In my research, I interviewed 31 hospice CEOs from all regions of England for two hours about a number of fundamental issues. [1] This was in 2019/20 so it was before the Terminally Ill Adults (End of Life) Bill began its journey through the UK parliament. Here are some of their comments about assisted dying (AD):
“[I’m not in favour because] I think patients are already confused about whether hospices bump you off [but if AD becomes law we could still say] it’s not something that we do”.
This article is one of a series of four discussing an approach to hospice futures that I call Strategic Tension Recognition or STRV (with ‘V’ signifying visualisation) that can help hospice leaders to recognise and work with the varied perspectives and tensions around them as they look ahead. For a description of the method, see Article 1.
Others said: “It’s a bit like Brexit … all the people on the inside thought they were having one conversation … but the wider populous was thinking something quite different [so] I don’t think you can ignore that”; “we have to be part of the conversation”; “ethically, morally I’m not for it”; “I’m really conflicted about it … my worry is about the potential abuse”; “the best legislation in the world would have tons of unintended consequences … I’m against it but I believe society wants it”; “[AD] will be a huge platform for raising the profile of sort of hospice and end-of-life care … I think public opinion is overwhelmingly in favour”; and “I don’t agree with it because I think you then put all your energy in that rather than helping people to live when they die”.
One CEO asked the question: “Who owns death?”, saying:
“People avoided talking about death because, historically with death, the church owned it … and then the doctors and the hospitals took ownership of death … but it was medicalised; it was paternalistic, and death was owned by the doctors and the hospitals, and that was the biggest challenge to try and see this as a life event and a very important event … and it’s only now you are seeing the paradigm shift where it’s swinging back to the people who are starting to make their own choices”.
This important question was also asked by Ros Taylor, a physician and former hospice CEO, in a BMJ blog a few years ago. [2]
In a similar vein other CEOs spoke about institutional power and personal control. For example, they said: “Death doesn’t belong to hospices; death belongs to all of us”; “we’re going to give you palliative care” displays an attitude of ownership and “[we need to] turn that on the head so that people … can actually say what they want”. Another said: “The biggest challenge for me about death and dying, it’s the focus of clinicians on keeping people alive … we need to actually recognise what people want”.
Hypothesising, one respondent commented that after two world wars where people experienced so much death, they probably did not want to talk about it but: “That generation is leaving us and we now have a new generation that are talking about it, preparing for it, want control, even want assisted dying”. Expressing concern that some hospices are being judgemental about AD, one CEO said they (hospices) are giving the impression that we own the agenda and know what is right for society.
Similarly, another interviewee said: “I think it’s not for us or the law to actually say what’s right for us because life and death is our choice … a lot of people disagree with me but I just think it should be choice [and] … it’s just we all should have the right to die in a way that allows us to die how we want to die”.
Another respondent said: “I think the patient should have a choice” and that these conversations should be much earlier in one’s life as part of a “more proactive approach to death and dying [long before people become ill and before our current advanced care planning]”. So we can see here that a number of CEOs are saying that a primary driver for AD should be personal autonomy rather than institutional control. Put a different way, there are rules and freedoms around how we live, surely there should be choices around how we die.
Figure 1
Using STRV we can draw the semiotic in Figure 1 to display some of the tensions in the ‘Who owns death?’ question. Of course, I could have drawn this in a number of ways but it at least helps me to see some of the pushes and pulls that are going on in this aspect of the assisted dying conundrum.
Importantly, it helps me reflect on where I think a marker on a line between the various ‘powers’ currently rests and perhaps should move to. So, for example, do I feel that the marker is too close to institutions or governments? Does the marker need to move closer to people and me and my loved ones? When it comes to the end of my life, if I am suffering terribly, despite the best care and support, will I want more ownership and control over what is happening?
To build a fuller picture, other semiotics could, for example, show potential tensions amongst family members and friends, between different professions, government departments, common interest groups or cultures and beliefs. Further semiotics could visualise tensions in related questions such as, ‘Who wants death?’, ‘Who allows death?’, ‘Who carries out death?’, ‘Who is at risk?’, ‘Who cares about or has an interest in death?’, ‘Who can make dying more comfortable, meaningful and peaceful?’ and so on.
Importantly, STRV builds perspective because it helps us to literally draw out the positions and tensions that are operating in the midst of difficult problems.
To appreciate these varied outlooks, semiotic diagrams encourage us to stand in different shoes and see what others see. In Figure 1, one of the ‘owners’ is described as communities and another is countries. This made me think of Megha Mohan’s BBC article about a brave woman in Eswatini (Swaziland) supporting people experiencing HIV. When writing about a ‘good death’ Megha says, “If in the West the focus is often on dying with minimal pain, in Africa the emphasis may be placed on how your death will affect the community around you”. [3] I found this enlightening, reminding me of a conversation with a nurse in my first days as a hospice CEO who said repeatedly, “Never assume to know!”.
I am not particularly comfortable with the way that the question ‘Who owns death?’ is couched because the concept of ‘owning’ smacks of our western obsession with materialism and individualism. Nonetheless, I find the provocation helpful. This short paper does not answer the question but offers a tool for individuals, communities, colleagues and partners to gain new insight into today’s assisted dying conversation.
In a number of the anonymous interviews, hospice CEOs were adamant that whilst hospices undoubtedly play crucial roles in the care and support of people at the end of life, hospices do not own the experience of dying and they do not own death.
As one CEO put it, the modern hospice movement was formed because a vulnerable young man needed to be listened to and have his hand held at the right time. As the assisted dying debate continues it might be helpful if we all consider who currently owns and controls death, who we think should and whose hands need holding as we strive to work it all out together.
In my final article, I consider the question, ‘How are hospices developing?’.
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This is the third of four articles which Stephen has written for ehospice based on the findings of his doctoral thesis. They will appear weekly as follows:
Finding Hospice Futures: Exploring why hospices are here, what hospices are and how they are developing
1 Finding Hospice Futures by exploring and visualising why hospices are here
2 Finding Hospice Futures by exploring and visualising what hospices are
3 Finding Hospice Futures by exploring and visualising who owns death
4 Finding Hospice Futures by exploring and visualising how hospices are developing
Stephen Greenhalgh is a former hospice chief executive and board member of Hospice UK. He is currently a Trustee of Wigan & Leigh Hospice in Greater Manchester. These articles are based on his doctoral thesis with the University of Glasgow, completed in 2024. Its title is: Exploring and visualising the purpose, concepts and development of hospices in England from the perspective of hospice chief executives.
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[1] Greenhalgh S. Exploring and visualising the purpose, concepts and development of hospices in England from the perspectives of hospice chief executives. [PhD]. University of Glasgow, UK; 2024.
[2] Selman L, Sallnow L, Taylor R, O’Mahony S, Smith R. Is palliative care having an existential crisis? The bmjopinion. 2019
[3] Mohan M. The woman with HIV helping others have a ‘good death’. BBC. 8 March 2021. Available from: https://www.bbc.co.uk/news/stories-56282751 Accessed 01 April 2025.
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