Quality care at the end of lifeBMJ 2002; 324 doi: http://dx.doi.org/10.1136/bmj.324.7349.1291 (Published 01 June 2002) Cite this as: BMJ 2002;324:1291
Should be recognised as a global problem for public health and health systems
- Peter A Singer, Sun Life Financial chair in bioethics and director (, )
- Kerry W Bowman, bioethicist
- University of Toronto Joint Centre for Bioethics, University of Toronto, 88 College Street, Toronto, Ontario, M5G 1L4, Canada
- Mount Sinai Hospital and University of Toronto Joint Centre for Bioethics
Worldwide, 56 million people die each year, 85% of these in developing countries. 1 2 Yet little is known about the quality of care they receive at the end of their lives. The movement for improving the quality of care at the end of life is primarily focused on industrialised countries. Until it is seen as a global problem for public health and health systems, efforts to improve it will not make much impact in the world.
Quality of care at the end of life is a global public health problem because of the large number of people involved. If each death affects five other people in terms of giving informal care and grieving relatives and friends, the total number of people affected each year by end of life care is about 300 million, or 5% of the world's population.
Some of the interventions that could be used to improve care are in the realm of public health. These include large scale, culturally specific, educational programmes for public health workers and the public; population based strategies to destigmatise death and put it into the mainstream of health systems; and changes in social policies in relation to care for orphans.
Improving care at the end of life will require research in public health. Of the many papers published on care at the end of life in the past decade, only a few have dealt with this problem in developing countries.
Care at the end of life is a global problem for health systems because most people die in hospitals—at least in some countries3; research in palliative care has involved the organisation and delivery of palliative care services4; techniques such as rapid cycle change have been applied to improve the quality of care at the end of life; and accountability of managers of health systems and healthcare professionals is an important part of the solution.
More fundamentally, however, care at the end of life is a problem for health systems because improving its quality will rely on health information. Information about quality is recognised as a central concern of the health system, as exemplified by the report card movement. We have never seen information on care at the end of life on quality report cards. Why? Just as clinicians once put dying patients in the room at the end of the hall and never made rounds on them, health policy makers have kept the issue of care at the end of life outside the mainstream of their concerns.
There are data on mortality and other measures of quality of care, but there is no information on quality indicators for end of life care in the statistical appendices of the Word Health Organization's world health reports. There were also no measures related to end of life care among the performance measures of health systems in the world health report for 2000.
Even in Canada, which is recognised as a leader in health information, no information is available on the quality of care at the end of life for the 222 000 Canadians who die each year. In 2000 the Canadian senate recommended that the Canadian Institute for Health Information develop indicators for end of life care.5 To our knowledge this is the first such recommendation, but it has not yet been implemented.
Simply applying Western perspectives on end of life care to developing nations is unrealistic and apt to fail. Any effort to improve the quality of care at the end of life in developing countries must be culturally based and include people from these countries. For example, traditional healers may serve as effective champions of care at the end of life in some settings because they are closely connected with shared values and community beliefs.
We live in a world where the life expectancy is about 80 years and rising for people in many developed countries and about 40 years and probably falling for people in some developing countries.6 We have been asked, “In such an unjust world, where apparently the lives of many people in developing countries do not matter, why should their deaths?” This sets up a false dichotomy. If someone is condemned to a premature death because of the injustice of global health inequality, it is doubly unjust for that person to be condemned to an agonising death racked by preventable pain.
We can improve the quality of care at the end of life in the world by (1) Recognising care at the end of life as a global problem for public health and health systems—The very conceptualisation of care at the end of life as a problem for global public health and health systems brings this issue into the mainstream of global public health. It then also falls under the scope of the WHO's initiatives on the performance of health systems.
(2) Capacity strengthening—We have recently outlined a vision for strengthening capacity in global health ethics, and this too should include attention to care at the end of life.7 The Open Society Institute has made a major impact on capacity for addressing care at the end of life in the United States through its project on death in America. The time is right for a global effort at strengthening capacity in care at the end of life by creating a project on death in the world.
(3) Information strategies—No national health system to our knowledge systematically collects information on the quality of care at the end of life of its citizens. Countries with well developed health information structures, such as Canada, could make an important contribution. Case studies of developing countries would provide useful evidence on which to base any global effort to improve end of life care. We will know that the problem of care at the end of life has truly been globalised when the WHO devotes a world health report to care at the end of life and when indicators for such care are routinely included in its annual indicators of the performance of health systems.
PS is supported in part by an investigator award from the Canadian Institutes of Health Research. We are grateful to Meg Droney for research assistance, Susan Murley for editorial assistance, and Eduardo Bruera, Miriam Hirschfeld, James Tulsky, and an anonymous reviewer for providing comments on an earlier draft of this article. A longer version of this paper was written as a working paper at the request of WHO.