Choice and compassion at the end of life: A critical analysis of recent English policy discourse

Abstract

End of life care in England has recently been framed by two very different discourses. One (connected to advance care planning) promotes personal choice, the other promotes compassionate care; both are prominent in professional, policy and media settings. The article outlines the history of who promoted each discourse from 2008 to early 2015, when, why and how and this was done.Each discourse is then critically analysed from a standpoint that takes account of bodily decline, structural constraints, and human relationality. We focus on the biggest group of those nearing the end of their life, namely frail very old people suffering multiple conditions. In their care within contemporary healthcare organisations, choice becomes a tick box and compassion a commodity.Informed choice, whether at the end of life or in advance of it, does not guarantee the death the person wants, especially for those dying of conditions other than cancer and in the absence of universally available skilled and compassionate care. Enabling healthcare staff to provide compassionate, relational care, however, implies reversing the philosophical, political and financial direction of healthcare in the UK and most other Anglophone countries. KeywordsEngland, end of life care, choice, compassion, discourse, old age, relational ethics, governmentality 2 Research Highlights• The 'choice' agenda arises out of (cancer) palliative care.• The 'compassion' agenda arises out of elder care scandals.• Compassion signifies care as a relationship rather than a commodity.• Compassion can be undermined by an overemphasis on autonomous individuals.

Empathy, sympathy and compassion in healthcare: Is there a problem? Is there a difference? Does it matter?

“…3 Francis called for a culture change in the NHS to include more compassionate care and this was echoed by the Chief Nursing Officer's recommendation to nurses. [3][4][5] The essence of dehumanisation is the denial of another person's mental life and dignity. 6 The question arises as to why people in caring professions cease to show care?…”

The Commodification of Care: a Critical Exploration of the Marketing Mix for Domiciliary Care at the End-of-Life

“…Care becomes an abstract noun, a package to be delivered to service users, the manner in which care acts are undertaken is not accounted for (Borgstrom and Walter, 2015). Allowing a patient a few minutes of time and attention to express fear, share a thought, or tell a story is excluded from the formulary of productive activities and as such is a 'non-productive activity' subject to administration sanction (Diamond, 1995).…”

“…It is concerned with the suffering, dignity, care needs and the quality of life of people at the end of their lives. In recent decades we have seen the prioritisation of choice and autonomy as key quality indicators in many western palliative care services (Borgstrom and Walter, 2015;Ho, 2008;IHF, 2014). A clear illustration of this in Ireland and other European countries is the promotion of patient involvement (Dent and Pahor, 2015), especially in relation to place of care and death (Eurobarometer, 2007).…”

“…While a logic of choice (Mol, 2008) in palliative care has been critiqued in terms of the methodology used (Stajduhar, Allan, Cohen, and Heyland, 2008;Thomas, Morris, and Clark, 2004;Townsend et al, 1990;van der Heide, de Vogel-Voogt, Visser, van der Rijt, and van der Maas, 2007) and the possibility of real choice at the end of life (Borgstrom and Walter, 2015;Drought and Koenig, 2002;Lolich and Lynch, 2016;Lolich and Lynch forthcoming) it is important to examine how the commercialisation of domiciliary palliative care can lead to poor quality of care and exploitative working conditions for employed carers. Ireland is now ranked number 4 worldwide in the overall score in the Quality of Death Index, which takes into account four categories: basic end-of-life healthcare environment; availability of end-of-life care; cost of end-of-life care and quality of end-of-life care (Economist Intelligence Unit, 2015).…”

Living Up to a Good Death: Complexities and Constraints in End of Life Choices

“…Recently, attempts have made been to apply the logic of choice to the context of care at the end of life (3). The End of life care strategy: Promoting high quality care for all adults at the end of life (4), for example, emphasises the need to understand patients' preferences and facilitate their choices as they approach the end of life, with a particular focus on where they die.…”