By Kate Womersley
One of Britain’s foremost polymaths, Raymond Tallis is a vocal supporter in the campaign for assisted dying to be legalized in the UK. He has a uniquely broad perspective on this issue as a medical doctor (specializing in geriatrics and clinical neuroscience), philosopher, critic, poet and novelist.
KW: You changed your mind about the ethics of assisted dying from a stance of opposition to one of support. Was there a particularly persuasive argument or piece of evidence which influenced this?
RT: My position shifted about 8 years ago. There were two things that changed my mind. Firstly, the facts of which I had been ignorant. Secondly, the arguments (clinical, legal and ethical) which I hadn’t thought through. In 2003 when I was the chair of the Committee on Ethical Issues in Medicine at the Royal College of Physicians in the UK, we did indeed look at Lord Joffe’s first Assisted Dying for the Terminally Ill Bill, and I’m afraid that we looked at it rather superficially and in a prejudicial way. As the chair of the Committee, I wrote the report concluding we could not support the Bill. Lord Joffe wrote to me and said that most of the arguments in the report were wrong and didn’t seem to add up and I did not seem to have taken account of all the facts. I went to see him, was persuaded of the truth of what he said, and felt very ashamed. I asked the college if we could revisit this issue. We did, and came to a different conclusion and I have remained at that different conclusion ever since. The College, on our advice, adopted a position of neutrality. Under another chair who has strong religious beliefs, the college has gone back to a stance of opposition on assisted dying from one of neutrality.
On the ballot paper in Massachusetts for the November 2012 election, Question 2, the ‘Death with Dignity’ initiative, was concerned with whether or not assisted dying should be made legal. It was rejected by 51% of the vote. Do you think that the legislation in Oregon [where assisted dying is legal and has been for 10 years] has been a success?
I do think Oregon is a success. Just to remind ourselves, it is about assisted dying for people who are terminally ill, who are mentally competent and who have expressed a settled wish to die. They will have had, one confidently assumes, the best possible care.
There are two measures of Oregon’s success. It is a law which is actually used (about 0.2% of deaths in Oregon per year are assisted in this way), and for every person who actually uses a prescription to assist them to die, about 100 people discuss assisted dying with their doctors. So, for many people it provides an emotional assurance. The second is that the anxieties that were raised in advance of the bill being passed don’t seem to have materialized.
People were terribly worried about Oregon’s legislation in three main ways. Firstly, that it would get out of control: that we would start with half a dozen people having assistance to die and then things would progress until assisted dying would become the norm, with people being pressured to seek assistance. That simply hasn’t happened. Initially the law took some time to settle and so there was a gradual rise in the number of people who availed themselves, but that has remained at 0.2% of the population.
The second anxiety was that there would be a huge pressure to go beyond assisted dying for the terminally ill to assisted dying for those with chronic disability, right through to those who are tired of life, or indeed people whom other people are tired of. That also hasn’t happened. There has been no pressure to extend the law even a decade after it was introduced.
The third anxiety was that those who avail themselves of assisted dying would be people under pressure, vulnerable and at risk of being regarded, as it were, to be “superfluous to requirement”. And I, as a geriatrician, would have been extraordinarily worried about that. But Margaret Battin did a very good study looking at the demographics of people who avail themselves of assisted dying. Several things come through: one is that those who use assisted dying are people who are economically quite advantaged; secondly, they are people who, to judge by their psychology, are used to getting their own way; and thirdly, older people are not over-represented among those who have an assisted death. Of course the vast majority of natural deaths occur anyway in extreme old age and so those who avail themselves of assisted dying will be on average quite old, but not as old as those who die naturally. So, by all of these criteria the law has been used and proved useful, and the anxieties people had in advance have not been realised.
So why are other states not following suit? Massachusetts, which is thought to be a liberal and progressive state in its healthcare delivery, rejected it – a slim rejection, but a rejection nonetheless.
I’m not au fait with the situation in Massachusetts, although I’m under the impression that there was a very strong Catholic lobby against assisted dying. What I can give you is a much more reliable account about why in the UK we’ve been so slow to adopt assisted dying. There, it is very clear that those who oppose assisted dying for religious reasons are over-represented in the debate. One extraordinary example relates to a survey which revealed that two thirds of doctors felt that their representative bodies (such as the Royal College of Physicians and the British Medical Association) should adopt a neutral stance towards assisted dying. Not indifference, but studied neutrality, because it is appropriate that this is an issue which should be decided by society at large and not by paternalistic doctors. The survey found that 62% of people felt that assisted dying should indeed by regarded as a matter for which the representative bodies should be neutral.
This triggered an editorial in one of the leading medical journals in the UK, The British Medical Journal, inviting readers to vote as to whether they thought their representative bodies such as the BMA should be neutral. It produced quite a different result: 84% were against neutrality as opposed to 62% being in favour of neutrality. This prompted what you might call a bit of forensic psephology. The BMJ looked into what had happened and they discovered three things: firstly, not all those who voted were doctors; secondly not all those who voted were actually from the UK; and thirdly some people took to voting early and voting often, including one person who opposed neutrality from Iceland and voted 168 times.
There is a lot of fancy footwork that goes on in well-organised lobby groups which oppose assisted dying. They tend to be more passionate and organized than the majority of supporters.
Assisted Dying is the most researched area of bioethics today. What are the pressing questions in the field which, if answered statistically, would sharpen our focus on the subject?
I think there are three burning issues. We have general answers to them, but it would be nice to have more facts.
Firstly, the question of mental capacity in this context. Some people argue that it is not possible to judge the mental capacity of those who are terminally ill. They might be depressed for example. After all, if you are dying you would be depressed. But would this impair your capacity to make a decision and know your own mind? My own feeling is of course it doesn’t. You can still be depressed for good reasons and have the capacity to make a decision.
The second area is the proportion of deaths that are bad deaths. I have a figure from one palliative care worker who thinks that 15% of deaths are bad. Evidence for that proportion of deaths would certainly be a very important result.
The third thing is to continue to keep a close eye on jurisdictions where a bill like the one that we hope might happen in the UK has been passed and enacted. That is why Oregon is such a wonderful gift: it has given us 10 years of free data.
Oregon’s clause which states that only patients with ‘six months or less to live’ are eligible for an assisted death presumably puts a great weight of responsibility on the accuracy of doctors’ prognoses. Do you think doctors might feel pressurized to fix their predictions in certain directions?
Not really. First of all, doctors tend to be over-optimistic. When they might expect a patient to live for 6 months, they usually live for a rather shorter period. Secondly, 6 months from expected death is when a person is eligible to apply for assisted dying, but that doesn’t mean that the prescription is actually cashed. Thirdly, we make lots of life-shortening decisions on the basis of predictions. For example, the decision for a person not to have cardio-pulmonary resuscitation would be based on an estimate or prognosis of benefit to the patient, including life expectancy. Or other examples, as when discontinuing renal dialysis, or switching off a ventilator is being considered or using the so-called ‘double effect’ (where one’s actions will result in an outcome usually avoided). In all of these situations you are precisely making prognostic decisions associated with perhaps shortening a patient’s life. So there is nothing unique in this respect about assisted dying and no reason to anticipate that doctors would have a particularly pessimistic assessment of the prognosis in this context
The words used to describe assisted dying are often highly charged. Do clinicians have a duty to keep language neutral, and how might neutrality be defined and achieved?
Calling assisted dying ‘murder’ for example is not ethical. I do believe there is a difference between assisting someone who is terminally ill to die, and going into a school and shooting people. Someone who can’t see that difference has a rather blunted ethical sensibility. It is ethically important for doctors not to speak in that way.
My feeling is, however, that it is entirely appropriate for individual doctors to be quite passionate about this issue, as long as they stick to the facts and the arguments. But it is not appropriate for their representative bodies to take up a position one way or another because those representative bodies are not representative of the division of opinion within their membership. I also don’t think it is the role of doctors to assume authority in areas that go beyond their clinical expertise.
Are “dignity, mercy and compassion” appropriate terms then for both sides to be using?
Well, I singled out murder as a very emotive term that I would disapprove of. I think that both parties are entitled to feel that they have “dignity, mercy and compassion” on their side. I plead guilty as charged about using words such as “compassion”.
How can doctors talk through the options of assisted dying fairly with their patients? Should they be allowed to express their own moral views?
At present, doctors in the UK are not allowed to talk about assisted dying with their patients and that is probably going to be upheld by the General Medical Council. The GMC lists a whole series of ethical statements at the beginning of any document it produces, such as “you must listen to the patient”, “you mustn’t let your beliefs get in the way of their care”, “ you must respond to their wishes” etc. But then will state, I suspect, to paraphrase, that “if they start talking about assisted dying walk away covering your ears”. This seems to me to be wrong.
At the moment doctors are not allowed to discuss the question and could be brought before a disciplinary committee with threat of suspension if they do. Yet if in the future assisted dying became legal, it should be up to the patients to initiate discussion of assisted dying. I think it would be wrong for a doctor ever to start that conversation. The doctor should say, “I know you’ve got this illness and are having a terrible time, we can do this for this symptom and that for that sympton”, and then give a frank account of what is likely to happen. If the patient initiates the discussion, the doctor should discuss why the patient wants assisted dying, whether there are any alternatives, and make sure that the patient has a full understanding of the options. In most cases, other alternatives will be chosen, but there will be a significant minority of cases where assisted dying will be an essential component in end of life care.
If, as you say, assisted dying should be discussed on the patient’s initiative, is there a concern about access to information?
Probably not. Assisted dying will be debated publicly very loudly and people will be very aware that it is an option. It is not a complex option, like thinking about whether there is a special drug available in only one particular part of the country which some people have heard about and some people haven’t. I think assisted dying is a straightforward notion which would, as it were, enter the collective consciousness. Patients wouldn’t be deprived of that option when they wish it and need it simply by not knowing that it was available. It may be the case that any law that is implemented will take time to bed down, but only because patients may not think of it, and while we build up a sufficient number of doctors who are willing to be involved.
If a doctor were to be concerned about their own involvement, how would opting-out work in practice?
We have the model of Oregon. There would be a conscientious objection clause, of course. But it would be very important that a doctor who does conscientiously object to assisted dying, refers the patient rather than lets things drift. Ignoring the situation would be unethical and would be actively misleading the patient.
Rather like how abortion worked in the past?
Given that 80% of the general public surveyed in the UK regularly agree that patients should be able to end their lives given specific circumstances, what do you predict are going to be the short-term and long-term changes to the law?
There will be, at the very least, two steps. The first is Lord Falconer’s Private Members’ Bill being tabled in the House of Lords in May this year, though we’re not certain of the exact timing. If that bill gets passed (and it’s looking reasonably hopeful as fifty percent of the peers whose views are known are in support), then the House of Commons is obliged to debate it. In the Commons there is a steeper hill to climb. At present, about two thirds of members of parliament are opposed to assisted dying. One could be cynical and say that unlike in the House of Lords where the members do not have to be elected, there is absolutely nothing in it for an MP to risk being involved with assisted dying. This is not because most of their constituents are not in favour of it, but because those people who oppose will be very noisy indeed. If that MP has been voted in by a small margin, it may mean that he or she may not get re-elected. Most people say the law will change eventually, inevitably, but maybe not the first time it comes before the House of Commons.
You have said that medicine should aspire to match an individual’s health span with their life span. Do you think that these values are converging, even in light of increasing prevalence of disease states, such as obesity?
In the case of obesity America is doing the research work for us. They are ten years ahead of the UK in the obesity stakes, although a piece of recently released data suggests that over 20% of males in the UK are obese. But it is difficult to know how obesity will affect the relationship between the life span and health span because people have more and more effective treatments for the consequences of obesity, whether it’s cardiovascular disease or whether it’s cancer. So, I think the jury is out about what obesity will do a) for overall life span, b) for health span and c) for health span in proportion to lifespan.
I have always thought that the aim of medicine is to make the human body less inhuman. Our human lives are pitched on this pre-human object called the human body which never had us in mind at all. As the philosopher Maurice Merleau-Ponty would say, our bodies are pre-personal, and in many ways impersonal. Medicine should aim to make our bodies personal until the very end of our lives. I think that this is an achievable end and assisted dying would be a very small but important part of this. There are many ways of postponing the onset of morbidity and disability until you get to an age at which you die quickly and easily at once.
What role do doctors have to play in our attitudes towards dying, and should they offer reassurance about the end of life?
Doctors give hope beyond any practical help they may offer. But there comes a point when giving hope is a rather cruel thing to do. I think one of the difficulties of being a doctor is to decide the point when being cheerful and hopeful should give way to being realistic. There is a point at which being reassuring becomes lying. There are traditions of course, in which if a doctor gave a poor prognosis to a patient that would be regarded as unethical. For a long time in Japan, to tell someone they had cancer or were dying was regarded as grossly unethical. It is often very difficult to find the middle way between deceiving patients and forcing upon them information they don’t want.
We are often told that death is a taboo subject, but I honestly don’t think it is. People talk about death a lot and they talk about dying. Many people are much more frightened of the process of dying than death in secular societies. For those of us who think death is the end, it’s the dying that worries us more. And this is true for a medic such as me: I’m a patient as well as a doctor.
Given that reportedly 80% of medical students don’t think they get enough ethical training, what further preparation could be introduced and what form might this take so that it is useful in real-life situations?
I’ve always felt that the sign I’ve made an ‘ethical decision’ is that I’m uncomfortable with it, don’t know whether it is right and will never know whether it is right. This didn’t change as I became more experienced and I found that the only way to get rid of discomfort about an ethical decision was to move onto the next decision that made me uncomfortable. As for ethical training, students (and qualified doctors) need to be reminded of the principles of biomedical ethics and the principles of decency and human behaviour, from courtesy to respecting people’s autonomy. This goes without saying. But I found that those principles were not sufficient to take me all the way to a decision in the particular, indeed singular, situations of medical practice. I think the best training would take the form of ‘conversational ethics’. I wished in my years as a doctor that we medics and nurses had had better conversations with each other about issues that we felt very uncomfortable about. These conversations should capture things in the interstices between the big principles, whether legal or ethical.
I’m not too sure that more ethical training separated from everyday practice would be useful. More ethical discussion at the time issues arise, more honest and open discussion of concerns and of the implicit or intuitive principles one is mobilising to address them – yes. And more involvement of people who are not doctors and nurses to guard against group-think that would lead to blindness to one’s own prejudices would also be invaluable.
Brian Goldman’s 2012 TED talk about perfectionism in medicine outlines doctors’ reluctance to speak with one another about ethical decisions and the professional mistakes they have made. How can these kinds of conversations be encouraged?
I think that this is the central ethical question: admitting, “I don’t know whether I did the right thing here”, or indeed that you made a mistake, are vital. Admitting also that one’s not omniscient. When I finished my career as a doctor after 37 years, I was much more happy to say I didn’t know, let’s look it up, and who’s got the iphone? As a junior doctor you had to be all-knowing and have opinions that trumped facts. I think things have improved in that respect. But there is still a long way to go. We make imperfect decisions, and we can only improve them by discussing them with others.
Does medicine have important lessons to learn from the humanities, and can such interdisciplinarity be ‘built in’ to medical practice?
I think the biggest impact of the humanities is in society at large, and clearly doctors and nurses are part of that society. The idea that you can build-in humanities, that there is something like ‘medical humanities’ which is a discrete bolt-on addition to the curriculum rather diminishes its significance and makes it just another thing to be examined. One hopes that medical professionals are people who do engage in the arts in every respect, who are aware of the history of their subject, are aware of the implicit and explicit politics, of the proper and improper use of professional power. The humanities should not be something separate within medicine but part of the culture within which medicine is practised.
Is there a work of literature which has helped you in your practice as a doctor, and more particularly, illuminated the subject of death?
If I had to choose my ‘desert island’ medical book, it would be The Magic Mountain by Thomas Mann for two reasons. Firstly, it celebrates the awesome mystery of the human body and the extraordinary nature of the medical gaze on that body. The character of that gaze is brilliantly illustrated when the hero, Hans Castorp, receives the chest x-ray of the woman he is in love with. He sees through her flesh to the skeleton within. And the other reason I think it’s such an important and instructive novel is that it indicates how easy it is to assert power over a patient and to abuse that power without even wanting to, especially in institutions which have the authority that comes from knowledge or the pretence to it.
Are there any specific writings you would recommend for a general reader which further our understanding about assisted dying?
Tess McPherson’s account of her mother, Ann McPherson’s, death, which was featured in the BMJ should be read by anyone who wonders whether this issue is important. It must have been agony to write, but it has a profound effect on anyone who reads it. Ann and her daughter were able to view Ann’s death objectively and subjectively. She rose above the sea of symptoms to observe them dispassionately and her experience could leave no-one in doubt that the law needs to be changed.