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Addressing palliative care from a public health perspective

Linda Kerr
RGN DipHSW BSc MN
Nurse Specialist in Palliative Care
NHS Ayrshire and Arran

Palliative care extends beyond death, as the focus is on the family as well as the patient - so how can nurses ensure patients have the right to choose how and where we die?

Palliative care has become synonymous with specialist care for people who are dying and encompasses not only physical but also psychological, social and spiritual aspects of care. Care in bereavement is an integral part of its remit as well as care for the dying.1 As John Humphrys said in his book, The Welcome Visitor, “The attitude of modern society to death has changed because our attitude to life has changed. A century ago we knew that death was never far away and we were prepared for it. Today the opposite is true.”2

Palliative care has evolved in response to historically and culturally determined beliefs about death and dying. In all societies, the support and care of people at the end of their lives in some form or other is evident. Death and dying is a defining feature of all peoples and all cultures and cannot be considered as solely a health care issue, but as a societal concern affecting whole communities.3 The nature and practice of palliative care is, therefore, shaped by changing societal perceptions of death and dying.

Social perceptions of death and dying
In the civilised west, we tend to think of death in old age as the norm; however, in the previous millennium few people survived to old age and the majority of deaths occurred within the first year of life. This remained true until the last century in the west and continues to be the case in the developing world.4

Historically, traditional rituals following death provided a framework to enable people who were bereaved to openly grieve and express their distress. These traditions weakened, mainly as a response to societal change and increasing secularisation. The experience of the bereaved is now one of uncertainty and few rules, in which the person is left to draw on traditional practices of grieving and memorial, combined with more idiosyncratic choices, to try to do the right thing.
As we look at how people react to death, we see how varied these reactions have been over time. These are socially shaped ideas and assumptions subject to historical and cultural changes, with every society and faith system having developed some way of integrating the reality of death into its belief
system and way of life.5

Health Promoting Palliative Care
In ‘Health-promoting palliative care: developing a social model for practice', Australian sociologist, Allan Kellehear, discusses the links between the World Health Organisation‘s principles for health promotion (Ottawa Charter) and palliative care.5,6 He suggests that if health is everyone's responsibility, then it is also the responsibility of those living with life-threatening illness and those caring for them. Kellehear further suggests that palliative care services are not taking this message seriously, which has meant that health promotion has ignored the needs of those who live with chronic illness and is in fact death-denying.

As a result, Kellehear has proposed a model of health-promoting palliative care that has been developed in Australia. He suggests that its main objectives are to:

  • Enhance a sense of control and support for those living with serious life-threatening illness.
  • Recognise that the prospect of death is shared by all of us all the time; therefore, death is not the central psychological fact of care but rather a day-to-day quality of life issue of everyone.
  • Provide information and education about health, dying and death.
  • Provide social supports both personal and community.

Kellehear concludes, “Death and dying are not simply palliative care issues, but public health ones, too”. He believes that the application of the principles of health promotion to palliative care could be of benefit to dying people, their families and society as a whole.6 Community nurses are in an ideal position to take this forward.

Talking about death and dying
Although the way in which we die has improved significantly in the last century, the institutionalised ways we cope with dying remain out of sync with how most people would choose to live at the end of their lives. Most people wish to die at home with their family and friends nearby with medical and nursing support available as needed.

Unless we can develop ways to encourage people to talk about how they want to live while they are dying, our efforts to improve services will be done blindfolded. One way to assist with this is the development of advance care plans where with the assistance of friends, family, trained peers and professionals the wishes of those nearing the end of their lives can be discussed and documented.

Not everyone will want to talk about how they want to die but everyone should be offered the opportunity to do so. Conversations should be friendly and low key, teasing out feelings and what they value most. The more people are encouraged to talk about what matters to them about life the more likely they are to get it even while they are dying.

Dying Matters
The benefit that greater community understanding and involvement in death and dying would bring to end-of-life care is increasingly being recognised in the UK, and was mentioned within the UK government's new Public Health Strategy: “The taboo about discussing death and dying means that too many people can reach this critical point of their life unprepared, without having thought about how or where they would like to be cared for. This, in turn, affects their family and carers as a poor death can lead to a traumatic bereavement, with associated mental and physical health issues.”7

Following the publication of the End of Life Care Strategy, the Dying Matters coalition was established by the National Council for Palliative Care in 2009. Its aim was to raise awareness of dying, death and bereavement in the general public. The Coalition's Mission is “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well' the norm”. Their website also contains information to help health and social care professionals discuss these issues with their patients and clients (see Resource).

The Scottish perspective
In Scotland work had commenced to look at these issues and in 2003 the Scottish Partnership for Palliative Care conducted a survey of the general public and most people did not feel that the Scottish people discussed death and dying in a ‘realistic way' and considered death as a taboo within Scottish society.

This report called for further work in engaging with the public in the promotion of an open discussion about death and dying.
In 2008, ‘Living and Dying Well', the national action plan for palliative and end-of-life care in Scotland was published.8 It identified seven areas for further work and short life working groups were established to address these. One of these groups was tasked with the exploration of ideas and issues for addressing palliative and end-of-life care from a public health perspective.         

The short life working group was also tasked with establishing an alliance to take forward that work in a similar way to the Dying Matters coalition in the south.

Conclusion
Our challenge is to help people to achieve what is most important to them at the end of life. This requires the creation of a network of health and social supports. Dying, death and bereavement are not easy subjects to talk about and we all find it difficult. However, by engaging the public in the ways described above, talking about death and dying will no longer be a taboo with bereavement and loss being seen as part of ordinary life. We will also create a society that are more aware of the issues and better equipped to support one another throughout life and not just in death.

References

  1. World Health Organisation. WHO Definition of Palliative Care. Available from: www.who.int/cancer/palliative/definition/en/
  2. Humphrys J. The Welcome Visitor: Living Well, Dying Well. London: Hodder & Stoughton; 2009.
  3. Kellehear A. Compassionate Cities: Public Health and end of life care. Oxford. Routledge; 2005.
  4. Parkes CM. Grief: lessons from the past, visions for the future. Death Studies 2002;26(5):237-85.
  5. Kellehear A. Health-promoting palliative care: developing a social model for practice. Mortality 1999;4(1):75-82.
  6. World Health Organisation (WHO). Ottowa Charter for Health Promotion. WHO: Geneva; 1986.
  7. Department of Health (DH). Healthy Lives, Healthy People. London: DH, 2011.

Resources
Dying matters
W: www.dyingmatters.org.uk