Issues of assisted dying, palliative care and hospice care are currently very pertinent and being thought about by many. There is much in the media on a daily basis and a recent discussion in parliament.
Tuesday 30 April witnessed a webinar hosted by Hospice UK, for which over 370 people registered. Hospice leaders, their boards and clinicians were invited by Toby Porter, HUK’s CEO to consider carefully the implications of a change in the law around assisted dying to the role of hospice in the future.
Alongside other issues for their consideration, he highlighted their relationship with their communities and their long-term sustainability in terms of income and workforce.
We at St Christopher’s have been giving thought to this issue for a while. As long ago as 2015 we held an away day for our Board in which we invited eminent ethicist Professor Bobby Farsides to join trustees and executive leaders to identify issues that a change in the law would generate for the community we serve, and how the palliative care sector might best engage and respond.
In 2022, we held another two events for trustees at which we considered these issues further, noting an increase in the number and complexity of requests made of clinicians by patients around the topic.
Our ambition at that time was to acknowledge the growing demands for greater self-determination and choice on the part of some of our patients around the timing and nature of the death they wanted, then consider current and future implications of such requests.
In the course of that discussion our colleagues working in community engagement and action framed the aspirations and related concerns in a context of inequalities, including those structural in nature.
We agreed on two actions arising from the discussion. The first was to amend our position statement on assisted dying, confirming our intention to explore the issues further in the light of changing societal perspectives and experiences. The second was to invest in community-based conversations to explore the issue of assisted dying further with people living in our area. We wanted to consider their views alongside those of professionals – well articulated by colleagues within and beyond the hospice.
Our next step was to appoint a community researcher and get to work listening to local people. To date 50 interviews have taken place. They have yielded valuable insights into the breadth of views about assisted dying and related concerns/aspirations.
The results will be reported elsewhere but we highlight below some key themes emerging that we consider important.
We are, as an organisation, more interested in what forms people’s viewpoints and how we might understand them than whether they are for or against assist dying.
Regardless of their opinions about a possible change in the law, most people shared concerns about how we achieve a better quality of life and death for people and ask how a system could be introduced fairly and in a way that tackles rather than further embeds inequalities and exclusions.
In addition, they call for the government and others to pay attention to the need to improve access to quality palliative care for all, and to make further investments in the NHS, and improve access to related services such as mental health support and social care.
In particular, one important takeaway message to share here is that people’s views were shaped by their own experiences.
And people who live with inequalities or marginalisation have concerns about the implications for them and others if assisted dying is legalised in today’s unequal society.
More recently St Christopher’s has engaged in focused conversations with its staff and volunteers about the outcomes of these conversations and what they might mean for practice.
Over 140 staff and volunteers attended externally facilitated groups to talk about their own values and views and how these relate to the views of the community and professionals beyond the UK involved in assisted dying. Again, the results of these conversations will be reported separately but suffice to say at this point that they have been illuminating for the organisation and experienced as very helpful by those who participated.
We, like all hospices, are just at the start of our work to respond to societal shifts and possible legal changes that will radically change the experiences of dying and grief in the UK.
We want to be as ready as we can, confident about what priorities and concerns held by our communities, as well as being sensitive to staff concerns and aspirations. We don’t know all the answers yet and will continue talking to our Board and the many other stakeholders. But we feel much better prepared as a result of having started this work.
We recommend other hospices adopt a proactive approach also, so that we can share our intelligence and work together on a strong and confident response on the part of hospice.
Helen Simmons, CEO, St Christopher’s Hospice
Heather Richardson, previous CEO, now Director of Academic learning and Action, St Christopher’s
Leave a Reply