PALLIATIVE CARE
Quality end-of-life care as a public health problem Brian Nyatanga
Senior Lecturer in Allied Professional Studies and Lead for The Centre for Palliative Care, University of Worcester
I
t has now been clearly documented that most people prefer to die in their own homes (Higginson et al, 2013). Many argue that affording people this request will help to improve their quality of life. But how does this happen and how do we measure it—and from whose perspective? With each death, there is a possibility that another 12 or more people will be emotionally affected through the relationships they have formed with the person who has died. By extension, this one death may also affect informal carers and health professionals caring for the patient. If we accept this, then it is possible and logical to conclude that this scenario is repeated 500 000 times a year with each death that occurs in England and Wales, and 56 million times with each death that occurs around the world (World Health Organization, 2007). One death affects a lot of people, and we need to improve the way that people die and how we care for the grieving friends and families. The scenario of a death and its impact equates quality end-of-life care with any global public health problem that affects a lot of people, and therefore needs improvements to be made. In terms of public health, quality end-of-life care has similar requirements to diseases like HIV, tuberculosis, cancer, malaria and now the Ebola virus, since all affect a lot of people. Yet, while it is clear that the diseases mentioned here are easily considered public health problems, it is not so easy to conceptualise death and quality end-of-life care as public health problems. The difference here arguably relates to our social construction of the two phenomena rather than there being any real intrinsic difference between them. Furthermore, not recognising death and quality end-of-life care as public health problems could support the claim made by Nyatanga (2008) that our death-denying culture forbids us to see it any other way. As a result, it also helps to explain why it is so ‘difficult’ to die in modern society (Nyatanga, 2008).
© 2014 MA Healthcare Ltd
The challenges In order to improve end-of-life care, there is a need to ensure our health-care systems are functional across all settings and ready to meet the challenges of modern health and illness. There is a need for broad-based educational programmes that will equip professionals who care for patients in their own homes to understand the requirements of people in the dying phase. There is a real need to inform practice with evidence from research in order to provide the best care available.When giving end-of-life care it is also important to care for those people deemed important to the patient. Furthermore, the foregoing discussion shows that the same is needed to address and improve public health problems in general. A shift in our
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view of quality end-of-life care is required to facilitate the perception that it is a public health problem too.The outcomes of quality end-of-life care and global public health are different, but the processes involved are similar.
Improving end-of-life care It is evident that quality end-of-life care means different things to different people, and it is important that any attempts to improve end-of-life care are sensitive to cultural contexts, which, by their nature, suggest people have a tendency to perceive the same thing (e.g. prostate cancer) in different ways. Planners and policy-makers are crucially important in this respect to ensure that services can respond appropriately to the diverse needs of a multicultural society. It is even more important to understand patients’ needs fully through research evidence, but it seems that there is a relative apathy towards research studies in palliative care. There are several possible explanations for this: funders preferring large-scale studies in order to generalise findings; ethics committee preferences, palliative care being seen as a sensitive area with participants considered vulnerable and ‘gatekeepers’ preferring service evaluations; and the bias inherent in the ‘90/10 gap’ in health studies (Commission for Health Care Research, 1990).The 90/10 gap suggests that 90% of health-care research is undertaken on diseases that contribute to 10% of the problems in palliative care patients (CHCR, 1990).
Conclusion There is still hope, and health professionals and community nurses in particular can use a number of existing quality-of-life measurement scales to determine how ‘their’ patients are feeling about their specific illness. On the other hand, researchers should pursue more research studies that tap into the subjective world of patients entering the end-of-life care phase. In this way, further understanding of patient needs is achieved, and illness and dying episodes might not have such devastating impact on the wellbeing of those important to the patient. Although it is still right to view quality end-of-life care as a public health problem, its impact will be different from most public health diseases. BJCN Commission for Health Care Research (1990) Health Research: Essential Link to Equity in Development. Oxford University Press, Oxford Higginson IJ, Sarmento VP, Calanzani N, Hamid Benalia H, Gomes B (2013) Dying at home—is it better? A narrative appraisal of the state of the science. Palliat Med 27(10): 918–24 Nyatanga B (2008) Why Is It So Difficult to Die? Quay Books, London World Health Organization (2007) World Health Statistics. WHO, Geneva. http:// tinyurl.com/nfgzsly (accessed 25 September 2014)
British Journal of Community Nursing December 2014 Vol 19, No 12
619
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on December 6, 2015. For personal use only. No other uses without permission. . All rights res
Quality end-of-life care as a public health problem Brian Nyatanga
Senior Lecturer in Allied Professional Studies and Lead for The Centre for Palliative Care, University of Worcester
I
t has now been clearly documented that most people prefer to die in their own homes (Higginson et al, 2013). Many argue that affording people this request will help to improve their quality of life. But how does this happen and how do we measure it—and from whose perspective? With each death, there is a possibility that another 12 or more people will be emotionally affected through the relationships they have formed with the person who has died. By extension, this one death may also affect informal carers and health professionals caring for the patient. If we accept this, then it is possible and logical to conclude that this scenario is repeated 500 000 times a year with each death that occurs in England and Wales, and 56 million times with each death that occurs around the world (World Health Organization, 2007). One death affects a lot of people, and we need to improve the way that people die and how we care for the grieving friends and families. The scenario of a death and its impact equates quality end-of-life care with any global public health problem that affects a lot of people, and therefore needs improvements to be made. In terms of public health, quality end-of-life care has similar requirements to diseases like HIV, tuberculosis, cancer, malaria and now the Ebola virus, since all affect a lot of people. Yet, while it is clear that the diseases mentioned here are easily considered public health problems, it is not so easy to conceptualise death and quality end-of-life care as public health problems. The difference here arguably relates to our social construction of the two phenomena rather than there being any real intrinsic difference between them. Furthermore, not recognising death and quality end-of-life care as public health problems could support the claim made by Nyatanga (2008) that our death-denying culture forbids us to see it any other way. As a result, it also helps to explain why it is so ‘difficult’ to die in modern society (Nyatanga, 2008).
© 2014 MA Healthcare Ltd
The challenges In order to improve end-of-life care, there is a need to ensure our health-care systems are functional across all settings and ready to meet the challenges of modern health and illness. There is a need for broad-based educational programmes that will equip professionals who care for patients in their own homes to understand the requirements of people in the dying phase. There is a real need to inform practice with evidence from research in order to provide the best care available.When giving end-of-life care it is also important to care for those people deemed important to the patient. Furthermore, the foregoing discussion shows that the same is needed to address and improve public health problems in general. A shift in our
Email: [email protected]
view of quality end-of-life care is required to facilitate the perception that it is a public health problem too.The outcomes of quality end-of-life care and global public health are different, but the processes involved are similar.
Improving end-of-life care It is evident that quality end-of-life care means different things to different people, and it is important that any attempts to improve end-of-life care are sensitive to cultural contexts, which, by their nature, suggest people have a tendency to perceive the same thing (e.g. prostate cancer) in different ways. Planners and policy-makers are crucially important in this respect to ensure that services can respond appropriately to the diverse needs of a multicultural society. It is even more important to understand patients’ needs fully through research evidence, but it seems that there is a relative apathy towards research studies in palliative care. There are several possible explanations for this: funders preferring large-scale studies in order to generalise findings; ethics committee preferences, palliative care being seen as a sensitive area with participants considered vulnerable and ‘gatekeepers’ preferring service evaluations; and the bias inherent in the ‘90/10 gap’ in health studies (Commission for Health Care Research, 1990).The 90/10 gap suggests that 90% of health-care research is undertaken on diseases that contribute to 10% of the problems in palliative care patients (CHCR, 1990).
Conclusion There is still hope, and health professionals and community nurses in particular can use a number of existing quality-of-life measurement scales to determine how ‘their’ patients are feeling about their specific illness. On the other hand, researchers should pursue more research studies that tap into the subjective world of patients entering the end-of-life care phase. In this way, further understanding of patient needs is achieved, and illness and dying episodes might not have such devastating impact on the wellbeing of those important to the patient. Although it is still right to view quality end-of-life care as a public health problem, its impact will be different from most public health diseases. BJCN Commission for Health Care Research (1990) Health Research: Essential Link to Equity in Development. Oxford University Press, Oxford Higginson IJ, Sarmento VP, Calanzani N, Hamid Benalia H, Gomes B (2013) Dying at home—is it better? A narrative appraisal of the state of the science. Palliat Med 27(10): 918–24 Nyatanga B (2008) Why Is It So Difficult to Die? Quay Books, London World Health Organization (2007) World Health Statistics. WHO, Geneva. http:// tinyurl.com/nfgzsly (accessed 25 September 2014)
British Journal of Community Nursing December 2014 Vol 19, No 12
619
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 129.096.252.188 on December 6, 2015. For personal use only. No other uses without permission. . All rights res
