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

12th World AIDS Conference

Abstracts 22433-22438 351

22433 Palliative care for hospitalized patients with terminal
AIDS
Cheryl Smith1, D.N. Rose2, B. Williams3, E. Geer3. 1One Gustave Levy Place,
Box 1009, New York, New York, 10029; 2Long Island Jewish Medical Center,
New Hyde Park, NY; 3Mount Sinai Medical Center, New York, NY USA
Objective: To analyze the evidence for the level of comfort and the palliative care
provided to AIDS patients in the last 72 hours of life.
Design: Retrospective chart review.
Methods: A medical record review of all HIV infected patients who died from
July, 1996-June, 1997 at Mount Sinai Hospital, a AIDS clinical care and case
management.
Results: Fifty-one patients records were reviewed. The leading causes of death
were from respiratory and central nervous system disease. Death was anticipated
in 40 (78%) patients; eight (16%) records documented discussions with patients
about imminent death and 49 (96%) records documented discussions about
advance directives. Chart notes within 24 hours of death indicated the comfort
level for 29 (57%) patients. Procedures or tests within 48 hours of death included
insertion of an endotracheal tube in 7 (14%) patients, an arterial catheter in 7
(14%) patients, a Foley catheter in 5 (10%) patients, a nasogastric tube in 4 (8%)
patients, and an x-ray in 11 (22%) patients.
Conclusion: Discussions of advance directives was documented for nearly
all patients but the level of comfort was documented in only half. Many patients
had procedures or tests that may have caused discomfort. Even among highly
experienced AIDS clinicians more attention could be paid to maximizing comfort
prior to death.
22434 "Bridging the gap" in multidisciplinary education and
training
Nena Nera. Jeanne Mance Building, Tunney's Pasture, Ottawa, Ontario, Canada
Issue: The cross-education of professional caregivers has been an issue in the
provision of comprehensive and holistic care for HIV/AIDS. Professional caregivers from various disciplines have been accused of exclusivity, "tunnel vision",
being "turfish", etc... Re-orientation for many disciplines have been necessary -
learning together, adult education as an approach to learning, skills-building, and
other approaches to education had to be tried... all of these experiential training
and approaches were tried in order to improve delivery of care and support for
HIV/AIDS, as well as to increase the recruitment of more professionals from the
different disciplines.
Project: To aim for a better integration of educational approaches in the areas
of medical, social, behavioural and economic interventions to care, treatment and
support, several initiatives were put in place aimed at cross-education, training,
orientation/re-orientation of professional caregivers from various disciplines. Two
specific models/approaches will be highlighted in this presentation.
Results: An approach to the integration of HIV and palliative care was achieved
through integrated workshops (with an established curriculum) given by a multidisciplinary team and community-based workers. It has taken a decade to "marry"
palliative care which is usually translated in institutional terms, and communitybased HIV/AIDS care. It will be highlighted in this presentation that the integrated
approach of psychiatry, psychology and social work in providing care, treatment
and support without duplication with effective coordination in achievable.
Lessons Learned: Cross-education, orientation/re-orientation, and openlearning from each other "bridges the gap" between professional disciplines.
It was learned that it takes more than team coordination to bridge the gap. It
takes cross-learning and re-orientation; better understanding of different theories
behind each other's discipline that makes for an efficient way of "bridging the gap."
This approach is possible and achievable. Ultimately, it enhances the approaches
to care, treatment and support.
22435 AIDS and palliative care: A needs assessment study in
the era of protease inhibitors
Jerry Gates1, S. Radecki1, E. Daniels2. 1Pacific AIDS Ed. and Training Center
1420 San Pablo St., PM B-B 2 05, L.A. CA;2HIV/AIDS Policy, Off. of the Sec.,
DHHS Washingto, DC, USA
Issues: To evaluate a manual developed for use within the Canadian care system
by providers of HIV and AIDS care in the United States and to determine the
need for a similar document for use in the US.
Project: This evaluation effort was part of the US component of a joint set of
US-Canadian initiatives involving DHHS (Office of HIV/AIDS Policy, HRSA) and
Health Canada. Federally established AIDS Education and Training Centers from
around the US including Puerto Rico identified AIDS and palliative care providers
and persons living with HIV to participate in this study. All study participants (157
AIDS and palliative care providers and persons living with HIV) were provided with
the Canadian manual, Palliative Care: A Comprehensive Guide for the Care of
Persons With HIV Disease (1995) and using a structured questionnaire, evaluated
the manual. The same population then participated in one of the 15 focus groups.

In addition, an "Expert panel" independently reviewed these same materials.
Results: There were no significant differences between AIDS and palliative
care experts' assessments and those participating in the 15 focus groups. All
groups considered the Canadian palliative care manual to be useful in the US
even though it was developed for use in Canada. All groups felt that a US manual
should be developed. Nearly all of the topics in the manual were considered
essential by US providers. All groups agreed that topics dealing with women's is
sues, children, complementary therapies, substance use, and legal issues should
be expanded.
Lessons Learned: This evaluation project indicated acceptance of palliative
care issues by providers of HIV care in the US even with the recent extensive
adoption of protease inhibitors, and shows that a document developed in Canada
for use within their system can be accepted by US AIDS providers, and that
palliative care and AIDS experts are in agreement with AIDS providers from
throughout the US regarding the importance of incorporating palliative care within
the spectrum of HIV care.
1224361 Potential role for decision analysis in end-of-life decision
making in HIV: AIDS-related Pneumocystis carinii
pneumonia (PCP) and acute respiratory failure (ARF)
David Forrest1, A. Schilder2, J.S.G. Montaner3. 1 Rm 667, St Paul's Hospital,
1081 Burrard Street Vancouver, British Columbia; 2BC Centre fo Excellence in
HIV/AIDS Vancouver BC; 3Canadian HIV Trials, Network, Pacific Region
Vancouver BC, Canada
Objectives: To assess the potential role of decision analysis in combination with
prognostic information in decision making about ICU support of patients with
AIDS-related PCP and ARF.
Methods: A scenario of ARF due to PCP was designed and presented to
a subject in order to derive values (utilities) of different outcomes. 4 outcomes
were considered: survival to hospital discharge (SURV) and death in hospital
(NOSURV) with ICU support (ICU) or without it (NOICU). Outcomes were ranked
by the subject in order of preference and utilities (U) derived by standard gamble.
Probabilities (P) of each outcome were derived from data collected from 1991-96
at our institution. Analysis was performed using computer software (DATA ) and
1- and 2-way sensitivity analyses performed varying P and U of outcomes. Prognostic classification was based on previously derived combination of a modified
Multisystem Organ Failure score and duration of prior maximal therapy as low
(35%), intermediate (73%) and high (100%) probability of in-hospital mortality.
Results: P of SURVICU was 0.44 and P of SURVNOICU was estimated to be
0.03. U of SURVICU was 0.75 and U of SURVNOICU was 0.15. Expected utility
of the decision for ICU was 0.333 and for NOICU was 0.176. Thus, the decision
favoured is ICU support. Any P of SURVICU < 0.23 and any U of SURVICU
< 0.40 or U of NOSURVNOICU >0.31 favours NOICU. But as P of SURVICU
decreases, U of SURVICU has exponentially less effect and U of NOSURVNOICU
has greater impact on the favoured decision than U of SURVICU. Utilities are
more influential at intermediate probabilities. When combined with prognostic
classification, this favours choice of ICU for patients in the low mortality category
and no ICU support for those in the high mortality category, even without considering utilities of outcomes, but the favoured decision is dependent on utilities for
those in the intermediate category.
Conclusions: 1) Decision analysis can assist in patient-centered decision
making about ICU care in ARF due to PCP. 2) Probability of surviving ICU and
value placed on dying without ICU support seem to have a substantial impact on
the favoured decision. 3) Combination with prognostic classification indicates that
decisions are insensitive to valuing at extreme probabilities, but are influential at
intermediate probabilities.
122437 Approaches in palliative and comprehensive care for
PLWHIV/AIDS
Rowlands Gombe Lenya, A.N. Ngondo, A.M. Awuor. Tapwak, Nairobi, Kenya
With enormous health problems in AIDS disease all efforts should be made by
carers to apply the general principles of palliative medicine to the care of advanced
stage people with AIDS (PLWHIV/AIDS). All who care for PLWHIV/AIDS should
understand that the following issues are not optional for palliative care experts,
but are landmarks of a more appropriate philosophy of care: good symptoms
control, quality of life in advanced and terminal stages, response to physical,
emotional and spiritual needs, involvement of the patient in decision making,
support bereavement follow up for partners and families. A multiprofessional and
disciplinary approach to care for PLWHIV/AIDS is probably the best way to apply
the above mentioned basic principles. The main decision maker in hospitals or
community settings is traditionally the Doctor. In palliative care the case manager
should be chosen within different professionals for each single case. Home and
community care for PLWHIV/AIDS in Kenya is mandatory putting in consideration
the uptrend in infection levels.
S44*/224381 End of Life issues - "The Road to Geneva"
John Campbell1, L. Sherr2, B. Plumley3. 1UK Coalition, 250 Kennington Lane,
London SE1 SRD; 2Senior Lecturer Dep. of Primary Care, Royal Free Hospital,
London; 3Positive Action/Glaxo Wellcome, London, UK
Issue: Issues relating to and surrounding the end of life.
Project: This presentation will show the various processes, pieces of research

and methodology undertaken to engage a wide range of health care professionals, voluntary sector providers, statutory sector providers, people living with HIV
and AIDS and policy makers in research relating to End of Life issues. It will
explain the rational behind this piece of work as well as the various obstacles
encountered during the past four years research. We will show the achievements
in relation to not only the local and national policy but also examples of how this
work has subsequently developed and impacted beyond the United Kingdom.