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Soon after St Christopher's Hospice began admitting patients in 1967, it became obvious that this new approach to end-of-life care should not be regarded as the model but rather as a demonstration of principles that could be interpreted variously in different cultures and settings. A paper, Essentials for a Hospice, emerged from staff discussions. Ten years later, in 1977, an Information Service was set up to deal with the growing volume of inquiries. This year, much enlarged, working with Help the Hospices and now named Hospice Information, the service celebrates its 25th birthday. After another ten years, in 1987, came the quarterly Hospice Bulletin, which quickly developed an international circulation. Directories were produced for various countries (now approaching one hundred), and fact sheets, continually updated, offered advice on specific matters. The most popular of the twenty existing fact sheets is Flying Home or on Holiday, written for people who wish to end their days in their home country or have that last holiday. Through personal contacts developed around the world, these people can be put in touch with the nearest hospice or palliative care team. And after yet another decade, the interweaving of contacts and ideas was marked by publication of Hospice on the International Scene1. This collection of essays set the seal on the idea that certain principles apply across a wide range of cultures and settings: in their concluding chapter Kastenbaum and Wilson declared, ‘All world cultures have traditional strengths that can contribute to the success of a palliative care programme’.
It was the anniversary of the Information Service that set me thinking about how the networks can be further expanded. The need for communication extends not only to healthcare workers but also to society in general. We have seen how, in many countries that have a tradition of concealing the truth as treatments fail, good care may lead to more honest communication and a happier end. Likewise, cultural obstacles to pain relief can be overcome, and Kastenbaum and Wilson see this as one of the greatest challenges. Despite the large volume of published work and the signal efforts of the World Health Organization, some professional workers and governments resist the availability of cheap and effective medication for fear it will lead to drug dependence or even lethal intervention.
Some challenges can be met by better dissemination of existing knowledge; there is a vast array of published work to be assessed and communicated. Others demand original research; large gaps in scientific knowledge wait to be filled. At St Christopher's we began by concentrating on malignant disease, but palliative care research now embraces conditions such as end-stage cardiac failure, multiple sclerosis, motorneuron disease, and the neuropathic pain of diabetes mellitus—to say nothing of the devastating epidemic of AIDS. The issues require examination in population as well as individual terms, and Jan Stjernsward, late of the WHO Centre for Cancer and Palliative Care, calls for a public-health approach2. All healthcare workers, he argues, should be trained in management of pain and other key symptoms; professionals also have a duty to educate the public in these matters.
As an example of how a large public programme can start from small beginnings, I can cite the work of Dr Anne Merriman in Uganda. A small charity financed largely by overseas donations enabled her to set up a local programme of care and education, Hospice Uganda. This still serves only the Kampala region; but, as a result of its work, the Ugandan Government has now classified palliative care with pain control as an essential service to be available throughout the country; liquid morphine must be available free of charge to patients with AIDS or cancer who require it.
Information allows choices—individually, nationally and internationally. Ultimately, the network should include everybody.