Physician Assisted Suicide & Advanced Directives

Dr Michael Jarmulowicz. MRCPath. MB.BS., BSc.
Consultant Histopathologist
Reproduced with permission

Introduction

The campaign for euthanasia has been ongoing for many years, but it is now entering a phase where the medical profession is being directly targeted and being persuaded that it is for the patient's benefit. Let me start by quoting from an article, written by someone at the Queen's University of Belfast, promoting euthanasia. "The aims of this article are: to generate debate among professionals; to present a three-way discussion that might be useful as a focus for educational purposes, particularly at undergraduate level; to challenge professionals to confront the issue of euthanasia; and to plead the case of those who request assistance in exercising autonomy by gaining control over their own deaths."1 The campaigners feel it is important to target the medical students!

Before starting let me remind you of a useful fact, which I first heard in a talk by an American. "All social engineering has to be preceded by a period of verbal engineering." What does that mean? If someone stood up and said "All elderly people should be forcibly killed as they are a burden to society" then they are unlikely to get much of a hearing, but if that same person stood up and said "I propose to introduce legislation which will give our elderly citizens in the twilight years a new right, and that right should be that they should die with dignity" then many will stop to listen. In any of the ethical debates bear this in mind. Listen carefully to how the argument is proposed, and what wording is used. Don't forget that equally we can usefully use this same approach.

Many will be unaware that the Royal College of Physicians together with the Royal College of General Practitioners has set up a committee, under the chairmanship of Judge Tumin, to look at the topic of euthanasia yet again. They have refused to disclose the names of the individuals on the committee, arguing that if they were published they may well receive a large amount of mail from those campaigning on both sides. We do know that Judge Tumin is chairing the committee and we also know that the BMA has a representative on that committee. My last letter from the committee on 5th November 98 stated that they had held their first meeting and were developing a programme of work. In due course they would be seeking views from others. Is this a committee with pre-formed views?

Where are we on the path to euthanasia?

Currently public opinion, and I strongly believe medical opinion, is on the whole against direct euthanasia - ie administration of lethal injections. Obviously there are vociferous groups, such as the Voluntary Euthanasia Society, advocating that such practices should be made legal. Although we may feel relieved that euthanasia is unlikely to be legalised in the immediate future, there must be no complacency. I firmly believe that the strategy being used to legalise euthanasia will be in three stages. The first stage is already well under way - that is the legalisation of advance directives (Living wills); If this is successful it will be followed by the introduction of Physician Assisted Suicide; and then when that is accepted, direct euthanasia by lethal injection.

The legal position of Advance Directives

An advance directive, also called a living will, is a document made by an individual specifying how they would like to be medically treated if they are mentally incompetent to make that decision in the future. Interestingly advance directives only specify refusal of treatments. Many believe that these documents are already legally binding, despite there being no legislation in this area. The reason is the case of a man in Broadmoor who got gangrene of his leg, and was advised to have an amputation. He refused. The doctors went to the court, which decided on medical advice that the patient was not, at that time, psychotic and was therefore legally entitled to refuse medical treatment. The legal judgement also stated, that if he should, in the future, become mentally incompetent his decision to refuse the amputation would stand. Those advocating advance directives have seized on this case claiming that the law has decided in favour of legally binding advance directives. However the judgement was specific in that it related to a refusal of treatment for a specific medical condition from which the patient was suffering. It was not a judgement which said all advance directives were legally binding.

However, many solicitors I have spoken to are arguing that advance directives are legally binding. The draft version of a General Medical Council document on consent was going to state that a doctor must adhere to an advance directive. Fortunately a pro-life member of that committee argued against this wording and the final version now reads:- "You must respect any refusal of treatment given when the patient was competent, provided the decision in the advance statement is clearly applicable to the present circumstances......... 2" I will address the issues of withdrawal of treatment and advance directives later in this talk.

Physician assisted suicide.

In preparation for this talk, I did a MedLine search - a computerised index of medical literature - to see what was written on the subject of Physician Assisted Suicide. My search found 799 references to this topic since 1995, of which 135 were published in 1998. I didn't have time to see how many were on each side of the debate, but it gives you some idea of how topical this subject is in medical circles. Many of the articles are surveys of doctors and nurses views (I will give you details below) but some have disturbing titles:- Terminal Dehydration as an Alternative to Physician-Assisted Suicide3; Voluntary Death: A Comparison of Terminal Dehydration and Physician-Assisted Suicide4. Cost savings at the end of life. What do the data show5; Potential cost savings from legalising physician assisted suicide6.

Let us start by looking at some of the references I have just quoted; most of which come from America. Potential cost savings - Many commentators note that 30% of the Medicare budget is spent on the 5% of Medicare patients who die each year. These individuals argue that savings from reduced use of expensive technological interventions at the end of life are both necessary and desirable. In Holland 2.7% of patients ask for and get euthanasia/physician assisted suicide. The Dutch suggest that the lives of these patients was shortened by less than one month. Assuming that 2.7% of Americans would, like the Dutch, choose physician assisted suicide, and assuming that their lives would be one month shorter this would save $627 million at 1995 rates6. Interestingly the authors of the paper recognise that a further 4.3% of Dutch patients are given euthanasia without their consent. They therefore calculate that if these also got physician assisted suicide in the USA, this would amount to a saving of $1.63 billion! The paper I am quoting from makes other calculations and comes out with a maximum potential saving of $4.67 billion.

There are three arguments for physician assisted suicide.

  1. Patient autonomy ("what right has anyone else to tell me what to do/not to do"). Patients should have increased control over their living, their dying and their death.
  2. The ethical principle of 'First do no harm' should no longer be understood in the context of death being the ultimate harm, because with the advance of modern medicine being kept alive under worsening circumstances may be a fate worse than death.
  3. The alleviation of intense suffering means that in some circumstances it can be the duty of a doctor to assist a patient to kill himself.

The main argument for doctor assisted suicide is based on patient autonomy ('What right has anyone else to tell me what to do/not to do'). The campaigns stress that it is the patient who will take the lethal cocktail of drugs. Because the doctor's action will be limited to issuing the prescription and ensuring it is a lethal dose, and it is the patient's decision to take the drugs, it removes any moral responsibility from the doctor. Some argue that suicide is now legal (because the suicide law was repealed). These people have made an error in logic by suggesting because the law was repealed it is now legal to commit suicide. The reality was that the law recognised that the vast majority of people attempting suicide were mentally ill and in need of medical/psychiatric treatment, not processing by the criminal justice system! (It is still illegal to assist a suicide)

Let us look more closely at the argument of patient autonomy. Let us imagine the situation where a patient has undergone a religious conversion. Previously he has been an unreformed thief, and is finding great difficulty following the commandment against stealing. Since he interprets the Bible literally he now asks for an amputation of his hand quoting the passage from Scripture (Matthew 5:30) "And if your right hand should cause you to sin, cut it off and throw it away; for it will do you less harm to lose one part of you than to have your whole body go to hell." How many doctors would agree to such surgery? None - and I suspect that any doctor performing such an amputation would be struck off - in the same way that doctors performing female circumcision would be struck off by the GMC. So in reality it is the doctor who decides. If patient autonomy was the underlying principle, then the doctor would have no right to question the decision, and would go ahead with whatever the patient demanded.

So let us further analyse the principle involved. In a request for physician assisted suicide (or euthanasia) the patient is saying "My life is no longer worth living" and the doctor is agreeing and saying "Yes - I agree your life is no longer worthwhile." It is this specific fact that will be so damaging. The day that doctors - or anyone for that matter - start deciding that an individual's life is no longer worthwhile will be a tragic day. Although it is always dangerous to make comparisons with Nazi Germany, because it always generates a great deal of heat and emotion, let us not forget that before the main Holocaust, mentally and physically handicapped were given euthanasia under a law which specifically used the term 'life devoid of value', ie. worthless; no longer worth living.

It is interesting to note that doctors and nurses views on assisted suicide and euthanasia is very different when asked whether they would participate. For example a survey of nurses found that 71% thought that physician assisted suicide might "sometimes be right". 67% believed the law should be changed to allow this, but only 30% were willing to assist patients to give themselves the lethal dose, while only 14% were willing to administer the lethal dose to the patient7.

How is it that people can seriously discuss such arguments? They are a natural consequence of arguments relating to consent to treatment and withdrawal of treatment.

Before leaving this section on physician assisted suicide, I feel it is important to uptake you with a very recent reference detailing the first year's experience of legalised physician assisted suicide in Oregon8. The law was passed on October 27th 1997. The law requires that the patient must be competent, must have an illness that is expected to lead to death within six months. The patient must make one written and two oral requests to their doctor. The two oral requests must be separated by at least 15 days. The patient's primary physician and a consultant are required to confirm the diagnosis of a terminal condition, the prognosis, determine that the patient is capable, and refer the patient for counselling if either believes that the patient's judgement is impaired by depression or other psychiatric disorder. The law states that the primary physician must also inform the patient of all feasible alternatives,. Finally they must report all prescriptions that they write for lethal medications to the Oregon Health Division.

23 prescriptions have been issued. 15 have died after taking their lethal drugs, 6 have died from their underlying illnesses, and two were alive as of January 1st 1999 (I assume that means they have not taken the drugs). What were the reasons given for requesting physician assisted suicide? The reasons are listed in the table below. Obviously some patients gave more than one reason.

Reason Number
Cost of treatment 0
Burden on family and friends 2
Inability to participate in activities 10
Inadequate pain control 1
Loss of autonomy due to illness 12
Loss of control of bodily functions 8

Of great significance is the rate of Physician Assisted Suicide expressed as rate per 10,000 deaths, when examined by marital status.

Marital Status Suicide rate per 10,000 deaths
Married 7.4
Widowed 26.7
Divorced 50.4
Never Married 175.4

Withdrawal of Treatment.

The BMA ethics committee is stating that it needs to discuss this issue, as it is getting increasing numbers of requests for advice on when to withdraw/withhold treatment. Why has it become a problem and an issue? In the early days treatment options were limited and not always successful. More recently as treatment options become more varied, and medicine in general is becoming more successful at curing and treating a wider range of diseases, then decisions of when and what to treat and when and what NOT to treat are having to be made on a more frequent basis. Sometimes it is lack of resources which is the issue. When there are limited dialysis machines, how do you decide which patients in chronic renal failure should be on the dialysis programme? At other times decisions on whether to treat are based on questions such as:- Will the patient survive this operation? Is the patient already so ill that they are unlikely to survive regardless of what is done? I believe that doctors have been making such treatment decisions for years, without major difficulty.

The difficulty now is because there has been a real blurring of the distinction between valid withdrawal of treatment and euthanasia. I believe that the crucial legal decision which precipitated this cultural change was the Bland decision. Here the Law Lords agreed to the removal of the feeding tube from Tony Bland (a victim of the Hillsborough football stadium disaster).

Let me quote from the Law Lords judgement. Lord Browne-Wilkinson stated "In my judgement there can be no real doubt ...... that the whole purpose of stopping artificial feeding is to bring about the death of Tony Bland." and Lord Mustill said "As I understand the position they [the doctors] have all, with heavy hearts, taken the ethical decision...... that Anthony Bland's life should be brought to an end." Not only is the intent that Tony Bland should die not denied, it is emphatically stated. Reading the rest of the court proceedings clearly shows that the case was an exercise in turning this intent into a reality while at the same time making it appear to be a proper ethical decision and method - sadly an approach that has persuaded many.

It is useful here to quote from an international meeting of right to die societies in 1984. "If we can get people to accept the removal of all treatment and care - especially the removal of food and fluids - they will see what a painful way this is to die, and then in the patient's best interest, they will accept the lethal injection9." This idea was most worrying voiced by one of the Law Lords in his judgement, and I believe that people are re-iterating this argument. Lord Goff stated "It can be asked why, if the doctor by discontinuing treatment, is entitled in consequence to let the patient die, it should not be lawful to put him out of his misery straight away, in a more humane manner, by a lethal injection, rather than let him linger on in pain until he die."

So you can see why there has been this coming together of euthanasia with withdrawal of treatment. Obviously there are totally valid and ethical reasons to withdraw and withhold treatment. Another phrase which is becoming increasingly used in legal decisions - such as the Tony Bland case - is to say that it "is in the patient's best interests". Let us examine these two issues.

I have yet to find an article promoting euthanasia, and using the term "patient's best interests" to define what they mean. We have argued to government and medical bodies, that as doctors we should be considering Medical Best Interests - not social, family etc, etc. Medical Bests Interests should be concerned with:- Restoration of health; Prevention of disability; and when that is not possible, the Relief of symptoms.

The Bland judgement also distorted our understanding of medical treatment, and stated because feeding was via a tube that it was "medical treatment". Our understanding of treatment is different. Obviously some treatment is curative, but where treatment is not curative it should be directed to:- Relief of symptoms; Sustaining of life; and Prevention of incapacity. It is important always to bear in mind that the benefits of treatment should outweigh the burdens and should be proportionate to the desired outcome.

Treatment can and should be withdrawn or withheld when or if it will not bring about beneficial effect intended or it places an unacceptable or disproportionate burden on the patient. Nutrition and Hydration do not fulfil criteria of medical treatment and should be regarded as basic care.

Withdrawal of food and fluids to bring about death is euthanasia.

Let me give you two examples of when it is acceptable NOT to give food and fluids. The first is in a patient who is in a terminal stage of upper intestinal obstruction due to cancer. Putting any food or fluid into the stomach will be immediately vomited, with the risk of inhalation into the lungs. The patient is dying and death will be from the tumour, and not due to removal of fluids.

The second example, which is more difficult, is from an actual case reported to the Guild of Catholic Doctors, by a Catholic anaesthetist. A new-born baby was found to have intestinal obstruction, and was operated on at seven hours of age to identify the cause of obstruction. There is a disease (Hirschprung's disease) where the nerves do not properly form along the full length of the gut. After several hours of surgery, with repeated biopsies to the identify where nerves appeared in the gut, they identified nerves at the level of the stomach. This is insufficient for normal function as no food can be absorbed. In this case the doctors decided to give parental nutrition (special digested food directly into the blood) which almost inevitably leads to liver failure within a few years. Which is preferable - allow the baby to die soon after birth, or give parental nutrition and then watch the baby die of liver failure a few years later?

Living Wills - Advanced Directives

What are living wills? Why are they important to us?

The main reason for bringing this topic up for a discussion and linking it to ethics is that there is a close association between living wills, physician assisted suicide, and euthanasia. The most vociferous proponents of living wills are the voluntary euthanasia societies.

Let me start by showing you an advertisement which appeared in the Daily Telegraph last August. "If they cannot hear you, how will they treat you? You are strong enough to consider the prospect that one day you might become terminally ill, suffer irreversible mental damage or fall into a coma, leaving others to make decisions about your medical treatment. Equally, you may have strong views about those decisions and how they should be made. A living will ensures that your wishes about your treatment will be heard the Telegraph willmaker offers a simple "do-it-yourself" guide, including all the forms you need."

At first reading you may well ask the question - what is wrong with them? Aren't they a good idea? As doctors we accept that we cannot treat any patient without their consent, and at first sight this advanced directive will give the doctors clear instructions of what you find acceptable and not acceptable.

But let me show you a typical advanced directive. The key phrases that appear are:- 'That I am not to be subjected to any medical intervention or treatment aimed at prolonging or sustaining my life.' But what about a patient who has been taking insulin for the last 20 years? What about other drugs which the patient is already taking? In heart failure one of the symptoms is breathless. The drugs used to treat heart failure control this symptom. What about a patient with lower bowel obstruction?

Answers to these questions are partly answered by the second clause:- 'That any distressing symptoms (including any caused by lack of food or fluid) are to be fully controlled by appropriate analgesic or other treatment, even though that treatment may shorten my life.'

Since 1991 in America there has been the Patient Self-determination Act which requires that all patients entering hospital who will be treated by Medicare and Medicaid insurance are to be asked whether they have signed a living will. The aim here is to save money. President Carter was advised that "the cost saving from a nationwide push towards 'Living Wills' is likely to be enormous.10"

Let me once again return to advance directives. What is so wrong with them. You are asked while you are fit and well how you will want to be treated in 5, 10,20 or even 30 years. You have no idea what disease you might have and what treatments will be then available. Society has been pushing for informed consent. The consent forms for operations have now changed so that they very specifically state that informed consent is given. How many politicians when put on the spot and - quite properly - reply 'We will look at each individual case and the circumstances as they arise' Yet in living wills (and the danger is that the proponents want them to be binding on doctors) you are being asked to give a blanket directive without any information on the circumstances which might prevail. And yet with Advanced directives we are asking someone who is fit and well to decide what they would want done if they had an unknown illness. One crucial factor about serious illness is that it changes your perspective of life. Above all it is this factor that most strongly reinforces my view that Living wills are clever and subtle ways to achieve far more than is at face value apparent.

How can we be sure that an advance directive is valid? Consider a frail elderly person, who because of their frailty now has to rely on others - their family. It is easy to envisage how those finding difficulty in looking after their frail relative could pressurise them to sign an advance directive refusing medical treatment. It is interesting that in the British Medical Journal of only one month ago, an article from the old age psychiatry department, Oxford, published an article assessing whether patients with mild dementia were competent to write an advance directive11. They recognised that the general living wills signed by healthy people years earlier may not be helpful, and suggested that it was ".....more worthwhile for advance directives to be completed at a time when people already have some disease or disability, enabling doctors to give realistic guidance about possible future situations." Although they described some objective measurement of a patient's competence their aim was "to ensure that patients are not regarded as incompetent because of cognitive impairment (such as memory difficulties), which is not critical to competence but which can interfere with assessment procedures." The last paragraph of the paper states "Specialists in geriatric, neurology, or psychiatry may wish to use it in discussing advance directives with patient's on their first presentation for dementia." In my view it appears as if the medical profession is suggesting that patient's newly diagnosed with dementia should be asked whether they would like non-treatment and withdrawal of food and fluids when the deteriorate!

There is also the possibility of inappropriate care. I have certainly heard of a case of a woman who had signed an advance directive refusing a naso-gastric tube. She had a mild stroke with some swallowing difficulty (fairly common, but which usually improves). Although she was competent, doctors had read her living will, and did not even ask her, but decided not to insert a naso-gastric tube. They therefore gave her a meal normally, but because of her swallowing difficulty she inhaled the food and developed aspiration pneumonia.

Update on Dutch euthanasia figures

Although this talk is about physician assisted suicide, I think it is important to give you the figures for euthanasia in Holland.

  1995 1990
All Deaths in Holland 135,500 129,000
Requests for euthanasia 9,700 8,900
Euthanasia applied 3,200 2,300
Assisted suicide 400 400
Euthanasia without request 900 1,000
Increased drugs to shorten life 2,000 1,350
Increased drugs partly to shorten life 2,850 6,750
Increased drugs expect shortening of life 15,150 14,400
Withdrawing/withholding Rx 27,300 22,500

You will note from the above figures that 20% of direct active euthanasia deaths occurs without the patient's explicit request. Although I haven't given the breakdown of figures, in only 31% of cases where doctors had increased drug doses to shorten life, had the patients requested this action. In 1995 only 41% of cases of euthanasia and assisted suicide were reported as required by law, compared with 18% in 1990. The most common reasons for not reporting were:

And Holland is held up as a model where legalisation of euthanasia works and is well controlled!

References

1 Beneficient voluntary active euthanasia: a challenge to professionals caring for terminally ill patients. Nursing Ethics. 1998:5;294-306. [Back]

2 Seeking patients' consent: the ethical considerations. General Medical Council. November 1998. [Back]

3 Terminal Dehydration as an Alternative to Physician-Assisted Suicide. Annals of Internal Medicine, 1998:129; 1080-1082. [Back]

4  Voluntary Death: A Comparison of Terminal Dehydration and Physician-Assisted Suicide. Annals of Internal Medicine. 1998: 128;559-562. [Back]

5 Cost savings at the end of life. What do the data show. Journal American Medical Association. 1996:275;1907-14. [Back]

6 Potential cost savings from legalising physician assisted suicide; New England Journal of Medicine. 1998: 339; 1789-90. [Back]

7 Nurses' attitudes to active voluntary euthanasia: a survey in the Australian Capital Territory. Australian & New Zealand Journal of Public Health. 1998: 22; 276-8. [Back]

8 Legalised physician-assisted suicide in Oregon - the first year's experience. New England Journal of Medicine. 1999: 340; 577-583. [Back]

9 Transcript from tape recordings of proceedings of the Fifth Biennial Conference on the World's Right to Die Societies; Nice, France; September 20-23, 1984. From "Ethics panel: The Right to Choose Your Death - 'Ethical Aspects of Euthanasia."' Remarks by panel member Helga Kubse, PhD., September 21, 1984. [Back]

10 Memorandum from R.A Durzon. USA Department of Health, Education & Welfare, Health Care Financing Administration, to President Carter. 1977. [Back]

11 Assessment of competence to complete advance directives: validation of a patient centred approach. British Medical Journal. 1999: 318; 493-7. (20th February) [Back]

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