Tracey Bleakley, Chief Executive of Hospice UK, shares her thoughts on assisted dying. This piece represents a personal opinion and does not reflect the view of Hospice UK as a whole. Hospice UK currently has no collective view regarding the issue of whether the law should change to allow ‘assisted dying’ or ‘assisted suicide’. This is on the basis that the organisation represents over 220 member organisations, most of whom have not yet stated a clear position regarding this matter. This is in line with most national healthcare charities (Macmillan, Marie Curie and Sue Ryder). It is different from a ‘neutral’ position, which may imply an organisational perspective that has no interest in the outcome of the debate.
“Truth is rarely simple and seldom obvious, which is why mature institutions recognise the importance of conflict and disagreement. Christianity was born in conflict, and it has been characterised by conflict ever since. The Church’s obsession with heresy is witness to this fact.” Richard Holloway, Doubts and Loves: What is Left of Christianity
I’m constantly asked as CEO of Hospice UK what my view is of assisted dying. Ok, here goes: I don’t know. That’s not something you’re ever supposed to admit as a Chief Executive. We are supposed to know the unknowable. Let’s be clear on this – I don’t.
What follows is a description of my thought process thus far. It isn’t a logical precis of the arguments on either side. There will be strands that I have missed or that haven’t been argued strongly enough and evidence, data and stories that could be added on either side. I’m not attempting to convince anyone with this article, merely to explain my own current position and how I got here.
So let’s start with me – what would I personally want? Would I want the option of assisted dying? I don’t follow a formal religion, so I can’t look there for guidance. We know that a well person will often have clear wishes around their death that may change completely when they are unwell and facing the end of their life. I can’t imagine the situation well enough at the moment to instinctively know if I would want the choice.
Would I want assisted dying to be available for my loved ones – well that’s a whole different question… I’d want to hang onto every possible second with them and do everything I can to make them comfortable, make them want to stay. I’d never want the thought (however small) that they had decided to leave early under a sense of duty, feeling a burden. That may be selfish, but it’s honest. As a family, we were unable even to agree to put our dying dog to sleep when I was a teenager. We were afraid of how we would all feel about ourselves and each other afterwards in grief. We pulled ourselves apart with the arguments before Bouncer took matters into his own hands, curled up under the television and quietly died.
Good palliative care should be available to everyone of course, and that should cover the Cicely Saunders concept of “Total Pain” – physical, spiritual, emotional, psychological. We should be able to keep people comfortable through to a natural end, understanding their wishes and goals and pulling out all the stops to achieving them. That’s why I’m in this job after all.
But we also know from first hand experience that many people have a line that once crossed makes their quality of life intolerable. Sometimes it is known in advance, sometimes not. It could be the point when a person is no longer able to sing, to eat their favorite food, to go to the toilet unaided. In his book “Being Mortal”, Atul Gwande spoke movingly about the death of his father. They discussed further treatment with his father deciding “enough was enough”, but that his life was worth living as long as he could still email his grandchildren. Gwande himself has very clear ideas about his own views:
“If I am reduced to just a brain in a jar hooked up to some kinds of sensory devices that allow me to see and hear in the world and communicate and have a connection with people, that’s good enough for me. I could live Stephen Hawking’s life. If I were a body, though, and the brain were gone and I was not who I was and I couldn’t interact, then let me go.”
In thinking about public policy however, you’re not thinking about yourself or your family, you’re being asked to make a decision for thousands of people you will never meet, whose story you will never know, in hugely complicated cases you will never be able to weigh up. Baroness Finlay once said to me that you shouldn’t vote to change a policy unless you felt fewer people would be disadvantaged by the new policy than the existing legislation (accepting that there will always be unintended consequences). This is sensible advice, and it’s appropriate for me at least at the moment.
A few weeks ago, I was listening to a thoughtful speech by Dr Rajagopal who has done so much work to transform palliative care in Kerala. He argued that “we must promote public discussions and not rely only on law”. He went on to quote the following:
“Yes, crossing the border without documentation is illegal. Being black without a white owner was illegal. In Germany, being a Jewish person was illegal. Without ethics, laws are just the stories we tell to justify horror.” Isi Breen.
How can we then contemplate changing the law to allow assisted dying when as a society we know so little about death and dying, and we talk about it even less? The most recent proposed bill on assisted dying asks that anyone in the last six months of life who is over the age of eighteen with decision making capacity can choose to self-administer medicine to end their life. But for me, this doesn’t address the issue.
Firstly, we know how difficult it is to predict death. Every condition has a prognosis bell-curve and in a world of multiple co-morbidities it is getting ever harder to predict with any certainty when the end might come. In the US, a patient has to be in the last six months of life to receive hospice care, and we know that the average stay in hospice care is three weeks because clinicians are so reluctant to diagnose imminent death before that point. Also, what are we all afraid of and trying to avoid through assisted dying? Dementia, locked in syndrome, vegetative states? Fear of the symptoms of these conditions will not be addressed by the latest bill.
I recently met the brilliant Celia and Jenny Kitzinger to discuss advance decisions. I hadn’t realised that they had a sister because Polly was badly injured in a car crash on 30th March 2009 at the age of 48, which resulted in a severe brain injury. Polly would have wanted to refuse life-sustaining medical interventions – including the feeding tube that she was dependent upon for the first two years after her injury while she was in an unconscious, then minimally conscious, state, but without evidence of her wishes recorded in a formal advance decision, the family were unable to persuade doctors to allow a natural death. Polly was a disability rights activist who worked with those who had lost capacity to make their own decisions about medical treatment through mental illness. She was persistent and passionate. Sadly, although Polly had told her family what she would want, she had not formally recorded her wishes. Polly is now fully conscious and can be spoon-fed. Ten years on from her car crash, however, she remains profoundly mentally disabled – needing 24/7 care and ‘lacking capacity’ to make any decisions about her own medical treatment. Although she is unlikely to recover further, she could live for many more decades.
So what rights do we already have within the law through an advance decision or living will? An advance decision allows a person to set out treatment that they would chose to refuse if they are unable to communicate their wishes in the future. You can state which condition this applies to (including dementia, terminal illness, Parkinsons, Huntington’s disease or others, and the treatment you wish to refuse. This can include mechanical ventilation, CPR, dialysis, antibiotics, transfusions, nutrition and hydration. For example, you could state that you would like only comfort measures to be taken in the event of a stroke. There are excellent resources on the Compassion in Dying website with more information.
Of course, even advance decisions have their problems. A well person who develops dementia may face considerable distress when a UTI goes untreated due to an advance decision to avoid antibiotics. An asthma sufferer may remain alive but with an irreversible brain injury after refusing mechanical ventilation. My feeling is that we need to increase public knowledge on the choices that are already available and on decision making at end of life in general before we can think of taking the next legal step. I just don’t believe public consciousness is ready to take the leap. When that time comes – will I support a new bill? I don’t know. Like most other people I need to listen to the arguments, let my knowledge and experience evolve and try to make an informed decision. In the meantime I’ll be doing everything I can to raise awareness and get the conversations started.