Tony Nicklinson and a doctor's take on assisted dying

A GP lays out his reservations about the potential legalisation of euthanasia

It would take the proverbial heart of stone not to feel for Tony Nicklinson. Paralysed from the neck down after a stroke, the father of two is fighting a case in the High Court to argue that a doctor should be allowed lawfully to end his life. He has described his life since the stroke as "dull, miserable, demeaning, undignified and intolerable" (he communicates using a computer that converts his eye movements into speech).

The subject of assisted dying has been played out many times in the media. But it has, over the years, become a subject only commented on by those who want the right to die, or the Great and Good in the House of Lords and other august institutions. I feel there’s a voice that’s conspicuous by its absence: that of those at the coal face upon whom it would be incumbent to carry out our wishes should we decide we deserve the right to die. So I emailed Dr Nick Ramscar, a GP working in the South of England, and asked him his opinion.

Dear Alan,

The debate around and assisted dying is one that’s relevant to everybody. None of us come to this debate tabula rasa. We all bring the baggage of our personal beliefs regarding the likelihood of an afterlife. Our views are coloured, sometimes overwhelmingly so, by any deaths we may have witnessed, and the comfort or otherwise that accompanied them. We perceive, with varying degrees of clarity, what our own attitude will be when we follow Iris Murdoch and sail into the dark. We lie along a spectrum – some, like John Donne, are so buoyed up by faith that they don’t fear dying, agreeing that “poppy or charms can make us sleep, as well and better than [death’s] stroke”. Others might join Philip Larkin in staring in red-eyed terror at the dawn, a sleepless night having brought them one day closer to oblivion. I suspect most of us are somewhere in between, and that our exact position is changeable.

Assisted dying is also called physician-assisted suicide, and its legalisation is the declared aim of groups such as Dignity in Dying that see a natural extension from the choice we enjoy in other areas of our lives to the timing of our ends. Their website provides a clear definition of assisted dying. It is: “where a doctor prescribes a life-ending dose of medication to a mentally competent, terminally ill adult at their request, and the patient then chooses to administer the medication themselves”. I’d like to discuss the five things I find alarming within that short statement.

Firstly, consider the suggestion that a doctor should write an order for the lethal drugs. I am in the final stages of the training for general practice, an area that would be hugely affected by any change to legalise assisted dying. The idea of writing a lethal prescription is something I struggle to reconcile with the motives that brought me to a medical career. Surveys of doctors’ attitudes have repeatedly shown that this is the majority view. Even if the prescription were to be made out by somebody else, a government agency perhaps, it is unrealistic to think this could be done in isolation from the mainstream medical care of the patient – and their relatives. The patient’s GP, and their specialists at the hospital, would be called on to at the very least confirm the diagnosis and likely prognosis. There would without doubt be cases where patients’ relatives asked the doctors whether they thought assisted dying was the right choice for the patient. We would become complicit, if only in failing to discourage it, even if a different signature was on the prescription.

An implicit assumption in the concept of assisted dying is that a prescription should be written by a doctor who knows the patient well. The death of a patient is something that affects doctors more deeply than I suspect many people know. To ask a physician to deliberately end the life of someone they may have known for decades is not a trivial thing, any more than it would be for any other person. The BMJ recently published a tragic letter from a Dutch doctor, profoundly affected by the times she had been involved in deliberately hastening death. An assumption that a detached attitude could be taken does not marry up with my own experience, nor can I imagine it would be any easier for any of the doctors I have worked alongside.

The second issue raised in this definition is that of mental competence. This is an incredibly complex concept glossed over with disquieting speed. Competence is not binary; an individual cannot be said to be either competent or not.  It’s possible to be competent to make decisions regarding some matters, but not others; a person might be able to decide matters for themselves in their own finances, but not to weigh up new and complex medical information. Nor is level of competence fixed – a person may gain or lose, as the stresses of their illness wax and wane. The introduction of the Mental Capacity Act went some way towards addressing this with its increased emphasis on making patients’ views known well in advance. Unfortunately, it’s not possible for a person to predict what situations they will find themselves in, nor how they will feel when they get there. In addition, it remains the case that it’s possible to put in place an advance refusal of certain procedures, commonly cardiopulmonary resuscitation, but it’s not possible to make a demand in advance for certain treatments – including lethal prescriptions.

Immediately following on from this thorny question of competence is an equally difficult phrase, “terminally ill”. The gradations of meaning concealed here are enormous. Firstly, it strikes me as presumptuous to suggest there is a possibility of legally defining when a patient’s suffering is enough to qualify. And why should those with non-fatal afflictions be excluded? For one person, sudden blindness might be an affliction that would make life unbearable, whilst another might find plenty to take pleasure in despite disseminated liver cancer. The second could be labelled terminally ill much more easily than the first, but can we really say whose pain is greater? I do not believe we can reliably enshrine in law a threshold or set of circumstances that would constitute unacceptable suffering. Additionally, this definition seems to exclude children. Where they are unable to decide on their own care, we ask the parents. Could any civilised society put a parent in the position of deciding whether their child should be killed?

The implication that doctors can say with certainty when a person is terminally ill is flattering to the profession, but unfortunately wrong. Any honest clinician will admit to occasions when they have been astonished by patients living long after it seemed that death was imminent. This has happened in my own practice and, most worryingly, on occasions when patients had been placed on the Liverpool Care Pathway (LCP). The LCP is an invaluable tool in terminal care, an acceptance that the focus of care has shifted from curative to palliative. The patient’s comfort is the top priority, and potentially distressing investigations or treatments are discarded. The LCP is as close as it is currently possible to get to a signed statement that the patient’s medical team believe life expectancy is measurable in days. These are exactly the patients who might be the most attractive candidates for assisted dying. Yet many doctors (myself included) have seen patients in this position rally, and subsequently be taken off this pathway of care. The LCP allows us reversibility. Prescribed death does not.

The fourth point is the idea that a prescription should only be made at the patient’s request. This is a separate issue from competence; let’s assume for the moment that our theoretical patient is competent in all areas of decision-making. This doesn’t mean we can safely assume that the request is the product of a long process of unhurried reflection. Almost every patient consultation contains varying degrees of hidden agenda, and doctors vary in their skill in uncovering this. Usually the consequences of this are not disastrous, but in this case they could be fatal. To anyone who doubts that such a momentous decision as requesting assisted dying could be made on a whim, I ask them to consider the emergency departments across the country full of overdose patients who “didn’t really mean it”.

Perhaps the most practically troublesome part of that short definition comes at the end. The patient retaining control and choosing the moment of death is of course central to the whole thesis of assisted dying. But on a practical level, is this aim manageable? Either the doctor must be on hand to physically provide the drugs at the exact moment of the patient’s choosing, or a prescription must be given that will allow the patient to collect their lethal medication, to keep at home and use when the moment seems right. The first option is unlikely; medicine is moving to shift patterns and the patient’s own trusted doctor may not be “on-call” at the critical moment. This means either that the patient would have to wait until their doctor became available, making a mockery of the whole aim of maximising choice, or a doctor who the patient may never have met before might have to visit out-of-hours. The second option, of leaving deadly poison in the patient’s house, is even less attractive, for obvious reasons.

I hope this message doesn’t sound unsympathetic to the strains that patients and their families face. My stance is one of cautious opposition – I am aware that no branch of medicine, including palliative care, can hope to be perfect. Even John Donne, who saw death as disarmed by the resurrection of Christ, also knew that this did not make it free of consequence. I find much more to admire in his recognition that we are all irreversibly interconnected, and that “each man’s death diminishes” those around him. None of us lives in isolation, and none of us can die this way either. A natural death, with the patient properly supported, seems infinitely preferable to the uncertainties and danger of medically sanctioned self-destruction.

Yours,
Nick

***

Dear Nick,

Thank you for taking the time to respond to me. Allow me to peel the shroud away a little. A while ago I told an elderly relative, now in hospital, that I was getting married. She was absolutely delighted. A few minutes later she asked who I was. She is, at the moment, quite happy with life, if occasionally confused. But I worry that one day this won’t be the case. I agree with much of what you say. But I’m biased. As you point out, so are you, and so is everyone else. Nevertheless, your email gives rise to a number of questions.

1. There seems to be a sizeable minority of people using the Dignitas service at present. Doesn’t that mean that we essentially have assisted dying in Britain anyway – and it isn’t particularly well regulated?

2. Much of your argument centres on how hard a change in the law would make your job. Pouring myself a large glass of Devil’s Advocaat - how would you respond to campaigners saying: “We're not naive - we know doctors have an emotional bond with their patients, and isn't it just as hard for them to watch powerless while they suffer? Is it not, in fact, disingenuous not to mention that state of affairs?”

3. I wonder why choice should be denied on this when it’s given with other treatments. I understand you can have a Caesarean Section even if you’re advised otherwise. If patients are deemed competent to make calls on something this major, why not death?

4. Would you agree that there’s a difference between a suicide attempt and a protracted process? Having demonstrated the subjective nature of some of your work (e.g. diagnosing terminal illness), you've now cast yourself in the role of plain facilitator with no mention of the consultation you'd provide.

Yours, 
Alan

***

Dear Alan,

Sorry to hear about your relative, and of course personal involvement brings a new perspective. I have a very similar case unfolding in my own family at the moment.

To answer your questions:

1. In general terms, I’m not convinced by the argument that because people manoeuvre around the law, it should be revised to accommodate their actions. To give a specific parallel example in medicine, I am sometimes asked to prescribe medicines that are not available in this country because they are of dubious benefit or known to be harmful. If I am unwilling to provide a prescription for drug X because of this, I know that despite my advice some of my patients will buy it over the internet. That doesn’t incentivise me to provide what I believe to be an inappropriate treatment, and I don’t think it should influence any subsequent decision on licensing that treatment in this country.

2. I certainly don’t think we should avoid things because they are difficult, and I hope that’s not how my message comes across. Involvement in care of the dying can as you say be hard, but also profoundly rewarding. Through a willingness to develop in this area, the UK has become a world leader in palliative medicine - and for that reason doctors in this country are rarely, if ever, “powerless to help”. The phrase “there’s nothing more we can do” has no place in modern palliative medicine – or medicine generally.

3. This is an important misconception to clear up. A competent patient can refuse treatment, but cannot specifically demand any prescription or procedure. Ideally of course, doctors should present appropriate choices to their patients, so that a mutually acceptable plan can be agreed.

4. There’s some truth in this. Certainly I am sure that, should the law change, any process would have safeguards built in to try to identify factors such as coercion, dementia, and undiagnosed depression. But I am not convinced that these safety features could be made infallible. For that reason, even if the element of impulsivity were removed, there would still be life-ending decisions made on unsafe grounds. The duration of the decision process – a solitary desperate impulse or a legally imposed timetable – doesn’t alter that.

Yours,
Nick

***

Nick and I left our correspondence there – we’ll continue it in person at some point. To provide a summary of my opinions since this discussion would be to sell the issue short. There is no right and wrong, only varying weights of importance one can attribute to each argument. I hope readers found the discussion interesting.

The Dignitas clinic in Zurich, Switzerland. Photograph: Getty Images

Alan White's work has appeared in the Observer, Times, Private Eye, The National and the TLS. As John Heale, he is the author of One Blood: Inside Britain's Gang Culture.

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The Women's March against Trump matters – but only if we keep fighting

We won’t win the battle for progressive ideas if we don’t battle in the first place.

Arron Banks, UKIP-funder, Brexit cheerleader and Gibraltar-based insurance salesman, took time out from Trump's inauguration to tweet me about my role in tomorrow's Women’s March Conservative values are in the ascendancy worldwide. Thankfully your values are finished. . . good”.

Just what about the idea of women and men marching for human rights causes such ill will? The sense it is somehow cheeky to say we will champion equality whoever is in office in America or around the world. After all, if progressives like me have lost the battle of ideas, what difference does it make whether we are marching, holding meetings or just moaning on the internet?

The only anti-democratic perspective is to argue that when someone has lost the argument they have to stop making one. When political parties lose elections they reflect, they listen, they learn but if they stand for something, they don’t disband. The same is true, now, for the broader context. We should not dismiss the necessity to learn, to listen, to reflect on the rise of Trump – or indeed reflect on the rise of the right in the UK  but reject the idea that we have to take a vow of silence if we want to win power again.

To march is not to ignore the challenges progressives face. It is to start to ask what are we prepared to do about it.

Historically, conservatives have had no such qualms about regrouping and remaining steadfast in the confidence they have something worth saying. In contrast, the left has always been good at absolving itself of the need to renew.

We spend our time seeking the perfect candidates, the perfect policy, the perfect campaign, as a precondition for action. It justifies doing nothing except sitting on the sidelines bemoaning the state of society.

We also seem to think that changing the world should be easier than reality suggests. The backlash we are now seeing against progressive policies was inevitable once we appeared to take these gains for granted and became arrogant and exclusive about the inevitability of our worldview. Our values demand the rebalancing of power, whether economic, social or cultural, and that means challenging those who currently have it. We may believe that a more equal world is one in which more will thrive, but that doesn’t mean those with entrenched privilege will give up their favoured status without a fight or that the public should express perpetual gratitude for our efforts via the ballot box either.  

Amongst the conferences, tweets and general rumblings there seem three schools of thought about what to do next. The first is Marxist  as in Groucho revisionism: to rise again we must water down our principles to accommodate where we believe the centre ground of politics to now be. Tone down our ideals in the hope that by such acquiescence we can eventually win back public support for our brand – if not our purpose. The very essence of a hollow victory.

The second is to stick to our guns and stick our heads in the sand, believing that eventually, when World War Three breaks out, the public will come grovelling back to us. To luxuriate in an unwillingness to see we are losing not just elected offices but the fight for our shared future.

But what if there really was a third way? It's not going to be easy, and it requires more than a hashtag or funny t-shirt. It’s about picking ourselves up, dusting ourselves down and starting to renew our call to arms in a way that makes sense for the modern world.

For the avoidance of doubt, if we march tomorrow and then go home satisfied we have made our point then we may as well not have marched at all. But if we march and continue to organise out of the networks we make, well, then that’s worth a Saturday in the cold. After all, we won’t win the battle of ideas, if we don’t battle.

We do have to change the way we work. We do have to have the courage not to live in our echo chambers alone. To go with respect and humility to debate and discuss the future of our communities and of our country.

And we have to come together to show there is a willingness not to ask a few brave souls to do that on their own. Not just at election times, but every day and in every corner of Britain, no matter how difficult it may feel.

Saturday is one part of that process of finding others willing not just to walk a mile with a placard, but to put in the hard yards to win the argument again for progressive values and vision. Maybe no one will show up. Maybe not many will keep going. But whilst there are folk with faith in each other, and in that alternative future, they’ll find a friend in me ready to work with them and will them on  and then Mr Banks really should be worried.