I am the master of my fate...
On assisted dying
“I'm dying, I know that. I just didn’t think it would be… so slow.”
His frankness caught me a little off guard, but it was still within the context of the discussion we were having. He was intelligent and articulate, and well informed about his medical condition. About its clinical course. About its prognosis.
I was there to discuss that prognosis. In particular, what it meant to him with his current acute illness. He had a pneumonia, and a bad one. Whilst his breathing was not yet that bad he was requiring a fairly significant amount of supplementary oxygen to keep his blood oxygen levels normal. This has prompted the medical team to ask for our opinion on critical care about the next steps.
If things got much worse would he benefit from invasive mechanical ventilation? This involved heavy sedation, a plastic tube down his windpipe and a machine blowing gas in and out of his lungs.
I had known the answer when they first discussed the case on the phone but wanted to complete the assessment with an in person history and examination. Plus it always felt more appropriate to say “no” in person.
His wasted muscles supported my first impression. Invasive ventilation, if the pneumonia got that bad, would simply be prolonging his death in an unpleasant manner, not changing the outcome. He was already receiving all the therapies that would be helpful.
This was his third pneumonia in as many months. It was worse each time. I knew, he knew, this was probably how it would all end for him. His neurological disease would be the ultimate cause of his death, but a pneumonia would be the proximate one.
He had been in full agreement with my assessment for limiting treatment to the current therapies.
“Things are being dragged out enough” he said. “I definitely don’t need any more of that.”
I’d like to think it was the candour of our previous discussion that emboldened him.
“Is it impossible for you to help it end now?”
He asked it in a rather off hand manner. Half joking, but half absolutely serious.
I knew what he meant.
It is a strange thing for someone to ask you to kill them. Disconcerting. As a doctor this feels especially so. The very nature of our profession is to fight disease; to push death back, inch by bloody inch. Not acquiesce meekly to it.
Or so I had thought.
The naivety of those earlier days has steadily left me. I am now well aware of a large group of patients who would disagree with such an assessment. Who, as described above, saw very little acquiesce in the realism. Death was not a failure, it was inevitable. It came to us all. We doctors were hubristic and arrogant in our presumptions about health, life, and the end of it all. Yes, often well meaning, but still not entirely aware of the whole picture.
Because they are dying. Slowly, painfully, and often with a sense of crumbling dignity. But, most of all, a powerlessness.
We have made progress here. The Mental Capacity Act (2005) feels like the most explicit framework for this. It puts the patient at the centre of the decision making process. This has always been important, but medicine can be surprisingly complex. Can you really provide informed consent around conditions and treatments that you don't understand? I have had 13 years of medical training and barely understand some of the hyper-specialised interventions that some of my colleagues undertake. As such, doctors are continuing to play a central role in helping patients navigate this realm. We are bringing together the competing aspects that are hard to comprehend - the patient has an intimate appreciation of their values and wishes; we understand the medical narrative, and predictable risks and benefits. We translate the potential choices. They make a decision.
All of this can still be challenging. Within this paradigm of choice is the freedom to make a bad choice. Indeed, this is explicitly described in the Mental Capacity Act - just because we think a choice is a bad one (however we would choose to quantify that) we cannot jump to undermine their capacity to make that decision. It is part and parcel of the very nature of freedom. Good vs bad choices will look very different for different people, and even for the same people at different times.
This is where the topic of assisted dying seems to become a real challenge. The current set up is not entirely contrary to the concept of patient choice, but it comes close. In the rest of medical practice do not offer carte blanche for patients, but we offer as much as we can for the situation they are in. So a lack of choice is also a disconcerting position. This is how it currently feels with end of life care.
“Yes, your opinion is important. We practice patient-centred care. We value your opinion on all aspects of your care…
…but not that”
You must continue to live. A major choice, to decide that you would like to control your imminent death, is completely off the table. And, if recent surveys are anything to go by, it is a choice that a significant number of people would wish to have. Indeed, as a potential patient, I would want to have this choice. I may not utilise it but I would protest as to why I am not allowed an opinion on how I die. It is my body, my soul, my decision. Isn't it?
I am very sympathetic to the problems. The description of the expansions in Canadian practice do not sound like a system I would want here. The risks of abuse also sound real, including the potential ‘coercion’ of vulnerable people. But they also don't seem new. Such risks would seem a part of many of the complex decisions that are already intrinsic to healthcare. Ensuring that capacity is true, and free from duress, is part of what we regularly undertake. As an example, Jehovah's Witnesses broadly decline blood products, even if this would mean them dying from uncorrected blood loss. This is deeply challenging as a clinician as it feels like we can intervene to ‘help’. It almost seems like the patient has a wish to die in some cases, so ‘correctable’ is the problem. But equally we cannot go against the explicit wishes of an individual - this is not ‘helping’ in any sense of the word. But we can, and do, make absolutely sure that such a momentous decision is one that they truly want - one that is free from external influence. We translate the ramifications; outline the alternatives. If such a wish is truly the case, it is respected.
And other examples, often less significant, are seen throughout our society too. People can live lives that many of us would deem ‘unwise’ at best. Again, I see many such patients who have made decisions that have had adverse costs. But we are a society that prefers such liberty. We do not want the alternative costs of a state telling us exactly what we can and can't do with our lives, never mind our actual bodies. Making some bad choices for ourselves is better than having no choice at all. It is the fee.
Many of these arguments ultimately rest upon the broad concerns of what would happen to our society if we ‘allow this’. This is a valid argument. John Stuart Mill, in his immensely powerful essay “On Liberty” beautifully outlines the importance of individual liberty for ensuring an environment of human flourishing. But even here he highlights the importance of balancing individual liberty with the needs of society. People cannot simply do whatever they wish, regardless of the consequences on others. Many of our personal decisions also have additional consequences for those around us. But I am hard pressed to think of a decision that is quite as personal - that is quite as located within us as individuals. Our death, whilst no doubt impactful on others, especially those close to us, is deeply our own. We are not expected to die due to duress, but should we be expected to live due to duress? Is this categorically different?
And so, I wanted to close with the final lines from William Ernest Henley’s poem “Invictus” - from which I also took my title:
“It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.”
I somehow doubt that Henley would have been a man that would have opted for assisted dying himself. My gut feeling is that he would have found meaning within any suffering that he faced at the end and chose to endure it. There is great nobility in this. But I also suspect that he would have very much told you that it was damn well his choice to do that, or not. He was the master of his fate because of his choices - that requires an ability to choose. I am very much a believer in the value of good palliative care as it is currently. It is often able to bring immense support to those in the final stages of life. This is an incredibly challenging period of life, both for patients and those around them. Whether someone would want assisted dying or not, both choices require a similar amount of courage. But I have, once again, used the word choice.
The discussions on the issue are challenging, hence why it has provoked such debate. And this is even without considering any of the religious perspectives, which I have stayed away from here. It is, as it almost always is, a case of trade offs. With a certain benefit we incur other risks. To me, the importance of individual liberty and choice is what most sways me - it is the hardest principle that we can build upon. As individuals most of us want the ability to choose so that we can decide what is right for us. When it comes to the end, one of the key stages of our lives, I don’t feel we currently have those choices. Despite the many challenges, I think that needs to change.
As the UK Parliament debates the role of assisted dying in the UK, I wanted to share a few reflections. These are my personal thoughts, as a patient, doctor, and human, and not representative of any organisation that I am affiliated with. The patient story here is fabricated from a number of real encounters, not a single case.