Читать книгу The Moral State We’re In - Julia Neuberger - Страница 16

Older people who are not dying of cancer, motor neurone disease, or AIDS/HIV often fail to benefit from Britain’s superb palliative care services. Yet death comes in many ways: we may die of heart disease, be it congestive heart failure or simply a fatal coronary infarct. We may die after being disabled in a severe way by a stroke, or by end-stage renal disease. We may have chronic obstructive pulmonary disease. We may have dementia. We may die of a single cause, or a combination of many, or we may simply die of old age. Yet the palliative care services are often not there for us, and whether we get access to them depends on the area in which we live.

With little trouble, and at relatively little cost, it should be possible to provide palliative care to people who are dying of whatever condition, in whatever setting. People dying in a nursing home should still get the specialist care that they would have received had they still been in their own homes. People dying in a care home should be just as entitled to a visit from the palliative care team as those who are living with a son or a daughter. If we could ensure that, as well as providing proper palliative care for those who have the misfortune to be dying in an acute hospital, some part of the fear of dying might be assuaged. Some principles could be established covering, for instance, privacy, good physical care and proper pain relief, a guarantee of not dying alone, choice of place of death, treatment choices (advance directives again), and who should be present when death finally comes. These principles would provide a kind of guarantee of respect for the person’s dignity and autonomy, as well as guaranteeing diminution of suffering, and respect for their autonomy, so that, insofar as is possible, people get the services they want when they are dying.

In the working paper of the health and social services group for Age Concern’s Millennium Debate of the Age,* which I chaired in the late 1990s, we identified twelve principles of a good death:

To know when death is coming and to understand what can be expected

To be able to retain control of what happens

To be afforded dignity and privacy

To have control over pain relief and other symptom control

To have choice and control over where death occurs (at home or elsewhere)

To have access to information and expertise of whatever kind is necessary

To have access to any spiritual or emotional support required

To have access to hospice care in any location, not only in hospital

To have control over who is present and who shares the end

To be able to issue advance directives which ensure wishes are respected

To have time to say goodbye, and control over other aspects of timing

To be able to leave when it is time to go, and not have life prolonged pointlessly

All these principles would make a real difference if they were generally implemented. In practice, it would not always be possible to carry out all of them for every person. But the hope and expectation that they would be put into practice would help dissipate the fear of dying.