Most of us never think about death until it is upon us. Even then, we can become absorbed by the minutia the funeral arrangements, coffin selection and flowers instead of the bigger picture of how we die. Although death is mostly a family affair, it is increasingly hidden from public view. As people become less familiar with death, they may mistakenly assume that terminally ill people are better cared for in a hospital.
There may be some good reasons for dying in hospital for instance, if you wish to donate some of your organs. But for most, a hospital death does not equal a “good death”.
The majority of people die in hospital, in spite of the preferences they may have, because the place of death is mediated not by what is best but by what local services are available (Pub Health Rep, 1979; 94: 522-7). In contrast to those who die at home, those in hospital tend to die among strangers (J Med Ethics, 1983; 9: 158-61).
For some, control of death facing it with a clear mind, among loved ones and away from the sterile, drug dependent culture of hospitals and doctors is part of taking control of life. It also improves the quality of the death experience for those left behind (Postgrad Med, 1979; 65: 197-200).
In one study, researchers compared the attitudes and adjustment of 24 families who participated in a Home Care Programme for terminally ill children with 13 similar families whose children had died in hospital. Parents of the children receiving hospital care were more anxious, depressed and defensive. They had more trouble sleeping and suffered relationship problems. Siblings of hospital care children were more inhibited, withdrawn and fearful than their counterparts in the home care scheme (Ped, 1983; 71: 743-7).
A complex set of problems stands in the way of having a “good death”. For instance, the American Medical Association acknowledges that physicians, obsessively schooled in the science of “curing” and often worried about malpractice suits, concentrate exclusively on keeping people alive, no matter what state they’re in. Consequently, they know little or nothing about how to provide end of life care. Medical textbooks rarely include such information (Ann Intern Med, 1999; 129: 82-6).
While not constrained by insurers, doctors in the UK are also determined to prolong life at all costs, ignoring trivialities such as patient preference and quality of life. In Britain, we do have a Care in the Community Programme, which provides home medical and social services. But while anyone, theoretically, can ask for an assessment for suitability for this type of care, there are hidden dangers. For instance, they will have to be tested and, if they accept the care, their homes may be at risk since they will be liable to community charges.
Given this, it may or may not be surprising to hear that there is now a groundswell of support in many countries for a more natural approach to death. One of the most useful resources in this respect is London’s Natural Death Centre. In their recently revised book, The New Natural Death Handbook (Available from: 2 Heber Road, London, NW2 6AA, price £11.65 including p&p, cheques to NDC), you can find advice about preparing for dying, meaningful grieving, death at home and practical home care, but also how to arrange an inexpensive, green, family oriented funeral, and where to buy a simple cardboard coffin or how to make your own.
Even the dying have rights. For instance, few patients realise that even if they are seriously ill or dying they have the right to refuse any form of treatment and to check out of hospital at any time to return home. You may be asked, however, to sign a form which states that you have checked out against medical advice.
If your condition is deteriorating to such a degree that you can foresee a time when you may not be able to make your own decisions, the presence of an Advance Directive, or Living Will a document outlining what care you do and do not want and how you would like to die becomes a very important part of dying naturally. While you cannot request active euthanasia, you can indicate which treatment(s) you wish to be withheld and whether you wish to be taken home to die. Advance directives are legally binding documents, and a copy should be lodged with your GP. Case law exists in both the US and UK regarding the autonomy of the dying person to make such a directive, and any doctor who forces treatment on a patient against his wishes is guilty of assault.
Once home, support is essential. Our unfamiliarity with death means that few family members feel confident to deal independently with the care of a dying relative. Affiliated with the Natural Death Centre is the Befriending Network, a charitable project set up in 1994 which aims to improve the quality of life for those with terminal or life threatening diseases. A befriender may meet weekly with the dying person and their family members to talk, run errands, give a massage or provide any other service which the family needs. The befriender can also mediate between the dying person and the local health and social, and be a source of information about any alternatives the family may be interested in pursuing. Befriending Network is at the moment active in Oxford (01865 316200) and London (0181 208 2853), but is currently engaged in training volunteers in other areas.
These days, how you die is completely up to you.