Time for a radical rethink in how we deal with death
Co-Chair of the Lancet Commission on the Value of Death
Palliative Medicine Consultant and Co-Chair of the Lancet Commission on the Value of Death
Our present health system is unsustainable. People have recognised that for years, but it is now becoming obvious to most.
It’s easier to imagine what a socially, financially, and sustainable health system would look like than to know how to get there. A sustainable system would be built around public health, primary care, social care, and increased agency for people, families, communities, and civic society. Health would be pursued not simply as the avoidance of disease but as the promotion of a full life.
Hospital care, which currently absorbs about half of the NHS budget, would be scaled back, concentrating on preventative, community-based care, much of it low tech, that gives most value to patients and citizens. The workforce would match the need, meaning fewer specialists and more generalists and a higher ratio of nurses and allied health professionals to doctors.
This may sound like “pie in the sky,” but the Lancet Commission on the Value of Death (which we co-chaired) has proposed a route to a system very like the one described above in at least one part of health care —end-of-life care.
The starting point: death is not a medical event but a family, community, cultural, and spiritual process. The same is true for health in general, and particularly for birth. Yet health care, often in hospitals, is now the context in which many encounter death. As families and communities are pushed to the margins, their familiarity with death and confidence in supporting those dying and grieving is diminished. Relationships and networks are replaced by professionals and protocols.
As the commission found, around 10 per cent of annual healthcare spend goes on the roughly 1 per cent who die each year. Appointments with GPs and specialists, attendances in emergency rooms, unplanned hospital admissions, and admissions to intensive care units all increase in the last year of life, with a particular acceleration in the last month of life.
From a societal point of view, it makes little sense to spend on healthcare with limited benefit, but it could make sense for the dying person if the care was good, relieving their suffering and enabling a dignified death. Unfortunately, as the Commission found, there is lots of evidence of overtreatment, and that many people die badly.
There is often a failure to hold the ‘difficult conversation’, the conversation where patients are told that they are dying and all options are honestly discussed. (Although the term “difficult conversation” is widely used, better terms are the “anticipatory” or “essential” conversation.)
Too often treatment is simply continued because it is easier for the patient, family, and health professionals to do this than hold the ‘essential conversation’. Dying people and their families may not even realise that they are dying, when death is only days away.
Every patient and their carers should have the right to the ‘essential conversation’. Death awareness campaigns, including the use of multiple media, death cafes, death festivals, and the like have contributed to encouraging more openness around discussing death, but real progress may depend on shifting power to the community.
Partly because of the failure to hold the ‘essential conversation’, many patients are overtreated at the end of life. The end result is that people suffer unnecessarily, their quality of life is low and people often spend their last months in healthcare settings, which few want.
This problem was recognised in the 1960s, when the range of possible interventions at the end of life was much less, and led to the development of palliative care, which concentrates on the whole person and making the last period of life as full as possible.
One unintended consequence is that the development of palliative care as a specialty has reduced the capacity and even willingness of many health professionals to care for the dying. Most people do not die under the care of palliative care teams, and the answer is not an increase in palliative care specialists, making the health system still more unsustainable.
Care of the dying should be a core skill for all health and social care professionals, and as such, leaders of palliative care should concentrate on leadership and spreading their skills – including to families and communities.
Failures at the end of the life are system failures, not the fault of health professionals, patients or families. The Lancet Commission developed principles for a better version of death, dying, and grieving: tackling their social and structural determinants; understanding death to be a relational and spiritual process; supporting the development of networks of care; encouraging conversations and stories about death, dying, and grieving; and recognising the value of death.
Improvements will not come by simply changing the health system, which is probably true of all healthcare. Government interventions alone will not improve health care, change will depend on mapping, understanding, and changing death systems within communities. it will require changing mindsets, the goals and the rules of the system, and information flows. There are many examples of change under these headings that are already underway.
These changes should lead to end-of-life care being led by families and communities with support from health professionals, many of them working in the community. Power will shift. The goals and nature of care will be different not because governments and health authorities want them to change but because power relationships and the system have changed.
All this may sound somewhat abstract and even utopian, but a system close to that envisaged exists in Kerala, South India. End of life care —and, indeed, relief of suffering – is led by the community with support from health professionals rather than the other way round.
An umbrella organisation, the Neighbourhood Network in Palliative Care, was formed in 2001 to provide support with training for volunteers, access to medical and nursing skills, and initial funds to start the work. Groups were run by people from the local communities, such as farmers, teachers, and local business people, and drew on existing community resources and assets. Doctors and nurses undertook the clinical roles, but importantly, the cooperatives of community volunteers led the service.
By 2007 there were close to 100 autonomous centres running throughout Kerala with a network of thousands of volunteers supporting them and donations coming from the local community. People with life limiting-illness or other forms of suffering now had people coming to visit them at home, supporting their families with care, mobilising community resources. Honest conversations about prognosis are held, and volunteers focus on giving families the tools to care for a dying person in a sustainable way.
In 2005 the Government of Kerala responded to the groundswell of community action to create a state palliative care policy. The policy was declared in 2008, stating that palliative care should be participatory and work closely with community actors. It further described how all primary healthcare units should provide palliative care in collaboration with local volunteer units.
People in Britain have developed programmes along the lines of those in Kerala, and in addition there is a movement to develop compassionate neighbourhoods, communities, and cities. These are scattered and have not seen the shift in power from the health system to communities that must happen, but they are steps in the right direction.
The value of life is increasingly expressed through continued medical treatments. This serves no one. A system that is led by and based in communities would be more sustainable, and better serve those at the end of life and those they leave behind.