Guest Article: On Assisted Dying
Dr Ros Taylor DL MBE, Hospice Director at The Hospice of St Francis in Berkhamsted shares her views on Assisted Dying; challenges our natural fear of suffering and sheds light on modern palliative care.
Never ever has death been on our minds more. Every tabloid, broadsheet and café conversation is talking about whether we should legalise the right for one person to assist in the death of another; to write a prescription for a lethal dose to end someone’s life. As Professor Rob George has said…there is intention behind a prescription. If I write a prescription for antibiotics, I intend to treat an infection. If I write a prescription for poison, I intend to kill my patient, a person. This is a massive shift for man, medicine and the British people.
Baroness Campbell, who is severely disabled and has been told five times in her life that she is close to death, wants to trust that her doctors and nurses will never think that death is the best option for her. This made me think – how can others, two doctors, a court, a Lord, a politician ever know that death is in someone’s best interest. A strange idea that we can ever “know” that non-existence is better than existence.
What I do know, however, from caring for thousands who have lived with a terminal prognosis, is that the limits of mortality do give focus to life. The largely untold stories in recent weeks are the stories from those who work in hospice care, stories heard on a daily basis.
We see that most physical symptoms can be alleviated and we don’t see people screaming in pain. We don’t see the “grotesque suffering” that Professor Raymond Tallis talks of. We don’t see overdoses. We don’t see people impatient for life to end.
We do see sadness and grief at leaving life but most of all we see people striving to live another day and welcoming refreshing conversations about what is still possible, what lifts their spirit. We see new connections. We see suffering borne and shared and owned. We see suffering come and go.
We do have many conversations about death . . . what will it be like, can we speed it up, can we slow it down – but these usually lead into a richer dialogue about past life and future possibilities. They are a trigger for attention rather than a practical request to die. Often I have asked patients if I had a button that they could press there and then – would they want to do so now – the inevitable response is let’s wait and see what tomorrow brings.
So again, Baroness Campbell says “Suffering isn’t a permanent state” and she is one who would know. We see moods change, outlooks swing from despair to joy on a daily basis. Dr Annabel Price has researched the desire for hastened death. Her research with terminally ill patients has shown significant levels of treatable depression and a changing attitude to death over several weeks. I remember a man earlier this year who was lonely, had cancer and had tried to end his life. He came into the hospice, we engaged our local psychiatrists, his mood lifted, he left the hospice, he wrote poetry, he laughed again and died peacefully with family at his bedside three months later. This was a healing outcome for his daughters who live on with this story.
And of course, just recently, we have been debating whether everyone needs a conversation about whether to restart their heart once it has stopped! To try and shock people back to life when their organs are failing from disease and frailty. To shock them back to that same life?
Archbishop Tutu talked of Nelson Mandela’s needless suffering in his final months and we remembered that great man on Mandela Day. This was about extending life artificially with ventilators and technology. This may have been what Mandela wanted, just as Baroness Campbell wishes her life to be extended by medicine. We have that choice now; and what’s important and seems to be misunderstood by Lord Carey and Archbishop Tutu, is that we all have a choice not to have our lives extended or for treatment to stop. Laws don’t need to change. Doctors need to share decisions more thoughtfully with patients about all they can do – but don’t have to do. As Professor David Roy said back in 1988, it should be possible to die “without a frantic technical fuss and bother to squeeze out a few more moments of biological life”.
So we all need to consider whether we would want our lives prolonged in certain circumstances. We can already make those choices, and record them, but few of us do.
So the thinking has become muddled. Extending life is not the same as deliberately shortening life. Compassion and cruelty have been used to describe the same scenarios. Dignity has been debated and is seen through multiple windows on both sides of the debate. Autonomy and the right to self-determination is a powerful theme, but which of us ever make decisions that are not influenced by others, or have an impact on others. I don’t.
Autonomy has been described as a relational concept and this is what I see every day. When I talk to dying people their prime concerns are rarely for themselves, but for those close to them. We are good at influencing people in their decisions, particularly when they are in pain or sad. If assisted suicide is legalised, this influencing will include an option to die, which many might consider that it is their duty to take.
Evidence for Oregon and Washington is that ‘feeling a burden’ is a prime reason that people want to end their lives. Surely the response to this sense of burden is to unravel it and discover ways to make our communities kinder, safer and more connected…not to pass a law to kill each other.
So I am really interested in this vast space between needlessly prolonging life through too much medical intervention and ending people’s lives deliberately; the space between longing for immortality and an impatience to die.
This space is currently filled with bad and sad stories of poor care and loss of trust. This space is filled with millions of people.
This space should and could be about living confidently and living well with a terminal illness and making the most of life. This is an agenda that has been lost from recent thinking. Is this debate underpinned by a terror of illness and a lack of care. Is this about misunderstanding what palliative care can offer. We do not recognise the “doped haze” of palliative care that Lord Lester talks of. We see people back at work, travelling, singing and dancing on the right doses of pain relief. Or is it simply that death has become a commodity now that we want to control in terms of time, place and style. 21st century “cool”.
People talk about “safety within hospice care” – not just in our building but also at home. When one tries to understand that feeling of safety – it is about knowing people are on the end of a phone, that they will listen to your deepest and darkest fears and that they will know how to help your pain, your nausea, and support those who matter to you. Again as David Roy says we should be able to die “in the presence of people who know how to drop the professional role mask and relate to others simply and richly as a human being”.
I was surprised this week to receive an amazing donation from the son of a man who received just 24 hours of care in our hospice. I asked him what had prompted the donation. I quote from his letter: “In the weeks before his death, my father was admitted to several hospitals all of which seemed keener to discharge him than to address the fundamental issues. What I found so surprising was the reluctance of numerous physicians to engage with us regarding his imminent death. It was such a refreshing change to meet the hospice staff who managed to combine an ability to face up to reality with a deeply caring attitude.”
This approach needs investment, education and support for all our healthcare professionals, not just those in palliative care. The recent document released by the Department of Health, One Chance to Get it Right, suggests a more personal approach to care of the dying. This is our hope. I don’t want donations on the basis of poor care elsewhere.
The holistic nature of our care, the presence, the confidence to bear witness to all suffering is what underpins hospice care. To introduce “death on demand” as an option seems to be a tragic and unnecessary development.
However, recent evaluation shows that our hospice only reaches less than 30% of those who are dying. We can’t afford to reach that other 70%. They don’t all need us, but many more do. And even the care of this minority is mainly funded by selling second-hand clothes, running marathons and abseiling down tall buildings. The UK is now the only European country where palliative care and hospice care is predominantly funded by charity, by our community, not by government.
Palliative care as a recognised approach to suffering began in the UK. The community hugely values this approach. The public donate £500 million pounds to hospices and 100,000 people volunteer. Surely this is a sign that people deeply care about a safe, holistic and attentive approach to care, as defined by hospice care. This approach needs to be mainstream and funded properly. This is what our politicians should be debating…better care for 500,000 people who die in the UK every year, not the killing of 1,000. The response to poor care and fear should be more universal access to better and trusted care, in hospice, in our hospital and at home. If this was the case, I wonder if we would still be hearing those stories of suffering that have dominated the airwaves in recent months.
So it is hard to understand how death has moved from something that has been happening to humans for 200,000 years in communities, to being an optional medical condition being debated in the House of Lords! Laws need to protect us all, not the determined few. And we all die.
The response to this crisis of confidence in the face of death should not be a law to permit the intentional ending of life, but investment and support in communities, in connection, in general practice, in hospice…as we really do only have ‘one chance’ to get it right.
Dr Ros Taylor DL MBE, Hospice Director at The Hospice of St Francis in Berkhamsted