History
Palliative Care had its origins in the 1960s in the UK with the emergence of the hospice movement led by Dame Cicely Saunders. It started with research at St Joseph's Hospice, where Dame Cicely was allowed to experiment by giving regular dosages of drugs to four patients. This apparently simple practice was a novel approach at the time, observed with some scepticism. However, scepticism soon turned to interest as the results showed a marked improvement in the quality of these patients' lives. By the time Dame Cicely left St Joseph's, she had observed and documented over 1,000 cases of patients dying of cancer. Her scrupulous records provide the basis of this fundamental area of research(1).
Dame Cicely's pioneering work was soon followed by others and, in 1963, Professor John Hinton recognized the physical and mental distress of dying in the ward of a London teaching hospital (2). He later developed groundbreaking work on the progression of the awareness and acceptance of dying over time - one of the few longitudinal studies conducted with terminally ill patients and their families (3). His research revealed different patterns of progression, influential factors such as depression and anxiety, and the relationship between patients and their relatives' awareness and acceptance.
In the early 1970s, palliative care in the UK saw its first large-scale epidemiological survey, led by Professor Ann Cartwright and her team (4). Drawing from a random sample of deaths in 1969, she reported the experiences of 785 patients and their families in the last year of life, which would later be compared with those of 639 patients in 1987 (5). In this comparative study, several changes were recognized: increasingly people were dying alone, older and with prolonged and unpleasant symptoms, in institutional and hospital settings, with improved home help though with fewer home visits, and with a greater awareness of the disease and dying.
Current state of knowledge and the challenges ahead
Research on the dying, their families and end-of-life care has continued despite the numerous challenges, mainly in terms of study design and ethical issues (6).
Researchers are faced with a number of complications such as patients experiencing a constellation of symptoms, the difficulty of conducting randomised controlled trials and the thin line between benefit and risk for patients and families.
The volume of research in palliative care has grown dramatically in the last 15 years. Linda George systematically reviewed the literature in 2002 and found 1,000 articles on end-of-life issues, of which approximately 400 were empirical studies (7). Many of these are of excellent quality but improvements in methodology can still be made - grounding studies in conceptual frameworks, for example, carrying out more longitudinal studies and developing high-quality sampling strategies.
There remain important areas in the field of palliative care that have yet to be adequately addressed (8). Under-researched subjects include barriers to accessing palliative care, supportive services, psychosocial and spiritual issues, and the care of special groups such as older people and those from different cultures (9). The challenge for palliative care research is not only to pose important research questions but also to design studies, develop instruments and employ realistic but scientifically sound research designs that will answer those questions (10).
Notwithstanding the development of research into palliative care over the last four decades, the evidence base for much of what is done in clinical practice remains relatively sparse compared with more established medical specialities. This is highlighted by the paucity of data, which slows down the integration of research results into the practice of end-of-life care (8).
Despite being an expanding field, funding is limited and has been largely contingent on the pharmaceutical industry in pursuit of approval for analgesics and other agents to address symptom concerns (10). Worryingly, there is a lack of funding by foundations and government agencies. Only a small share of cancer research funding is devoted to palliative care in the UK - 0.18%, compared to 0.9% in the US (9) - though each death potentially affects the well-being of an average of five other people (11).
Reference List
Du Boulay S. Cicely Saunders. London : Hodder & Stoughton, 1993.
Hinton J. The physical and mental distress of the dying. Quarterly Journal of Medicine 1963; 32:1-21.
Hinton J. The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliative Medicine 13(1):19-35, 1999.
Cartwright A, Hockey L, Anderson JL. Life before death. London ; Boston : Routledge and Kegan Paul, 1973.
Cartwright A. Changes in life and care in the year before death 1969-1987. Journal of Public Health Medicine 13(2):81-7, 1991.
Grande GE, Todd CJ. Why are trials in palliative care so difficult?. [Review] [39 refs]. Palliative Medicine 14(1):69-74, 2000.
George LK. Research design in end-of-life research: state of science.[see comment]. [Review] [98 refs]. Gerontologist 42 Spec No 3:86-98, 2002.
Penrod JD, Morrison RS. Challenges for palliative care research. Journal of Palliative Medicine 7(3):398-402, 2004.
World Health Organization. Palliative care: the solid facts. http://www.euro.who.int . 2004. 24-11-2004.
Ferrell B. Palliative care research: the need to construct paradigms. Journal of Palliative Medicine 7(3):408-10, 2004.
Standing Senate Committee on Social Affairs SaT. Quality End-of-Life Care: The Right of Every Canadian: final report of the subcommittee to update Of Life and Death. 2000. Ottawa, Senate of Canada
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