This week’s blog is written by Dr Sarah Russell (@LearnPEOLC), Lead Nurse for Palliative and End of Life Care, Portsmouth Hospitals University NHS Trust. Sarah is also a Florence Nightingale Foundation (@FNightingaleF) Alumni Champion. She is also a member of the British Geriatrics Society, End of Life Special Interest Group and Co-author, The Lancet Commission on the Value of Death (#ValueofDeath).
On the 1st February 2022, The Lancet Commission published its report The Value of Death: bringing death back into life. Drawing on multidisciplinary perspectives from around the globe, the unbalanced and contradictory picture of death and dying is the basis for the report. There is a need for a rebalancing of the relationships and partnerships between people who are dying, families, communities, health and social care systems, and wider civic society. The Lancet Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support. The report identifies five realistic utopia principles and concludes with recommendations.
Realistic Utopia Principles:
- The social determinants of death, dying, and grieving are tackled,
- Dying is understood to be a relational and spiritual process rather than simply a physiological event,
- Networks of care lead support for people dying, caring, and grieving,
- Conversations and stories about everyday death, dying, and grief become common,
- Death is recognised as having value.
You can find out more about the report in this short video. Fundamentally, the report is a call to arms for individuals and society to address the balance across the system as “a reductionist, linear approach that fails to recognise the complexity of the death system will not achieve the rebalancing needed” (Sallnow et al 2022:1).
As a palliative care nurse, a Florence Nightingale Foundation Alumni Champion and co-author, my view is that the report has wide ranging implications for nurses; in particular as to what is our thought leadership, policy, strategy, research, education and practice contribution to the rebalancing of death within life. I believe the argument that “dying is understood to be a relational and spiritual process rather than simply a physiological event” as well as to reclaim “death, dying and grief as social concerns” (Sallnow et al 2022:1) is fundamental to the future of dying and the value we attach to death. As nurses we have a significant role in valuing death.
Nurses of course experience death across and within the many settings that we work within. But a key message of the report is that: “health care is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. Relationships and networks are being replaced by professionals and protocols” (Sallnow et al 2022:2). If we believe that at least some of this statement has validity, then what is the nurse contribution to support relationships and networks rather than implementing protocols? Tragically, the COVID-19 pandemic has only highlighted the medicalisation, transactional nature of death with many conversations and decisions made in the absence of family and friends with guidelines dominating the experience of death.
I was challenged in how I contributed to the report and in my response to it. Reading it even as a co-author makes me question what my role is in valuing death, as a nurse, individual and past family carer. What helped me in my thinking are the concepts held within two models: Pioneering Palliative Care Nurses (PPCN) and Florence Nightingale Foundation (FNF) Alumni Champion (Box 1). Pioneering Palliative Care Nurses is a concept developed by Heather Richardson and Marie Cooper from St Christopher’s Hospice, Sydenham. The Florence Nightingale Foundation Alumni Champion Summary is from fellow FNF Alumni Champion, Rebecca Thomas, Senior Nurse for Improvement at Cwm Taf Morgannwg University Health Board.
Box 1: Pioneering Palliative Care Nurses and Florence Nightingale Foundation Alumni Champion (reproduced with permission)
As I look at these models two characteristics stand out for me: being a campaigner for change (PPCN) and being courageous (FNF). The Lancet Commission on The Value of Death: bringing death into life has only emphasised to me that as nurses we should be courageous, campaign for change and turn ideas into action.
I recommend the reading of the report and its associated background papers relating to death and dying. I believe it has something to say to us as individuals, practitioners, teams, services, organisations, nationally and a global society.
The Royal Society of Medicine is holding an event focused on The Lancet Commission on the Value of Death: bringing death back into life event on 1st March 2022. More information can be accessed here.
Sarah Russell is a co-author of the The Lancet Commission on the Value of Death report and has written a similar blog for the British Geriatrics Society about the relevance of the Value of Death report for older people.