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.

Photo: HANNAH MCKAY/REUTERS
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The lure of Lexit must be resisted – socialism in one country is a fantasy

Much of the left still must learn that the existing British state is the prison of their hopes.

Lexit, the left-wing case for leaving the EU, is rising from the dead. Its hopes were best captured in 1975. In the run up to the first referendum on EU membership, E P Thompson, the historian of the early English working class, published his clarion call to leave what was then called the Common Market. Doing so would see “Money toppled from power” as Britain moves “from a market to a society”.

“As British capitalism dies above and about us”, Thompson asserted, in a revealing passage worth quoting at length, “one can glimpse, as an outside chance, the possibility that we could effect here a peaceful transition – for the first time in the world – to a democratic socialist society. It would be an odd, illogical socialism, quite unacceptable to any grand theorist…  But the opportunity is there, within the logic of our past itinerary. 

"The lines of British culture still run vigorously to that point of change where our traditions and organizations cease to be defensive and become affirmative forces: the country becomes our own. To make that leap, from a market to a society, requires that our people maintain, for a little longer, their own sense of identity, and understanding of the democratic procedures available to them…”

Thompson spoke for the majority of the British political left at the time, from the then numerous Communists and Trotskyists through to the conservative-wing of the Labour Party and trade unions via the Bennites. All were hostile to sharing sovereignty with the capitalists running the rest of our continent. All believed that just as Britain was the birth-land of the industrial revolution so it could create a unique socialism across its land by going it alone.

I expected a resurgence of a similar left anti-Europeanism in last year’s referendum, and a renewed advocacy of a British road to world progressive leadership. Instead, with few exceptions, the inherently right-wing nature of Brexit bore down on advocates of left-wing politics. Owen Jones, with his family roots in that past history, flirted with Lexit. He has described how his comrades across Europe, such as those in Podemos in Spain, were appalled at the prospect and he wisely backed away.

Labour Leave was mainly business-oriented in its call for UK democracy. The decisively working class vote for Brexit was neither socialist nor social democratic. It simply and understandably rejected the all-party consensus that things should carry as hitherto. Given a chance to say what they thought of ‘the whole lot of them’, millions of Labour voters displaced their disgust with Westminster onto the EU.

The event that resuscitated the Anglo-Lexiteers was not the referendum result but this year’s UK general election. On the summer solstice, two weeks after its astounding outcome, the Lexit-Network posted its first blog entry. It’s aim to help steer a future Corbyn government. In parallel, the New Socialist website, with its strapline for “robust debate and intransigent rabble rousing”, launched a week before the election, also gives voice to Lexiteers.

Prominent among them are sirens from across the Atlantic: Joe Guinan and Thomas M. Hanna and Harvard’s Richard Tuck. They draw on the outstanding work of Danny Nicol who has shown how the EU’s constitutional structures embed neoliberalism. Their arguments – often published in the New Statesman and openDemocracy – pre-existed the referendum. But only as opinions. Now they are gathering energy with the prospect of a Corbyn-transformed Labour Party taking power.

The underlying dream of ‘socialism in one country’ may be potty. But it is essential to recognise the core issue that could give legitimacy a left-wing call for Brexit, a democratic argument anchored on the moment that changed British politics, the launch of Labour’s 2017 election manifesto.

The June 2017 general election was a political watershed. The outcome was due to combination of the 5 “M”s. The man, the movement, the manifesto, May and McDonnell. Of the five, the keystone was the manifesto, whose architect was John McDonnell. In the first place, however, it was “the man” who was crucial.  

Jeremy Corbyn was the personal embodiment of unbroken resistance to the military and financial priorities of Blairism. His personal vision, however, is mostly limited to opposition to tangible injustices and he is not a natural leader. But the outrageous presumption of his unsuitability by a failed New Labour establishment and the torrid injustice of the media contempt unleashed a surge of support. The blowback to the ruthlessness of the assault upon him generated the credibility of the call for a halt that he personified. With poetic justice, the elite aura of entitlement provoked a wave of solidarity that crystallised around Jeremy. A movement was born that took a new form suitable to the age of the platform capitalism of Google, Facebook and Amazon.

Thanks to Momentum, Corbynism became a social-media driven ‘social movement’ independent of Labour officials and MPs. The confinement of politics to parliamentary routines permits the corporate acquisition of policy. The hysteria around Momentum signalled the pain of a genuine threat to its domination.

Even so, the combination of the man and the movement was incapable of moving public opinion. Especially when it seemed that the Tories under May, with the Brexit breeze filing their sails, were now a party of ‘change’. The local election results on 4 May this year saw Labour crash to 27% support, with the Tories establishing an 11 per cent lead and making gains after seven years in office. The general election had already been called. What turned things around was Labour’s Manifesto. It was leaked shortly after the local elections (probably to ensure it was not filleted by the party’s executive) then published. It turned the tables on a Tory party whose leader had foolishly decided to present herself as the allegory of ‘stability’.

After two decades of the wealthy stealing from the rest of us, Labour set out how it proposed to take a little from the rich to help the poor. After decades of rip-off privatisation, it proposed nationalising railways and water to remove them from what are in effect a publically subsided form of taxation by profiteering monopoly suppliers. In the face of an acute rise of indebtedness among the young, it proposed free university education. A neat contrast of the winners and losers was posted by the New Statesman’s Julia Rampen.

The key to its success was that Labour’s manifesto was not an opportunist response of unfunded promises concocted in response to the surprise challenge of a general election that the government had repeatedly pledged it would not call. McDonnell told Robert Peston on the Sunday following: “We geared up last November. As soon as the Prime Minister said there would not be a snap election we thought there would be”. The result was a fully-costed, professional challenge to the outrageous inequity of the neoliberal consensus. By contrast it was Theresa May’s manifesto that was composed in secret, bounced on the Cabinet, contained amateurishly formulated commitments and had to be promptly disowned by the Prime Minister herself.

The outcome was the most dramatic upset in the history of general election campaigns and, more important, a reversal of the terms of Britain’s domestic politics, grounded on Labour’s well-judged pledges. As Jeremy Gilbert argues, “The June 2017 UK General Election was a historic turning point not just because it marked the full emergence of the Platform Era. It also marked the final end of neoliberal hegemony in Britain” – although not he emphases, neoliberalism itself.

It follows that quite exceptionally for the platform of a losing party, Labour’s manifesto has an afterlife. This poses a fundamental question with respect to Brexit. If the UK were to remain in the EU would a Labour government be allowed to carry out the nationalisations and redistribution that its manifesto promises? If the answer is ‘No’ then the democratic case against continued membership is immeasurably strengthened. Whatever the immediate costs, it would be essential to leave the trap of an EU in order even to start to build fairer and more just 21st century society. 

The Lexiteers claim exactly this. That the EU would prevent Labour from renationalising, under its rules favouring the private sector. The argument quickly becomes technical and clearly there are ways that EU membership restricts a government’s freedom of action. But it does not prevent the exercise of all self-interested national economic measures.

In July, to take the most immediate example, the still fresh President Macron nationalised shipyards about to be taken over by an Italian bidder. In the same month, in his barbaric speech in on how Europe should belong to Europeans, Hungary’s Prime Minister Orban claimed he had achieved, “clear majority national ownership in the energy sector, the banking sector and the media sector. If I had to quantify this, I would say that in recent years the Hungarian state has spent around one thousand billion forints on repurchasing ownership in strategic sectors and companies which had previously been foolishly privatised."

Both the French and Hungarian measures are right-wing forms of national takeover to which the Commission will be naturally less opposed than a Corbyn one. But the Lexiteer argument is not that there will be resistance, there will be plenty of that here in the UK as well, but that EU membership makes nationalisation illegal and therefore impossible as beyond politics. The only response to the EU, therefore, is Leave!

The tragic reality is that the UK political-media class, especially the Tories, made the EU a scapegoat for their domestic policies. They hid behind the EU to claim they were powerless to prevent unpopular policies they were in fact themselves pursuing. The most egregious example was immigration. But the UK is not powerless within the EU. Brussels would not be able to prevent Labour from implementing a social-democratic reorientation of the economy to ameliorate the gung-ho marketisation that is the legacy of Cameron and Osborne’s six disastrous years.

But what about red-bloodied socialism? Could this be allowed by the corporatist constitution of the European elite? Of course not. But, however much this might be McDonnell’s and my own dream, it is hardly on the immediate agenda. The stated priority for Labour is securing jobs, preserving the benefits of the EU’s single market and reversing the acute regional inequalities that have made the UK the most territorially unbalanced society in the whole of the EU (mapped by Tom Hazeldine in New Left Review).

Absurd as it may seem, however, the lure of Lexit is a belief that a Corbyn majority can unleash British socialism while the EU groans under the austere regimentation of the Eurozone.

For example, Guinan and Hanna writing in New Socialist assert that Labour can “seize upon the historically unique opportunity afforded by Brexit to throw the City under the bus”. Apparently the ‘opportunity’ of a Commons majority created by first-past-the-post means a Labour government can snap its fingers at the House of Lords and the monarchy not to speak of the media and the banks, to use the imperial British state to “assert public control over finance, and rebalance the UK economy”. No consideration is given the fact that the ‘opportunity’ is likely to be based on considerably less than 50 per cent support amongst the voters. Meanwhile, the country’s largest export market will, apparently, despite its ineradicable neoliberal character, sit idly by as the path to socialism is pioneered on its largest island.

Perhaps we should be grateful to brazen Lexiteers for being carried away when others, such as the Guardian’s Larry Elliot are less candid about the logic of their views.

It hardly needs the genius of a Varoufakis to grasp that the UK is made up of European nations and when it comes to the dominant economic system this will be changed only through a shared European process that defies EU corporatism, or not at all. Much of the left still must learn that the existing British state is the prison of their hopes and will never be the instrument for their delivery.

Back in 1975 when E. P. Thompson hurled his diatribe against the ‘grand theorists’ of socialism he had Tom Nairn in his sights, whose fine polemic, The Left Against Europe had recently scorched every corner of anti-European prejudice. Against the fantasy of socialism in one Britain, Nairn had argued:

“The Common Market—Europe’s newest ‘constitutional regime’—represents a new phase in the development of bourgeois society in Europe. To vote in favour of that regime ‘in a revolutionary sense alone’ does not imply surrender to or alliance with the left’s enemies. It means exactly the opposite. It signifies recognizing and meeting them as enemies, for what they are, upon the terrain of reality and the future. It implies a stronger and more direct opposition to them, because an opposition unfettered by the archaic delusions of Europe’s anciens regimes”.

Nearly 50 years later the terrain of reality and the future is still shunned by the Lexiteers as they cling to the fetters of the old regime. 

Anthony Barnett’s “The Lure of Greatness: England’s Brexit and America’s Trump” is published by Unbound

This article first appeared in the 21 September 2017 issue of the New Statesman, The revenge of the left