By Joachim Cohen and Luc Deliens
The quality of dying, and maintaining quality of life for those who are dying and those caring for them, is an inherent aspect of public health. In developed and developing societies everyone is affected by death and dying (either directly or indirectly, for instance in case of a dying relative) and it affects several aspects of their health and wellbeing. Adequate health promotion can improve the circumstances in which these people need to cope with death and dying and is thus susceptible to improve several aspects of health. Sadly, though the manner in which people die and the quality of dying has blatantly been neglected as a priority of public health, partly because death and dying, in all its aspects, have rather been regarded as antonymous to health and a failure of health care.
The one health care discipline that has been concerned with improving the quality of life of patients and their families facing the problems associated with life-threatening illness is palliative care. However, to date it has usually applied a very individual approach to the issue with the needs of the dying person as the primary concern and responsibilities towards the family and the support network also considered. Such an individual approach to the end of life may be sufficient and in fact most appropriate to meet the needs of the dying person and all other actors involved, but it may be inadequate to address the problems on a population level.
There is an urgent need for public health to adopt dying and palliative care in all its aspects as a major public health priority, for instance in national health strategies, and for palliative care to adopt a public health perspective to improve circumstances of dying at a population level.
The sociological justification for this is straightforward; first of all, ageing of the population will result in a relatively large group of older people, many of which will face certain health problems or care needs, which will confront societies with the public health challenge of organizing long term and end-of-life care for older patients.
With the number of deaths also on the rise (and expected to increase in the coming decades) an increasing number of people are affected by death in terms of informal caregiving and grieving.
Protecting the health and wellbeing of the population directly or indirectly involved with death and dying is a huge public health challenge. Currently, high quality end of life care is not yet available in most parts of the world, and in those countries where it is available it is not accessible or not initiated timely for all in need, independent of their disease, age, gender, socioeconomic, or ethnic background. Largely as a result of that, a large majority receives overly aggressive treatment until death or shortly before death, has undertreated psychological and physical symptoms at the end of life, and is not able to die in a place or manner that accords with their personal preferences.
There are pervasive cultural, attitudinal, structural, and financial barriers to the optimal accessibility of palliative or end of life care. Public health researchers and policy makers must identify these barriers and come up with solutions to overcome them in order to ensure a good death. This can involve several public health strategies such as:
- Societal monitoring of the quality of palliative care provision and its accessibility.
palliative care integration into acute and chronic care models
- Implementation of end-of-life practice guidelines based on culturally-sensitive quality indicators
- Improving communication and at and about the end of life and promoting models of advance care planning
- Guaranteeing access to adequate drugs (e.g. opiates) and treatment
- Development of good end-of-life care in long term care settings, in primary care, and in hospitals
A start can be made by developing a policy based on the premise that palliative care is a human right and hence all people have equal rights to access it. To be successful in this the current understandings of end of life care need to be expanded from a clinical to a public health perspective.
Joachim Cohen and Luc Deliens are the editors of A Public Health Perspective on End of Life Care.
Joachim Cohen, health scientist and medical sociologist, is a professor and senior researcher of the End-of-Life Care Research Group of Ghent University & Vrije Universiteit Brussel and a postdoctoral fellow of the Research Foundation Flanders. He has published 50 peer reviewed articles on end-of-life and palliative care and was awarded for his research with the Prix Elisabeth Kubler-Ross pour jeune chercheur and the Young Inverstigator Award of the European Association for Palliative Care.
Luc Deliens is a professor of public health and palliative care at the Department of Public and Occupational Health, EMGO Institute VU medical center and is chair of the End-of-Life Care Research Group of Ghent University & Vrije Universiteit Brussel. He has published over 150 peer reviewed articles on end-of-life and palliative care and has received several scientific awards. He is also Co-Chair of the Research Network of the European Association for Palliative Care (EAPC).