JRSM >
Volume 94, Number 9 >
Pp. 479-482
National Institute of Nursing Research, National Institutes of Health, 31 Center Drive, Room 5B-05, Bethesda MD 20892-2178, USA
Correspondence to: Ann R Knebel
 | INTRODUCTION |
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 TOP INTRODUCTION END-OF-LIFE CARE FOR AIDS...PALLIATIVE CARE FOR AIDS...INITIATIVES SPONSORED BY THE...CONCLUSIONREFERENCES |
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| END-OF-LIFE CARE FOR AIDS IN THE USA |
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TOPINTRODUCTIONEND-OF-LIFE CARE FOR AIDS...PALLIATIVE CARE FOR AIDS...INITIATIVES SPONSORED BY THE...CONCLUSIONREFERENCES |
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The hospice philosophy rests on the assumption that dying is not only a natural part of life but also an event that can and should be as meaningful as life's other important events. Thus, hospice focuses on assisting patients in having a peaceful death, in which they are free of pain, are aware of what is happening to them and around them, and have as much control of unfolding events as they want.
With AIDS and many other life-threatening illnesses, medical breakthroughs are expanding the timeframe for palliative care and blurring the definition of end of life. The availability of advanced diagnostic techniques and treatments can sway the care of terminally ill AIDS patients in the direction of curative care, so the end-of-life experience is determined by the available technologies. Palliative care in the United States has yet to achieve wide acceptance within the American medical community, where treatment success is customarily measured in terms of lives saved or, in effect, deaths postponed. An approach that eases a patient's path towards an imminent death faces great difficulty in being recognized as legitimate, much less honourable. This limited view of palliative care stems partly from its ‘low-tech’ nature. Many people mistakenly believe that palliative care comes into play only after medicine has exhausted all the skills and technologies that might bring about a cure. Palliative care and medical research and technology are not mutually exclusive. Far from turning its back on the latest findings and state-of-the-art technology, good-quality palliative care draws on them in the determined pursuit of its own goal—a peaceful death. Yet, under certain circumstances, patients may receive radiotherapy, chemotherapy and surgery as part of their palliative care4.
Delivery of palliative care
The history and current drawbacks of hospice care in the USA have been
reviewed by Cassel and Demel (p.433). Coverage under the Medicare hospice
benefit includes visits by the hospice team, durable medical equipment, and
supplies. Medicare also provides coverage for bereavement counselling for the
family and caregivers for up to one year after death of the patient. Medicaid,
the federal programme of health coverage for indigent Americans, includes a
similar benefit for hospice services.
Data on the use of the Medicare and Medicaid hospice benefits by persons with AIDS are difficult to find. The AIDS diagnosis was not mentioned in a study of Medicare beneficiaries' costs and use of care in the last year of life5. One of the authors of that study suggests that the AIDS diagnosis is invisible in the database because deaths are usually coded according to immediate cause, such as pneumonia or malignant disease (Lunney J, personal communication).
For a patient to become eligible for Medicare coverage of hospice services, a physician must certify that the person is terminally ill and can be expected to live only for another six months or less. Obviously, this determination is not always easy to make with accuracy, and Congress has amended the original Medicare benefit to allow for extensions.
Many people who are eligible for Medicare and Medicaid hospice benefits still do not receive them or receive them only a few days before death. The usual explanation is that physicians tend to be overly optimistic about their patients' prognoses or are reluctant to dash their patients' hopes by delivering the six-months-or-less prognosis necessary for benefit eligibility. Of particular relevance to the delivery of palliative care to patients with AIDS is a series of studies showing that Hispanics and African Americans do not enter hospice programmes in significant numbers in the United States. In a study in New York, African Americans expressed a reluctance to sign advance directives and do-not-resuscitate (DNR) orders for fear that their care would be abandoned6.
The reluctance of patients to sign advance directives or agree to DNR orders may be due in part to the difficult nature of end-of-life conversations. In a study conducted in the north-west United States, persons with AIDS from non-white ethnic groups were less likely than non-Hispanic whites to report that they communicated with their primary care provider about end-of-life preferences7. People with low incomes, injection drug users and women with high-risk sex partners tended to report poor communication. In contrast, patients who had completed a living will or durable power of attorney for healthcare reported a better quality of communication. Satisfaction with care was strongly associated with quality of communication. The authors recommend that, since socioeconomic status and ethnicity are associated with both the occurrence and the quality of end-of-life communication, future interventions to improve communications about end-of-life care should consider the effect of these variables.
In a follow-up analysis, the same group assessed the reasons why patients and physicians do not talk about end-of-life care (Table 1)8. Non-white patients, injection drug users and women were more likely to feel that talking about death would bring it closer. The barriers and facilitators to end-of-life communication between persons with AIDS and their care-providers suggest that effective palliative care will demand end-of-life communications that focus on the needs of individuals as well as specific groups.
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| PALLIATIVE CARE FOR AIDS IN THE UK |
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TOPINTRODUCTIONEND-OF-LIFE CARE FOR AIDS...PALLIATIVE CARE FOR AIDS...INITIATIVES SPONSORED BY THE...CONCLUSIONREFERENCES |
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| Box 1 Domains of high-quality end-of-life care (from Ref.
10)
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Just what the needs of dying patients are was evaluated in a qualitative study of patients' perspectives of the elements that comprise good end-of-life care10. Three patient groups—dialysis patients, people with HIV infection and residents of long-term care facilities—identified domains that define high-quality end-of-life care (Box 1). These domains were similar to models derived from experts such as the American Geriatrics Society and the Institute of Medicine of the National Academy of Sciences in the US; however, the investigators highlight important differences between the patient-derived and the expert-derived domains. The patient-derived domains were simpler, more specific, not bound by established concepts such as ‘global quality of life’ and focused on outcomes.
Investigators in the UK also retrospectively examined the experience of a generic hospice providing care to patients with advanced HIV disease11. Only 26 patients were admitted during a 4-year period (0.85% of new admissions), supporting Guthrie's conclusion that hospitals will continue to be a major site of palliative care delivery. Referrals to hospice were primarily from hospitals (70%) rather than practitioners. The median length of stay for all patients referred to hospice was only 19 days—suggesting that, as in the US, referrals to hospice come late in the illness trajectory. Some of the symptoms experienced by the patients, such as weakness, immobility, and weight loss, were not amenable to interventions; others, such as pain, dyspnoea, and confusion, were. Services provided to patients reflected the expertise of the full multidisciplinary team. The authors conclude that generic hospices can offer important services to HIV patients who are at the end of life and that professionals need to consider referring these patients to such hospices.
In a prospective study by the Regional Infectious Disease Unit in Scotland,
health service and hospice use by HIV-infected individuals was evaluated for
1992-9312. Most of
the 513 patients (72%) had been infected through injection drug use. As
expected, patients with lower CD4 counts had more and longer hospitalizations.
Resource use in this Scottish centre was remarkably similar to that in other
British centres, despite the differences in patient populations (risk groups);
population variation was less important in determining resource use than was
clinical or immunological stage. Hospice use was twice as high among people
who were relatively well (pre-AIDS and CD4 count 
200/µL)—a
finding attributed by the authors to increased respite care, the effect of
risk group (injection drug users) and socioeconomic status. Seemingly, hospice
care can be useful early in the AIDS illness trajectory.
In summary, the research base is limited but we can identify some areas upon which to build future research. At present, good-quality end-of-life care can be defined by five domains identified by patients (see Box 1). The site of delivery of palliative/hospice care (home versus hospital) may be less important than implementation of the philosophy. Generic hospices, which have in the past concentrated on oncology patients, may improve outcomes for individuals dying with AIDS. In addition, hospice care should perhaps not be confined to the time identified as the end of life but should encompass a longer trajectory.
| INITIATIVES SPONSORED BY THE NATIONAL INSTITUTE OF NURSING RESEARCH |
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TOPINTRODUCTIONEND-OF-LIFE CARE FOR AIDS...PALLIATIVE CARE FOR AIDS...INITIATIVES SPONSORED BY THE...CONCLUSIONREFERENCES |
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Of some twenty-two research studies and seven training and career development awards now being funded, only a few focus on end-of-life issues in HIV/AIDS. To date we have received few applications on this topic. One study that we co-fund with the National Institute of Mental Health investigates the desire for death among terminally ill patients with AIDS. Another is looking at advance directives in patients with AIDS. We plan to continue building this area of science so that we can provide the best care for patients with HIV/AIDS as well as the data that policy organizations need to make informed decisions.
NINR is pursuing other aspects of end-of-life care and is a major sponsor of a new study by the Institute of Medicine on paediatric end-of-life issues. In addition, an NIH-wide research interest group on end-of-life issues was organized by NINR in October 2000, and one of its first actions was to host an open forum in which the NIH community and the general public could consider future directions for end-of-life research. Four end-of-life experts made presentations on technologies used at the end of life, cultural and ethnic dimensions, palliative care, and ethical issues. The forum was timed to build on momentum generated by a highly publicized documentary series, On Our Own Terms—Moyers on Dying, that was broadcast on public television across the US in September 2000.
| CONCLUSION |
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TOPINTRODUCTIONEND-OF-LIFE CARE FOR AIDS...PALLIATIVE CARE FOR AIDS...INITIATIVES SPONSORED BY THE...CONCLUSIONREFERENCES |
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| REFERENCES |
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TOPINTRODUCTIONEND-OF-LIFE CARE FOR AIDS...PALLIATIVE CARE FOR AIDS...INITIATIVES SPONSORED BY THE...CONCLUSIONREFERENCES |
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