Enabling patients to die at home: hidden tensions and barriers

Abstract

The Labour Party manifesto of 2001 made a number of guarantees, including enabling patients more choice to die in their preferred place of care and their own homes. Later, The Strategy for End of Life Care (Department of Health (DH), 2008) emphasized that people’s needs, priorities and preferences for end-of-life care should be identified, documented, reviewed, respected and acted on wherever possible. The strategy also stressed the need to have 24/7 services in place to avoid unnecessary emergency admissions to hospital, enabling more people to live and die in their own homes or places of their choice. So, what has been done to meet these goals? We have seen the introduction of the Gold Standard Framework, and recently the Liverpool Care Pathway, into community care to enable more patients to die at home. While there may be desire for these ideas to succeed, it is not always clear whether the quality of dying in the home is significantly better than in institutions. Indeed, there are several ideas of surrounding quality of death, and more research is needed to look at patients’, relatives’ and health professionals’ perspectives. However, we know through evidence that most people wish to die at home, and yet most patients are still dying in institutions. Hidden tensions may help to explain this. For example, patients’ wishes may not be shared by family members who care for them at home. It is possible that patients who live alone at home may prefer to die in institutions surrounded by other people, albeit strangers. Families with young children might resist the idea of a relative dying at home as a way of protecting their children from death and dying experiences. While this may be intended as protective, it may foster the death-denying, taboo attitudes among generations as they grow to be part of society. It is not such a bad idea to introduce children to death and dying, as long as it is done sensitively and with a supporting adult. Poor prognostication, where family members are led to believe that the patient only has weeks or days to live when they are discharged, tends to add undue pressure on family carers. There also seems to be some hidden social pressure on relatives to treat ‘taking the dying patient home’ as the norm. In some cases, the patient is often rushed back into hospital. There are professionals who believe that hospital is best for dying patients, and may provide a biased plan of care, thereby introducing unintentional disregard for patients’ preferences. It is also possible that some patients who wish to die at home are discharged too late, and may even die in transit or on arrival back home. Would such patients be recorded as having died at home? I have yet to see a death certificate that records ambulance/in transit as a place of death. Even if the patient’s wish has been achieved, is it ethical right and justified? The other tension is that the difficulty of managing complex symptoms in the home may persuade professionals to keep patients in institutions, and risk the wrath of politicians who are overly keen to save costs. Indeed, keeping patients at home can be resource-intensive. Any well-intended care at home may be compromised and the quality of death undermined, leading to potential emotional turmoil for those left behind grieving. This may cast a negative portrayal of the community nurses delivering this care, but such a view would be misplaced, as the financial situation is beyond their control. It is often the case that community nurses are left to ‘pick up the pieces’, which makes it extremely important that they are well-equipped to understand loss and grief.