Upstream from death.

Abstract

For every generation, death presents new dilemmas. In western industrialized nations today, a tendency to believe we will live forever is compounded by limited direct experience about death and dying. Also, in the UK, healthcare at the end of life is delivered by a system designed for a quite different set of demographic, medical and social realities than those we currently face. We are dying for longer, with less social support and with higher expectations than ever before. With an ageing population, it is the elderly who will experience the greatest impact of the mismatches between needs and resources, and between expectations and realities. In his article ‘What happens when elderly people die?’ (p. 536) Dr Kafetz explores the nature of dying and bereavement amongst elderly people and their families and questions the received wisdom about dying derived from the experience of palliative care over the past few decades1. Certainly, a model of care developed mainly for people with advanced cancer should not be applied uncritically to other groups with differing needs. If we want to improve the experience of dying—and we all have a vested interest in doing so—then we need to broaden the focus beyond palliative care. A major obstacle to satisfactory end-of-life care is the mismatch between expectations and reality. Advances in healthcare over the past century have provided reassurance that disease can often be controlled and death delayed. Our society places a high premium on control. Positive thinking is encouraged, often with the message that adversity can be overcome if only we have the right attitude. Until we encounter progressive illness at close quarters we need not confront the shadow side to this myth, the equation of dying and death with failure. When the disease evades control, either the myth must be questioned or someone must be blamed—the patient (unkindly) or the healthcare team (often unfairly). Expectations of palliative care are also very high. Palliative care, from its origins in the hospice movement, has been immensely successful in improving the quality of life and death for patients with terminal cancer. However, it cannot control everything. Fatigue, bodily discharges and malodours continue to be particularly troublesome. It is debatable whether hospices have deliberately sequestered these aspects of suffering within their walls2, or whether a dying-denying public has chosen not to know or enquire about these aspects of dying with their accompanying losses of dignity and selfhood. The nature of inpatient hospice units has evolved with time. Many hospices have become specialist palliative care units, offering short inpatient admissions for assessment, symptom management and psychological support, and terminal care for those with complex needs. One of the goals of palliative care is to enable people to die in the place of their choosing—usually home. At home, terminal care is provided by families and friends, general practitioners, district nurses and social care providers. Services are often stretched. An easy death at home requires forethought and a clear management plan, including a decision that further hospital treatment will not augment comfort or life expectancy, or offer any other benefits to the patient. Such decisions are most difficult when the patient has a chronic medical condition such as cardiac, pulmonary or renal disease in which disease-modifying treatment is the mainstay of symptom management. Cancer is becoming more of a chronic disease. In the UK nearly a quarter of occupied hospital bed days are accounted for by patients in the last year of their life and nearly two-thirds of all deaths are in hospital3. What can be done to improve the care of patients dying in hospital? Healthcare culture may be influenced by the example set by senior nursing and medical staff4. Care pathways for the dying may be effective: they are designed for use in the last forty-eight hours of life and can be adapted to meet the needs of most patients with advanced progressive disease—not least by helping to prevent a vacuum in a cure-dominated environment5. Systematic reviews show that hospital palliative care teams do improve the care of the dying6. But much more could be done to improve the experience for patients and relatives. We also need to interpret cardiopulmonary resuscitation policies sensitively to meet the needs of dying patients. The more we learn about the art of prognostication and about how to communicate with patients in end-of-life decision-making, the more we can help patients accept and plan for their deaths. Much of the suffering and indignity of dying described by Dr Kafetz happens upstream from the terminal phase. Improvement of care here will require major political and public health initiatives, including public education7, the adequate resourcing of community services8, and extension of the quality and range of sheltered housing, residential care and nursing care.