization
Assessment
• Implicit (e.g., rated by clinicians without reference to defined standards)
• Explicit (e.g., based on written criteria)
• Judge performance (e.g., rate it acceptable or unacceptable, or better or
worse than for a comparable organization)
• Improve performance (e.g., identify reasons for poor outcomes)
• Internal (e.g., clinical audits undertaken by those providing care)
• External (e.g., undertaken by purchasers, government officials, or others
not involved in providing care)
• Continuous quality improvement (CQI) and Total Quality
Management (TQM) models (reinforcing principles to implement
change)
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Impact: Resource Utilization
Problems in EOL Care Quality
• Four overarching types of health care quality problems have
been described. Care at the end of life is characterized by
problems in each of these areas. They include:
– ‘Omission errors or under-use of care (e.g., failure to assess
and treat pain and other symptoms; delayed hospice care referral,
premature hospital discharge)
– ‘Commission errors or overuse of care (e.g., diagnostic tests,
treatments or hospitalizations that are not wanted and will not inform
patient care but may cause physical and emotional distress)
– Poor technical performance (e.g., errors in technique such as
wound or respiratory care)
– Poor interpersonal performance (e.g., inappropriate
communication of distressing news)
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Impact: Resource Utilization
Aspects of End-of-Life Care Quality
• Three quality of care aspects have been
identified:
1) Structural
2) Processes (the major focus of public
and private efforts)
3) Outcomes
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Impact: Resource Utilization
Dimensions of Quality in Care of Dying
Patients & Related Quality Strategies
Context
Structures
Processes
Outcomes
Culture, norms,
social institutions
Care settings
(home, institution)
Establishing a
diagnosis and
prognosis
Physical (symptoms,
function)
Demographic
Personnel (staff,
volunteers,
numbers, training)
Establishing goals &
plans
Psychological (emotional,
cognitive)
Geography
Clinical policies
(protocols,
guidelines)
Providing palliative
and other patient
care
Spiritual
Economic
system,
resources
Information and
decision support
systems
Caring for families,
bereavement care
Perceptions of care, burden
of care
Political system,
policies,
regulations
Financial policies
(free care, target
profit levels)
Coordinating care
including transfers
among settings
Dignity, control over
decision-making
Individual and
family
characteristics
--
Monitoring,
improving care
Survival
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(IOM, 1997)
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Impact: Resource Utilization
Understanding Outcomes
• Often measured by physiological measure such as
blood pressure or cholesterol levels or by mortality
rates.
• Long term care facilities like nursing home: Nursing
needs other outcome measures.
– It is especially important to be very cautious when
outcomes are linked to reimbursement for care as this
practice can inappropriately reward those who achieve
good scores because they avoid less healthy people.
• Agency for Healthcare Research and Quality
(AHRQ) Outcomes Research Fact Sheet:
– Contains further information about outcomes research.
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Impact: Resource Utilization
What is Outcomes Research?
• Outcomes research seeks to understand the end
results of particular health care practices and
interventions.
• End results include effects that people experience
and care about.
• For individuals with chronic conditions—where cure
is not always possible—end results include quality of
life as well as mortality.
• Supporting improvements in health outcomes is a
strategic goal of the Agency for Healthcare Research
and Quality (AHRQ)
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Impact: Resource Utilization
Measuring Outcomes
• Historically, clinicians have relied primarily
on traditional biomedical measures to
determine whether intervention is necessary:
– Results of laboratory tests
• Researchers have discovered, however, that when
they use only these measures, they miss many of the
outcomes that matter most to patients.
• Outcomes research also measures how people
function and their experiences with care.
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Impact: Resource Utilization
Categories of Patient/Family Outcome
Measures for End-of-Life Care I
• Overall Quality of Life
– Overall experience of living as perceived by patient
• Physical Well-being
– Specific symptoms (description or rating; "bothersomeness")
– Overall comfort or distress (not just frequency or intensity)
– Functioning (given stage of illness)
• Patient Perceptions of Care
– Overall satisfaction with care
– Technical & physical aspects (e.g., prevention/relief of symptoms,
surroundings)
– Interpersonal aspects (e.g., caregiver sensitivity, continuity,
information provided)
– Consistency with patient preferences (e.g., site of care, therapies)
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Impact: Resource Utilization
Categories of Patient/Family Outcome
Measures for End-of-Life Care II
• Spiritual Well-being
– Continued meaning in life
– Composure despite physical distress
– Readiness for death & Religious or philosophical peace
• Psychosocial Well-being
– Cognitive status
– Emotional status
– Social interactions
– Self-image
– Sense of control & dignity
• Family Well-being & Perceptions of Care
(before & after patient's death)
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Emotional & Economic status of family members
Adequacy of information & decision-making process
Perceptions of care provided patient
Perceptions of care provided family including bereavement support
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Impact: Resource Utilization
Measurement Instruments & Issues
“If you don’t measure it,
you can’t improve it”
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Impact: Resource Utilization
Instruments
• A myriad of instruments exist to measure
health status or quality of life.
• Most have not been tested and/or validated in
end-of-life care and very few are designed for
use with family members.
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Impact: Resource Utilization
Measurement Issues & Problems
• In 1994, the Institute of Medicine Committee on
Care at the End of Life recommended developing a
“toolkit” of instruments to measure end-of-life care.
– They suggested an extensive, collaborative process of
testing, adapting, and developing instruments that were
• (1) relevant to the experiences of dying patients and those close to
them,
• (2) sensitive to the effects of changes in care, and
• (3) efficient and practical to use.
• The main focus of the committee was more on
clinical and research uses of measures than on
external performance monitoring and rating.
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Impact: Resource Utilization
Desirable Attributes of Outcomes
Assessment Instruments
• Developed from the Instruments Based on Criteria
from Medical Outcomes Trust:
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Conceptual and measurement model
Reliability
Validity
Responsiveness
Interpretability
Respondent and administrative burden
Alternative forms
Cultural and language adaptations
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Impact: Resource Utilization
Timing & Frequency of
Assessments
• The role of the caregiver or surrogate as a source of
patient data is controversial.
– Can a surrogate provide reliable and valid information for
patient's experience?
• The timing of death is often unpredictable leading to
difficulties in obtaining measurements on a specified
schedule.
• A myriad of instruments exists to measure health
status or quality of life either comprehensively or
narrowly.
– Most have not been tested and validated in end-of-life care
and very few are designed for use with family members.
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Impact: Resource Utilization
Measurement Issues & Problems
• Among the issues identified for a variety of
symptoms and circumstances are the following.
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Assessment timing
Frequency of assessment
Source of patient information
Ratings of satisfaction versus reports about care received
Scope and depth of the instrument
The relevance of measures of function
The meaning of symptoms
Sensitivity to change or differences in patient status
The need for disease- or condition-specific measures
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Impact: Resource Utilization
Evidence-Based Clinical Practice
Guidelines (CPG)
• First, by describing specific processes of care identified as
effective, guidelines may improve the technical provision of
care
• Second, guidelines that explicitly and clearly describe
appropriate care for particular clinical problems such as
management of specific symptoms provide a basis for
problem identification and correction.
• Third, guidelines that include good explanations of possible
outcomes (e.g., potential benefits and burdens of a third
course of chemotherapy) can contribute to better
communication and shared decision making on the part of
patients and practitioners.
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Impact: Resource Utilization
Professional Impact: Education of
Health Care Providers
“The Purpose of Nursing is to assist
the individual, sick or well, in the
performance of those activities
contributing to health or its recovery, or
to a peaceful death, that he would
perform unaided if he had the necessary
strength, will, or knowledge”
(Virginia Henderson, 1961)
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Impact: Resource Utilization
Professional Impact: Education of
Health Care Providers II
• Health care providers typically receive insufficient
end-of-life care content in their basic curricula.
– Nurses intervene to support those functions the patient is able to carry
out and performing those, which s/he cannot.
• An analysis of end-of-life content in nursing
textbooks revealed that only 2% of the overall
content in nursing text books related to EOL care.
– Noting this abysmal finding, the profession supported increased
emphasis both in basic programs and in nursing research.
– The National Council of State Boards of Nursing announced that the
April 2001 NCLEX exam will cover EOL content in three of the
testing areas.
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Impact: Resource Utilization
Basic Nursing Education
• In 1980, nursing was defined as “the diagnosis and treatment
of human responses to actual or potential health problems.”
• Unfortunately, current nursing education insufficiently
prepares nurses and fails to fully equip them to apply existing
clinical knowledge and standards effectively in responding to
the needs of dying patients and their families.
• This holistic approach to the care of all patients covers each of
the dimensions of care are:
– physical, emotional, and spiritual.
– Nurses are expected to have sufficient knowledge to care for patients
during all life stages, including dying.
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Impact: Resource Utilization
Continuing Education
• Nursing is a proponent of learning as a lifelong
process as are many health care professions.
• As nursing programs strengthen the attention to endof-life care in their curricula, the foundation for
continuing education programs should likewise be
strengthened.
• The basic options include:
– Consultation, clinical demonstration, lectures and rounds,
courses and conferences, journals, self-learning programs,
and reflective practice.
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Impact: Resource Utilization
Professional & Paid Caregivers
• Since nursing has more of its members involved in
EOL care than any other group, the profession has a
special obligation to advocate for “care for the
caregiver.”
• Strategies to deal with grief and loss as caregivers:
– Staff discussions that are professionally facilitated.
– A program of scheduled “creature comforts” for
caregivers, i.e., massages, relaxation exercises, music
therapy.
– Occasional rotation to less stressful work assignments.
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Impact: Resource Utilization
Unpaid (Family) Caregivers
• 54 million Americans involved in family
caregiving in 1999!
– 26.6 percent of the adult population
– This July 2000 survey from the National Family
Caregivers Association (NFCA) shows that the number of
persons who provided care for an elderly, disabled or
chronically ill, friend or relative
is TWICE as large as had been
previously
thought.
– Earlier surveys estimated only
an approximated 25 million
caregivers in the United States.
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Impact: Resource Utilization
10 Tips for Family Caregivers
1) Choose to take charge of your life, and don't let your
loved one's illness or disability always take center stage.
2) Remember to be good to yourself. Love, honor and
value yourself. You're doing a very hard job and you
deserve some quality time, just for you.
3) Watch out for signs of depression, and don't delay in
getting professional help when you need it.
4) When people offer to help, accept the offer and
suggest specific things that they can do.
5) Educate yourself about your loved one's
condition. Information is empowering.
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Impact: Resource Utilization
10 Tips for Family Caregivers II
6) There's a difference between caring and doing. Be
open to technologies and ideas that promote your
loved one's independence.
7) Trust your instincts. Most of the time they'll lead
you in the right direction.
8) Grieve for your losses, and then allow yourself to
dream new dreams.
9) Stand up for your rights as a caregiver and a
citizen.
10) Seek support from other caregivers. There is
great strength in knowing you are not alone.
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