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The title of this special issue of the JRSM could almost be reversed—HIV / AIDS in the age of palliative care. That we are in the age of HIV / AIDS requires no argument; and the age of palliative care began with the general acknowledgment that, for many conditions, supportive services must be offered in parallel with attempts at cure. All of us will eventually die, and more and more this will be from a chronic or progressive illness. Palliative care seeks neither to prolong nor hasten death, but to improve the quality of remaining life and support friends and family during care and into bereavement. HIV / AIDS fits well into this model, and our conference in December 2000 was based on the notion that both the UK and the USA could profit from sharing knowledge. The USA has much longer and wider experience with HIV / AIDS; the UK has pioneered the discipline of palliative care. A meeting of minds might generate useful ideas for programmes on both sides of the Atlantic.
HIV / AIDS presents dilemmas that are special in some ways. These spring from the unpredictability of the course of the illness, the fact that the disease is now increasing in the most disadvantaged sections of society (where access to care is already limited), the complexity and burden of current treatment, and the intricate networks of friends and families. Yet similar dilemmas arise in other conditions. In cancer, for example, new treatments are making the disease-course longer and less predictable; and in heart disease too. To help an individual to plan for a good life in such an illness, with its ever-present threat of deterioration and death, is challenging. How is communication to be handled in these circumstances? What are the risks and benefits of symptomatic and curative treatment? What models of services, and what education for staff, will best meet the palliative care needs of these people and their families?
Hospices and palliative care teams, offering inpatient care, home and hospital support, and now day-care, have developed to help look after patients who present special difficulties or who simply prefer hospice care. These services are multiprofessional, involving doctors, nurses, social workers, psychologists, the clergy, and other groups. During the late 1980s and early 1990s some hospices were tardy to accept patients with non-cancerous disease, including progressive HIV / AIDS. This is changing; but even in cancer only a modest proportion of patients come to the attention of specialist palliative care services or hospices. More education is needed. In the UK, palliative care has gained space in the undergraduate curriculum and palliative medicine is now a specialty within general medicine; in the USA the approach is to develop special examinations. However, these moves within the medical sector ought to be coupled with wider efforts to inform other professionals and the public about the philosophy and practice of palliative care. In the UK there is no organization with a specific remit to support education in this sphere; and the same is true of research, where traditional methods tend not to give the answers. The USA has produced highly innovative research on end-of-life care but has less to boast of in the broader context of palliative care. In both the UK and the USA, hospices began by being separate from other healthcare. In the USA, Medicare benefit (the insurance for old and disabled people) requires patients to choose either hospice or active treatment; moreover, most patients with HIV / AIDS do not qualify for Medicare, and constitute some of the 43 million people of the US who have no health insurance. In the UK, only 22% of the 220 inpatient hospices are managed by the National Health Service, and for the rest the NHS provides about one-third of their funding. These discrepancies lead to wide variation in the nature and remit of services across the country. Palliative care is an exception to the principle of universal coverage in the NHS. So questions of access arise in both countries.
Because these two disciplines are at different stages of evolution on either side of the Atlantic, they have much to learn from each other. If excellent models of palliative care emerged for patients with HIV / AIDS, they might be applicable in other conditions such as cancer and heart disease where effective treatments are banishing the old certainties. And vice versa. This issue of the JRSM contains position papers and the arguments for our summary statement. But we begin, on the next page, with some words from the founding mother of palliative medicine, Dame Cicely Saunders.