A perspective on assisted dying and palliative care from Chris May

I started nursing at age 16, was involved in Christian ministry for over 20 years, a pastor for a while, returning to nursing in 1997. Most of my nursing was in the Emergency Department and Critical Care, including a stint as a Resuscitation Officer before specialising in Palliative Care. I then became a Senior Lecturer with the University of Bedfordshire and am now a lecturer in PEoLC, teaching in university settings and supporting the health and social care workforce across Bedford, Luton and Milton Keynes. I was an Elder at Hope Church for several years and it’s a privilege to be asked to share on this topic.

This is a sensitive and difficult subject, and I will raise some difficult issues in this blog. We are human beings and grief has a way of affecting us suddenly, and unexpectedly. Should this article raise emotions with which you need assistance, please talk to the ministry team at Hope Church, or contact your GP surgery, who can signpost you to the appropriate services.

I am conscious that there is much written about the arguments for and against assisted dying. You can find a very helpful synopsis of the arguments from CARE here: Arguments for and against assisted suicide and euthanasia. 

My unique perspective comes from my experience as a nurse and particularly as a palliative nurse. I’ll signpost you to some helpful articles along the way. Others can speak authoritatively from a theological perspective. 

This quote from Baroness Finlay of Llandaff, who is a palliative consultant, to a parliamentary committee may highlight why I think the practitioner’s voice is such an important one to hear:  She said  “I declare that I am a palliative medicine physician. I have worked in the field since 1987 and I have looked after thousands and thousands of dying patients, as well as of course having my own experience of people very close to me dying. I have had many, many conversations with people who are dying and people who are in absolute despair. I had a patient back in 1991 who was desperate for euthanasia. Four of us thought that his prognosis was three months. With great difficulty—I was there until 11 at night— I persuaded him that I would try to relieve his symptoms. He said he would give me two weeks before he killed himself. Eleven years later he phoned me because his wife was dying. She died in my care, with his children at her bedside and him in a wheelchair. He is still alive today. That is just one example of how wrong you can be. I have had many conversations with patients who said, “I never believed that I could feel so much better again”. The one thing that palliative care and assisted dying have in common is that they are very poorly understood, and that is a real problem.” You can see the session here: https://www.parliamentlive.tv/Event/Index/0bbebe52-0deb-4ee5-b770-33302ad64dc7 

Let me say a bit about the context in which this debate is taking place. Generally, in our society, the subject of dying is avoided, and pain is something to be fixed or avoided. There aren’t many things more painful than the separation that death brings. A few decades ago, the bedside of a dying person would have been surrounded by family and friends. Now it’s common to hear people say, ‘I won’t visit Uncle Bill as I want to remember him as he was when alive.’ The consequence of this is that we don’t know what dying looks like anymore, what is normal or not. We therefore often misinterpret what we see around the bedside as ‘suffering’, when the person isn’t suffering at all. A short video which explains in layman’s terms the process of dying and what this normally looks like can be found at: https://www.youtube.com/watch?v=v9f6twy70iM&ab_channel=TED  The video is presented tenderly by Dr Kathryn Mannix, a retired Palliative Consultant with many years of experience, and can be very helpful.  According to Dr Mannix, this is ‘medicine’s best kept secret!’

In recent years, death has become medicalised and hidden from view. Often death is viewed by medical colleagues as a failure. This prompted a recent paper, produced for the Lancet Commission investigating views on death across the world, entitled, ‘The Value of Death’. The Lancet article I wonder how that title hits you? How can death be valuable? Dr Kathryn Mannix talks about birth and death as the two bookends of life. How you view death can greatly impact what happens in life itself.

Misunderstandings about the dying process are sometimes compounded by the media, where the stories we hear are the worst people have experienced – often extreme cases presented as ‘normal’.

So, my first point is that most of us don’t know what dying looks like and are likely to misinterpret what we see as suffering when the opposite is often true. This is can be compounded by the media, where the stories we hear are the worst – made out as if they are the normal experience of everyone, and where time doesn’t allow more than soundbites on a very complex subject. 

My next concern lies around the provision of excellent PEoLC care for all. Marie Curie has been leading some important research around the provision of PEoLC. A good leading piece can be found here: https://www.mariecurie.org.uk/blog/the-conversation-on-assisted-dying/380550

Why should we be concerned about this? Many places in the country don’t have access to hospices. According to Marie Curie, 1 in 4 of us experience a poor death. https://www.mariecurie.org.uk/policy/better-end-life-report.

During the COVID-19 pandemic, Professor Irene Higginson led some research on the positive impact that palliative care had on patient care https://www.kcl.ac.uk/research/covpall. The reason this is concerning is that where palliative clinicians are involved, there can be a significant improvement to symptom control, but not everyone has access to that care.  

Baroness Finlay of Llandaff is famous for asking how it would be if our healthcare was funded by coffee mornings and charity shops? That’s basically how PEoLC is funded in this country, which is why it is not more widely available. 

Let me draw this to a close with something positive and a challenge to us as Christians. 

A challenge: I have sought to engage ministers and key leaders in the world of palliative care.  A chaplain remarked recently that so many Christian leaders are frightened to talk on the subject when asked, as they fear the environment. There may of course be many other reasons. Should we be surprised then at the prevailing secular response when we don’t engage even when given the opportunity?

Let’s end positively. I will warrant that for most of you, when you hear the word palliative, you think of someone who is dying and near the end of life. In contrast, the first thoughts that come to my mind are about living well. The byproduct of good palliative care is often to lengthen life. Many patients who are palliative by nature of their life-limiting disease, can still have decades of living to do. Hospices have gyms, swimming pools, a wealth of resources from social workers, physios, occupational therapists, art and music therapists, along with nurses and doctors. They are ‘making the difference’, when it matters the most. I’d suggest getting this most basic care available to all should be the priority right now.