The evolution of palliative care

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Abstract

An encounter with one patient in 1948 was the catalyst for the Hospice Movement. The challenge to undertake appropriate pain and symptom control together with experience in further listening to patients in the small number of homes especially planned for dying people, finally came together during the 1960s as the impetus for the first modern hospice which opened in 1967. Since then, palliative care has been developing worldwide and has shown that the basic principles demonstrated in those early years can be interpreted in various cultures and with different levels of resources. Symptom control by a multi-professional team backed by research and education of both professionals and public has spread both into home care and into general hospitals. The family is seen as the unit of care as it finds its own potential, searches for meaning and makes the achievements possible at the end of life.

Introduction

No presentation of history can be totally bias free and this talk on the evolution of palliative care comes very much from my own experience of the beginning and the ongoing development of the Movement. What began as a response to one patient, gathered input from history, from many articles and anecdotes, as well as from patients, families, professionals and volunteers from around the world. The process may be compared to the assembling of a kaleidoscope, the putting together of a number of demands which were not previously related, giving a shake and finding that they came down in a new pattern or synthesis. So St. Christopher’s Hospice was put together over years of intensive thought and experience and from its opening in 1967 integrated into a community of 1.5 million in the outer London Boroughs. Subsequent teams have copied and modified this pattern as they have grown out of their different circumstances and cultures. Those who travel and attend national and international congresses find that they all reflect a recognizable specialty or movement, wherever that may be.

Section snippets

Small beginnings

The beginning of it all came from a patient, a Polish Jew from Warsaw, who died of cancer of the rectum in 1948 aged 40. He was in a big London teaching hospital and during many visits we discussed somewhere which would help people in his predicament; somewhere more suited to the need for symptom control and, above all, where there was a chance to come to terms with the situation more easily than in a busy surgical ward.

Two phrases he used in our long talks formed for me the challenge I came to

Total pain

Tape recorded conversations and the descriptive studies of the hundreds of patients showed that the two myths so aptly described recently by Professor Patrick Wall in an editorial in the journal Pain could be disproved: ‘The valiant development of palliative care has succeeded in the face of two common myths which were shared in common by patients and doctors… the myths were swept aside by precise and convincing observations. One myth was that narcotic medication inevitably replaced the misery

Controlled studies

Twycross compared morphine and diamorphine (heroin) in a double blind within patient cross-over study in St. Christopher’s in the 1970s and found no clinically observable difference between the two drugs. He also reported the absence of tolerance and drug dependence [4]. Clinical and evaluative studies have continued, always balanced with the development of patient care. As Peabody wrote, ‘The treatment of a disease may be entirely impersonal; the care of a patient must be completely personal’

Basic principles

These may be defined as follows. Symptom control comes first even though it should not stand alone if we are to meet the whole needs of a patient and family. A postcard of a many headed dragon in a medieval tapestry was presented by a patient with motor neurone disease who said, ‘That’s what my illness feels like to me’. We need to analyse and address all these many heads as far as we can.

This can be converted to a second dragon picture drawn by a patient with cancer about 10 days before her

Conclusion

Further evolution depends not only on the dynamism of early pioneers but on the ability of palliative care to hold its position between specialist teams with continually developing expertise and the general challenge to all that patients should have skilled attention to the end of their lives, whatever their disease or disability. The focus on cancer and a few other diagnoses, notably motor neurone disease and HIV/AIDS, enabled much of the early research to be carried out and published. These

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