Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

12th World AIDS Conference

Abstracts 24248-24254 489

24248 "It's my body and I'll die when I want to"
Stephen Barksby. 213, Church Lane, Moston, Manchester M94LY UK
Issue: This paper argues, from the perspective of a person with AIDS (PWA),
that the concepts of personal autonomy, choice in decision making, and self-determination should be given fundamental recognition when facing end-of-life
decisions.
Project: Current English law prohibits physician assisted suicide and voluntary euthanasia. Yet, the British Social Attitudes Survey indicates that a large
majority of adults would support a change in the law. A review of the literature
demonstrates that many AIDS organisations support greater choice in end-of-life
decisions and that a large proportion of PWA's choose to die by physician assisted
suicide or voluntary euthanasia; with illegal assistance.
Autonomy, choice and self determination are central to treatment decisions,
and often involved deeply personal choices about managing one's own body and
illness. These decisions are generally respected in good professional practice
and have limited legal protection, provided that they do not directly cause death.
Results: The partnership that exists between physicians and patients with
respect to decisions about treating clinical illness dissolves at the pivotal point
where it is the existence of the person, not the illness, that is being called into
question. Medical ethics and law currently oppress the personhood of the PWA
at this junction. Due to these legal barriers, personal discussions with my own
medical providers, have only elicited cautious and inconclusive responses.
Lessons Learned: Health carers respect patient autonomy and choice with
regards to health care in general. However, personal experience suggests this
respect yields to paternalism when it comes to the full range of options about
managing the timing of one's death.
24249 1 Living with and dying of AIDS: Today's changes
Richard Sserunkuma1, E.O.T. Otolok-Tanga2, K.T. Kasule3. 1 Taso-Kampala RO.
Box 11485, Kampala; 2The AIDS Support Organization, Kampala; 3Uganda
Blood Transfusion Service, Kampala, Uganda
Issue: In the early 1980s, when HIV and AIDS was first reported in Uganda,
PLWHA didn't know what to do. They used to suffer alot, lose hope instantly and
the in a very desperate state. Things are different now!
Project: The AIDS Support Organisation (TASO) has since 1987 contributed
to a process of restoring hope and improving the quality of life of PLWHA. This
is done through provision of counselling, medicare and social support services to
over 25000 clients - PLWHA (People Living with HIV/AIDS) country-wide.
Results: PLWHA in TASO have now been seen to be living better, longer,
healtheir and more productive lives. The days of "dying tomorrow/soon have
been turned into days of "Living positively with HIV/AIDS while planning for not
only their own but for also their dependants' (children, spouses, parents, etc...)
future.
Once provided with care and support, PLWHA can live positive decent lives
and decrease the dependancy syndrome. This as an experience shows and
illustrates that "dying is not a process" and that PLWHA can do quite a lot before
they eventually die of AIDS.
24250 1 The reasons for and timing of an AIDS-related assisted
death
Suzanne Bermingham, S. Kippax. National Centre in HIV Social Research,
Macquarie University, Sydney, NSW2109, Australia
Objectives: To examine the factors that lead to the choice and timing of an
assisted death.
Methods: An ongoing qualitative study examining psychosocial issues concerning assisted death. Results are based on over 20 interviews with people who
assisted a PLWHA to die, most of whom were partners or friends.
Results: Three main themes emerged from the data to do with the decision by
the PLWHA to go ahead with an assisted death. These were:
(1) an unwillingness to endure further chronic illness;
(2) concern over increasing loss of independence and control;
(3) a fear of losing mental competency, particularly due to dementia.
The timing of the death was often triggered by one or more of the following
events: complete loss of sight due to cytomegalovirus retinitis, diagnosis of an
illness that required treatment that was unlikely to work effectively or had unpleasant side-effects, an appointment with a consultant who predicted a relatively
short time to live, and an aversion to dying in a hospital or hospice. These triggers
sometimes resulted in a quick discharge from the hospital, and the person dying
with assistance at home within days.
Conclusion: A person dying with AIDS may choose an assisted death to avoid
further loss of control over their physical or mental world, or due to an unwillingness to endure further illness. The timing of the death may often be triggered by
an adverse health event.

24251 Aboriginal palliative care
Shelly Vanderhoef. STE201-45 Charles Street, East Toronto, Ontario M4Y 1S2,
Canada
Palliative Care for Aboriginal peoples with AIDS raises complex issues. Poverty,
Homophobia, AIDSphobia and Racism in Aboriginal communities and mainstream
society presents enormous obstacles to providing culturally appropriate Palliative

Care to Aboriginal people. Through the development of an Aboriginal Palliative
Care Manual, 2-Spirited People of the 1st Nations hopes to provide tools and techniques which will be useful in setting up care teams who will provide sensitive, culturally appropriate care to Aboriginal peoples. The Manual uses Traditional story
telling to illustrate the unique needs and hopes of Aboriginal peoples with AIDS.
-The need for well informed caregivers and accurate information on HIV/AIDS
- Treating the person with AIDS with respect and dignity
- Different customs and tradition in Aboriginal communities for dealing with
death and dying
- Planning well ahead with the direct participation of the person with AIDS
S24252 Giving death: Voices of Canadian nurses in AIDS care
Michael Young1, R.D. Ogden2, M.G. Young3. 110643 River Road, Delta, British
Columbia V4C2R1; 3University of Victoria, Victoria, Canada; 2 Loughborough
University, Loughborough, England
Issues: Nurses are directly involved with HIV/AIDS and the problems associated
with hastening death through euthanasia or assisted suicide. However, research
on the attitudes and experiences of health care providers is almost exclusively
confined to the physician community.
Project: A mail-out survey to Canadian nurses working in AIDS care provided
them with the opportunity to document their opinions and experiences with regard
to the practice of euthanasia and assisted suicide. A total of 22 of the 45 respondents (48.8%) completing the survey documented such opinions/experiences.
Results: An emergent analysis of the responses reveals four substantive areas
of concern for the respondents. First, there is considerable support for the practice of euthanasia and assisted suicide among nurses and many nurses actively
participate in death hastening acts. Second, many nurses feel that changes in law
are necessary in order to control behaviour which is currently illegal but carried
out on a regular basis. Third, the need for changes in law are associated with a
concern over the abuse of euthanasia and assisted suicide. While most nurses
do not want to commit the final death hastening act, many want to be involved
in the end-of-life decision-making process. Finally, nurses want more dialogue
regarding the practice of euthanasia and assisted suicide and on the issue of how
to identify the appropriate time to commit a death hastening act.
Lessons Learned: That most of the respondents support death hastening acts
suggests that future debate on euthanasia and assisted suicide may turn on the
regulation and control of these acts. Without active involvement, the potential
contribution that nurses can bring to this debate is at risk of being overshadowed
by the concerns and experiences of the physician community.
24253 Death: A sensitization workshop for prison workers in
Brazil
Claudia Dornelles. AV Lageado 699 APT 305-Porto Alegre-RS 90460-110,
Brazil
Issue: Fear of death causes people to develop denial and defense mechanisms
that generate prejudice and even avoidance of AIDS-related issues. Due to the
risks and pressures of their jobs, prison workers can be specially prone to these
behaviors.
Project: A three hour workshop (first developed by Professor Fernando Seffner)
using role-play techniques, poetry and text reading and discussion was included
in a week-long AIDS-Prevention Course for prison workers in the State of Rio
Grande do Sul, Brazil. The aim of the workshop was to allow participants to
explore and express their thoughts and feelings about death and how they affect
their perception and behavior towards HIV infection and prevention strategies
among inmates.
Results: 162 workers from all 84 prisons in the state, including penitentiary
agents (PAs), lawyers, social workers, psychologists, doctors, nurses and teachers took part in the workshop in 8 editions of the course. The workshop was
highly appreciated as a chance to approach such a seldom discussed topic.
PAs were more likely to report difficulties with the subject because, given the
potencially dangerous situations their exposed to everyday, "thinking about death
would make it impossible to go to work." The belief that inmates are careless
about AIDS because "they have nothing to loose", being already dead in a sense,
was also common.
Lessons Learned: The association between AIDS and death is still very strong
in people's minds, and simply providing information is not enough overcome the
irrational fears and prejudices it generates that can hinder the implementation of
prevention strategies. Exploring this subject in a relaxed and sensitive way helps
people become more aware of their behaviour and promotes change.
597*/24254 The personal meanings and constructs attributed
to being labelled with AIDS dementia complex
Irit Ben-Nissan1, K. O'Neill2, B. Bren3. 1301 Forbes St., Darlinghurst 2010, New
South Wales; 2AIDS Dementia & HIV Psychiatry Service, Sydney; 3St. Vincents
Hospital, Sydney, Australia

Issues: People diagnosed with AIDS dementia complex (ADC) are initially confronted by the term itself. Often the medical definition does not symbolically
correlate with the meanings the person applies to his experiences. The fear,
vulnerability and fragile sense of self forces the person to redefine their life and
who they are. New constructs of meaning are created and integrated as part of
the ego in order to make sense of the 'mind chaos' that the virus has imposed.