The assisted dying bill has brought to the fore debates about euthanasia, quality of life in people with incurable diseases and the nature of end-of-life care. Community nurses know more about this subject than most healthcare professionals. They have witnessed many good deaths, but also deaths that were distressing for the patient and loved ones. They must have their own views on assisted dying and, as with most debates, this one is nuanced and by no means clear-cut.
Proponents of assisted dying draw attention to difficult and harrowing deaths they have witnessed or heard about, where the patient is distressed physically, emotionally or spiritually—sometimes all three. In discussions of euthanasia, arguments abound about beloved pets who were put out of their misery before they died a slow, painful and undignified death and parallels are drawn with human end-of-life care. Community nurses are acutely aware of the types of disease and prognoses that lead to the sort of death that none of us would choose. Assisted dying in these circumstances is perhaps easier to understand, and for many, straightforward.
However, on the other side of the debate are those who are more cautious about assisted dying. They raise concerns that individuals with life-limiting conditions may feel pressured to choose assisted dying because of considerations of caregiver burden or financial concerns. Another argument is that the standard of palliative care could decline significantly because there may be less incentive to invest in this specialised field of nursing and medicine. Even now, it is something of a postcode lottery, with patchy access to hospice care and an overreliance on charitable funding for many palliative care services in the UK. People with higher incomes and more free time are arguably better positioned to raise money for local charities than those on minimum wage.
Returning to the discussion of good deaths, community nurses have witnessed many throughout their careers. These experiences may align with the writings and ideas of renowned palliative care doctor Kathryn Mannix (2018), who emphasised the importance of compassionate care at the end of life. One of Mannix's best known works is an insightful book on dying titled With the End in Mind—How to live and die well. Mannix talks about her experiences of good deaths, particularly in cancer care, where most assisted dying is likely to occur because the illness trajectory is more predictable as opposed to non-malignant diseases, such as motor neurone disease or heart failure. She describes in detail the way that most deaths from cancer happen, quietly and peacefully, and the reassuring conversations she has had on many occasions with patients with cancer who were terrified of dying; those patients perhaps who would be tempted to end their lives if the act is passed.
Another chapter in Mannix's book is particularly relevant, because she discusses the Dutch healthcare system, where assisted dying has been legal since 2002 (Kimsma, 2010). Mannix describes her experience of the death of a patient who was offered the right to choose when and how he died. The patient, Ujal, had a large, inoperable rectal cancer with intractable physical symptoms, including foul exudate and smell. The patient was English, but had been living in the Netherlands and felt obligated to agree to assisted dying. The patient said,‘They didn't mean to frighten me. I think they thought it was a comfort. But it was every day, every ward round, they told me that if I want to, I can choose to die’. In the end he decided to travel home to England for symptom control and end-of-life care, where assisted dying was not an option.
While Ujal decided not to go through with assisted dying, the author of this editorial wonders whether having the choice is in itself liberating for some.
The author has encountered cases where Dutch patients living in the UK had purchased medications used for euthanasia in the Netherlands through a third party, but left them on the shelf, never using them. Perhaps, the mere knowledge of having the choice is ultimately what people desire.
Bronnie Ware's research on the top five regrets of the dying offers reflection and a useful message for all, providing valuable insights as debates on death and dying continue.Ware (2019) found that those nearing the end of life wish they had:
- The courage to live a life true to themselves not the life others expected of them
- Not worked so hard
- The courage to express their feelings
- Stayed in touch with their friends
- Let themselves be happier.
Whatever one's thoughts on assisted dying, this wisdom offers a valuable lesson for all. It reminds individuals of the importance of living authentically and nurturing relationships that truly matter.