Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence


Memorandum by the Voluntary Euthanasia Society

1.  INTRODUCTION

  1.1  The Voluntary Euthanasia Society (VES) was founded in 1935 by a group of eminent doctors, theologians and lawyers. VES believes the patient should be the decision maker at the end of life irrespective of whether he wishes to prolong his life, or ask for medical help to die if terminally ill. It is for this reason that VES is committed to securing a change in the law so that a terminally ill person who is suffering unbearably may ask for and receive medical help to die.

  1.2  VES has around 55,000 members and supporters. It is the foremost independent research organisation in the United Kingdom on legal and human rights issues relating to end-of-life decision making. VES regularly advises NHS Trusts, doctors and lawyers on end-of-life decision making and advised the European Court of Human Rights in the Dianne Pretty case on the comparative legal position on assisted dying throughout Europe.

  1.3  Currently in the UK many terminally ill people die painful and distressing deaths. This is best understood with reference to neurological illnesses such as Motor Neurone Disease ("MND") and was noted by Lord Steyn in the Dianne Pretty case:

  "She is paralysed from the neck downwards. She has virtually no decipherable speech. Her life expectancy is low. She has only months to live. Yet her intellect and capacity to make decisions is unimpaired. She wishes to be spared the suffering and loss of dignity which is all that is left of her life for her. She wishes to control when and how she dies."

  1.4  The vast majority of people in the UK (over 80 per cent) wish to see a change in the law so that a dying person who is suffering unbearably can ask for and receive medical help to die. The law at present prevents this choice. We recognise that a small minority of our society is opposed to assisted dying—their opposition in many instances being based on their religious beliefs. While respecting their views in relation to their own lives and deaths, we believe it would be undemocratic to allow this minority to impose their beliefs on the majority of our society who do not share their beliefs.

  1.5  We share the view expressed by the General Medical Council that it is for society as a whole, through the democratic process, to determine whether, and on what basis, assisted dying should be made lawful1. This view is shared by the BMA who state: "although the medical profession has an important voice in the debate, ultimately these decisions are for society as a whole, not just doctors"2.

  1.6  We welcome the House of Lords' decision to consider Lord Joffe's Bill in detail. VES believes that regulating the wishes of terminally ill patients by the law of murder and the Suicide Act of 1961 is ineffective, out-dated and inhumane and the Bill puts forward a considered alternative approach to this important issue. The Bill gives terminally ill patients who are suffering unbearably the option of medical help to die. It will also better protect vulnerable people and provide guidance to medical professionals who might otherwise have been criminalised for their compassionate acts.

2.  KEY DEVELOPMENTS SINCE 1994

  Since the House of Lords last considered end-of-life decision-making (including medically assisted dying) 10 years ago, there have been many significant developments including the following:

  2.1  Assisted dying has been decriminalised and underpinned by rigorous legislation in Oregon (1997), the Netherlands (2002) and Belgium (2002).

  2.2  There is a wealth of data on assisted dying, particularly from Oregon and the Netherlands (referred to throughout this submission). This evidence demonstrates that it is far better to provide for medically assisted dying within a properly regulated system.

  2.3  Surveys show that the majority of the UK public, inclusive of elderly and disabled populations, support medically assisted dying3. A recent NOP survey (August 2004) found 82 per cent of respondents support a change in the law. This included 81 per cent of Protestant and Catholic respondents4.

  2.4  Many terminally ill patients support medically assisted dying (73 per cent in a study by Wilson, 2000; 80 per cent in a study by Sullivan, 1997)5.

  2.5  Many UK doctors and nurses now also support a change in the law6. A Medix-UK survey (2004) found that when asked to choose between criminal prohibition and legislation to permit medically assisted dying, 56 per cent of doctors chose legislation7. A 2003 Nursing Times' survey found that two out of three nurses supported a change in the law8.

  2.6  Patient choice is central to NHS policy and patients increasingly wish to make their own medical treatment decisions at the end of life9, as seen in the legal cases of Dianne Pretty, Miss B and most recently, Leslie Burke.

  2.7  Surveys, such as those by the Nursing Times (2003), McLean (1996) and Doctor Magazine (1995) show that doctors and nurses are being asked by their patients for help to die10.

  2.8  Surveys, such as those by The Sunday Times (1998), McLean (1996) and Ward and Tate (1994) also show that in the UK, doctors are already assisting their patients to die11.

  2.9  Three of the House of Lords Select Committee members who were unable to support assisted dying legislation in 1994 now support the Bill12.

  2.10  The Law Commission has recently raised concerns in connection with the Homicide Act 1957 and its application to mercy killing13.

3.  THE IMPACT OF THE CURRENT LAW ON PATIENTS, THEIR FAMILIES AND HEALTHCARE PROFESSIONALS

  3.1  At the request of the Home Secretary, the Law Commission considered the Homicide Act 1957 in its report published on 6 August 2004. Currently, a person who ends the life of a dying person who has asked for help to die, can be charged with murder and if convicted receive a life sentence. This applies even when the dying person is helped to die by a doctor acting out of compassion. The Law Commission noted that: "at present, in such cases, a conviction for murder, with consequent mandatory life sentence, can only be avoided by a `benign conspiracy' between psychiatrists, defence, prosecution and the court, to bring them within diminished responsibility". They further stated: "it is however a blight on our law that such an outcome has to be connived at rather than arising openly and directly from the law"14.

  3.2  The Suicide Act of 1961, which governs England and Wales, is no better. This Act provides that any person who assists in the suicide of another even if they are dying, shall be liable to imprisonment for up to 14 years. However its application is erratic and arbitrary15. This is despite the House of Lords finding in the Dianne Pretty case, that the Director of Public Prosecution could publish guidelines making clear the types of cases he would not prosecute16. This Act is also the harshest of its kind in Europe. Assisting a suicide is not a crime in countries as diverse as Sweden, Finland, Switzerland, Germany and France, and in the Netherlands and Belgium, where medical help to die is underpinned by rigorous legislation17.

  3.3  Evidence clearly shows that despite it being a criminal offence, doctors assist their patients to die 18. A Medix-UK survey (2004) found that 45 per cent of doctors believed their colleagues actively help patients to die (a further 44 per cent were unsure; 4 per cent "would rather not say") 19.

  3.4  Doctors who are asked by a terminally ill patient for help to die can do one of two things: they can ignore the request and risk undermining their relationship with the patient and their patient consequently feeling abandoned20. Alternatively, they can explore the request. If the patient still wants help to die and the doctor gives that assistance, he risks criminal prosecution.

  3.5  In some instances, a terminally ill patient may ask a loved one for help to die. Relatives can feel compelled to help even though they may be prosecuted. The psychological and emotional impact of helping a loved one to die in secret can be immense. Perhaps even worse, when that help has not been successful, the patient can be left in even greater distress and in a worse physical condition21.

  3.6  To end their suffering, dying patients may take their own life, in some cases violently22. Seven per cent of doctors in a Medix-UK survey (2004) reported that at least one of their terminally ill patients had committed or attempted to commit suicide in the last two years23.

  3.7  Others like Reg Crew and John Close, both of whom suffered from MND, may, as a last resort, travel to Dignitas for help to die—an organisation in Switzerland without proper regulation or safeguards24.

  3.8  The use of the Suicide Act 1961 and the law of murder to regulate a terminally ill person's wishes at the end of life is deeply inhumane. Further it:

    —  Does not stop assisted dying. It simply drives it underground where it takes place without transparency or accountability (Meier 2003; Magnusson, 2002; Emanuel 1998; Kohwles 2001; Ward and Tate 1994)25;

    —  Prevents an open discussion between a doctor and a terminally ill patient about the end of that patient's life, causing further anguish (Ryan 1998; Bascom and Tolle 2002)26;

    —  Denies terminally ill patients the choice of medical help to die thereby causing great distress; (Quill and Cassel 2003; Quill 1996)27;

    —  Compassionate doctors who, at the request of a patient, help him to die, have to do so secretly for fear of prosecution. This adds to the doctor's burden and criminalises his compassionate behaviour (Kohwles 2001; Back 2002)28;

    —  The lack of transparency puts vulnerable people at risk (Lee 2003; Emanuel 2002; Brock 2000)29.

  3.9  A law which is not respected, even at great risk to those who break it, is a law that needs changing.

4.  PALLIATIVE CARE AND MEDICALLY ASSISTED DYING

  4.1  VES is committed to the improvement of all palliative care, both in terms of resources and access, and supports the recent House of Commons Health Select Committee's recommendations30.

  4.2  Palliative care should be standard care for all terminally ill patients. However, medically assisted dying should not be seen in opposition to palliative care. Rather, we should adopt a patient centred approach, which provides all options to dying patients, including access to excellent palliative care and a medically assisted death as a last resort31.

  4.3  Some commentators have argued that legalisation would undermine palliative care service provision and its future development32. However the evidence from both Oregon33 and the Netherlands34 demonstrates that palliative care can successfully work alongside the option of help to die. The vast majority of patients who choose assisted dying under the Oregon Death with Dignity Act 1997 (ODDA) are enrolled in hospice programmes35. Oregon hospices continue to care for those who are considering this option36. In the Netherlands, better palliative care has been a core goal of medical policy since the mid 1990's and has improved substantially since that time37.

  4.4  In Belgium, legislation providing all patients with the right to palliative care was passed in parallel with assisted dying legislation38.

  4.5  Research from both the UK (Seale and Addington-Hall) and abroad shows that even with good palliative care, some dying patients still suffer unbearably and want help to die39. The BMA 40 the National Council for Hospice and Specialist Palliative Care Services41 and Macmillan Cancer Relief42, have all recognised that good quality palliative care will not meet every patient's needs.

  4.6  No amount of palliative care can address some patients' concerns regarding their loss of autonomy, loss of control of bodily functions and loss of dignity. An inability to meet these needs arises not because of a failure of palliative care, but because these are person-centred issues. These issues most frequently lie at the heart of a request for help to die43.

5.  CORE PRINCIPLES OF THE BILL

  5.1  The Bill would permit a terminally ill person who is suffering unbearably to ask for and receive medical help to die. Such assistance should be viewed as a "last resort" option, alongside other "last resort" palliative care options (eg sedation at the end of life, withholding and withdrawal of treatment, aggressive pain relief)44.

  5.2  The Bill is very similar to the ODDA but it is not a simple copy. Careful consideration has been given to the experiences of patients, carers, doctors and nurses, as well as vulnerable populations.

  5.3  Autonomy and competence are key principles at the core of virtually all medical treatment decisions. Patients can, without safeguards, refuse to give consent to treatment even if this will lead to their death. At the heart of this decision-making process is a presumption of capacity and respect for the person's autonomy45.

  Munby J reiterated this point in the recent case of Burke versus the General Medical Council on 30 July 2004 46.

He noted:

  ". . .Personal autonomy—the right of self-determination—and dignity are fundamental rights, recognised by the common law and protected by Articles 3 and 8 of the Convention [European Convention of Human Rights]. The personal autonomy which is protected by Article 8 embraces such matters as how one chooses to pass the closing days and moments of one's life and how one manages one's death".

  He further stated:

  "Important as the sanctity of life is, it has to take second place to personal autonomy; and it may have to take second place to human dignity".

  5.4  While autonomy is an important principle in the Bill, it is not unfettered autonomy. The principle of autonomy is counterbalanced by an array of safeguards.

  5.5  Only competent adults, domiciled in England and Wales, suffering unbearably from a terminal illness, can make a request to a doctor for assistance to die. Only the patient, not the doctor, can initiate the process. Before the patient can proceed with his request, he must be seen by two doctors one of whom must be a consulting physician who is a specialist in the patient's condition. The prognosis must be confirmed, and all other alternatives to assisted dying including palliative care must be explored. Should competency be in question, the patient will be referred for a psychiatric assessment. If the patient cannot fulfil all the criteria, his request will fail47.

  5.6  The importance of the patient acting voluntarily is stressed throughout the Bill with a range of safeguards that include a written declaration, which must be independently witnessed by two adults one of whom shall be a practising solicitor48. At any stage the patient can revoke his request 49.

  5.7  The Bill provides that a specialist in palliative care, who can be a doctor or a nurse, is required to attend any patient who requests help to die, in order to see if their needs can be met in an alternative way50.

  5.8  The option of having a medically assisted death can act as "an insurance policy", giving terminally ill patients reassurance that, should their suffering become unbearable, they can request and receive assistance to die. This can help people live with less fear of the future, regardless of whether they ever use this option 51. As Jim Rooney, a Motor Neurone Disease sufferer who received a prescription under the ODDA but died naturally from his disease noted, "Just knowing that this law is an available option is very liberating for a person with my condition"52.

  5.9  In response to the fact that some doctors are uncomfortable with being directly involved in a patient's death, the Bill only permits patient self-administration of medication to hasten death unless the terminally ill patient is physically incapable of ending his own life. This provision will predominantly relate to people suffering from neurological illnesses such as MND. Its key objective is to prolong life—no longer will such patients make the decision to end their life just because they are physically still able to do so. Instead, this provision will enable them to continue to live and give them the reassurance of an assisted death should their suffering become unbearable, even though they are physically incapable of self administration.

  5.10  No healthcare professional (such as a doctor, nurse or pharmacist) with a conscientious objection, is required to take part in assisting a patient to die53.

  5.11  Section 15 of the Bill creates the right of a patient to request and receive such medication as may be necessary to keep him free, as far as possible, from pain and distress. It is a safeguard against pain being a motivating factor behind a request for help to die. In a Medix-UK survey 97 per cent of doctors supported this right54. This is an important clause for three reasons. Firstly, a proportion of patients (3-30 per cent) still suffer from poorly controlled pain at the end-of-life55. For example, a survey published by Cancer BACUP (2001) found that 77 per cent of cancer patients reported they suffered pain, 54 per cent were not involved in making decisions about their pain control and 63 per cent had not discussed the different types of medication available with their doctor56. Secondly, as noted by Rogers and Todd in Palliative Medicine, clinicians can underestimate terminally ill patients' distress and pain57. Thirdly, Home Office proposals to reform the Coroner and Death Certification Service are likely to create further problems around pain relief at the end-of-life. Dame Janet Smith, Chair of the Shipman enquiry, has suggested that investigators should be trained to "think dirty" when looking into causes of death58. In the aforementioned survey, 74 per cent of doctors said they would now be more nervous about prescribing pain relief as a result of these proposed changes59.

6.   RESPONSE TO CONCERNS EXPRESSED ABOUT MEDICALLY ASSISTED DYING

  6.1  It is important to test the validity of concerns in connection with medically assisted dying against the experience and empirical data of countries and states which permit medically assisted dying, most notably, the Netherlands and Oregon. The Select Committee may therefore find it helpful to visit Oregon and the Netherlands or invite relevant professionals from these places to address the Committee.

  6.2  In assessing this data, we think it helpful to proceed on the basis that the humanity, integrity and skills of doctors in both England and Wales and doctors in the Netherlands and Oregon will not be significantly different.

6.3  Slippery slope

    —  We acknowledge that concerns have been raised in connection with a "slippery slope". The concern is that assisted dying legislation for competent terminally ill adults will lead to a devaluing of human life and that vulnerable people will become "victims" of this legislation60. We have found no evidence to support these allegations61. We agree with researchers such as Emanuel, Lee and Brock who have concluded that assisted dying legislation would help ensure doctors adhere to strict safeguards and thus protect vulnerable people62.

    —  Evidence from the Netherlands and Oregon suggests that legislation will not lead to an "avalanche" of assisted deaths. There has been no such increase in Oregon or the Netherlands. Evidence from the Netherlands shows that year on year roughly the same number of patients are assisted to die63.

    —  Further, the Bill has been very tightly drafted and it would require new legislation to extend its scope.

6.4  Reasons for assisted dying

    —  In Oregon, research often led by Dr Linda Ganzini has found that the primary reasons terminally ill patients receive help to die are: loss of autonomy and dignity; being less able to engage in activities; being ready for death; having a poor quality of life; seeing life as existentially pointless; avoiding dependence; and wanting control over the manner and timing of death64. Pain is not a primary concern65.

    —  This research has also found that such patients are more likely to be from a higher socio-economic group, be more educated66, have strong personalities and are forceful and persistent in their request67.

6.5  Competence

    —  Mental health professionals in the USA have observed through their work that the thought processes underlying the decision by terminally ill patients to ask for and receive medical help to die are similar to the thought processes of patients when deciding to refuse life-sustaining treatment68. People who have a terminal illness can and do make rational and reasoned decisions to ask for help to die (see for example, Fenn and Ganzini 1999; Werth and Cobia 1995)69.

    —  Dr Ganzini and others have concluded from looking at all the evidence that depression does not play a role in terminally ill patients in Oregon who receive assistance to die70.

6.6  Burden

    —  Evidence suggests that when patients who receive assistance to die feel "a burden", this is related to their frustration at being dependent on others during their dying process, and is linked to losing autonomy71.

6.7  The effect on the medical profession

    —  There is no evidence that medically assisted dying legislation has an adverse effect on the medical profession.

    —  In Oregon, an unexpected benefit of the legislation has been that it has helped to improve doctors' knowledge and skills in connection with dying patients72.

    —  Professor Back and others have found that based on their research and experience, the best outcome for patients and their families is when the doctor is able to discuss all the patient's concerns and requests, including any request for help to die. If the doctor cannot be open to such a discussion, the patient can feel abandoned and suffer further distress72.

    —  A six country European study found that the best communication between doctors and their patients and families concerning end-of-life decisions, occurred in the Netherlands74

    —  Out of eleven European countries surveyed (including the UK), the Dutch have the highest regard and trust for their doctors75.

    —  We have found no research to show that people would distrust their doctors if medically assisted dying was legalised76.

    —  Surveys show that where assisted dying is permitted, society remains supportive of the legislation. In a survey conducted in Oregon in August 2004, 74 per cent of those surveyed have become more supportive since the ODDA took effect (4 per cent less supportive)77. In the Netherlands, 81 per cent supported assisted dying (a further 7 per cent were neutral)78.

6.8  The "1,000" patient deaths in the Netherlands

    —  The "1,000" cases of patient deaths due to life ending acts in the Netherlands without explicit request are often cited as evidence of abuse of assisted dying legislation79.

    —   We note that this is a concern. However, according to the most recent Government research from the Netherlands, Onwuteaka-Philipsen has found no increase in these types of cases over the last 10 years80. Further, it is incorrect to say that these cases prove "abuse". The authors of the 1991 Remmelink study that identified these "1,000" cases noted: "In more than half of these cases the decision has been discussed with the patient or the patient had in a previous phase of his or her illness expressed a wish for euthanasia should suffering become unbearable . . . The decision to hasten death was then nearly always taken after consultation with the family, nurses, or one or more colleagues. In most cases the amount of time by which, according to the physician, life had been shortened was a few hours or days only"81.

    —  Professor Luc Deliens and others have argued that one of the benefits of assisted dying legislation may be that doctors approach end of life decision making with greater care82. In some countries which lack a properly regulated and transparent system for medically assisted dying, doctors are up to five times more likely to end their patients' lives without their explicit request83. Where there is no transparency or regulation concerning end of life practices (such as in the UK), it is possible that vulnerable people are at greater risk84.

6.9  Reporting in the Netherlands

    —  The percentage of Dutch doctors reporting assisted deaths continues to increase from 18 per cent in 1991 to 54 per cent in 200185.

    —  There is no evidence to indicate that the failure to report reflects abuse or an increase of assisted deaths86.

    —  Dutch doctors who fail to report are not protected by their legal system. They are in the same position as doctors in England and Wales who fail to comply with the law on assisted dying, namely they are subject to criminal prosecution.

    —  The Dutch have recently developed a package of Government measures designed to improve reporting87.

    —  Irrespective of what the criminal law provides in England and Wales, we know from countless surveys that assisted dying does take place but, unlike Oregon and the Netherlands, reporting remains at zero.

6.10  Safeguards in the Bill

    —  The Parliamentary Joint Committee on Human Rights found the Bill's safeguards adequately protect the rights of vulnerable patients88.

    —  The safeguards in the Bill are more stringent than those in Oregon, the Netherlands and Belgium.

    —  These safeguards, when viewed in the context of other end-of-life medical decisions where there is no legislative framework or nationally agreed safeguards, are carefully considered and comprehensive. These other end-of-life medical decisions include decisions to withhold or withdraw treatment, and to provide sedation at the end of life or aggressive pain relief where consciousness levels/competency will be impaired.

6.11  The absence of similar safeguards in other end-of-life decisions

    —  Researchers have noted that abuse is more likely to occur in end of life decisions other than medically assisted dying (eg sedation at the end of life, withholding and withdrawal of treatment). This is because in such cases, the patient may not be the decision maker89. These practices are not underpinned by a legislative framework or even nationally agreed safeguards, thereby exposing vulnerable populations to possible inappropriate end-of-life decisions.

    —  Frequently, withholding and withdrawal of treatment decisions lead to the ending of that patient's life. Patients such as Mr Burke are concerned that when they can no longer communicate, the decision could be made by medical practitioners to withhold and withdraw treatment which could end his life. This concern has been echoed by the Disability Rights Commission90.

    —  We endorse their concern and contend that it is only when the patient is the principal decision maker, as in the Bill, that vulnerable people can be adequately protected.

7.  CONCLUSION

    —  Currently many people in the UK suffer distressing and painful deaths. Many of these terminally ill people would like medical help to die, but under the current law, such help is a criminal offence;

    —  The wish of a dying person like Dianne Pretty to receive medical help to die should not be regulated by the Suicide Act and the law of murder. As recently recognised by the Law Commission, "this is a blight on our law";

    —  Irrespective of what the law may say, health professionals break it on a repeated basis out of compassion and respect for the wishes of their terminally ill patients;

    —  Currently, terminally ill people whose suffering is unbearable may with or without the help of a loved one, attempt to end their own lives sometimes with deeply distressing consequences, not just for the patient but also the relative. In an NOP survey conducted in August 2004, 50 per cent of those surveyed were willing to break the law in such circumstances91;

    —  A law which is not respected, even at such very real risk to those who break it, is a law which needs changing;

    —  The general public, in repeated opinion polls, have made it clear they wish to see the law changed;

    —  Evidence from Oregon and the Netherlands shows that it is far better to provide for medically assisted dying within a properly regulated system;

    —  Lord Joffe's Bill draws on the experience of Oregon in particular. The Bill would not only deliver greater patient choice to terminally ill people who are suffering unbearably, but also provide clear guidance to the medical profession in these circumstances and better protect the more vulnerable groups within our community;

    —  The Bill will give patients better end of life care. For the first time terminally ill patients who need pain relief will have the legal right to request and receive it. Further, for the first time, patients who are terminally ill and ask for medical assistance to die, will have a guaranteed right to be attended by a palliative care specialist;

    —  The Bill gives terminally ill people "an insurance policy" of an assisted death, thereby enabling them to continue to live without so much fear and anxiety about their future. They know that if their suffering becomes too much they can have help to die;

    —  At the most critical time in a patient's life, the Bill will enable open and honest discussion between doctor and patient of all the dying patient's desires and concerns;

    —  The Bill will relieve a considerable burden from the shoulders of many medical professionals. They will no longer have to act in secret out of a fear of prosecution;

    —  Finally, as noted by commentators such as Professor Griffiths and Roger Magnusson, the choice before the Select Committee is not between permitting or preventing medically assisted dying. The choice is between making medically assisted dying visible and regulated, or allowing it to continue "underground", without any safeguards, transparency or accountability.

August 2004

REFERENCES

1  Letter from the General Medical Council to Lord Joffe dated 16 May 2003.

2  Medical Ethics Today: The BMA's handbook of ethics and law, 2nd Ed., BMA Publishing Group, 2004. Chapter 11, page 407

3  Donnison, D and Bryson, C, "Matters of life and Death: attitudes to euthanasia", in Howell, R, Curtice, J, Park, A, Brook, L, and Thomson, K (eds), British Social Attitudes: the 13th report, (Aldershot: SCPR Dartmouth, 1996)

O'Neil, C, Feenan, D, Hughes, C, McAlister, DA, "Attitudes to physician and family assisted suicide: results from a study of public attitudes in Britain", Journal of Medical Ethics 2001; 28 (1): 52

NOP public opinion poll 28 October 2002

NOP Survey 420936, "Choices", 23 July 2004.

4  NOP Survey 420936, "Choices", 23 July 2004.

5  Andraghetti, R, Foran, S, Colebunders, R, Tomlinson, D, Vyras, P, Borleffs, CJ, Fleerackers, Y, Schrooten, W, & Borchert, M, "Euthanasia : from the perspective of HIV infected persons in Europe", HIV Medcine 2001; 2: 3-10

Wilson, K, Scott, JF, Graham, ID, Kozak, JF, Chater, S, Viola, RA, de Faye, BJ, Weaver, LA, and Curran, D, "Attitudes of terminally ill patients toward euthanasia and physician-assisted suicide", Archives of Internal Medicine 2000; 160: 2454-2460

Sullivan, MD, Rapp, S, Fitzgibbon, D, and Chapman, CR, "Pain and the choice to hasten death in patients with painful metastatic cancer", Journal of Palliative Care 1997; 13 (3): 18-28

Suarez-Almazor ME, Belzile, M, and Bruera, E, "Euthanasia and physician-assisted suicide: a comparative survey of physicians, terminally ill cancer patients, and the general population", Journal of Clinical Oncology 1997; 15 (2): 418-427

Emanuel, EJ, Fairclough, DL, Emanuel, LL, "Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers", Journal of the American Medical Association 2000(a); 284 (19): 2460-68.

6  Hemmings, P, "Dying Wishes", Nursing Times 2003; 99 (47): 20-23

Hanlon, TRG, Weiss, MC and Rees, J, "British community pharmacists' views of physician-assisted suicide (PAS)", Journal of Medical Ethics 2000; 26: 363-369

Shah, N, Warner, J, Blizard, B, King, M, "National survey of UK psychiatrists' attitudes to euthanasia", The Lancet 1998; 352: 1360

Medix UK Survey on Physician Assisted Suicide and Euthanasia 2003.

7  Medix Poll Qr564, August 2004.

8  Hemmings, ibid.

9  Refer to: http://www.dh.gov.uk/PolicyAndGuidance/PatientChoice/Choice/fs/en

10  McLean, S, "Survey of medical practitioners' attitudes towards physician assisted suicide", May 1996

BMA News Review, 4 September, 1996

Doctor Magazine, "A deadly dilemma", 9 February 1995.

Hemmings, P, "Dying Wishes", Nursing Times 2003; 99 (47): 20-23.

11  Ward, BJ and Tate, PA, "Attitudes among NHS physicians to requests for euthanasia", BMJ 1994; 308: 1332-4

The Times and Sunday Times Archive, "Focus: Doctor will you help me die?" Sunday 15 Nov

McLean, S, "Survey of medical practitioners' attitudes towards physician assisted suicide", May 1996.

12  Baroness Flather, Baroness Warnock and Baroness Jay.

13  The Law Commission (Law Com 290), Partial Defences to Murder, Cm 6301, August 2004. Refer to this PDF for the full report: http://www.lawcom.gov.uk/files/lc290.pdf

14  The Law Commission (Law Com 290), Partial Defences to Murder, Cm 6301, August 2004; section 1.2 page 7 and 2.34 page 23: http://www.lawcom.gov.uk/files/lc290.pdf

15  The Daily Telegraph, 24 August, 1996

The Observer, 4 December, 1994

See "Notes and references" provided.

16  Refer to Section 80 http://www.parliament.the-stationery-office.co.uk/pa/ld200102/ldjudgmt/jd011129/pretty-4.htm

17  See appendix one of the "Notes and References" provided.

18  UK:

Ward, BJ and Tate, PA, "Attitudes among NHS physicians to requests for euthanasia", BMJ 1994; 308: 1332-4

The Times and Sunday Times Archive, "Focus: Doctor will you help me die?" Sunday 15 Nov

McLean, S, "Survey of medical practitioners' attitudes towards physician assisted suicide", May 1996

Abroad:

Magnusson RJ, Angels of death: Exploring euthanasia underground. (Yale University Press, 2002)

Kohlwes, JR, Koepsell, TD, Rhodes, LA, and Pearlman, RA, "Physicians' responses to patients' requests for physician-assisted suicide", Archives of Internal Medicine 2001; 161 (5): 657-663

Emanuel, EJ, Daniels, ER, Fairclough, DL, and Clarridge, BR, "The practice of euthanaisa and physician-assisted suicide in the United States", JAMA 1998 (a); 280 (6): 507-513

Meier, DE, Emmons, CA, Wallenstein, S, Quill, T, Sean Morrison, R and Cassel, CK, "A national survey of physician-assisted suicide and euthanasia in the United States", NEJM 1998; 338 (17): 1193-1201

Meier, DE, Emmons, CA, Litke, A, Wallenstein, S and Sean Morrison, R, "Characteristics of patients requesting and receiving physician assisted death", Archives of Internal Medicine 2003; 163 (13): 1537-1542

Mitchell, K and Owens, RG, "National survey of medical decisions at end of life made by New Zealand general practitioners", BMJ 2003; 7408 (327): 202-203

van der Heide, A, Deliens, L, Faisst, K, Nilstun, T, Norup, M, Paci, E, van der Wal, G, van der Maas, PJ, "End-of-life decision-making in six European countries: descriptive study", The Lancet 2003; 362: 345-350.

19  Medix Poll Qr564, August 2004.

20  Quill, TE, and Cassel, CK, "Nonabandonment", Annals of Internal Medicine 1995; 122 (5): 368-374.

Quill, TE, and Cassel, CK, "Professional organizations' position statements on physician-assisted suicide: a case for studied neutrality", Ann Intern Med 2003; 138 (3): 208-11.

21  See for example, Sanderson, M, A memoir: Wrong Rooms (Scribner: London, 2002).

22  Ripamonti, C, Filiberti, A, Totis, A, De Conno, F, and Tamburini, M, "Suicide among patients with cancer cared for at home by palliative-care teams", The Lancet 1999; 354: 1877-78

Grzybowska, P, and Finlay, I, "The incidence of suicide in palliative care patients", Palliative Medicine 1997; 11: 313-316.

23  Medix Poll Qr564, August 2004

24  http://www2.netdoctor.co.uk/news/index.asp?id=112660&D=23&M=6&Y=2004

See also "Notes and References" provided.

25  See references listed in 17 above. Particularly:

Emanuel et al, ibid

Magnusson, ibid

Kohlwes et al, ibid.

26  Bascom, PB and Tolle, SW, "Responding to requests for physician assisted suicide: `These are uncharted waters for both of us . . .'", JAMA 2002; 288 (1): 91-98

Sadowsky interviewing Ann Harvath: Hahttp://www.ohsu.edu/son/news/discovery03_4_7.pdf

Ryan, CJ, "Pulling up the runaway: the effect of new evidence on euthanasia's slippery slope", Journal of Medical Ethics 1998; 24: 341-344.

27  Quill, TE, A midwife through the dying process: Stories of healing and hard choices at the end of life, (John Hopkins University Press, 1996).

Quill and Cassel 2003, ibid.

28  Kohlwes et al, ibid

Back, AL, Starks, HM, Hsu, C, Gordon, JR, Bharucha, A, and Pearlman, RA, "Clinician-patient interactions about requests for PAS: A patient and family view", Archives of Intern Med 2002; 16 (2):1257-1265.

29  Emanuel et al 1998, ibid

Magnusson, ibid

Brock, DW, "Misconceived sources of opposition to physician-assisted suicide", Psychology, Public Policy and Law 2000; 6 (2): 305-313.

30  House of Common Health Committee: Palliative Care. Fourth report of session 2003-04, volume 1, July 2004.

31  Quill, TE, Lo, B, and Brock, DW, "Palliative options of last resort: a comparison of voluntary stopping eating and drinking, terminal sedation, physician assisted suicide, and voluntary active euthanasia", JAMA 1997; 278 (23): 2099-2104

Quill, TE, Coombs Lee, B, Nunn, S, "Palliative Treatments of Last Resort : Choosing the Least Harmful Alternative", Annals of Internal Medicine 2000; 132 (6): 488-493

Quill 1996, ibid.

32  The Christian Medical Fellowship: http://www.cmf.org.uk/press_releases/joffebill3.htm

33  Goy, ER, Jackson, A, Harvath, TA, Miller, LL, Delorit, MA, and Ganzini, L, "Oregon hospice nurses and social workers' assessment of physician progress in palliative care over the past 5 years", Palliative and Supportive Care 2003; 1: 215-219

Tolle, SW, "Care of the Dying—Clinical and financial lessons form the Oregon experience", Annals of Internal Medicine 1998; 128 (7): 567-568

Tolle, SW, and Tilden, VP, "Changing end-of-life planning: the Oregon experience", Journal of Palliative Medicine 2002; 5 (2): 311-317

VES personal communication with Ann Jackson, Director of the Oregon Hospice Association (OHA), 16th June 2004-08-27.

34  Korte-Verhoef, R, "Developments in palliative care services in the Netherlands", European Journal of Palliative Care 2004; 11 (1): 34-37

Kuin, A, Courtens, M, Deliens, L et al, "Palliative Care Consultation in the Netherlands: A Nationwide Evaluation Study", Journal of Pain and Sypmtom Management 2004; 27 (1): 53-60.

35  Oregon Department of Human Services (ODHS) 2004, ibid.

36  VES personal communication with Ann Jackson, Executive Director of the Oregon Hospice Association, 17 Aug 2003

37  Korte-Verhoef, ibid

Kuin et al, ibid.

38  Confirmed by VES personal communication with Professor Bert Broeckaert, Director of the interdisciplinary centre for religious studies, Leaven, Belgium, 20 Aug, 2004.

39  Seale, C and Addington-Hall, J, "Euthanasia: The role of good care", Social Science and Medicine 1995; 40 (5): 581-587.

Kohlwes et al, ibid

Ganzini, L, Nelson, HD, Schmidt, TA, Kraemer, DF, Delorit, MA, and Lee, MA, Physicians' experiences with the Oregon death with dignity act", NEJM 2000; 342: 557-63

40  Medical Ethics Today: The BMA's handbook of ethics and law, Chapter 11, page 403. 2nd Ed., BMA Publishing Group, 2004.

41  http://www.hospice-spc-council.org.uk/publicat.ons/text/euthanas.htm

This statement has since been removed from the National Council for Hospice and Specialist Palliative Care website.

42  Macmillan Cancer Relief, End of life issues position statement, Approved 23rd July 2003.

43  Ganzini, L, Silveira, MJ and Johnston, WS, "Predictors and correlates of interest in assisted suicide in the final month of life among ALS patients in Oregon and Washington", Journal of Pain and Sympt Management 2002(a); 24: 312-317

Ganzini, L, and Back, AL, "From the USA: Understanding requests for physician-assisted death", Palliative Medicine 2003(a); 17: 113-4

Ganzini, L, Harvath, TA, Jackson, Goy, ER, Miller, LL, and Delorit, MA, "Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide", NEJM 2002(b); 347: 582-88

Kohlwes et al, ibid

Lavery, JV, Boyle, J, Dickens, BM, Maclean, H, and Singer, PA, "Origins of the desire for euthanasia and assisted suicide in people with HIV -1 or AIDS: a qualitative study", The Lancet 2001; 358 (9279): 362-367

WW, "Clarity?" The Lancet Neurology 2003, 2 (10), 642-643.

44  Quill, TE, Lo, B, and Brock, DW, "Palliative options of last resort: a comparison of voluntary stopping eating and drinking, terminal sedation, physician assisted suicide, and voluntary active euthanasia", JAMA 1997; 278 (23): 2099-2104.

45  See "Notes and References" provided.

46  R (Burke) v The General Medical Council Queens Bench Division on 30 July 2004 Clauses 213 (g),(h) and 80(4).

47  See Section 2 and Section 8 of the Bill.

48  See Section 4 of the Bill.

49  See Section 6 of the Bill.

50  See Section 3 of the Bill.

51  Muskin, PR, "The request to die: role for a psychodynamic perspective on physician-assisted suicide", Journal of American Medical Association 1998; 279: 323-328

See "Notes and References" provided.

52  Coombs Lee B (ed), Compassion in Dying: Stories of dignity and choice, chapter 1, page 1, (New Sage Press: Oregon, 2003).

53  See Section 7 of the Bill.

54  Medix Poll Qr564, August 2004.

55  Rogers, MS, and Todd CJ, "The `right kind' of pain: talking about symptoms in outpatient oncology consultations", Palliative Medicine 2000; 14: 299-307

Larue, F, Colleau, SM, Brasseur, L, and Cleeland, CS, "Multicentre study of cancer pain and its treatment in France", British Medical Journal 1995; 307: 1034-37

Mercadante, S, Armata, M, and Salvaggio, L, "Pain characteristics of advanced lung cancer patients referred to a palliative care service", Pain 1994; 59: 141-5.

Sykes, J, Johnson, R and Hanks, GW, "ABC of palliative care: Difficult pain problems", BMJ 1997; 315: 867-869

http://www.euro.who.int/HEN/Syntheses/palliative/20040723—1

56  CancerBACUP, Freedom from Pain: Pain Management Survey 2001.

57  Rogers and Todd, ibid

Larue et al, ibid

Chan, A and Woodruff, RK, "Communicating with patients with advanced cancer", Journal of Palliative Care 1997; 13 (3): 29-33

Ford, S, Fallowfield, L and Lewis, S, "Can oncologists detect distress in their out-patients and how satisfied are they with their performance during bad news consultations?", British Journal of Cancer 1994; 70: 767-770.

58  Dame Janet Smith, Third Shipman Inquiry Report—Death Certification and The Investigation of Deaths by Coroners, 14th July 2003, http://www.the-shipman-inquiry.org.uk/thirdreport.asp

59  Medix Poll Qr564, August 2004.

60  Kass, L, "`I will give no deadly in drug': Why doctors must not kill" in Foley K and Hendin H, eds., The case against assisted suicide (John Hopkins University Press: Baltimore, 2002) p17-40.

61  See for example:

Oregon Department of Human Services (ODHS), 2004, ibid

Onwuteaka-Philipsen, BD, van der Heide, A, Koper, D et al, "Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995 and 2001", The Lancet 2003; 362: 395-399

Haverkate, I, Onwuteaka-Philipsen, BD, van der Heide, A, Kostense, PJ, van der Wal, G, van der Maas, PJ, "Refused and granted requests for euthanasia and assisted suicide in the Netherlands: interview study with structured questionnaire", BMJ 2000; 321: 865-6

Muller, MT, Kimsma, GK, and van der Wal, G, "Euthanasia and assisted suicide: facts, figures and fancies with special regard to old age", Drugs and Aging 1998; 13 (3): 185-191

Wineberg, H, and Werth, JL, "Physician-assisted suicide in Oregon: What are the key factors?", Death Studies 2003; 27: 501-519

62  Emanuel et al ibid

Brock, DW, "Misconceived sources of opposition to physician-assisted suicide", Psychology, Public Policy and Law 2000; 6 (2): 305-313

Lee, DE, "Physician assisted suicide: a conservative critique of intervention", The Hastings Center Report 2003; 33 (1): 17

63  ODHS 2004, ibid

Onwuteaka-Philipsen et al 2003, ibid.

64  ODHS 2004, ibid

Ganzini, L, Dobscha, SK, Heintz, RT, Press, N, "Oregon physicians' perceptions of patients who request patient assisted suicide and their families", Journal of Palliative Medicine 2003(c); 6 (3): 381-390

Ganzini, L, Harvath, TA, Jackson, Goy, ER, Miller, LL, and Delorit, MA, "Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide", NEJM 2002(b); 347: 582-88

Ganzini, L, Silveira, MJ and Johnston, WS, "Predictors and correlates of interest in assisted suicide in the final month of life among ALS patients in Oregon and Washington", Journal of Pain and Sympt. Management 2002(a); 24: 312-317

Ganzini, L, and Back, AL, "From the USA: Understanding requests for physician-assisted death", Palliative Medicine 2003(a); 17: 113-4.

65  See above references.

66  ODHS, 2004, ibid.

Ganzini et al 2002a, ibid

67  Ganzini, L, Dobscha, SK, Heintz, RT, Press, N, "Oregon physicians' perceptions of patients who request patient assisted suicide and their families", Journal of Palliative Medicine 2003(c); 6 (3): 381-390.

68  See: Brief Amicus Curiae Coalition of Mental Health Professionals, Oregon versus Ashcroft: http://www.compassionindying.org/ashcroft—ruling/mentalhealth—brief.pdf

69  Fenn, D and Ganzini, L, "Attitudes of Oregon psychologists towards physician-assisted suicide and the Oregon Death with Dignity Act", Professional Psychology 1999; 30: 235-44

Werth, J and Cobia, D, "Empirically based criteria for rational suicide: A survey of psychotherapists", Suicide and Life-threatening Behaviour 1995; 25 (2): 231-40

Rogers, Guellette, Abbey-Hines, Carney and Werth 2001. "Rational Suicide: An empirical investigation of counsellor attitudes", Journal of Counselling and Development, 79: 365

Kleespies, PM, Hughes, DH and Gallacher, FP, "Suicide in the medically and terminally ill: Psychological and ethical considerations", Journal of Clinical Psychology 2000; 59 (9): 1153-1171

70  Ganzini, L & Dobscha, SK, "If it isn't depression. . .", Journal of Palliative Medicine 2003(b); 6 (6): 927-930.

71  Ganzini, L, Harvath, TA, Jackson, Goy, ER, Miller, LL, and Delorit, MA, "Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide", NEJM 2002(b); 347: 582-88

Oregon Center for Disease Prevention and Epidemiology, Oregon's Death with Dignity Act: Three years of legalized physician-assisted suicide, (Oregon Health Division: Oregon, 2001).

72  Dobscha, SK, Heintz, RT, Press, N, and Ganzini, L, "Oregon physicians' responses to requests for assisted suicide: a qualitative study", Journal of Palliative Medicine 2004; 7 (3): 451-461

Goy, ER, Jackson, A, Harvath, TA, Miller, LL, Delorit, MA, and Ganzini, L, "Oregon hospice nurses and social workers' assessment of physician progress in palliative care over the past 5 years", Palliative and Supportive Care 2003; 1: 215-219

Ganzini, L, Nelson, HD, Lee, MA, Kraemer, DF, Schmidt, TA, Delorit, MA, "Oregon physicians' attitudes about and experiences with end-of-life care since passage of the Oregon Death with Dignity Act". JAMA 2001; 285 (18): 2363-2369.

73  Back, AL, Starks, HM, Hsu, C, Gordon, JR, Bharucha, A, and Pearlman, RA, "Clinician-patient interactions about requests for PAS: A patient and family view", Archives of Intern Med 2002; 16 (2): 1257-1265

Bascom and Tolle, ibid

Back, AL, and Pearlman, RA, "Desire for physician-assisted suicide: requests for a better death", The Lancet 2001; 358 (9279): 344-345.

74  van der Heide, A, Deliens, L, Faisst, K, Nilstun, T, Norup, M, Paci, E, van der Wal, G, van der Maas, PJ, "End-of-life decision-making in six European countries: descriptive study", The Lancet 2003; 362: 345-350.

75  Kmietovicz, Z, "R.E.S.P.E.C.T.—why doctors are still getting enough of it", BMJ 2002; 324 (7328): 11-14.

76  Graber, MA, Levy, BI, Weir, RF, Opplinger, RA, "Patients' views about physician participation in assisted suicide and euthanasia", J Gen Int Med 1996; 11: 71-76.

77  Davis, Hibbitts, & Midghall Inc—August Omnibus Survey (Death With Dignity) 2004.

78  NIPO (Dutch Marketing Research Institute), 2001.

79  "Briefing notes on voluntary euthanasia and assisted dying": http://www.spuc.org.uk/euthanasia/joffe/briefing.pdf p6

80  Onwuteaka-Philipsen et al 2003, ibid.

81  van der Maas, PJ, van Deldon, JJM, Pijnenborg, L, and Looman, CWN, "Euthanasia and other medical decisions concerning the end of life", The Lancet 1991; 338: 669-674.

82  Deliens L & Bernheim JL 2003. Palliative care and euthanasia in countries with a law on euthanasia. Palliat Med 17 (5), 393-4.

Deliens, L, Mortier, F, Bilson, J, et al, "End-of-life decisions in medical practice in Flanders, Belgium: A nationwide survey", The Lancet 2000; 356: 1806-1811

Ryan, CJ, "Pulling up the runaway: the effect of new evidence on euthanasia's slippery slope", Journal of Medical Ethics 1998; 24: 341-344.

83  Deliens et al 2000, ibid

Kuhse, H, Singer P, Baume P, Clark, P, and Rickard, M, "End-of-life decisions in Australian medical practice", MJA 1997; 166: 191-197.

84  See references in 82 and 29.

85  Onwuteaka-Philipsen et al 2003, ibid.

86  See `Notes and References' provided.

87  Sheldon, T, "New penalties proposed for Dutch doctors who flout euthanasia law", BMJ 2004; 329: 131.

88  http://www.publications.parliament.uk/pa/jt200304/jtselect/jtrights/93/9307.htm

89  Mayo, DJ and Gunderson, M, "Vitalism Revitalized", Hastings Center Report 2002; July-August: 14-21

Brock 2000, ibid

90  http://www.drc-gb.org/newsroom/newsdetails.asp?id=700&section=1

91  NOP Survey 420936, "Choices", 23rd July 2004.


 
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