Dying matters: let’s talk about it

Consequences of not talking about and planning for death

Strategic plans for end of life care in England4 and Scotland5 argue that a lack of public openness about death may have negative consequences for quality of care at the end of life, including fear of the process of dying, lack of knowledge about how to request and access services, lack of openness between close family members, and isolation of the bereaved. A new national coalition6 with the same name as this article aims to raise public awareness and change behaviour associated with death, dying, and bereavement as one means of addressing these consequences. The work of the coalition is based in part on a comprehensive review of published research evidence,7 together with new market research about the concerns, needs, and beliefs of the general public about these issues and ways to raise public awareness.

Evidence about public attitudes

The review shows a preponderance of research about views on euthanasia and physician assisted suicide, often funded by “right to die” movements, but also featuring in large scale public opinion polls.8 9 These findings suggest public support for euthanasia has hovered between 60% and 80% since the mid 1970s on both sides of the Atlantic, with similar levels of support emerging for physician assisted suicide. A report of the 2005 British Social Attitude Survey10 shows that people make clear distinctions between the acceptability of assisted dying in different circumstances; 80% of respondents agreed that the law should allow voluntary euthanasia to be carried out by a doctor for someone with a painful, incurable, and terminal condition, but less than 50% agreed for cases where the illness is painful, but not terminal. Very few respondents supported family assisted suicide.9 In the United States, differences in response rates of more than 30% have been reported11 dependent on how questions are framed. Such nuances are not visible in surveys that present respondents with limited options for responses (such as yes or no) to short hypothetical scenarios.

The simple and high visibility messages of support for assisted dying could obscure the very considerable, but perhaps less sexy, findings about attitudes to other issues. Results of cross sectional surveys indicate that dying at “home” is a strong preference (whether this is the person’s home, a retirement complex, or care home), although hedged by worries about burden on care givers12 and by fears of dying alone.13 At the same time, most people are worried about how they would cope practically with caring for a close relative who was dying at home.14 A majority of people seem to welcome clinicians who are willing to start discussions in advance about place of care or medical treatment at the end of life.15 Interesting and persistent differences according to sociodemographic characteristics are found in survey data from many different countries. For example, some studies show that older people are less likely than younger ones to favour death at home, while women are more likely than men to prioritise quality over length of life.15 Other findings suggest that ethnic minority groups in Western countries tend to be less supportive of withdrawing or withholding life prolonging medical treatment at the end of life.16 These findings point to the effect of structural inequalities on experiences that shape attitudes.

Perhaps unsurprisingly, fairly uniform opinions are found about the elements comprising quality of care at the end of life, with relief from pain and other symptoms at the forefront, reflecting widespread concerns about the process of dying.17 A 2006 survey of the UK public suggested that a minority of people (34%) have talked to their friends or families about these issues or made any type of advance statement to inform their own end of life care.18 A survey of a representative sample of the general public in England, Wales, and Scotland19 commissioned by the National Coalition, repeated some aspects of the 2006 survey and had very similar findings. Although they were not talking about end of life care issues themselves, a substantial majority of respondents (88%) would favour the open disclosure by a clinician of a terminal prognosis. The most prevalent reason given by all respondents for not discussing issues, including a fifth of people aged over 75, was that “death seems a long way off.”

Qualitative research provides at least partial explanations of the trends seen in the quantitative research. For example, an interview study20 among older adults in the UK reports how older men and women tend to conform to gender stereotypes when discussing the issue of caregiver burden in end of life care. Older women are more likely to be concerned about burdening others during a final illness, while men express more self oriented views, including the desire to live longer. Qualitative research shows that attitudes about death develop against a backdrop of varied cultural and historical influences, are deeply affected by biographical and experiential influences, and are likely to change with time and across age groups.21

Ways of raising awareness and public involvement

Evidence from social marketing shows that “bottom up” approaches focusing on value to the user may provide a framework for designing programmes to raise public awareness of issues related to death and change behaviours.22 Another approach is to mobilise community involvement in end of life care projects as a matter of public health.23 In the United States, the Project on Death in America, a large scale programme to change the culture and character of dying, was funded by George Soros and located in the Open Society Institute between 1994 and 2003.24 It supported not only a conventional research and practice development programme but also arts projects to identify and convey meaning in facing illness, disability, and death, and community initiatives about bereavement and grief. Many of these involved thousands of people and have reportedly had a substantial lasting value although the effect is difficult to measure. From the outset of the project, raising public awareness was regarded as just as vital as the policy and practice developments needed to address seemingly intractable problems in the care of the dying in the United States.

Challenges for the future

For many of the 56 million people who die each year worldwide, death is associated with substantial but preventable suffering. When death is managed badly it leaves a scar that runs deep in our collective psyche and reinforces the tendency to turn away from any reminder of death. Shifting attitudinal barriers to the provision of excellent end of life care means eradicating ignorance among clinicians, patients, and the public about what can be achieved with modern palliative care and with careful proactive planning. Raising public knowledge of issues surrounding death, dying, and bereavement risks raising expectations we cannot yet meet or sending an unrealistic message that death can always be managed well. But such activity is a vital part of generating a sense of wider responsibility for the dying and promoting social justice for all those living towards the end of their life.