Spotlight Spotlight: Palliative Care Beyond Cancer

Dying matters: let’s talk about it

BMJ 2010; 341 doi: http://dx.doi.org/10.1136/bmj.c4860 (Published 16 September 2010) Cite this as: BMJ 2010;341:c4860
  1. Jane E Seymour, Sue Ryder Care professor of palliative and end of life studies1,
  2. Jeff French, professor of social marketing and chief executive2,
  3. Eve Richardson, chief executive 3
  1. 1School of Nursing, Midwifery, and Physiotherapy, University of Nottingham, Nottingham NG7 2HA
  2. 2Strategic Social Marketing, Liphook, Guildford GU30 7QW
  3. 3National Council for Palliative Care, London N7 9AS
  1. Correspondence to: jane.seymour{at}nottingham.ac.uk
  • Accepted 15 May 2010

As death has become less common in our daily lives, it has become harder to consider our own mortality or that of those close to us. Lack of openness about death has negative consequences for the quality of care provided to the dying and bereaved. Eradicating ignorance about what can be achieved with modern palliative care and encouraging dialogue about end of life care issues are important means of changing attitudes.

Awareness of our own mortality is a human characteristic. Arguably, life would have little meaning without our knowledge and experience of inevitable loss, death, and bereavement. But while in some ways our society is obsessed with death—with reports of violent, sudden, and unexpected death paraded across our media every day—it is still very difficult to talk about this one shared certainty in terms that relate to our own deaths or those of people close to us. Across the past century there has been a movement away from using the “sacred canopy” of religion1 to make sense of death and to embrace its presence in life. Instead, the defence of health, youth, and vigour against the enemy of death has become a “lifelong labour”2 for many. On the rare occasions when death and dying are discussed, the language used is most often rooted in the discourse of individualism and control of personal destiny. This perspective does not fit well with the needs and daily experiences of people approaching the end of life, such as those in advanced old age, who may find they wish or need to entrust their care to others. Nor does it reflect the finely balanced dilemmas patients, families, and clinicians face in dealing with the physical, ethical, emotional, and existential problems of serious illness. The increasingly rare designation of any illness as terminal complicates matters and perhaps explains why complaints about lack of preparation and communication surrounding death are common among the bereaved.3

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.

Notes

Cite this as: BMJ 2010;341:c4860

Footnotes

  • doi:10.1136/bmj.c4863
  • doi:10.1136/bmj.c4862
  • doi:10.1136/bmj.c4861
  • doi:10.1136/bmj.c4859
  • Part of the costs of producing the BMJ supplement in which this article appeared were met by the British Heart Foundation. The article was commissioned and peer reviewed according to the BMJ’s usual process.

  • Contributors and sources: JS wrote the first draft of this paper, drawing on preliminary findings from a review of research on public attitudes to death, dying, and bereavement commissioned by the National Council for Palliative Care and the National End of Life Care Programme and a survey of UK public attitudes commissioned by the National Coalition Dying Matters: Let’s Talk About It, to which all three authors belong. JF and ER provided comments on the first and subsequent drafts of this paper. All three authors agreed the final version. JS is guarantor.

  • Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: JS had support from the National Council for Palliative Care and the National End of Life Care Programme for the submitted work; JF is a consultant to the Dying Matters coalition; no other relationships or activities that could appear to have influenced the submitted work.

References