Hospice care in prison: General principles
and outcomes
Svetlana Yampolskaya, PhD
Norma Winston, PhD
Abstract
Introduction
In recent years, tougher sentencing
laws have resulted in larger numbers
of elder prison inmates and, consequently, more deaths occurring in
prisons. In this context, the introduction of prison hospice programs takes
on great significance. The purpose of
this study is to identify the principle
components and outcomes of prison
hospice programs based on data gathered from semistructured telephone
interviews with prison hospice providers in state and federal correctional institutions and from other sources.
The results suggest that there is a
growing effort to provide palliative
care to dying inmates across the country and that all of the existing programs share common elements and
similar structures. Major outcomes of
prison hospice programs include costeffectiveness, enhanced correction,
and comfort care.
Key words: hospice, prison, HIV,
correctional care, institutional care
Public views about criminals and
appropriate punishments for crimes
began to change in the early 1990s.
The perceptions that offenders were
treated too leniently, that longer sentences would keep dangerous people
off the streets, and that tougher punishment would keep crime under control resulted in “Get Tough on Crime”
campaigns and subsequently tougher
sentencing reforms. State and federal
laws that mandated longer sentences
for drug-related criminal convictions
and the “Three Strikes and You’re
Out” law (automatic life imprisonment upon a third conviction) led to a
substantial increase in individuals
receiving life sentences. As a result,
the federal and state prison populations expanded dramatically, from
773,919 in 1990 to 1,381,892 in 2000,
a 56 percent rise in just one decade.1,2
A dramatic increase in the overall US
prison population was accompanied
by a sharp rise in the geriatric prison
population, which can be defined as
inmates who are 55 and older. According to Cohn, 3 prisoners tend to
age more rapidly than others, resulting
in up to a 10-year differential in physiological age. As indicated by Mara and
McKenna,4 prisoners often manifest the
health problems usually associated
Svetlana Yampolskaya, PhD, Department of
Child and Family Studies, Louis de la Parte
Florida Mental Health Institute, University of
South Florida, Tampa, Florida.
Norma Winston, PhD, Department of Sociology,
University of Tampa, Tampa, Florida.
290
with more elderly persons outside of
prison. The number of inmates aged
55 and older was 42,300 in 2000,2
compared to 12,187 in 1990.5
The majority of inmates (83 percent) reported illicit drug use and were
therefore at risk of contracting communicable diseases such as AIDS,
hepatitis, and tuberculosis.6 According to the US Department of Justice, in
1999 the total number of HIV-positive
inmates in state and federal prisons
was 25,757, compared to 17,551 in
1991.7,8
Serious medical problems such as
HIV, as well as an increased proportion of inmates 55 and older, have
contributed to a higher rate of poor
health among prisoners. In particular,
40 percent of state inmates and 48 percent of federal inmates aged 45 or
older reported having a medical problem since their admission to prison.9
As a result of the geriatric and HIVpositive prison population growth, the
number of deaths in American prisons
increased by 50 percent from 1,597 in
1990 to 3,215 in 2000.10,11
Dying inmates have become a serious issue for correctional institutions
and for society. Corrections departments across the country have faced
multiple problems related to providing medical and/or end-of-life care.
For example, most prisons have lacked
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the proper facilities and staff to attend
to terminally ill patients; thus correctional administrators have had to
transfer dying prisoners to hospitals.
Transportation to hospitals and hospital stays, however, are extremely expensive and involve security risks.
When a prisoner is in the hospital,
expenses include paying security staff
to supervise the patient as well as
costs for the hospital bed and treatment provided.12 With an increasing
number of prisoners who need end-oflife care, this option is becoming prohibitively expensive.
Correctional authorities must also
deal with problems when an inmate
dies in the prison. Death in prison is
usually a perturbing event for the
inmate population and presents a
potential threat to security. 13
Moreover, society has to deal with
humanitarian and legal justice concerns
as well as issues of public safety and the
costs of end-of-life care. Although the
banning of cruel and unusual punishment was grounded in the Eighth
Amendment,14 some suffering of prisoners from disease is disproportionate
to the severity of their offenses. As
Dubler and Heyman15 noted, simple
humanity and primitive justice demand
compassion, and prisoners should be
allowed to die with dignity. However,
most inmates die alone, far from their
friends and families, experiencing psychological pain, shame, and the fear of
dying in prison.16
Some of the seriously ill prisoners
try to obtain medical parole, but eligibility criteria are restrictive and the
review process is cumbersome. Often,
inmates either do not get medical
parole or die before they get it.17,18
Those who do get medical parole are
usually at a stage of their illness when
they cannot enjoy any quality time with
their families. The situation can be
even worse if an inmate is dying from
AIDS. Correctional officials often see
HIV-positive prisoners as a threat and
place them in complete isolation.19 In
addition, inmates have to deal with the
emotional problems associated with
terminal illness. They experience
anger, frustration, and denial—emotions that are difficult to deal with.
They usually suffer from physical
pain as well, because prison staff
physicians often are concerned about
drug abuse and therefore conservative
in prescribing narcotics, even to those
who definitely need them. Nurses,
who are mostly females, are afraid to
spend too much time easing the discomfort of dying inmates because
they fear reprimands by correctional
officers.16,20
In order to allow inmates to die
with dignity, to manage dying prisoners in a secure and cost-effective manner, and to provide appropriate palliative care, some correctional facilities
have introduced prison hospice programs. Hospice is an interdisciplinary,
comfort-oriented program of care that
allows seriously ill and dying patients
to live and die with dignity in as little
pain as possible. A holistic approach
is used, attending to the medical, psychological, and spiritual needs both of
the dying patients and the patients’
families.21 Prison hospices promote
palliative care for terminally ill inmates. This study was designed to
identify the principle components of
prison hospice programs, to better
understand the nature of these components, and to examine the outcomes of
these programs. Hospice programs in
the following correctional institutions
were included in the study:
Broward Correctional Institution,
Florida
Federal Medical Center at
Carswell, Ft. Worth, Texas
Dixon Correctional Center,
Illinois
Ft. Lyon Correctional Facility,
Colorado
Federal Medical Center, Ft.
Worth, Texas
Louisiana State Penitentiary,
Angola
Michael Unit, Tennessee
Colony, Texas
Oregon State Penitentiary,
Oregon
US Medical Center for Federal
Prisoners, Springfield, Missouri
Vacaville State Prison,
California
Methods
Design and procedure
Data were collected from several
sources, including journal articles,
newsletter reports, and Internet reviews. Additional data were gathered
via semistructured telephone interviews with prison hospice providers in
state and federal correctional institutions. The interviews contained openended questions, which permitted an
unlimited number of possible answers
as well as clarification of responses.
The authors conducted the interviews
at 10 responding prison hospices during the summer of 2001. Originally,
15 prison hospice programs across the
country were identified from the literature review and Internet search.
These projects were believed to be the
only ones existing in correctional
institutions. Five of the 15, however,
were unavailable for participation in
the study.
Instrument
To obtain information about models
for hospice care in correctional facilities and the specific elements of the
programs, the Prison Hospice Survey
(PHS) was designed. Questions on the
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291
Table 1. Principal components of prison hospice programs
Categories
Program elements
Hospice care in the prison
Adjustment of hospice to the prison environment
Multidisciplinary team
Nurses, physicians, psychologist, psychiatrist, social workers, a clergy member,
and security officials
Inmate volunteer involvement
Selection process for identifying suitable inmates
Screening of suitable inmates
Training of volunteer inmates
Inmate involvement with hospice care as a regular or additional job
Volunteer inmate involvement in hospice staff meetings
Comfort care
Counseling of dying inmates
Special privileges of dying inmates
Contacting the dying patient’s family
Relaxed visitation rules
Counseling of dying inmates’ family members
Funeral or memorial service
End-of-life care
DNR requirements
Eligibility criteria (terminal illness and death prognosis)
PHS assess four areas within prison
hospice programs: the multidisciplinary focus, eligibility criteria, inmate
participation, and family involvement.
The data were analyzed using content analysis, frequency distributions,
and qualitative analysis. Content
analysis was used to study the writings of people who had observed
prison hospice programs. The coding
included presence or absence of a certain element of the program and the
frequency of its occurrence. The unit
of analysis was any document that
included a prison hospice program
description. Qualitative analysis was
used to discover analogous themes
and to create a core structure of an
emerging model for prison hospice
care. In addition, qualitative analysis
allowed us to incorporate peculiarities
of the programs into a comprehensive
paradigm for hospices in correctional
settings.
292
Results
Principle components of the prison
hospice programs
The results of data analysis revealed five principle components of
prison hospice care: 1) establishing
hospice care inside the prison; 2)
inclusion of multidisciplinary teams;
3) inmate volunteer involvement; 4)
comfort care; and 5) end-of-life care
(Table 1). The first three components
deal with the adaptation of hospice
care to the prison system. The other
two components relate to issues
involved in providing care for dying
prisoners and their families.
The first component concerns the
introduction of hospice programs into
prisons, which invariably was difficult
because of prison rules and regulations
and the polarity between the goals of
correctional institutions and hospice
programs. However, 15 prison systems
throughout the US have successfully
founded hospice programs inside correctional facilities. The hospice teams
that worked in prisons were typically a
multidisciplinary group consisting of
nurses, physicians, a psychologist, a
psychiatrist, social workers, and a clergy
member. As a part of the team’s adjustment to the prison environment, security
officials often were included as members of the multidisciplinary group.
Most prison hospice programs
used inmate volunteers to provide
assistance to both members of the hospice team and the terminally ill patients. Two additional programs (not
included in the sample), the Coxsackie Regional Medical Unit
Hospice in New York State and the
McCain Correctional Hospital of the
North Carolina Department of Corrections, relied on community volunteers rather than inmate volunteers to
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provide companionship and support to
hospice patients.
The 10 prison hospice programs in
the study included inmate volunteers,
although the level of their involvement varied. Some prisons (e.g., the
Ft. Lyon Correctional Facility in
Colorado) allowed only minor involvement, limiting inmates to providing assistance with activities of
daily living (ADLs), which included
bathing, feeding, and assistance with
ambulation and toileting. Some prisons (e.g., the Oregon State Penitentiary) incorporated greater involvement of inmate volunteers. They
focused on the companionship aspect,
with inmate volunteers spending time
talking with dying patients and writing letters for them in addition to providing assistance with ADLs. In other
prisons, inmate volunteers even provided lay counseling and were expected to handle formal elements of care
such as writing notes about patient
progress (e.g., the US Medical Center
for Federal Prisoners in Springfield,
Missouri) or helping nurses and hospice workers (e.g., the Michael Unit in
Tennessee Colony, Texas).
The results of the survey analysis, as
well as content analysis, indicated that
there were common elements of inmate
involvement across prison hospice programs. These included: 1) a selection
process for identifying suitable inmates; 2) screening of suitable inmates;
3) training of volunteer inmates; 4) designating inmate involvement with hospice care as a regular or additional job;
and 5) participation of volunteer inmates at hospice staff meetings.
All of the institutions in the study
included a formal process of selecting
inmates suitable for hospice care.
However, the selection process varied
considerably. For example, selection
was conducted by the members of the
hospice team at the Oregon State
Penitentiary. In contrast, selection was
completed exclusively by prison personnel at the Broward Correctional
Institution in Florida. At the Louisiana
State Penitentiary in Angola, selection
involved close record reviews by several prison officials and the program
coordinator. The US Medical Center
for Federal Prisoners distributed flyers and asked current hospice volunteers for recommendations; any interested inmate could apply. A similar
process took place at the Federal
Medical Center in Fort Worth, Texas,
and the Vacaville State Prison in
California. The Dixon Correctional
Center in Illinois allowed self-selection.
All prisons that used inmate volunteers in hospice care instituted security
screening. The common goal was to
find the most trustworthy and best suited inmates for the job. However, there
were differences among the correctional institutions in how they applied
screening criteria and utilized screening processes. At the Oregon State
Penitentiary, screening was based on
minimum requirements (i.e., no disciplinary infractions for the past two
years, no sexual offenses, and at least
two years of prison time left to serve)
and included an interview conducted
by the members of the hospice team. At
the Louisiana State Penitentiary, the
criteria were more strict and involved
an interview conducted by several
prison officials and the program coordinator. At the US Medical Center for
Federal Prisoners, the applicants were
screened and interviewed by the head
of the hospice program and the chaplain, who then consulted with security
lieutenants and asked for their recommendations. A similar process took
place at the Federal Medical Center.
The Vacaville State Prison employed
the strictest criteria—an appropriate
psychosocial background—and used a
very stringent screening process.
Members of the hospice team usually trained the inmate volunteers. The
length of training varied significantly,
ranging from 16 hours (Vacaville State
Prison) to 48 hours (Oregon State
Penitentiary). The average length of
training reported was 29 hours and 25
minutes. The Michael Unit provided
on-the-job training only, while the
Broward Correctional Institution did
not have any time limitation, with training lasting “as long as necessary.” The
common aim of the training was to
teach volunteers to provide help in
accordance with standards established
by the National Hospice Organization.
In eight of the examined correctional facilities, inmates volunteered
for the hospice program in addition to
their regular work hours. The amount
of time volunteers worked in hospice
care varied from two hours a week
(the Dixon Correctional Center in
Illinois) to nine hours a week (the
Federal Medical Center). However,
once patients were diagnosed as
actively dying, inmate volunteers
spent extra time with them, often
being relieved of their regular duties
to “sit vigil.” Three other correctional
facilities considered inmate service in
the hospice as full-time jobs. Inmate
volunteers worked as hospice caregivers from 40 to 48 hours a week.
In seven hospice programs, inmate
volunteers were required to attend hospice team meetings. During these meetings, inmate volunteers exchanged information with the staff members about
the patients and participated in decisions about further care. At the US
Medical Center for Federal Prisoners,
inmate volunteers not only attended the
meetings but also were required to write
weekly reports on their patients. Volunteers at the Oregon State Penitentiary
attended only the first part of hospice
team meetings, where they shared
necessary information or expressed
concerns. Three of the prison hospice
programs did not include inmate volunteers in their regular staff meetings
for reasons of confidentiality.
The fourth component of prison
hospice care involves the privileges
given to the dying prisoners and their
families. Without exception, in correctional institutions with hospice care
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programs, dying patients and their family members were eligible for certain
benefits. However, while some prisons
allowed only a few leniencies, others
offered a greater number of privileges.
At all correctional institutions with
hospice programs, dying inmates received psychological and spiritual
counseling. In the hospice program at
Ft. Lyon Correctional Facility, patients also received educational and
psychiatric counseling. Counseling
was usually available from different
members of the hospice team (e.g., the
chaplain, the social workers, the psychologist). At some prisons (e.g., the
US Medical Center for Federal Prisoners and the Louisiana State Penitentiary) lay counseling from inmate
volunteers also took place. The goal of
counseling was to keep patients free
of pain and anxiety.
Six of the correctional institutions
allowed dying inmates to have special
privileges such as access to preferred
foods, access to TV or radio, and permission to keep personal items at their
bedsides. Some correctional institutions
(the Broward Correctional Institution,
the US Medical Center for Federal
Prisoners, the Dixon Correctional
Center, and the Vacaville State Prison)
did not allow extra privileges for their
terminally ill patients.
Contacting the dying patient’s family, upon his or her request or agreement, was another common element
in the prison hospice programs. As a
rule, patients were asked whether and
whom they wished to be informed
about their condition, as well as whom
they wished to have informed of their
deaths. Patients were encouraged to
contact their families personally and
were assisted with writing letters and
with other types of communication. In
most programs, it was the chaplain or
a social worker who contacted a prisoner’s family.
Visitation rules were relaxed for
patients in most prison hospice programs (an exception was the Broward
294
Correctional Institution). In some
prisons, visitation rules were relaxed
only when a patient was close to
death, and in others, visitation rules
were relaxed at the discretion of the
warden. The Michael Unit even made
accommodations for out-of-town
families visiting dying patients. It
provided lodging in a place called
“Father’s House.” While this service
was atypical, all prison hospice programs had some arrangements with
the local community whereby out-oftown guests were assisted in locating
accommodations.
Although counseling for a dying
prisoner’s family members was not
always an integral part of the prison
hospice program, the family could
often get help through a local hospice
program (e.g., programs at the Oregon
State Penitentiary and the Ft. Lyon
Correctional Facility) or informal
counseling/briefing by the prison hospice social worker about what to expect
(e.g., the Federal Medical Center).
However, formal counseling for family members was provided at the
Vacaville State Prison, the Louisiana
State Penitentiary, and the Federal
Medical Center/Carswell in Texas.
Family members were counseled on
the stages of dying, anticipatory grief,
and bereavement. Sometimes, when
family members had not seen their
inmate relative for years, they were
counseled on what to expect before
visiting for the first time.
Seven of the 10 examined facilities
held funeral or memorial services for
deceased inmates. The frequency of
memorial services varied. Memorials
were held either every time an inmate
died or periodic services were held
(ranging from twice a month to once a
year) to remember everybody who died
during a set period.
The fifth component consists of eligibility criteria for becoming a hospice
patient. These criteria were found to be
similar across prisons. All correctional
institution programs required a medical
diagnosis of a terminal illness. However, the programs had different
requirements for life expectancy and
for signing a do-not-resuscitate (DNR)
order. The longest period of life
expectancy permitted, one year, was at
the US Medical Center for Federal
Prisoners; and the shortest period of
life expectancy, six months or less,
was in effect at the Vacaville State
Prison. A total of three correctional
institutions (the Louisiana State
Penitentiary, the Ft. Lyon Correctional
Facility, and the Michael Unit) made
signing a DNR order a requirement
for eligibility to receive end-of-life
care. Other correctional institutions
encouraged but did not oblige their
patients to sign DNRs.
Outcomes of prison hospice
All five of the components discussed above were integral parts of
prison hospice programs, and each
component was associated with a certain outcome (Figure 1). One of the
most important outcomes of prison
hospice care was cost-effectiveness.
Offering care to dying inmates within
prisons eliminated the necessity of
trips to hospitals, security during
transportation, and the prisoner’s stay
in a medical facility, thereby eliminating considerable costs to both correctional institutions and society. In addition, a great number of dying inmates
signed DNR orders, which saved prisons money that would otherwise be
spent on expensive medical procedures.
Another important outcome of
prison hospice programs was that
many inmate volunteers were transformed by their work taking care of
patients. Looking after someone and
expressing love, often for the first
time, can have a positive effect on
inmate volunteers and give them
greater opportunities for psychological rehabilitation. The care provided
for dying prisoners in correctional
facilities may also have a positive
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Hospice care
in the prison
Multidisciplinary
team
Cost-effectiveness
Inmate volunteer
involvement
Comfort care
Corrections benefits
End-of-life care
Experience of comfort care
Figure 1. Principal beneficial outcomes of prison hospice programs.
impact on the overall inmate population by sending the message that even
prisoners have the right to die with
dignity. In addition, inmate volunteers
helped to maintain order when terminally ill patients went through the
anger stage of dealing with death
while incarcerated.
The third outcome of the prison
hospice programs was the dying prisoners’ experience of comfort care.
Terminally ill inmates in these programs had the advantage of being able
to stay in familiar surroundings and
receive the support of inmate volunteers and others whom they knew.
They benefited from better pain management and the knowledge that they
would not die alone.
Discussion
The study found that there is a
growing effort across the country to
provide palliative care to dying
inmates. Despite the fact that all existing programs were developed independently, they all share five components: hospice care inside the prison,
inclusion of multidisciplinary teams,
volunteer involvement, provision of
comfort care, and end-of-life care.
These findings are consistent with the
results of studies by Maull.12,16 Maull
discussed the importance of inmate
volunteer involvement as a means of
connecting with the dying prisoners.
Inmate volunteers understand and
share prison culture and therefore
have a positive impact on both hospice patients and the healthy prison
population. Inmate volunteer involvement was also found to have a strong
positive effect on rehabilitation of the
volunteers.
When comparing prison hospices
to the community hospices, we found
that they shared basic components
for end-of-life care. However, prison
hospice programs had to be adapted
to prison environments. One of the
major adaptations was the offering of
palliative care behind bars versus in a
traditional home setting. To make
this transition, several issues had to
be resolved, such as combining comfort care with correctional goals,
allowing relaxed rules for the dying
patients while assuring security,
focusing on the patient and the family
as the unit of care, and keeping a
caregiver role in place. Adding security officials to the hospice teams,
using inmate volunteers in caregiver
roles, and permitting dying patients
to spend time with their relatives or
surrogate families all contributed to
an effective approach to the dying
patients’ needs.
Prison hospice care helps terminally
ill inmates die with dignity. With the
recent public focus on cost containment and efficiency of corrections, the
introduction of hospices in prisons has
become even more important. Social
policy and national quality assurance
standards should be developed to
expand the number of prison hospices
as well as to ensure their quality. 22 In
addition, general guidelines that all
prison hospices can follow should be
established.
References
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Call for Papers
American Journal of Hospice & Palliative Care invites the submission of
hospice-related articles in the following areas: research, case studies, literature reviews,
policy examination, and opinion & commentary.
Suggested topics include, but are not limited to, the following:
• Complementary hospice therapies
• Hospice nursing
• International hospice efforts
• Pain management
• Pediatric hospice care
• Spirituality in hospice
For more information, contact:
Editorial Department
American Journal of Hospice & Palliative Care
470 Boston Post Road
Weston, Massachusetts 02493
Tel: 781-899-2702
Fax: 781-899-4900
E-mail: [email protected]
Web site: www.hospicejournal.com
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