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

Memorandum by Colin Harte


  1.1  I have been a full-time carer of a severely disabled woman, Alison Davis, since 1989 (having known her from 1987). For the first six of those years (1989-95) Alison had a persistent wish to die, and she had had a persistent wish to die for some years before that (since 1985). Before I started to care for her she had attempted to end her life on several occasions. Some of the attempts were serious, as a result of which she was hospitalised and recovered only because she was treated, against her will, after she lost consciousness. Alison has written her own submission to the Select Committee on behalf of the group No Less Human and I am mentioning her in my submission with her consent. I am thankful that legislation like the Assisted Dying for the Terminally Ill Bill, or the Dutch euthanasia law, did not exist during the period 1985-95. Alison would have qualified for euthanasia, would have requested it, and her wish would have been granted and she would now be dead. Alison is also grateful now that she did not then have the opportunity to choose death. In this submission I will comment on the difficulties that a law allowing euthanasia would pose for family members or carers of terminally ill/disabled people.

  1.2  In this submission I shall avoid the euphemism "assisted dying" and use the more appropriate term "euthanasia." By euthanasia I mean an act or an omission which of itself and/or by intention causes death (ie, kills someone) with an aim of ending a life that is regarded as burdensome either for the person concerned or someone else.

  1.3  The title of the Assisted Dying for the Terminallly Ill Bill is misleading because good health care (eg, as found in hospices) provides a legitimate assistance in dying which does not involve euthanasia. Also, the definition of "assisted dying" in the Bill includes the situation in which a physician is not in fact "assisting" but is actually "ending the patient's life" (Clause 1.2).

  1.4  The Bill is further misleading in claiming that it will "make provision for a person suffering from a terminal illness to receive pain relief medication." In fact, the Bill makes no provision for pain relief medication that is not already available. The inclusion of such a "provision" in the Bill—which is even mentioned in its long title—would seem to serve no purpose but to deceive.


  2.1  The Assisted Dying for the Terminally Ill Bill [2004] differs from its predecessor, the Patient (Assisted Dying) Bill [2003], insofar as it would allow euthanasia for those who are "terminally ill" but not for those who have a "serious and progressive physical illness." It might be claimed that the 2004 Bill refers to those who are "terminally ill" but not to those generally regarded as "disabled," and thus should not encounter objections from groups run by disabled people who have been particularly opposed to euthanasia. Disability groups would be right to continue to object to the Bill insofar as those "terminally ill" patients to whom it might apply can rightly be regarded as disabled as a result of their illness.

  2.2  Because my submission will refer to my association with Alison Davis I think it is important to explain that her situation, whilst more obviously applicable to the 2003 Bill and a law like the current Dutch euthanasia law, is also applicable to the 2004 Bill. In the mid-1980s, it was believed that she did not have long to live. Her physical suffering (intense pain which caused her to lose consciousness and vision for long periods, difficulty breathing, etc) was such that I certainly did not think she could have long to live, and this was also medical opinion. Medicine is not an exact science, and it causes little surprise to hear of individuals given two months to live with a terminal illness, living for a further two years.[109] I was called to the bedside of a dying friend in December 2002; she is still alive. The concept of "terminally ill" is vague and there is, of course, no way of knowing for how long patients might have lived if they had not been killed under an Assisted Dying type law. The 2004 Bill does not say how close to dying a patient must be to qualify for euthanasia—and of course this is a judgment that is impossible to make; the Bill merely says that the patient's illness "must be likely to result in the patient's death within a few months at most." The word "likely" is as nebulous as the whole criteria for allowing euthanasia under the 2004 Bill. Doctors who thought from 1985 that Alison was "likely" to die in a few months would not have been proven wrong if Alison had been granted euthanasia (as she wanted) at that time. The same applies to anyone else killed under a euthanasia law. If the patient is killed the doctors can never be proven wrong. This makes Alison's story particularly pertinent to discussions about euthanasia.

  2.3  Although the 2004 Bill refers to the "terminally ill" and not to those with a "serious and progressive physical illness," a law allowing euthanasia for the former will, as a matter of logic, soon be changed to allow (or, in spite of the so-called "strict safeguards", will be interpreted in practice as allowing) it for the latter. The 2004 Bill is clearly a product of the Voluntary Euthanasia Society's carefully orchestrated campaign in recent years, by which it has abandoned the public expression of some of its policies not because they are deemed wrong in principle, but because they seem politically inexpedient (notably, in view of the opposition of disability-rights groups to euthanasia; see 2.1 above). It would seem that the promoters of the 2004 Bill are not aiming to allow euthanasia for all the people they believe should qualify for it. They are, rather, aiming to establish as a principle the legality of euthanasia, but the focus on the terminally ill is in fact unprincipled. Barbara Smoker, Former Chair of the VES, made the VES's position clear in its own newsletter, emphasizing that those who are not terminally ill may, in the VES' view, be better qualified for euthanasia.

    Why should the question of terminality be regarded as a relevant criterion at all? Indeed, provided pain is adequately controlled, the terminally ill patient is less likely to need euthanasia than someone whose equally distressing illness or disability is not terminal, since the latter could face many years of suffering. The two most important criteria are surely the intolerable nature of the condition and its incurability—the proper question being whether an intolerable condition is apparently incurable, not whether it is terminal.[110]

  Euthanasia of those who are terminally ill may result in the loss of days, weeks, months or even years that could have been spent purposefully in spite of—or maybe because of—the difficulties faced by the individual.[111] I am as opposed to euthanasia of those who are terminally ill as I am to euthanasia of disabled people who are not terminally ill. Although the Bill may appear to affect only the former, I believe it will inevitably also affect the latter.


  3.1  I would like the Committee to consider how a change in the law to allow euthanasia will inevitably influence an individual's thoughts about ending his or her life, and how the role of family members and carers (as well as others involved like nurses and doctors) would inevitably change if the law were to allow euthanasia.

  3.2  In 1989, when Alison wanted to die and would have requested euthanasia were it available, I was assisted by the knowledge that the law prohibited it. The legal prohibition demonstrated that a higher value was attached to Alison's life than to her death. If euthanasia is not an option, those associated with someone who wants to die are able to act with the certainty that there is a presumption in favour of life, and to encourage the person who wants to die to find a purpose, meaning and value to their life.

  3.3  If euthanasia were an option, carers, family members and others would live under a constant uncertainty as to what is the best option for someone wanting to die. Instead of being able to assure the person considering euthanasia that their life does have a purpose, meaning and value, there would be an uncertainty as to whether euthanasia would or would not be a better option. Indeed, the encouragement that I gave to Alison over many years—which eventually enabled her to see that her life had a purpose and value—would be regarded as the most intolerable cruelty in a situation where legal euthanasia would allow her to be "put out of her misery."

  3.4  If the Assisted Dying for the Terminally Ill Bill had been enacted in the late 1980s Alison would have qualified for euthanasia. The existence of such legislation would mean that people like Alison were "right to choose death," whereas the only way of encouraging someone to positively re-evaluate their life—as Alison did—is by convincing them that their life does in fact have a value and purpose. And the chances of doing this are greatly diminished if the law is simultaneously telling them that their life does not have a value and purpose—and that their situation is such that not only would they be "right to choose death" but that the means to be killed will be provided. Euthanasia legislation betrays vulnerable people insofar as it reinforces negative attitudes towards their life and facilitates their ending of it.

  3.5  Alison has written about her personal experience in her submission (on behalf of No Less Human) to the Committee. In short, she wanted to die between 1985 and 1995. Between 1985 and 1989 she made several serious attempts at ending her life. Between 1990 and 1995 she wanted to die—she said she would go to bed every night hoping not to wake up in the morning but no longer attempted to end her life. During this period she was able to discern ethical objections to euthanasia even though she did not want to live herself. In August 1995 I accompanied her to visit a small project set up to care for 35 disabled children in India. On the night we left the project, Alison said to me "I think I want to live" and noted that it was the first time she had had such a thought for 10 years. She had "fallen in love" with all the disabled children she had met and wanted to do something to help them. She founded a charity Enable (Working in India) [] which has grown considerably and now supports 350 disabled children, most of them in residential centres built by the charity. Many of these children owe their present happiness and future good prospects to the fact that Alison was not killed under a euthanasia law in the 1980s. Since 1995, Alison has continued to endure much suffering—in some respects it is greater and she is becoming increasingly less able. What has changed is an appreciation of her own life, and an awareness that she can make a difference to others.

  3.6  Although Alison's experience is particularly dramatic, I am familiar with other instances in which people suffering, near the end of their lives, were glad that a choice for death—which might have been made were euthanasia available—had not been made. A friend's wife died of cancer a few years ago. After her death he told me that on several occasions during the last year of her life she had said she could "no longer go on." Yet, at several subsequent stages she would say, "I'm glad I'm still here." If there were a euthanasia law carers (including family members, nurses, etc) would be put under enormous pressure if they heard patients saying they can "no longer go on." As I mentioned earlier, it could be regarded as an intolerable cruelty for them to encourage the person to persevere and, if the law allowed euthanasia, carers might feel obliged to give weight to the patient's expressions in favour of death and see the path towards euthanasia as inevitable. This would in turn reinforce the suffering person's view that death was an appropriate—desirable, even "sensible"—option.

  3.7  In fact, suffering people sometimes need the freedom to say that their life is unbearable, that they cannot go on, that they would prefer death, etc—and to know that they will not be taken at their word. During the period in the 1990s when Alison would not have chosen euthanasia even though she persistently wanted to die, she would say such things. She has frequently expressed her fear that if the law did allow euthanasia she would not have the liberty of saying such things because, if she did, she might be taken at her word. The dynamic of end-of-life decisions is such that if euthanasia were legalized, terminally ill people who might say such things—as they do now, more as a cry for help than with the expectation of being taken at their word—would find that family members and carers might believe that they were inevitably heading down the path towards choosing euthanasia, and the response by carers who anticipate what seems inevitable would in turn further influence the suffering person to choose euthanasia.

  3.8  In short, if the law were to change and allow euthanasia it would not be a simple matter of enabling "choices" to be made. The factors involved in choosing euthanasia are complex, and the very existence of a law allowing euthanasia would tip the balance in favour of decisions to end life. If euthanasia is not prohibited by law it will be regarded as a legitimate—and hence acceptable and good—choice. A change in the law inevitably means that being killed is regarded as a legitimate option for suffering people, and this entails that the continuation of life for the suffering person is not regarded as having a value such that he or she should be protected from lethal harm. Essentially, euthanasia laws indicate that a negative value is attrributed to suffering people and this seems to me—as someone who has a long experience of being with someone who attached no value to her own life—as the ultimate betrayal of suffering people.


  4.1  Some people have objected to the legalisation of voluntary euthanasia not because they object to it in principle, but because they believe it will inevitably lead to involuntary euthanasia which they find objectionable. I believe they are right to believe it will lead to involuntary euthanasia; the so-called "strict safeguards" in place in Holland have been revealed to be cosmetic and it is widely accepted that non-voluntary and involuntary euthanasia takes place there. I believe it is a matter of logic that voluntary euthanasia will always lead to non-voluntary euthanasia,[112] because if voluntary euthanasia is allowed it means that this is regarded as a legitimate and good option. This being so, medical practitioners will inevitably apply this option to patients who have never requested it: the laws of logic would compel them to apply it. This submission has, however, focused on voluntary euthanasia. Although I do not think it is possible to say that one form of euthanasia is "worse" than another, I think there are particular objections to voluntary euthanasia.

  4.2  The particular objection to voluntary euthanasia is that it betrays suffering people who believe death is preferable to life. The proper response to those who want to end their life is to deter them and to present a positive view of life. This is what ordinarily happens with able-bodied people who want to die, and the work of the Samaritans is well known and respected in this regard. With respect to the terminally ill or disabled who want to die a different—very negative—judgment is made about the value of their life.

  4.3  Unless voluntary euthanasia were to be made available for anyone who requested it—irrespective of medical condition—then any law allowing it will ultimately be based not on "choice" but on a negative value of life with a terminal illness or disability. The fact is, however, that whereas some people with a terminal illness or disability may want to die, others may value their lives and not want to die. This shows that the mere existence of terminal illness or disability should not be regarded as an indicator that death is preferable and that causing death is legitimate. Thus suicide/assisted dying/euthanasia for those who are terminally ill or disabled should not be regarded as distinct from the question of suicide generally. The problem to be faced is that some people who are terminally ill (or disabled) have lives that they perceive as lacking meaning, purpose or value. Just as there is a public policy against suicide for able-bodied people—as indicated by unanimous support for the work of the Samarians—likewise there should continue to be a public policy, upheld by the law, against suicide/euthanasia for those who are terminally ill or disabled.


  5.1  In this submission I have generally avoided arguments that I believe are likely to be found in other submissions. I have tried to indicate that a law allowing euthanasia will inevitably undermine the value attached to the lives of those deemed to qualify for it. This submission is written after many years' experience of the very real difficulty of trying to support someone who desperately wanted to die. I understand why euthanasia may seem attractive, but believe support for euthanasia involves a false compassion that reinforces the negativity felt by those who feel life serves no more purpose. Given that not all terminally ill or disabled people believe the continuation of life serves no purpose, it is more appropriate to try to solve the problem by trying to foster a better appreciation of life itself. A law that allows people to be killed—even if it is at their request and with their consent—as a means of overcoming their problems with living is not only inappropriate; it is ultimately a betrayal of the truth that their life has a value. The enactment of the Assisted Dying Bill would be a betrayal of those who would avail themselves of what it allows.

  5.2  I urge the Committee to reject the Assisted Dying bill.

2 September 2004

109   See, for example, the obituary of Laura Branigan in The Times (2 September 2004). Back

110   Barbara Smoker, "Remember the Non-Terminally Ill and the Disabled," Voluntary Euthanasia Society Newsletter (September 1991). Back

111   This is not to say that euthanasia is any more acceptable if the person is apparently unconscious and thought to have no awareness of or purpose in being alive. Back

112   In fact, the UK law has started with the legalization-in case law-of non-voluntary euthanasia. The Bland judgment (1993) that food and fluids need not be given to Tony Bland (who, with continued sustenance, was expected to live for about 30 years) is an example of non-voluntary euthanasia by omission. Since then other people in a persistent non-responsive state have been similarly killed with judicial approval. At the root of all decisions about euthanasia-whether voluntary or non-voluntary-is a view that some lives need not be, or should not be, protected. Instead of further legalizing euthanasia, I recommend that Parliament overturn the Bland judgment and ensure that those who are most vulnerable are granted the protection of the law to which all should be entitled. Back

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