Select Committee on Assisted Dying for the Terminally Ill Bill Written Evidence


Memorandum by Professor Emily Jackson, Chair of Medical Law, Queen Mary, University of London

1.  INTRODUCTION

  The absolute prohibition on euthanasia coexists with doctors' extensive involvement in shortening their patients' lives.

  Why does the line between lawful and unlawful life-shortening practices lie where it does?

    —  line only makes sense if we ignore the perspective of the individual patient.

    —  at odds with patient-centred development of medical law.

2.  REASONS FOR PROSCRIBING EUTHANASIA

(a)   Euthanasia is intrinsically wrong

I  Sanctity of Human Life

    (i)  Religious belief that life is not ours to dispose of as we please,

        BUT this cannot be the basis of public policy in a secular society.

    (ii)  Some argue it is illegitimate to make qualitative judgements about whether a life is worth living

    BUT doctors already make this sort of judgement:

      —  doctrine of double effect;

      —  for PVS patients, eg Bland;

      —  R v Cambridge DHA ex p B [1995] 1 WLR 898 Sir Thomas Bingham:

    "I have no doubt that in a perfect world any treatment which a patient, or a patient's family, sought would be provided if doctors were willing to give it, no matter how much it cost, particularly when a life was potentially at stake. It would however, in my view, be shutting one's eyes to the real world if the court were to proceed on the basis that we do live in such a world."

(my emphasis.)

II  Act/omission distinction

    —  Is killing always worse than letting die?

      —  Instead of a binary division between acts and omissions, it makes more sense to think in terms of a spectrum.

      —  Withdrawing treatment lies in the middle of the spectrum. Depending on the context, it could be either an act (eg a malicious interloper) or an omission (eg Bland).

    —  Morally relevant fact is whether surrounding circumstances justify treatment withdrawal, not whether its an act or an omission.

    —  Act/omission distinction adds a redundant layer of sophistry to moral reasoning:

    ie we currently say:

      the competent patient has refused treatment

      —  therefore treatment withdrawal is an omission,

      —  therefore it is morally permissible,

    clearer to say:

      the competent patient has refused treatment

      —  therefore treatment withdrawal is morally permissible.

    —  If withdrawing life support is an omission, how could there be a conscientious objection to "omitting to act?" Yet:

      Ms B v An NHS Trust [2002] 2 All ER 449. Dame Elizabeth Butler-Sloss P:

        "[Dr C] did not feel able to agree with simply switching off Ms B's ventilation. She would not have been able to do it. She felt she was being asked to kill Ms B."

 (b)   Regulatory difficulties

I  Ensuring request is voluntary and preventing abuse

    (i)  Patients are very ill, judgement may be distorted by depression.

    (ii)  No scope for correcting decisions based upon a mistaken diagnosis of competence or terminal illness.

    (iii)  Principle of patient confidentiality makes it difficult to scrutinise oral discussions to ensure requests were informed and voluntary.

    (iv)  Patients might be pressurised into requesting euthanasia because they perceive themselves to be a burden.

  BUT we already allow patients to make life and death decisions, when these considerations may be even more compelling:

  Re MB 38 BMLR 175 Butler Sloss LJ:

  "A mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death."

  Common practices, such as withholding life-prolonging treatment without consent, pose a greater risk than euthanasia to vulnerable individuals.

  A carefully regulated system would offer much more effective protection than a blanket ban, which simply pushes the practice underground.

II  Slippery Slope

  ie difficult/impossible to draw a line between acceptable and unacceptable practices.

    —  Empirical claim? BUT seldom proved/refuted by the evidence.

    —  Blanket ban is not necessarily the best response to slippery slope concerns, regulatory safeguards might offer more protection to vulnerable patients.

    —  Risk that a blanket ban drives the practice underground.

(c)   Protecting the medical profession

    —  Intrinsically good for doctors to cultivate a virtue based upon adherence to a strict ethical code.

    —  Instrumentally good because it fosters patient trust and confidence.

  BUT doctors do routinely shorten our lives—purely symbolic/linguistic resonance of killing?

    —  Euthanasia's prohibition is principally directed to preserving this symbolic moral ideal about the proper limits of medical power.

3.  IGNORING THE PATIENT'S PERSPECTIVE

  Can only distinguish lawful/unlawful life-shortening practices from the doctor's perspective:

    —  From the patient's perspective, the line drawn between lawful and unlawful life-shortening practices makes very little sense.

    —  Clinicians prefer methods of shortening life that are more like letting die and less like killing. However, from the patient's perspective, a painful, protracted death is self-evidently worse than a quick, painless one.

    —  From the patient's perspective, it seems arbitrary that those on life support can insist upon compliance with their requests for withdrawal, while those who are terminally ill but not dependent on machines cannot receive any assistance to die.

    —  None of the lawful means of ending patients' lives promote the sort of death that most of us would prefer (that is, to die at home in the presence of someone we love).

4.  AN ABSOLUTE PROHIBITION

    —  Unlike other ethical principles (such as prohibition on sexual contact with patients and duty to respect confidentiality), there are no exceptions to the prohibition on doctors helping their patients to die, however compelling the circumstances.

    —  Better to prevent euthanasia for vulnerable patients and to allow it for non-vulnerable patients:

      —  We believe that we have the requisite certainty to draw this line for treatment refusals.

      —  Whether or not we can tell if a patient is vulnerable does not depend upon whether they want active or passive assistance with dying.

    —  We can only defend an absolute prohibition on euthanasia if we ignore the needs of a small sub-set of patients for whom it may represent the only way to relieve pain or distress.

  A refusal to accept that there are circumstances which would justify making an exception from a general rule against active euthanasia does not take seriously enough the perspective of a competent patient for whom life has become unbearable.

Whose Death is it Anyway: Euthanasia and the Medical Profession

  A significant proportion of all deaths are now preceded by a decision taken by a doctor which, when acted upon, will end the patient's life. The purpose of this paper is to investigate why we continue to forbid the medical profession from doing this in the most humane and painless way, namely by administering a single lethal injection. I shall argue that the distinction that the law draws between lawful and unlawful life-shortening practices ignores the perspective of the individual patient. In doing so, the current legal position on euthanasia represents an extraordinary exception to the patient-centred development of medical law over the past 50 years.

  There are several stages to my argument. First I critically evaluate the conventional justifications for an absolute prohibition on euthanasia. I argue that euthanasia is not always intrinsically wrong, and that regulatory difficulties do not necessarily pose an insuperable obstacle to legalisation. I suggest that we prohibit euthanasia only in order to protect an abstract idea about the proper role of the medical profession. Next, I contrast the lawful and the unlawful ways in which doctors' decisions may shorten their patients' lives, and argue that these can be differentiated only if we refuse to take into account the plight of individual patients. I then consider the absolute quality of the ban on active euthanasia and suggest that the law's refusal to admit any exceptions to a general rule against killing reveals its inability to respond to individual patients' needs.

1.  THE REASONS FOR PROSCRIBING EUTHANASIA

(a)   Arguments from euthanasia's intrinsic wrongness

  (i) The sanctity of human life:

  Some commentators have argued that legalisation of euthanasia/assisted suicide would be incompatible with the principle that all human life is intrinsically valuable.[113] There are two strands to this objection to euthanasia. First, there is the religious belief that life is not ours to dispose of as we please. Secondly, some people believe euthanasia involves making a quality of life judgment that is irreconcilable with the principle that all lives are of equal value.[114]

  Neither of these arguments is persuasive. In a culturally diverse society, there is no justification for using religion to restrict the choices available to others.[115] The belief that God alone should decide the moment of an individual's death cannot be the foundation of public policy. It could also be argued that God's monopoly on determining the moment of death has already been substantially undermined by routine practices such as the withdrawal of life-support.

  The idea that euthanasia involves unacceptable qualitative judgments about whether a life is worth living is unconvincing, since we already allow competent adult patients to make this sort of judgment by refusing life-sustaining medical treatment. In some cases, doctors must positively remove the equipment that keeps the patient alive, and thus are effectively under a duty to act deliberately to hasten death, even where the patient is likely to make a complete recovery, and wants to refuse life-prolonging treatment for illogical reasons, or for no reason at all.[116]

  Doctors are allowed to administer potentially lethal doses of painkilling drugs by virtue of the doctrine of double effect. According to the doctrine, a doctor who intends a good consequence—relieving pain—is not guilty of murder just because she foresees, but does not intend, a bad consequence—ie death.[117] But in the context of palliative care, when a doctor foresees that the dose of analgesic drugs which she is about to give is going to cause death, she must have reached the conclusion that death would be an acceptable outcome. Even if we accept that death is not the principal purpose, she must have decided that the patient's interest in pain relief now outweighs her interest in continued life. It is difficult to see how this decision can be made without taking into account the patient's quality of life.

  When life-prolonging treatment is removed from incompetent patients, the judgment that continued life has ceased to be a benefit to the patient is generally made by a third party. The House of Lords decision in Airedale NHS Trust v Bland[118] confirmed that life support could be withdrawn from patients in a persistent vegetative state (PVS) because it is not in their best interests to have their lives prolonged, but once a patient has irrevocably lost the capacity for consciousness, it is a matter of complete indifference to him whether treatment is continued or withdrawn. Such a decision cannot be made without imposing our judgment about whether a permanently insensate life is worth living,[119] and this inescapably involves making a quality of life judgment.

  Adherents of the "sanctity of life" argument should also be troubled decisions of "medical futility". From the patient's perspective, treatment that has a one in 20 chance of curing them is not necessarily futile, rather it may represent their only chance of postponing death. Yet the courts do not condemn doctors who withhold potentially life-saving treatment from patients who want to go on living for as long as possible. Such decisions are believed to lie within the proper scope of medical discretion.

  (ii)   The act/omission distinction:

  One possible justification for distinguishing between euthanasia and treatment withdrawal is the distinction between acts and omissions, or between killing and letting die. Instead of a binary division between acts and omissions, I suggest that it makes more sense to think in terms of a spectrum. Towards either end of this continuum might lie cases such as shooting someone at one end, and failing to give money to charity at the other; but in the middle, the line between "doing" and "not doing" becomes much less clear.[120]


  Treatment withdrawal, which indubitably involves doctors doing something, is a good example of conduct which lies on the boundary between acts and omissions, because it could easily be described as an action. It is by taking into account the surrounding circumstances, and not by labelling what the doctor does as an omission, that we can ascertain whether her conduct is acceptable. The morally relevant fact is not whether what the doctor does is an omission or an action, but rather whether the background against which the decision has been taken justifies the doctor's conclusion that life, in these circumstances, should not be artificially prolonged.

  Evidence that withdrawing life support might be inappropriately categorised as an omission comes from consideration of conscientious objection. Doctors whose consciences prompt them to refuse to participate in the withdrawal of life-prolonging treatment are unwilling to act deliberately to cause their patients' deaths. This was the perspective of the treating clinicians in Re B (adult: refusal of medical treatment).[121] Dame Elizabeth Butler-Sloss P explained that clinicians

    could not, however, bring themselves to contemplate that they should be part of bringing Ms B's life to an end by the dramatic step of turning off the ventilator. (My emphasis).

 (b)   Arguments from regulatory obstacles

 (i)   Problems in ensuring the voluntariness of requests:

  For a number of reasons, it has been suggested that ensuring requests for assisted death are made voluntarily represents an insuperable obstacle to legalisation. First, because it would be hard to guarantee that a patient's desire to die was genuine—and not, for example, a symptom of treatable depression—some argue that we should not comply with any patient's request for euthanasia.[122] Secondly, given the finality of euthanasia, opponents of legalisation have argued that we could never be sufficiently certain that a person's request for euthanasia had been both properly informed and competently made. Finally, the privacy of the doctor/patient relationship would, it has been argued, make it almost impossible to ensure that the patient had not been pressurised into requesting euthanasia.[123]

  The obvious response to these arguments is that we already allow patients to make decisions which will result in their deaths through refusals of life-prolonging treatment. A patient who is connected to a ventilator may be depressed, and we may wrongly judge her to be competent, but this inescapable risk of error does not persuade us that we should prevent patients from taking life and death decisions. Instead the appropriate response is a careful assessment of her decision-making capacity. Nor do we think that the principle of patient confidentiality represents an insurmountable obstacle to our ability to protect vulnerable patients from being coerced into agreeing to the withdrawal of life-prolonging treatment.




(ii)   Preventing abuse:

  It has been suggested that if euthanasia were legal, elderly patients would be pressurised into electing a premature death by unscrupulous relatives. Pressure may also come from the medical profession, since euthanasia would be cheaper than providing optimum palliative care, and might appear to be a cost-effective "treatment" for old age and terminal illness.[124] It is also common for elderly people to perceive themselves to be a burden to their families, and there is a danger that they might request euthanasia despite their desire to go on living.

  The legalisation of euthanasia would not present a unique opportunity for the mistreatment of the elderly. Common practices, such as withholding or withdrawing life-prolonging treatment without the patient's consent, may pose an even greater risk to vulnerable individuals. Do Not Resuscitate orders, for example, are often made without consulting the person whose life is at stake. Life-prolonging treatments are commonly withheld from competent patients because the doctor judges treatment to be futile, even if the patient herself would prefer to live on. And if we are concerned to protect vulnerable patients from electing a premature death against their wishes, we should probably be more concerned about refusals of life-prolonging treatment, where the patient's decision must be respected even if it is wholly irrational.

  A carefully regulated system would offer much more effective protection than a blanket ban which simply pushes the practice underground and magnifies the risk of abuse. An analogy could be drawn with arguments made prior to the partial decriminalisation of abortion: advocates of legalisation argued that abortion's continued illegality ensured that pregnancies were terminated in unsanitary conditions, without the safeguards and control that would be possible if doctors were allowed to provide women with safe, legal abortions.[125]

(iii)   A slippery slope?

  The slippery slope claim is that even if we accept that euthanasia might sometimes be reasonable, we should nevertheless prohibit it because sanctioning some compassionate acts of killing would make it difficult to prevent doctors with less benevolent motives from ending their patients' lives.[126] The argument suggests that although we might be able to distinguish paradigm cases at the top of the moral slope from those at the bottom, it would be very difficult to locate or police the line between acceptable and unacceptable practices towards the middle of the slope. Yet this "grey area" problem exists whenever we attempt to regulate anything.

  Would legalising euthanasia make involuntary killing more likely? We might answer this question by examining statistics from countries which have legalised euthanasia, but there are different and contradictory interpretations of the available data. Despite their essentially empirical character, slippery slope arguments are seldom decisively proved or refuted by the available evidence, because the evidence will inevitably be interpreted through the partisan lens of the opponent or the supporter of legalisation.

  A blanket ban seems a peculiarly blunt approach to regulation, especially since the consequence for patients who do clearly merit access to euthanasia will be a painful or otherwise intolerable death. It would be more logical to advocate regulations which confine access to euthanasia to patients whose circumstances lie at the top of the moral slope (whatever those might be), and prohibit it in all other cases. Hypothetical speculation about an as yet unwritten law's possible future inefficacy does not offer adequate justification for a refusal to contemplate even thinking about regulation.

(c)   Protecting the Medical Profession

  The British Medical Association has consistently opposed the legalisation of euthanasia on the grounds that for the medical profession to "acquire an additional role alien to the traditional one of healer" would be "in tension with the fundamental role of doctors".[127]If doctors had to learn how to kill, the medical profession's image of itself as a healing profession would be fatally undermined.[128]

  It might be argued that it is intrinsically good for doctors to cultivate adherence to a rigorous ethical code which absolutely forbids killing, or that the complete prohibition of medicalised killing promotes optimum patient care by fostering a relationship of trust and confidence. Patients are able to trust their doctors, it is argued, precisely because they belong to an honourable profession with its own strict ethical codes. But of course, we already know that doctors routinely make decisions which shorten their patients' lives, although none of the lawful ways in which doctors routinely cause their patients' deaths have the brutal linguistic resonance of "direct killing": withdrawing treatment "lets nature take its course"; a life-threatening dose of analgesics is simply intended to relieve pain. I would argue that euthanasia's continued illegality is principally directed towards preserving this symbolic moral ideal about the proper limits of medical power.

2. CONTRASTING UNLAWFUL AND LAWFUL WAYS TO SHORTEN PATIENTS' LIVES

  From the patient's perspective, the line the law draws between lawful and unlawful life-shortening practices makes very little sense. If we allow doctors to engage in some practices which will end their patients' lives, why not permit doctors to accomplish exactly the same end more swiftly and painlessly?

  Lawful and unlawful life-shortening practices can be distinguished only by adopting the medical practitioner's perspective. For example, the practice of terminal sedation, whereby a patient is lawfully sedated into a coma, and then removed from the artificial ventilator which is keeping her alive, is functionally indistinguishable, from the patient's point of view, from active euthanasia.[129] For the dying patient, it is difficult to see why terminal sedation should be treated so differently from euthanasia.

  In Re B (adult: refusal of medical treatment),[130] the clinicians involved in Ms B's care did not want to withdraw artificial ventilation, but were prepared to adopt a "one-way weaning" programme, gradually reducing the breaths supplied by the ventilator, even though death would take several weeks. From the doctors' perspective, one-way weaning was preferable to complete withdrawal because it would be more like "letting die", and less like killing. It would be easier for them to live with. But however difficult it might be for the doctors, from the patient's perspective, a protracted and perhaps painful death is self-evidently and emphatically worse than a quick, painless one.

  In the same year the English courts heard Mrs Pretty's request for assistance in dying. Mrs Pretty was not connected to artificial life-support, and hence needed more active assistance in order to end her life. But while Ms B could insist upon compliance with her wish that her life be brought to a quick and painless end, Mrs Pretty had to endure a distressing and frightening death.[131] From the patient's perspective, it makes little sense that access to a "good" death should depend upon something as apparently arbitrary as whether or not one is able to breathe unaided. It also seems strange that doctors can end the lives of patients (like Tony Bland) who have many years of pain-free existence ahead of them, while no assistance can be provided to competent adult patients (such as Dianne Pretty) whose final few days have become unbearable.[132]

  Most of us would prefer to die quickly and at home, in the presence of someone we love, yet none of the lawful means of ending patient's lives promote this sort of death. Withdrawal of life-sustaining treatment invariably takes place in hospital, and when artificial nutrition and hydration is withdrawn, the patient will slowly starve to death. The moment of death is unpredictable, and the patient's family may not be present. Voluntary euthanasia, on the other hand, could be given to a patient in her home in the presence of friends or relatives. Evidence from the Netherlands indicates that the relatives of patients who die as a result of euthanasia cope better with bereavement than the relatives of patients who die naturally, because they have the opportunity to talk openly about dying and say goodbye, and are prepared for the time and manner of the death.[133]

3. CONCLUSION

  Competent adult patients seeking to end their lives will generally fall into one of three groups. First, there are those who are able-bodied enough to take their own lives. Suicide is not a criminal offence;[134] therefore it is lawful and relatively straightforward for patients in this group to end their suffering by taking their own lives. Secondly, there are patients, such as Ms B, who are connected to artificial means of life support and have the right to insist that their doctors do something to bring their lives to a quick and painless end. Finally, there are patients like Dianne Pretty, who fall somewhere in between. They are not sufficiently able-bodied to commit suicide, but neither are they sufficiently disabled to require artificial life support. This third group of patients have no option but to endure an unendurable death.

  The purpose of this paper has been to show that we can only defend an absolute prohibition on euthanasia if we ignore the needs of this small sub-set of patients for whom it may represent the only way to relieve their pain or distress. This disregard of the individual patient's perspective is wholly at odds with the trend towards a patient-centred approach to medical law and ethics.

  What is particularly important about the prohibition of euthanasia is that it admits absolutely no exceptions. However compelling an individual patient's reasons for wanting her doctor to help her to die, and however sympathetic a doctor might be to her request, euthanasia remains illegal. No other rules of ethical conduct have this absolute quality—it is always possible to make an exception if there are sufficiently compelling reasons. Instead of anticipating the different situations in which euthanasia might be requested, and attempting to work out which requests should be honoured, and which refused, the law insists that all requests, including those from people who are plainly both competent and suffering truly intolerable distress, must be turned down. A refusal to accept that there might be circumstances which would justify making an exception from a general rule against active euthanasia does not take seriously enough the perspective of a competent patient for whom life has become unbearable.




113   L Gormally "Euthanasia and Assisted Suicide: Seven reasons why they should not be legalised" in D Dickenson, M Johnson, J S Katz (eds) Death, Dying and Bereavement 2nd ed. (London, Sage, 2000) 286-90. Back

114   J Keown Euthanasia, Ethics and Public Policy: An Argument against Legalisation, (Cambridge UP, 2002) 244. Back

115   M Otlowski Voluntary Euthanasia and the Common Law (Oxford UP, 2000) 216. Back

116   See, for example, the statements of all three judges in the Court of Appeal in Re T (Adult: Refusal of treatment) [1993] Fam 95, and of Butler Sloss LJ in Re MB (An Adult: Medical Treatment) [1997] 2 FLR 426. Back

117   For a defence of the doctrine of double effect, see J. Keown supra n 4, 18-29. Back

118   [1993] AC 789. Back

119   R Dresser "Missing Persons: Legal Perceptions of Incompetent Patients" (1994) 46 Rutgers Law Review 609, 662. Back

120   A P Simester "Why Omissions are Special" (1995) 1 Legal Theory 311-35. Back

121   [2002] 1 FLR 1090. Back

122   J D Velleman "A Right of Self-Termination?" (1999) 109 Ethics 606-628, 618. Back

123   D Callahan and M White "The Legalisation of Physician-Assisted Suicide: Creating a Regulatory Potemkin Village" (1996) 30 University of Richmond Law Review 1. Back

124   L Gormally n 3 above. Back

125   See further S Sheldon "The Abortion Act 1967: A Critical Perspective" in E Lee (ed) Abortion Law and Politics Today (London, Macmillan, 1998) 43-58. Back

126   D W Brock "Voluntary Active Euthanasia" (1992) 22 Hastings Center Report 10-22. Back

127   End of Life Decisions Views of the BMA (London, BMA, 2000). Back

128   L Kass and N Lund, n 36 above. Back

129   See further D. Orentlicher n 7 above, 855-- and M P Battin n. 43 above, 104-5. Back

130   [2002] 1 FLR 1090. Back

131   Mrs Pretty died precisely the death she feared 12 days after the ECHR rejected her application. Back

132   M Freeman, n 20 above, 606. Back

133   N B Swarte et al, "Effects of euthanasia on the bereaved family and friends: a cross sectional study" (2003) 327 British Medical Journal 189. Back

134   Suicide Act 1961, s 1. Back


 
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