Excerpt from an article in development: the duty of doctors to advocate for patients who request an assisted death. [full published version now shown]

This article has now been published in Clinical Ethics and a pre-publication version is shown here in its entirety. The published version was shorter, without the first footnote on autonomy or the initial reference to the patient TN. 

From Empathy To Assisted Dying: An Argument

Abstract

Assisted dying has not been legalised despite a number of presentations to parliament.  It is necessary for doctors who support assisted dying to justify themselves.  This article describes the author’s personal approach to the problem, one that prioritises respect for autonomy above legal or societal objections.  It is argued that for debilitated patients, autonomy depends on a doctor’s empathy and willingness to advocate.  This sequence can be interrupted by externally and internally imposed barriers.  External factors include indiscriminate respect, and fear,  for the law and society’s institutions, an inaccurate perception of the balance of risks to society and insufficient compensation for the dying person’s inability to mount a sustained challenge.  Internal brakes to advocacy such as elevation of personal morality above the needs of patients, attenuation of the therapeutic relationship in cases of moral complexity and the temptation to abdicate the role of physician are explored.  It is concluded that if assisted dying could in theory be of benefit to a patient, but cannot be achieved due to its illegality, doctors have a duty to actively represent their demands as they would for other forms of treatment.

Introduction

This article provides a justification to those who continue to support the option of assisted dying (AD).  In developing this argument I have analysed my own emotional and intellectual responses to patients who have asked me to facilitate their death (a rare occurrence on general medical wards) and to those cases that have been described in the media and have been the subjects of legal and public debate.  Although I have never been neutral in this debate, I have come to feel that my ‘minority’ opinion requires justification in light of the legislature’s ongoing support for the status quo.  As readers will see, the argument is derived from an axiomatic tendency to support the autonomy1 of patients who are approaching the end of life, this in the face of all societal or religious objections.  As an internal psychological mechanism it works for me, and is therefore self-serving.

Implicit in this is a challenge to the validity of opinion held by doctors who oppose AD.  To present an argument that questions the fundamental beliefs of colleagues is of course controversial.  There is little evidence to interpret, and objectivity is hard to maintain.  It is rarely possible to discuss the subjects of life and death, or the transition between them, without encroaching on matters cultural or spiritual.  The power of anecdote cannot be underestimated, with personal recollections and stories that are full of sadness providing colour and conviction to the opinions of those who have experienced suffering and death close to home.  Perusal of transcripts from the crucial debate that resulted in defeat for Lord Joffe’s private members Bill (‘Assisted Dying for Terminally Ill’)2 in 2006 confirms this.   Making an argument on this subject may touch raw nerves, and there is a risk of causing offence.

This potentially solipsistic exercise, the construction of a mental framework on which to lay the burden of an ‘illegal’ point of view, must be useful to others if it is to justify publication.  I propose that all doctors involved in the care of dying patients should make a similar effort.  The broad avenues of thought along which doctors must roam are lined by austere and imposing philosophical structures; to dwell among them too long risks complete disconnection from patient experience.  It is vital that the routes taken onto these avenues include narrower, more intimate by-ways, in which the walker cannot help but brush against the suffering of others.  The surest path for both patient and doctor is revealed, in my view, by a empathy.

Beyond palliation

There is a man with locked-in syndrome, TN3, whose suffering derives from the very nature of his diminished existence.  What powers that he has have been augmented by technology.  Pain is treated but not abolished.  He receives food and water artificially.  He is fully conscious, and reflects endlessly on the terrible contrast between his current helplessness and his prior freedoms. Through the dedication of his wife his well articulated views are publicised.  His illness now defines him.  However alive his mind, he knows that his illness can only be cured if he dies.  The only way he can commit his foe to the abyss is to hold it to his breast and step off the precipice.  It is an existential decision that cannot be taken with reference to anyone outside his immediate circle of loved ones, and it is made easier in this case by the blessings of his wife and family.  The provision of palliative care expertise will not necessarily improve this inner dissatisfaction, a sensation that cannot be attributed to reactive depression or reversible grief.  Baroness Jay of Paddington said, during the Joffe Bill debate:

                “There is no dichotomy between my support for extending palliative care and my support for the Bill before us today. I can only repeat that the vast majority of terminally ill patients can be helped by palliative care; for the minority, they may experience either intractable suffering or simply prefer to end their lives. At no stage in any of the debates we have had…did we hear those who promote palliative care as a universal panacea produce a convincing answer for that minority.”4

To progress in this argument it is necessary to accept, at face value, the validity of such a person’s desire to die.

Empathy and advocacy

An effective and humane doctor must be able to employ empathy – that is, the ability to imagine what a patient is feeling so as to gain an insight into the nature of their suffering.  In this way the doctor’s suggestions, and the therapeutic decisions that the two of them come to, will be focussed on the patient’s needs.  Without empathy there is a danger that those decisions will target quantitative indicators of disease, such as blood results, tumour dimensions, organ function etc …isolated components that can be over-objectified and divorced from the whole.  Only the patient can know how they feel, and only the actively empathetic doctor can accurately determine how their suffering may be assuaged.  Without that insight the doctor cannot advocate effectively.  Without effective advocacy the infirm patient’s wishes cannot become manifest, and their autonomy is compromised.  Empathy therefore serves to maximise autonomy.  But there are caveats; those autonomous wishesare bound by the moral and legal restrictions imposed by society, and by the personal beliefs of the doctor – external and the internal factors.  These obstacles will be addressed separately.

External restrictions

i  Rules and regulations  – taking comfort in opposition

Doctors are required to practise within guidelines written by various official bodies such as the General Medical Council, the Royal Colleges and the National Institute of Clinical Excellence.  These are designed to protect and maximise patient safety, dignity and autonomy, and to control the use of new and sometimes expensive technologies.  They are not laws, but to contravene them exposes the doctor to professional criticism and censure.  Those who disobey them are at best maverick.  Because these guidelines are written to further patients’ best interests, there would appear to be no good reason why a doctor might cross the boundaries that they impose.  So is it possible to be a good doctor and simultaneously disregard the ‘rules’?  Possibly.  Many restrictions are imposed in society’s best interests, not those of individuals.  An example would be restricted access to costly life-extending therapy for patients with terminal cancer.  A dying patient will naturally seek such therapy, whatever the cost.  The treatment is manifestly in the patient’s best interest, and their doctor must, logically, be supportive of their request.  In reality, the doctor’s ‘hands are tied’.  Policy makers, who must make decisions for society as a whole, are removed from the experience of individual patients, and are justified in drawing the red line that must be drawn.  They are criticised by patient interest groups, their logic is questioned, but their unemotional conclusions, encapsulated in NICE guidelines or Department of Health policy, are respected.  But I would argue that it is natural, and desirable, for doctors to question these decisions.  The doctor who wants the best for their patient, and who chooses to maintain that focus while allowing their concern for society as a whole to fall out of focus, must disagree with ‘policy’.  Continued advocacy will inevitably result in verbal opposition, albeit unallied to action (for to actually go ahead and give the drug would be a maverick act, if not necessarily a wrong one).  Doctors dedicated to the best interests of an individual patient will therefore commonly exist in a state of opposition to ‘higher’ (societal) rules.  How is this argument, which demonstrates that doctors should be comfortable in disagreeing with policy or law, possibly be relevant to assisted dying?  I  would suggest that uncritical respect for regulations can cause the shutters to descend in the mind of the doctor as they approach legal boundaries.  Doctors who sense that they are treading on uncertain ground grow nervous and jittery, reactions that are bound to affect the quality of the therapeutic relationship.  If we can become comfortable with a sense of opposition, we are perhaps less likely to freeze as we near a patient’s icy, determined desire for death, the better to sustain the empathic connection that our patient so dearly needs at this stage in life.

ii.  Comparing dangers – an impossible act

Prioritising the concerns of the individual over those of wider society may come easily to doctors who maintain their focus like a laser, but what of those who cannot help but dwell on the risks that a change in the law would pose?  I will now attempt to dissociate these risks from the terminally ill. Any dying patient who sees their attempt to act autonomously in choosing the time of their death refused will feel aggrieved, and will see themselves as the victim of injustice.  However, because the decision to deny them their wish will have been made by a group of people with great expertise in matters ethical, financial, legal and philosophical (the House of Lords), we can be pretty sure that if the decision is anything at all it is ‘just’.  For the patient it is wrong, for society it is right.  The suffering patient would need to be supremely altruistic to willingly accept an extended life on the basis that to die might threaten the wellbeing of others in the future.  The risks to the many count for more than the risks to the few.  But are we making a category error here?  The risk to the individual who seeks death has already transformed into physical harm.  The risks to the many lie in the future, and are thus invisible to the individual who is suffering.  Whereas other autonomous medical decisions (achieving access to the expensive anti-cancer drug) can be shown to materially deprive another member of society in some way, a private death cannot.  The risks are speculative…the slippery slope, externally imposed or self-generated pressure on the vulnerable, an unwelcome diversion from the necessary development of palliative care services, divine displeasure at the insult to life’s sanctity; all have been raised, and the temporal, at least, can probably be safeguarded against by good law.  These risks cannot be weighed on the same set of scales as the harm caused by refusing to let a person die.  They are qualitatively different, and separated in time.

iii Falling away – why the dying cannot win the argument alone

Impending death undermines the ability of those who wish to change the law in several important ways.  While the deliberations of those who are not dying criss-cross courtrooms, airwaves and debating chambers, the men or women whose lives may be defined by the decisions that are made lay impotent and unheard.  In exceptional cases their views are heard in court (eg. TN, Diane Pretty, Debbie Purdy), but this is often because the situation is untypical.  Generally, their point of view cannot be heard beyond the side-room, ward or home.  It is ironic that when the dying or severely disabled patient can offer nothing more in life than the product of their mind – an opinion – the juncture has been reached where that opinion no longer has any weight at all.  Illness reduces an individual’s influence on society, for they are no longer able to pursue their aims with persistence, and cannot mount a sustained challenge.  They are physically weak and mentally diverted by the vicissitudes of everyday existence.  Like-minded, energetic relatives and friends will of course try to compensate for that, but once the patient dies the problem, for society, will have gone away.  For their relatives too, the fight has been lost and there is little point in continuing the battle.  In this attritional conflict the status quo will always be at an advantage, for individuals who try to besiege the conservative castle have a limited lifespan and are likely to fade from the scene even as they mount the battlements.  In a human culture that actively memorialises the dead and the causes that they fought for, we witness the passing of these campaigners but do not ensure that the force of their argument is sustained.  It is in death’s shadow then, that patients require their doctors to bridge the gap between medical and political worlds, communicate the nature of their illness and the depth of their need,  and fulfil the role as advocate.

Internal  objections

i.   Separation

The elevation of a doctor’s personal concerns or beliefs above those of the patient is usually prohibited.  There are few instances in which it is acceptable to refuse treatment because one does not agree with it in principle – the provision of abortion is the only example I can think of, one which has obvious parallels with AD.  However, in everyday medical practise we separate our ‘moral’ and medical identities, and do not allow the former to influence the latter – hence, for instance, my duty to advocate for the alcoholic recidivist even if I feel that her use of scarce intensive care resources is “undeserved”.  A doctor’s actions result from combining their understanding of a patient’s needs (physical, psychological, social) with the great menu of available therapies and support services that exists.  If the assessment of those needs is filtered by the screen of the doctor’s pre-existing, fixed moral standards, a separation has occurred.  The doctor who allows personal objection to insert itself between the patient’s desire and their own duty of advocacy is perhaps fortunate in being able to work at a cool remove, but the therapeutic relationship has been put at risk.  It may even have been sundered.

ii.  Abdication

I have argued that doctors who oppose AD have, in allowing their societal, religious or philosophical concerns to take precedence, permitted the relegation of their usual guiding principle, autonomy.  This suggests that their ‘true’ instinct, to give the patient what they want and support AD, is being trumped by their moral core.  This might appear absurd: the doctor has an opinion, full stop – there is no duality.  I will now push this line of reasoning with a thought experiment that places the doctor in a clinical relationship with a patient who has requested AD.  This takes the sceptical reader from the abstract – ‘what is your opinion?’, to the real – ‘how would you act?  Will they (you) change your position (shaken into reversal by the impact of the patient’s suffering and clarity), thereby promoting your respect for the patient’s autonomy above your own beliefs5; or shake your head, emphasise the value of palliative care and turn away.  The patient detains you, asks if you can do anything to help.  One option remains, that of abdicating your position as physician and suggesting that another take your place.  In the latter case, you will have accepted that it is not possible to be both a doctor to this patient and a citizen.  This ‘experiment’ has in fact been performed, albeit in slightly different circumstances: those who cared for Mrs B, who was paralysed by a cervical cord haemorrhage and who successfully requested that her ventilator be turned off, were compelled to transfer responsibility to doctors who felt able to press the button6.  They made the decision to abdicate their therapeutic relationship with the patient, for, to them, the act of killing (turning off the ventilator) was not compatible with being a doctor.  So, they chose not to be doctors any more (to Mrs B).

iii.  A further thought experiment

It is valid to ask what we would want if we were suffering from an incurable disease without the likelihood of cure, effective palliation or a manageably short prognosis.  It is a valid exercise.  Many of those involved in the debate over Joffe’s Bill imagined such circumstances, and projected their own anticipated desires into the public arena.  It is here, where abstraction ends and empathy is overridden by immediate sensation, that we must display supreme honesty.  This thought experiment requires great imagination.  Many have asked themselves the question, and have then proceeded to write an Advanced Directive.  These can limit what is done to the patient, but cannot of course impel doctors to  kill.  Can you envisage a circumstance where you would want someone to help you die?  Severe, acute pain is unlikely to drive such a request, for that symptom can be managed.  Chronic discomfort, perpetual malaise, incessant nausea, physical incapacity and reliance on others for daily activities – these are more likely to gnaw at an individual’s sense of identity, creating existential pain.  There will be a choice: that of accepting fate and waiting, waiting, waiting for an emergency to ensue at which point one can refer to an advanced directive and refuse treatment, or active dying at a moment of ones choice.  The passive option requires that those remaining days are endured, and that as an individual you will have little say over when or how it ends.  You will be powerless, but, as a citizen, you will be noble, in respecting the norms of the society in which you have enjoyed prior freedoms.   The active option, currently illegal, provides you with a choice.  Your last choice in life.  It is important for people engaged in this debate to consider this situation.

 A realistic therapeutic option

Can a doctor who is in opposition to AD ever envisage a situation where their commitment to the patient overcomes their misgivings?  The question is perhaps far-fetched, because even doctors in favour of AD cannot imagine delivering it, while it remains illegal.  But let us move in an imaginary universe where we cannot be prosecuted.  For most doctors there will be no such circumstance anyway.  Mature physicians are rather skilled at practising empathetically while simultaneously protecting themselves from the erosive effects of their patients’ suffering, such that the emotional pain is not permanently transferred.  In this way the force of the argument, deriving from the proximity between doctor and patient, is attenuated.  But there are situations where longevity and proximity have lead to a well developed personal relationship between the two, and where levels of trust have reached almost indestructible dimensions.  If we as doctors can imagine the development of such a relationship, one that would involve a blurring of the professional and the personal, we must be able to imagine being asked the question.   Our response to this question will invariably be to regretfully decline the request.  Trust will be maintained, but the patient will have learnt that they can expect only palliation as they reach the end – they will not retain ultimate autonomy over their life.  We will quote the law, and we cannot be blamed for that.  But we will regretfully decline.  Regret.  For what we cannot provide.  This is the crux.  Do we, in this sad case, regard AD as something that might help our patient.  If it is something that we consider potentially helpful, we must ask why it cannot be employed.  If the answer to that is ‘because it is illegal’, then the duality of opinion that was touched upon in the section on ‘Abdication’ does exist.  We are in two minds – the medical and the moral.  We want to do something to help the patient, but we cannot act.  In this bind we must challenge the status quo, as we would in any other situation where access to a therapeutic option is limited by external factors.    If the question has to be asked, the law must be challenged.

Summary

I have built a psychological argument on the foundation of a basic medical skill – empathy.  Through empathy we begin to experience the patient’s situation, and are better able to help them.  If they desire death, and that desire is sustained, we must reach the conclusion that death is the best outcome for them.  Instead of halting at this juncture, frozen by personal ambivalence or respect for the law, we must move forward.  Either we agree, but are frustrated by the rules of society – in which case we live in opposition and as doctors should advocate, through discussion and argument, for the right to die.  Or, due to personal preference, faith in palliative care, religious discomfort, or deference to the wisdom of those who defeated the Joffe Bill, we do not agree.  Whatever the reason, we will have succeeded in overpowering our vocational inclination to side with the patient and further their desires.  In this case we must ask ourselves, are we still able to function as a doctor to this patient?  If, assuming we believe them to be of sound mind, we are unable to advocate for them then no, we should not be a doctor to them.  We can continue to administer care, in a technical sense, but we cannot pretend to be moving forward with them through their illness.

Notes

1              Autonomy, a pillar of ethical medical practise according to Beauchamp and Childress’s Georgetown mantra, is a complex principle. Although, in the medical context, it appears to denote the freedom of the individual to make their own decisions, it’s broader philosophical implications need to be considered. Immanuel Kant, who considered human actions within a deontological, or duty-based framework, asserted we should act “Act only according to that maxim whereby you can, at the same time, will that it should become a universal law.” (Groundwork for the metaphysic of morals – 1785). This ‘Categorical Imperative’ demands that we do something only if we would be happy for all of society to do it too.  Similarly, in Jean-Jaques Rousseau’s ‘The Social Contract’ (1762), moral liberty, or autonomy, depends on the forfeiture of some freedoms and the acceptance of duties that are in the common interest. Socrates knew this two thousand years before his intellectual heirs, and he died by the same principle. In refusing the help of those friends who could have arranged for his escape, he demonstrated an abiding respect for the social contract into which he had entered as a citizen and enjoyed a fruitful life (see Plato’s Crito).  Those who seek assisted suicide come up against a similar, if perfectly reflected position.  By adhering to their society’s laws they will be obliged to live, not die.  Finally, the dying patient might reflect on Isiah Berlin’s ‘Two concepts of liberty’ (1958), where ‘negative freedom’ indicates the absence of external restrictions  and ‘positive freedom’ denotes the power to enact ones desires.  Enfeebled patients enjoy neither, being restricted by the law on the one hand, and disempowered by their disease on the other.

2              The Joffe bill was debated in the House of Lords on 12 May 2006. An amendment to delay its introduction by six months was carried by a margin of 148-100 (in effect a defeat).  Lord Joffe’s initial 2003 Patient (Assisted Dying) Bill proposed that assisted suicide be legalised for competent adults who were suffering unbearably as the result of a terminal or serious, incurable and progressive disease.  The revised bill, submitted in 2004, proposed that such a provision would be restricted only to those with terminal disease, and made mandatory a full exploration of possible palliative care measures.

3              Tony Nicklinson and his wife Jane have recently (12 March 2012) won the right to a hearing in the High Court to explore the exoneration, pre-emptively, of any doctor who agrees to assist him in dying.  He would not fall within the criteria set out by Joffe Bill.

[http://www.guardian.co.uk/society/2012/mar/12/locked-in-syndrome-sufferer-court-hearing] accessed 2.6.2012

4              Hansard: [http://www.publications.parliament.uk/pa/ld200506/ldhansrd/vo060512/text/6051203.html] accessed 2.6.2012

5              Currently, you would be able to do no more than sympathise.  Deeds would be limited to supporting a legal challenge, or even, in light of the Director of Public Prosecutions (DPP) guidance published in February 2010, reassuring family members that they would not automatically be prosecuted should they make arrangements for an application to the Dignitas clinic.  The DPP was subject to legal challenge by Deborah Purdy, who wished for clarification of the law in anticipation of her husband’s involvement in her own death (from multiple sclerosis).  The courts agreed that the law was not clear, after which the DPP produced a list of six factors that would make the prosecution of a someone involved in AD less likely.  These are:

  • The victim had reached a voluntary, clear, settled and informed decision to commit suicide.
  • The suspect was wholly motivated by compassion.
  • The actions of the suspect, although sufficient to come within the definition of the crime, were of only minor encouragement or assistance.
  • The suspect had sought to dissuade the victim from taking the course of action which resulted in his or her suicide.
  • The actions of the suspect may be characterised as reluctant encouragement or assistance in the face of a determined wish on the part      of the victim to commit suicide.
  • The suspect reported the victim’s suicide to the police and fully assisted them in their enquiries into the circumstances of the suicide or      the attempt and his or her part in providing encouragement or assistance.

[http://www.cps.gov.uk/publications/prosecution/assisted_suicide_policy.html ] accessed 2/6/2012

6              Mrs B’s case against a NHS hospital trust was heard  in March 2002. Dame Elizabeth Butler-Sloss came to the patient’s bedside and determined that Mrs B was justified in requesting that mechanical ventilation be withdrawn.  However, Mrs B had to identify and approach the director of another intensive care unit who was prepared to turn the ventilator off and fulfil her wish to die.

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