       F-O-C-U-S: A Guide to AIDS Research and Counseling
       --------------------------------------------------
       Volume 10, Number 8 - July 1995
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       Table of Contents

       Editorial: Dying Well?
       Hospice: A Place for Healing and Dying Well
       Psychiatry and HIV Hospice Care
       Recent Reports
       Clearinghouse
       Next Month

       **********************
       Editorial: Dying Well?
       Robert Marks, Editor

       People with HIV disease are always living with HIV disease.
It's hard to tell when an individual might start to die of it, and
even harder to tell when the people around that individual should
acknowledge that dying has entered the relationship.

       At a certain point, we must all let go of living well and
begin to consider a concept that Barbara Hines and Stephan Peura
discuss, "dying well." This can be a very attractive concept for
both client and counselor: many of us associate the dying process
with all the worst things, from pain to mental deterioration. But
what does it mean to die well, and how can counseling near the end
of life promote this outcome? How can people who are living truly
understand what it means to the body and mind to let go of life?

       Balancing Ignorance and Insight

       Most counseling is client-centered, but perhaps hospice
counseling is the most client-centered of all. The client must guide
the counselor through his or her reality in order for counseling to
be effective and for the counselor to play a useful role in helping
the client die well-whether that means coming to terms with changes
in functioning, saying good-bye to family and friends, or finding
relief from pain. To do this, I suspect that counselors need to
balance the ignorance of their clients' reality with the knowledge
of their clients' personality, habits, hopes and dreams, former
selves, and even inclinations to avoid or deny. As a client
deteriorates, a counselor may become a client's memory, offering a
perspective of the past just as only the client can envision his or
her future.

       If dying well means putting visions of the past and the
future together to attain clarity about the present, then this may
be a model for hospice care. Dying well is a dangerous concept
because it invites value judgment; as long as the values are the
client's, however, the goal of dying well can weave a safety net
that may protect people who are dying from an uncontrollable fall
into what may appear to be an unplumb-able abyss.

       *******************************************
       Hospice: A Place for Healing and Dying Well
       Barbara E. Hines, MA, MPA and Stephan M. Peura

       Caregivers of people with end-stage AIDS face beguiling
challenges in working with the young, disabled, and dying as they
try to help these individuals learn to live and die well. The
average person with AIDS is between 28 and 40 years old, usually not
the time when people have come to terms with their own mortality.
Often just beginning to establish themselves, young men and women
with HIV disease must incorporate a new and dramatic reality into
their maturing sense of self. They must reconcile who they are and
where they are going with the likelihood that they will have less
time than they had anticipated to grow and "leave their mark on the
world."

       In no other setting is this conflict so starkly posed as in
the hospice, a place where people come to die: a place where
resolution may occur leading to what providers often characterize as
a "good death" or where it may not occur, leaving family, friends,
and particularly caregivers with a sense of failure. In her studies
of death and dying, Elisabeth Kubler-Ross describes death as "the
final stage of growth." This is the concept upon which hospice
philosophy is based: death can be experienced as a meaningful stage
of life. Within this framework, it is the role of the hospice
counselor to assist dying clients in moving toward "inner peace" and
"self-possession"-the ultimate goal of "dying well." In a
residential hospice each member of the community can, in his or her
own way, help to nurture these emotional adjustments in him or
herself and in others.

       The Corpus Christi Residence (CCR) in Pittsburgh,
Pennsylvania is just such a place, a community-based residence for
people facing the physical challenges of end-stage HIV disease.
Individuals are admitted to CCR with an AIDS diagnosis and related
physical and neurologic disabilities or both, disabilities that can
no longer be accommodated at home. The residence offers medical,
nutritional, social, psychological, spiritual and hospice services
to people with AIDS, their families and significant others. It also
offers the opportunity to abstain from aggressive medical measures,
instead placing residents under the care of hospice professionals
until their death.

       Psychosocial Challenges

       Counselors and other caregivers of people with AIDS rarely
find their clients at the point of easily accepting impending death.
Instead, they find them with the same defenses of most
people-denial, anger, and depression-and at times, lacking the
proper level of knowledge necessary for end-of-life decision-making
and planning. The very nature of HIV disease can strengthen defenses
that interfere with an acceptance of death. The progression of HIV
disease over 10 or more years allows denial and anger to evolve as
healthy coping strategies: denial becomes a means of living
productively, and anger becomes a force for mounting the weaponry
with which to wage the medical struggle. By the time a person
experiences the physical decline of AIDS, these strategies may have
become established beyond their usefulness and to such a degree that
letting go of them may lead to an irrational fear of being left
defenseless.

       People with AIDS often look to their parents and
families-both biological and chosen-to support them. Unfortunately,
these individuals are sometimes unwilling or unable to provide
support, or are themselves unable to accept the death of a loved
one. The result is a lack of social support, leading to feelings of
abandonment at a time when the circumstances most demand nurturing
by friends and family.

       In the residential hospice setting, staff face daily the need
to respond to the dynamic nature of HIV disease in a community made
up of residents, families, partners, volunteers, and other staff
that is by definition extremely changeable. Reactions to the loss of
functioning, the death of another resident, or the resignation of a
staff member must be addressed by balancing the needs of residents
with the functioning of the community as a whole.

       Hospice staff must expect grief, denial, isolation, and
depression to surface. In response, providers identify and arrange
for appropriate interventions, approaches that do not differ from
those that might be applied outside the hospice. What can be
baffling is the unwillingness or inability of residents to utilize
resources that caregivers feel will comfort and support them. From
the caregiver's perspective, opportunities to "live well," deal with
issues, and die with dignity may be met with refusal. As a result,
destructive behaviors or avoidance may follow some clients to the
grave. For other residents, cognitive changes may progress too
rapidly for them to take advantage of services that might lead to a
more comfortable and resolved death. Counselors must expect that
each client will differ in his or her conception of "living and
dying well" and the proper way to meet death. The journey toward
inner peace and self-possession can be guided by hospice staff but
must be directed by clients, their values and beliefs about life,
spirituality, and how they wish to confront dying. By setting their
beliefs aside, counselors can help clients explore their own ideas
of life, hope, productivity, and death. To do this, counselors may
have to confront extreme personal emotions about death and beliefs
that they have only one, time-limited chance to "succeed" with their
dying clients. Three case studies describe the hospice approach.

       A Place to Confront Death

       Alice came to CCR from the hospital when her parents could no
longer care for her at home. Although a 40-year-old African-American
male, Alice, a post-operative transsexual, had been living as a
woman for many years. Her history included prostitution and many
years of substance abuse. At the time of admission, however, Alice
was in recovery and had maintained sobriety for close to two years.

       Upon admission, Alice was unaware of her specific illness. In
fact, her parents requested that the staff refrain from using the
word "AIDS." Alice was frightened of her condition and had turned
all decision-making power over to her parents. Alice's father had
survived a serious medical illness, and now Alice relied upon his
"powers of survival" to help her survive HIV disease. A CCR staff
member, hoping to help alleviate Alice's fears, inadvertently
mentioned AIDS during a discussion of treatment alternatives. In the
meeting that followed, Alice expressed rage at being "condemned"
with a terminal diagnosis by staff, and her parents accused the CCR
administrator of betraying them. For them, Alice did not have
"AIDS," and mentioning the condition put Alice in danger and would
certainly lead to her diminished health.

       In response, the administrator emphasized that Alice did have
AIDS, but that he would instruct the staff not to talk to Alice
about this. He encouraged Alice to speak with her physician and get
clear information about her condition. Soon after, Alice apologized
for her extreme reaction. She explained that she now knew from her
physician that she had AIDS, and she was ready to accept and deal
with it.

       Alice's parents believed her acceptance of AIDS was a death
sentence and their distrust of the staff remained strong. In the
end, Alice relied on her parents' denial to provide her with hope
and to guide her choices for care. The staff was unable to convince
Alice's parents to accept her terminal condition and agree to
hospice care. Instead, Alice was transferred from CCR to a nursing
home for the elderly, where she died a short time later.

       The staff experienced Alice's discharge as a failure. To
them, Alice had denied herself hospice services which could have
helped her "die well." But another perspective is possible. By
identifying Alice's level of knowledge about HIV disease, the staff
provided information so that she might become active and informed in
her care, and allowed Alice to understand and accept her AIDS
diagnosis. Alice's choice to accept her parents' decision to fight
her death allowed Alice to continue to receive their full support
and involvement in her life up to the end. Although it meant leaving
hospice care, for Alice this may have amounted to "living and dying
well."

       A Place to Heal

       Bill was admitted to CCR near death. At 5 feet 11 inches
tall, he weighed only 118 pounds and was unable to eat due to severe
esophageal ulcers. A 50-year-old African-American man, Bill had
worked in an automotive assembly plant for 25 years while actively
addicted to alcohol and injection drugs. A relapse after two years
of sobriety had contributed to his medical emergency.

       Gastric feedings supplied Bill with nourishment and despite
his poor prognosis, he began to respond to medications. He gained
weight and slowly began to eat. As Bill recovered, his energy level
increased. Within three months, he gained 30 pounds and established
a life outside CCR. Bill stayed at CCR and remained active in
community, social, and recreational events. Aware of his potential
for another relapse, Bill continued substance abuse counseling.
Direct conversations about having AIDS, however, were challenging
for Bill; he was able to admit that he was an addict, but stopped
short of acknowledging HIV infection.

       At first the staff tried to encourage Bill to attend support
groups to help him address and accept his HIV disease, but Bill was
resistant and denied the extent of his illness. Bill believed this
strategy would keep him healthy. The staff felt that Bill would
better respond to his health issues by accepting his disease.

       Responding to both Bill's inclinations and their own
concerns, CCR staff encouraged Bill to become active in planning a
local agency's AIDS healing weekend. In helping to plan and
attending the event, Bill met and came to know other individuals
with AIDS in a positive environment. Participating in this way has
helped Bill to become involved, on his own terms, in his diagnosis
and healing. In the end, staff were successful in providing a
therapeutic experience for Bill while taking into account his
approach to his illness.

       A Place for Community

       Toby, a 45-year-old White man, was difficult from the start.
He was admitted to CCR in advanced stages of AIDS and HIV-associated
dementia. His demeanor was either grumpy or withdrawn. While staff
were able to address his difficult behaviors, Toby's decompensation
increased, and he was required to eat alone due to shocking
behaviors, including spitting and urinating on the table at meals.

       At community meetings, staff encouraged angry residents to
separate the awful behaviors from the dying man, and to confront
their own terrors about dementia which arose in response to Toby's
decline. Gradually, residents agreed to assist and monitor Toby in
their own ways, taking turns sitting with him at meals, holding his
hand at bedside when he became immobile. In the end, several
once-irritated residents were able to wish Toby good-bye and missed
him after he died. Toby's dementia became an opportunity for the
staff to educate the entire community, helping residents accept
difficult behaviors through education about dementia, and by
encouraging a "there-but-for-the-grace-of-God-go-I" outlook.

       Responding in the Hospice Environment

       As these cases suggest, hospice is a place for the most
severely ill to get support and comfort in a community setting. The
first responsibility of hospice staff is to provide information
about HIV disease, the hospice community, and end-of-life issues and
planning.

       Secondly, hospice staff should provide residents with
emotional support to deal with HIV disease and death, particularly
because the decline and death of others may challenge the protective
denial many HIV-infected people develop in order to live in the
shadow of a life-threatening disease. Counselors can assist by
helping residents develop and maintain support systems made up of
biological families, families of choice, the hospice community, and
staff. In a setting where death is so present, spirituality and
ritual may comprise a particularly valuable source of hope and
emotional support. Residents and staff are encouraged to study and
practice spiritual customs, and the expression of sorrow can be a
comfort to the entire community and ensure residents that their
deaths will not go unnoticed or unacknowledged.

       Finally, until the end of life, productivity can provide
meaning. Staff who come to know residents, their likes and dislikes,
can assist them in finding and participating in the activities he or
she finds productive and satisfying within his or her current
physical and mental abilities.

       Conclusion

       Counselors and other caregivers of people dying of AIDS are
faced with many challenges including dementia, denial, depression,
anger, fear, and a reluctance or inability to accept death. In
residential settings, further challenges arise as the community is
affected by each death. The goal of hospice is to establish an
environment that allows growth, communication, and achievement
despite physical and emotional decline. The hospice setting is
particularly powerful because it enables each individual to
experience the full spectrum of life with all of it emotions while
facing the reality of death.

       References

              1. Hayes TG, Fisher BJ, Hill RA, Cassiday TJ. Life,
       Death and Immortality-The Journey of the Soul. Wilmette, IL:
       Baha'i Publishing Trust, 1994.

              2. Kubler-Ross E. Death-The Final Stage of Growth. New
       York: Simon & Schuster, Inc., 1975.

              3. Kubler-Ross E. On Death and Dying. New York:
       Macmillan Publishing Company, 1969.

              4. Neisen JH. Reclaiming Pride-Daily Reflections on
       Gay and Lesbian Life. Deerfield Beech, CA: Health
       Communica-tions, Inc., 1994.

              5. Vanzant I. Acts of Faith, Daily Meditations for
       People of Color. New York: Simon & Schuster, 1993.

              6. Williamson M. Illuminata, Thoughts, Prayers, Rites
       of Passage. New York: Random House, 1994.


       Authors

       Barbara Hines, MA, MPA is Coordinator of Client Services at
       Corpus Christi Resi-dence and Admini-strator of the Verona
       House Assistance Program, which provides rent subsidies and
       support services to people with HIV disease. She has also
       worked in the ombudsman's office at Gay Men's Health Crisis
       and was director of scatter-site housing at Housing Works in
       New York.

       Stephan M. Peura is Director of HIV Programs for
       Pres-byterian SeniorCare, Administrator of Corpus Christi
       Resi-dence, and Executive Director of Verona House
       Corporation. He is also co-chair of the Pennsylvania HIV
       Prevention Community Planning Committee.

       *******************************
       Psychiatry and HIV Hospice Care
       John E. Fryer, MD

       Hospice care seems a natural paradigm for treating HIV
disease, a condition that shortens the lives of most people who are
HIV-infected. Hospice care relies on a variety of approaches to heal
the mind and the soul, if not the body. But while hospice care has
been well-developed in the United States and the United Kingdom, it
has in many ways overlooked a crucial tool in responding to the
mental health needs of dying residents: psychiatry.

       The first modern hospice was opened in the United Kingdom in
1967. In recent years, a variety of HIV-specific hospices have been
developed in many countries, and people with HIV disease have been
incorporated into more traditional hospices. Yet psychiatrists have
been only occasionally represented on hospice staffs, and then only
in a limited way. In the new world of managed care-which seeks to
define very clearly the role of each professional participating in
health care-psychiatry is vulnerable to being misunderstood and
excluded. Some of the psychiatrist's responsibilities may be handled
by other practitioners who are not able to provide a deeper
understanding of the complex picture of organic brain dysfunction,
side effects of medical or psychiatric drugs, effects of grief or of
substance abuse, or the psychiatric effects of opportunistic
infections or cancers. For example, hospice social workers and
psychologists can assume the role of providing psychotherapy,
hospice physicians are prepared by their training to prescribe
psychotropic agents, except for perhaps the very newest ones, and
all members of the staff-even volunteers-retain primary care
interests in the people they treat. In the hospice setting,
psychiatrists are most often used to take care of "disturbing,"
unruly patients, and are expected to do so simply by prescribing
sedative medication and not by seeking the social or psychological
roots of psychological distress.

       The Absence of Psychiatry

       In order to study this situation and to understand more
clearly the potential role of psychiatrists in HIV hospice care, I
took the opportunity of a sabbatical year in 1993-1994 to visit a
number of HIV hospices in the United States and the United Kingdom.
While the hospices I visited were generally creative, comfortable
places, they lacked the benefits of a psychiatric perspective.

       I found that a well-trained psychiatrist, experienced in
HIV-related and palliative care, could significantly improve the
quality of life for a person in the later stages of HIV disease. A
psychiatrist can understand the disparate causes of a given
psychiatric problem and can evaluate and treat it holistically, that
is, within the context of the complex issues I have described above.
Too often a condition was simply written off as "AIDS dementia,"
when a more careful and integrated analysis by a psychiatrist might
have indicated a combination of causes that go deeper than this
diagnosis: organic illness, substance abuse, the effects of
bereavement, and the effects of HIV-related medications. During the
later stages of HIV disease, as brain dysfunction is more likely to
arise and as impending death may challenge mental health, this kind
of sensitive analysis is crucial to palliative care.

       In the United Kingdom, the trend has always been to have
inpatient bedded hospice, both traditional and HIV. The United
Kingdom now has well over 200 inpatient hospices, nearly 400 home
care teams, approximately 250 hospital-based support teams, and over
200 day care centers. Many of these programs treat people with HIV
disease, although the mission of most of them remains the care of
persons with cancer. In the United States, where there are well over
2,000 hospice programs, most are a combination of home and
hospital-based support teams. There are only about 20 free-standing
inpatient hospices, and very few day care centers. These hospices
tend to be much less professionally focused than the British
hospices, and few use psychiatrists. When asked about this, one
hospice professional suggested that it was based on a wish not to
"pathologize" residents' problems.

       I visited three inpatient hospices in the United Kingdom, two
in London where the disease is primarily still in the gay community,
and one in Edinburgh, where it is primarily among injection drug
users. All of these programs offer client-centered care. For
example, at London Light House, which was created by the gay
community, staff make a great effort to create a "home-like"
atmosphere: residents may bring pets and favorite furniture; staff
encourage the active participation of lovers and family; and staff
dress in street clothes. The residence also stretches the concept of
hospice by including inpatients at many stages of illness, even very
early when social, not medical factors, are the focus of distress.

       There is no psychiatric input at any of these hospice. At
London Light House, there is even skepticism about psychological
treatment in general, and there are no psychotherapy groups.
Instead, there are many complementary therapies aimed at mental
health, including aromatherapy and massage therapy. Psychiatric
medications are considered an aspect of medical care and are
prescribed by physicians other than psychiatrists. Overall, while
there is a tremendous sense of openness and caring, traditionally
trained psychiatrists-and even psychologists and social
workers-practice their craft only indirectly as consultants.
Psychiatrists are not actively involved in American hospices either.

       What happens when psychiatrists are not part of the active
treatment team? The most significant shortcoming is that the
treatment team lacks the perspective of a physician who is trained
to evaluate both the physical and psychiatric pieces of the whole
patient picture, enabling a more precise understanding of the
effects of dementia, grief, opportunistic infections, substance
abuse, the effects of HIV treatment, and the effects of
psychopharmacologic agents. In hospices on both sides of the
Atlantic, I believe that many of these issues were more accurately
delineated because I participated in the process. Many psychiatrists
in the United States are more than willing to serve as hospice
consultants, whether voluntary or paid, yet they are not used
because of the "guild" issues I allude to above. The time is ripe to
make use of this tremendous resource.

       Conclusion

       To implement psychiatric care in a specific hospice,
involvement might first be limited to consultation on individual
cases. Then, as the usefulness of psychiatric assistance becomes
clear, the psychiatrist might become more involved. This must be an
active process, with the psychiatrist working not only to provide
services but also to seek funding for these services and to provide
evidence of long-term efficacy and economy.

       In Philadelphia, we have convened a monthly meeting of 25
"Psychiatrists Concerned About AIDS." We have met more than 20
times, educating ourselves about the discrete psychiatric issues of
HIV disease as well as the political strategies for overcoming the
exclusion of psychiatrists from acute and palliative care. By
pooling resources and assisting one another, we are making inroads
into resolving the split between psychiatry and hospice care.

       References

       Feigenberg L, Shneidman E. Clinical thanatology and
       psychotherapy: Some reflections on caring for the dying
       person. Omega. 1979; 10(1): 1-8.

       Fryer J. The psychiatrist in hospice care: Proper use of
       psychotherapeutic skills and psychotropic medication.
       Seminars in Oncology. 1985; 12(4): 445-451.

       Murray Parkes CM. Bereavement. New York: International
       Universities Press, 1972.

       Authors

       John Fryer, MD is Professor of Psychiatry at Temple
       University in Philadelphia. He has worked in the field of
       death and dying for 25 years and has worked with a number of
       hospice programs.


       **************
       Recent Reports

       Pain at the End of Life

       Eldridge AD, Severance-Lossin L, Nicholas PK, et al.
       Prevalence and characteristics of pain in persons with
       terminal-stage AIDS. Journal of Advanced Nursing. 1994; 20
       (2): 260-268. (Boston Health Care for the Homeless; Cook
       County Hospital, Chicago; and MGH Institute of Health
       Professionals, Boston.)

       Although guidelines for pain management extrapolated from
cancer treatment have been helpful in the care of people with HIV
disease, little is known specifically about the pain experienced by
HIV-infected individuals. A small retrospective survey of
terminal-stage AIDS patients suggests that pain is widespread in
this population and that it is most common in the lower back and
extremities.

       Fifty patients-40 men and 10 women-from a residential hospice
in Boston answered a series of questions about their pain experience
including: location; intensity; quality; onset, variations,
durations, and variability; manner of expressing pain; means that
relieve pain; means that exacerbate pain; effects of pain; and plan
of care to manage pain. Fifty percent of the sample had suffered a
bout of Pneumocystis carinii pneumonia at least once; 50 percent had
experienced other viral infections; 22 percent had experienced
HIV-related cancers, and 20 percent had been affected by
candidiasis.

       Applying this definition, researchers found the prevalence of
pain among AIDS patients to be about 54 percent. Twenty of the 50
patients reported pain at the time of admission to the hospice, and
23 were able to describe the pain they had experienced in the course
of their illness. As many as 15 of the patients were unable to rate
their present level of pain on the given scale, although at least
five of these patients reported experiencing pain at the time of the
study.

       Researchers asked subjects to rate such pain on a scale of 0
to 10. Reported levels of pain averaged 7.5. The range of "worst
level of pain" was 6 to 10, with a mean of 8.6; the range of "best
levels of pain" was 0 to 6, with a mean of 2.5. Subjects rated
"acceptable levels of pain" as ranging from 0 to 6, with a mean of
2.1. Subjects most frequently reported pain in the lower extremities
and back. Many of the subjects-36 percent-described pain as
"aching"; lower numbers described it as "sharp" (16 percent) or
"throbbing" (10 percent). The majority of patients reported that
their pain could be relieved with medications; narcotic analgesics
were four times more prevalent than non-narcotic analgesics.

       --------------------------
       Evaluating Palliative Care

       Butters E, Higginson I, George R, et al. Palliative care for
       people with HIV/AIDS: Views of patients, carers and
       providers. AIDS Care. 1993; 5(1): 105-116. (University
       College London and Middlesex School of Medicine; and National
       Temperance Hospital, London.)

       A user assessment of an HIV-related palliative care program
identified problems in terms of symptom control, pain management,
patient and family anxiety, and communication with health care
professionals.

       Subjects were participants in the Community Care Team (CCT),
a program that provides physical, psychological, and spiritual
support to people with HIV disease and to their informal caregivers.
Services include symptom control, counseling, bereavement follow-up
for families and caregivers, and education and advice on diagnosis,
nursing, and terminal care needs.

       CCT team members began by assessing the program themselves
and identified 17 areas of service that formed the foundation of the
program. Researchers then interviewed 19 patients and eight informal
caregivers at home. They asked subjects to rate eight of the 17
areas, which included both physical and emotional care issues.

       The CCT team rated symptom control, patient anxiety, and
family anxiety as most important current problems in their services.
Patients rated pain control, symptom control, and patient anxiety as
the areas in most need of additional concentration, assigning
marginally higher ratings to pain and symptom control than did CCT
staff. Caregivers assigned high ratings to pain control, symptom
control, patient anxiety, family anxiety, and communication of
professionals with patient and family. Ratings of patients,
caregivers, and the CCT staff were in close agreement, indicating
that views of CCT's providers reasonably reflected those of patients
and caregivers.

       ---------------------------------------
       Psychosocial Needs of Hospice Residents

       Baker NT, Seager RD. A comparison of the psychosocial needs
       of hospice patients with AIDS and those with other diagnoses.
       Hospice Journal. 1991; 7(1): 61-69. (Cedar Valley Hospice,
       Waterloo, Iowa; and University of Northeast Iowa.)

       Hospice residents with HIV disease require more staff support
than do hospice patients with other illnesses due to their youth and
social stigmatization, according to a small survey of hospice staff.

       Thirteen staff members of Cedar Valley Hospice in Waterloo,
Iowa-including nurses, psychosocial team members, and other
staff-responded to a seven-item questionnaire evaluating whether
residents with AIDS required more time than similarly aged residents
without AIDS; whether more time was actually given to these
residents and, if so, why; whether young residents in general
required more time; and whether it was more stressful to work with
residents with AIDS and, if so, why. At the time of the survey, the
hospice population included 11 residents with AIDS and 36 non-AIDS
residents. All of the AIDS residents were male, 22 of the 36
non-AIDS patients were male, and all residents were 50 years old or
younger.

       Residents with AIDS required face-to-face staff contact twice
as often as residents with other illnesses and telephone contact
two-and-a-half times as often. Nursing staff estimated that visits
with these residents took 15 minutes to an hour longer. Ninety-two
percent of the staff agreed that the extra time required was due to
the special physical and emotional needs of residents with AIDS.
Although social isolation was a commonly reported problem, levels of
family support for residents with AIDS did not differ significantly
from other patients.

       ------------------------------------
       Palliative Care for People with AIDS

       Kuhl DR. Ethical issues near the end of life: A physician's
       perspective on caring for persons with AIDS. Journal of
       Palliative Care. 1994; 10(3): 117-121. (St. Paul's Hospital,
       Vancouver, Canada.)

       An essay on palliative care identifies several emotional
issues that come to the foreground as people respond to late-stage
HIV disease and describes ethical issues for physicians dealing with
pain and symptom management. Many people with AIDS experience
feelings of helplessness when faced with the multiple decisions
surrounding an unpredictable condition. The inability to plan the
course of one's life with any certainty contributes to a sense of
powerlessness at a time when many people already feel they have lost
their autonomy to their illness.

       Relationships to partners, family, and friends are
complicated near the end of life. People with AIDS must define which
relationships are important to them. The process of creating a
living will may help to clarify this by forcing clients to assess
current relationships in their lives and state explicitly what roles
they wish these people to play throughout the course of their
illness.

       Palliative care should seek to enable individuals to exercise
control. In doing so, practitioners should respect above all a
client's "personhood"-his or her ability to assume active roles,
maintain routines, plan for the future. Practitioners should ask
clients how they see themselves, what they would like, where they
would like to receive care, and how they can best be helped in
achieving personal goals. Respect for dignity, autonomy, and
individuality means helping clients exercise the right to make
informed decisions about their own care.

       Suffering, lack of control, and loss of dignity may raise
ultimate questions of the right to die. Sometimes suicide is a
desirable course of action for patients whose physical pain seems
uncontrollable or whose emotional pain at losing control of their
lives to their illness seems unbearable. Providers need to be
prepared to confront these issues in order to help clients resolve
them.

       ***************************************
       Clearinghouse: Caring for Dying Clients

       References

       Amenta MO, Shubert V. Hospice nursing and the AIDS epidemic.
Home Healthcare Nurse. 1994; 12(2): 54-55.

       Battin MP. Physicians, partners, and people with AIDS:
Deciding about suicide. Crisis. 1994; 15(1): 15-21.

       Boccellari A, Zeifert P. Management of neurobehavioral
impairment in HIV-1 infection. Psychiatric Clinics of North America.
1994; 17(1): 183-203.

       Burnard P. The psychosocial needs of people with HIV and
AIDS: A view from nurse educators and counsellors. Journal of
Advanced Nursing. 1993; 18(11): 1779-1786.

       Chapman CR, Gavrin J.  Suffering and its relationship to
pain. Journal of Palliative Care. 1993; 9(2): 7.

       Daniolos PT. House calls: A support group for individuals
with AIDS in a community residential setting. International Journal
of Group Psychotherapy. 1994; 44(2): 133-152.

       Faries JE, Mills DS, Goldsmith KW. Systematic pain records
and their impact on pain control. Cancer Nursing. 1991; 14(6):
306-313.

       Fogel BS, Mor V. Depressed mood and care preferences in
patients with AIDS. General Hospital Psychiatry. 1993; 15(4):
203-207.

       Glare PA. Palliative care in acquired immunodeficiency
syndrome: Problems and practicalities. Annals of the Academy of
Medicine. 1994; 23(2): 235-243.

       Hall BA. Ways of maintaining hope in HIV disease. Research in
Nursing and Health. 1994; 17(4): 283-293.

       Lewis MS, Warfield CA. Management of pain in AIDS. Hospital
Practice. 1990; 25(2): 51-54.

       Neubecker J. Hospice: A comprehensive program. Health
Progress. 1994; 75(9): 28-31.

       Newshan GT, Wainapel SF. Pain characteristics and their
management in persons with AIDS. Journal of the Association of
Nurses in AIDS Care. 1993; 4(2): 53-59.

       Reed GM, Kemeny ME, Taylor SE, et al. Realistic acceptance as
a predictor of decreased survival time in gay men with AIDS. Health
Psychology. 1994; 13(4): 299-307.

       Robb V. The hotel project. A community approach to persons
with AIDS. Nursing Clinics of North America. 1994; 29(3): 521-531.

       Stanton DL, Wu AW, Moore RD, et al. Functional status of
persons with HIV infection in an ambulatory setting. Journal of
Aquired Immune Deficiency Syndromes. 1994; 7(10): 1050-1056.

       Thurgood EN. Dying at home with AIDS. Primary care
perspective. Canadian Family Physician. 1994; 40: 1380-1387.

       Ufema J. Pain control survey results: Not good. American
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       Contacts

       John E. Fryer, MD, 138 West Walnut Lane, Philadelphia, PA
19144, 215-707-3351; 215-848-2806.

       Tom Grothe, RN, MFCC, Coming Home Hospice, 115 Diamond
Street, San Francisco 94114, 415-861-1110.

       Barbara E. Hines, MA, MPA, Corpus Christi Residence, 7165
Churchland Street, Pittsburgh, PA 15206, 412-441-0122, ext. 116.

       Jeremy Hollinger, MFCC, 3360 Geary Street, San Francisco, CA
94118, 415-750-4404.

       Stephan Peura, Corpus Christi Residence, 7165 Churchland
Street, Pittsburgh, PA 15206, 412-441-0122, ext. 117.

       See also references cited in articles in this issue.

       **********
       Next Month

       Among providers and clients alike, there is an intuitive
sense that depression is a reasonable and common response to being
HIV-infected. But according to a review of the literature by Judith
G. Rabkin, PhD and Robert H. Remien, PhD, this assumption is
unfounded. In the August issue of FOCUS, Rabkin and Remien, both
professors at Columbia University, find that depression is not
correlated with disease stage, T-helper cell count, or HIV-related
medication use. They also clarify when and among whom HIV-related
depression is likely to arise and treatment approaches.

       Also in the August issue, Bruce Victor, MD, Director of the
Clinical Psychopharmacology department at California-Pacific Medical
Center in San Francisco, discusses the reciprocal relationship
between depression and sexual dysfunction. He describes the
inextricable link between depression and sexual dysfunction, and how
antidepressant use may both respond to sexual dysfunction by
reducing depression and exacerbate dysfunction through biochemical
interactions.


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