Given Friday 9 February 2018
I wish that I was not the right person to give this talk. But, like many, others, I am in this position, and here is my experience.
This is me and my family.
I am lucky to have a stimulating and challenging job with Public Health England. Here, for example, is a laboratory we built and ran in Sierra Leone during the Ebola outbreaks and this is giving evidence on our work as Public Health England to the Health Select Committee.
I also have a full life beyond work, enjoying things like village pantomime. Here I am as the Mad Hatter, and this is in 2015 cycling from Paris to Brest and back again. Preparing last July for cycling from London to Edinburgh to London, my final training ride was 600 km over two days, to the coast north of Hull and back again. This is crossing the Humber Bridge in the early morning on my return. For the first time I stopped a ride part way, catching the train home after only 500 km. I was out of energy and a bit wheezy up the steeper hills. My wife, who is here this afternoon, said "you must be ill, you're very stubborn and you never give up on a ride." I confessed to a slight wheeze and a few specks of blood in my sputum and thought maybe I had a chest infection. So I asked her to listen to my chest.
Unexpectedly she could hear no breath sounds on one side, and the chest X-ray taken two days later looked like this.
Many of you will know that is not a good X-ray. When I saw it that sunny Tuesday morning, I thought that life had probably changed, utterly and completely. The fluid that you can see collected in my chest turned out to be about three litres, perhaps not a bad reason for giving up the bike ride. What's not so clear but showed up in the scans and thoracoscopy a few days later is the 5-6cm mass in my collapsed left lower lung, the fact that the fluid is full of tumour cells, the tumours encasing the outside of my lower left lung, and the metastases in my liver.
I have never been a smoker.
At the time, I thought I was faced with a life expectancy, with luck, of maybe a year or so. With the fabulous care I get from Addenbrooke's, and of course my GP, some positive tumour markers and new biologic treatments, it turns out that I may have three or four years, possibly even a bit longer. But it is completely uncertain, depending on how long the tumour continues to respond to the current treatment (the median is a year though of course I hope for more, and I am now six months in) and for how long we can stay one step ahead of the tumour with the treatments that may subsequently be available.
It was a huge challenge to get my head around, and I decided that my approach should be to try not to worry too much about the future. Moping around will do neither me nor those around me any good, but I thought I could do my best to live well now, whatever that means. At the outset I decided on a fourfold approach:
The thing is that this seemed to work well, except that I found myself worrying time and again, including several sleepless nights, about how I might die. The mode of death that worried me most was the tumour invading a major vessel and unstoppable bleeding into my lungs, drowning in the blood. There were others as well, believe me.
What I realised was that I needed to face the fear of dying up front if I am going to focus properly on living well now. Heidegger is not the best philosopher to quote given some of his associations, but he did have it right when he said: “If I take death into my life, acknowledge it and face it squarely I will free myself from the anxiety of death and the pettiness of life – and only then will I be free to become myself.”
I cannot, of course, predict how I might die, few of us can. But I started thinking that I could focus on living well now rather than worrying about dying, if I knew that I will be able to have some kind of control at the time if I need it. Being in control has always been important for me, and continues to be so now. Of course I realise that control is often illusory.
So I decided I wanted to explore two things.
The first was how to ensure from now on that no one should attempt cardiopulmonary resuscitation on me. Don’t get me wrong, I want all other appropriate treatment. But I don't want to die with someone jumping up and down on my chest.
I was directed to this form. I thought great, and asked where I should sign? But that is the catch - it seems I can't. There is no place for me to decide this, only for others, apparently on my behalf.
Why is this? I am not sure, but I suspect it results from all the different legal judgements on this issue that everyone is so concerned to be able to demonstrate that the patient has been consulted, and that this is a reasonable decision, that there is nowhere actually for me as the patient just to demonstrate that I have taken the decision. The result is that this is not an embodiment of personalised care. That has been lost because we are too scared of possible criticism and legal consequences.
The second thing I wanted to explore was whether I could develop a tacit understanding that at the point that all my reasonable treatment options run out, and if it all is too much for me, I will have the wherewithal to bring things to a conclusion myself. My thinking was that, if I know that there will be an option that gives me some control, I don’t need to worry now about what might happen at that time, and I then probably won’t use it anyway. And I sort of assume I might have a syringe driver and will just need a bit extra available if I need it.
For whatever reason it seems difficult to have this as an open discussion. I have had conversations about how good palliative care is locally which I know is true and is of great comfort, but this doesn’t quite resolve the issue. Various people have mentioned advanced directives to me but although I am sure that I should, I don’t have a clear idea of what they are and how they work. I may be wrong, but they feel more like another attempt at a legal solution to stopping me receiving the most inappropriate or unwanted treatments at the end of life rather than addressing the key issue of what might be good, personalised care for me at that time. And we all know that many of an individual’s specific care needs in these circumstances cannot be predicted in advance.
So what do I now think, six months into my diagnosis of incurable cancer?
Well, fortunately I don’t have to have all the answers because my aim today is to start the conversation. And this is only my story, my view, everyone has a different one. I also recognise that much of what I am saying has been said before, often in a much more profound way. But if you will bear with me I will give you my view on a couple of points.
Firstly, I am clear that as a society we need to be much more open about how we help each other to die well, whatever we mean by that, and in circumstances where every individual will have different needs and different things that are important to us.
And for me, I think we do better if we don’t wait until we are within a few days of the end of our lives before we think about it. My focus now is on living life well, and how I maximise my chances of living well for longer given my illness. Of course it won’t be the same for everyone but my experience is that I can live much better now if I do face this issue well in advance.
There is much here about cultural and societal norms – we seem to have an ever narrowing view of how we should be as human beings, and somehow as a society we have created a climate in which the prevalent belief is that all pain and death are avoidable and wrong – unless we’ve lived to 100 and are remarkably healthy in the meantime of course. We know this isn’t true, but this prevalent belief means that when pain is there, when imminent death is faced, we often don’t as individuals, and certainly don’t as a society, know how to handle it.
In our cultural thinking we are either fit and healthy, perhaps if we are ill we are having life prolonging treatment which we talk of as potentially curative even when it isn’t, or when that has eventually failed (and we see it as failure, losing the battle and so on) we are in palliative care. And of course we try to ignore that prospect for as long as possible so we haven’t thought about what might be important to us when that time does come.
I am greatly in support of striving for even better treatments. I only have a life expectancy of more than a few months because of remarkable developments in the last few years. Facing the fact of my inevitable early death actually helps me to make the most of my life now. Not overly dwelling on it, but acknowledging and thinking in advance about how I might handle it.
This of course leads to the issue of assisted dying. Now I know that there are very strong views on this issue, and I have no special knowledge above people who have thought about this for several years. As I am introducing this session I will give you my ill-formed and probably ill-informed thoughts on the issue, and hope that I won’t get somehow labelled as being on one side or other of the debate in doing so.
I spent my student elective working in palliative care, and the approach I saw, and I always thought was right, was essentially that you could make sure that a patient has sufficient pain control - morphine or other treatment - to keep them symptom free. Sometimes that would hasten their death by a short time but that was fine provided the main reason for treatment was to make someone comfortable.
It seems really difficult to have this conversation openly now, probably because of some high profile cases and the Shipman effect, and many of the legal issues and loss of trust that has followed.
And I also know that, when I have been most worried about what might happen to me, thinking that I might have some control at the end of my life allows me to focus on living life well now. I will probably be able to make that happen as things currently stand because of my knowledge of the system, but it is apparent to me that this is not the same for everyone, especially those with degenerative neurological conditions such as motor neurone disease. So to enable choice at the end of life, taking account of individual care needs, may well need a change in approach, and I do think that might include opportunities for assisted dying.
But I have real concerns about this.
I worry it will promote the delusion that somehow we can all have a perfect death, and that of course it is the role of the medical profession to provide it for us all. A further medicalisation of death and placing of completely unrealistic expectation on doctors and the healthcare system.
Additionally, if we go down this route without dealing with the underlying issues, the need for a wider societal acknowledgement and acceptance of our own mortality, the need to face up to it and think carefully about it, I fear that we will end up in a similar position to the one I described with the Do Not Resuscitate issue. We will have ever more complex legal frameworks around the opportunities for assisted dying, the need to demonstrate so many different things that we try to predict in advance, that we will once again miss the point of putting the individual and those close to them at the centre of everything we do, and carefully, thoughtfully navigating the way through the end of life with appropriate care and support. Instead of thinking about how society, reflected in our practice of medicine and healthcare can perhaps rediscover the importance of providing comfort and succour, and accompanying the dying.
A prominent medical law expert has said: “The law must provide an answer that may often be no more than the least bad answer. And that answer will often lack a single coherent rationale, but draw its force from different and overlapping considerations. The law will rarely resolve moral controversy.”
So I very much look forward to the discussion this afternoon, but my ask is that whether or not we should have a change in the law on assisted dying should not be our sole, or even our main focus. The focus of debate on assisted dying, advanced directives, and Do Not Resuscitate discussions seem to me to be symptoms of a much deeper challenge, and that just seeing this as an issue of which side you are on, or who we should blame for the difficulties we have in dying well, misses the point.
My own father spent the last days of his life sitting in a chair pretty much naked below the waist with a bowl beside him to deal with his incontinence, with moments of fractiousness as his awareness and consciousness waned. I later read the discharge letter written a few days before his death which described perfectly all his different medical problems and their individual treatments, but no-where said that here was an 87 year old man who thought he was close to dying and just wanted to go home. He did not want assisted dying, far from it, and he did manage to die at home. But his, and my mother’s principle need, was for support to enable this to happen, and that unfortunately was not the focus of the services available.
I would like the discussions we have this afternoon to focus on how to help people like me, which of course is actually all of us, to be able to approach the end of life in the way that works best for us individually. This is me now, still cycling and working and trying to spend time with those close to me. I had hoped to be a solid stable figure in our offspring’s lives for many years to come. This will not now be the case, so I think about what I can still give them.
It might be unrealistic, but when the time comes, what I want is that the last gift I can give to my family and those closest to me to be that they can say "he died well, and that came at the end of a life in which he made a difference to those around him - he lived well too.” I hope that the discussions this afternoon will be a step on the way to making this a reality for more of us than is currently the case.