Rammya Mathew and Kate Birrell: A radical approach to end of life care

Rammya Mathewkate_birrellDeath and dying are inevitable parts of life. They are not primarily medical events, yet the status quo is to medicalise the dying process and hand over responsibility for the provision of end of life care to healthcare professionals. This is despite the knowledge that at the end of life, people prioritise being in a familiar environment where they can be cared for and supported by people they know and trust.

It is therefore imperative that we do more to enable individuals, families, and communities to care for their loved ones, and in turn minimise their dependency on a healthcare system that is already bursting at the seams, and which can deliver only a small proportion of what is needed for a good death.

The National Palliative and End of Life Care Partnership has developed a framework for action, Ambitions for Palliative and End of Life Care, which provides a shared vision for improving end of life care. The first five ambitions are aimed at professionals and organisations. Ambition six, however, aims to create a community where everyone is prepared to help, and more detailed guidance on how we can achieve this ambition has recently been launched.

Essentially, it involves making end of life care a civic matter, whereby society takes collective responsibility for care of the dying. As Allan Kellehear (author of the Compassionate City Charter) puts it—”this involves community development with a capital C.” We cannot just click our fingers and expect to mobilise communities into caring roles. Instead, we have to consider ways in which we can support communities to deliver on this. This will require commitment from stakeholders at all levels—including those who are not direct providers of end of life care, but who have a key role in their community, such as large and small businesses, retailers, schools, and the all important voluntary sector.

The solutions are locally based and need to be tailored to individual communities. The Compassionate City Charter provides a framework for the policies and actions that could be implemented to support this movement. For example, the public health mandate could involve advising businesses to develop supportive policies around death and bereavement, thereby ensuring that employees are not disadvantaged for having to step into caring roles. It may involve teaching on death and dying in schools, in the same way we teach about birth and life. Additionally, it may be about making communities aware of people who are vulnerable and dying so that they are ready and prepared to help. Ultimately, it calls for us to take measures that will challenge society’s norms.

There are key lessons to be learnt from the evolution of public health strategy related to major health concerns, such as smoking. Health promotion as an isolated action was of little use; however, with the advent of advertising laws, taxation on tobacco, and the public smoking ban, we are now moving towards meaningful change. Likewise, the creation of compassionate communities requires a multipronged approach, which combines regulation and persuasion.

Empowering communities crucially involves letting go and handing power over to the people. This is central to harnessing the significant resources within a community and the capacity of people to support their friends, family, neighbours, and fellow citizens. Letting go in this way can be uncomfortable for health professionals, who are accustomed to defined roles and expectations.

However, the benefits to people who are supported by their community during death and dying should not be underestimated.  For example, in Weston, where buddy groups were developed, one bereaved person involved in the group said “I don’t need counselling, just empathy and sympathy from someone who has been through a caring role and lost a spouse through death.”

As this is a community development approach, which is focused first and foremost on people and improving their experiences of death and dying, outcomes are not necessarily “quantifiable” in the way that medical interventions, such as the effect of a new drug, may be. Moreover, imposing rigid scientific evaluation processes can have unintended disempowering effects on community action. The challenge is to support empowerment but still demonstrate results. The Dying Well Community Charter Pathfinder Project shows how participatory evaluation approaches can demonstrate positive outcomes.

There is still much to be done to improve end of life care within professional care settings. We can’t forget this. However, it is now becoming increasingly clear that healthcare professionals can deliver only a small part of what is needed to achieve a good death. To achieve much needed improvements in end of life care, we must draw on the fertile resources within our communities. Ambition six recognises the need to share responsibility and calls on everyone to play their part in improving end of life care.

Rammya Mathew is an academic clinical fellow in general practice at UCL. Her research interests are in dementia and end of life care.

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.

Kate Birrell is a policy manager at the Care Quality Commission. She is the author of A different ending: Addressing inequalities in end of life care, and represents the Care Quality Commission on the National Partnership for Palliative and End of Life Care.

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: I am employed as a policy manager by the Care Quality Commission.