PRO-CHOICE LIVING WILLS
by Dr Michael Irwin, President 2002 - 2004, World Federation of Right to Die Societies, delivered on 2 October 2004 during their 15th Biennial International Conference in Tokyo, Japan, at the th 27 Annual Conference of the Japan Society for Dying with Dignity
Why is this important document called a “Living Will”? It is “living” because it takes effect before death. And, it is a “will” because it states someone’s wishes. In the past, the typical living will – the traditional living will – only allowed patients to refuse medical interventions which were aimed at prolonging or sustaining life. Thus, opponents of living wills could condemn these documents as being “suicidally motivated refusals of medical treatment”. That expression is actually a quote from a letter which appeared in the Daily Telegraph (a major British national newspaper) in April 1998 which was signed by the Roman Catholic leaders of England and Wales, Scotland and Ireland. In that connection, I would like to digress for a few minutes. It is one of the prevalent assumptions of Western religious culture that the Christian Bible clearly forbids suicide. A friend of mine, who was once a Bishop of Edinburgh, told me a few years ago that there is no prohibition of suicide in the Bible. There are eight cases of suicide described in the Old Testament and one in the New Testament. But, none of these descriptions make any moral or ethical comments about the actual suicides. In fact, Christian disapproval of suicide dates only from the fourth century. Then, the Christian Church, encouraged by St. Augustine, adopted a strict condemnation of suicide precisely because it had become so popular among Christians. A vogue for martyrdom, and even collective suicide, had by then begun to threaten the Church. Any religion which preaches that life on Earth can be a difficult existence, a mere prelude to a better afterlife when one is dead, would seem to be inviting its supporters to kill themselves, unless it can offer a good reason for them to delay their departure for paradise. Declaring suicide to be a mortal sin was the Church’s solution. To return to the subject of living wills, and to move on to the concept of a pro-choice living will. In 1995, the British Law Commission recommended, after a fiveyear study, that living wills in the United Kingdom should be given the official support of a parliamentary law, which is also called a statutory law. Then, and up to today, in the UK, living wills only have the backing of what we call common law, or case law, which I will explain a little later in this talk. Following this Law Commission’s recommendation, there were various discussions and lengthy consultations in my country about the possibility of such a parliamentary law. And, in October 1999, I was interviewed about this proposed law by the legal correspondent of the British Medical Journal. During this interview, I said that, “Of course, a living will could express the wish to stay alive with life-prolonging measures for as long as possible”. Thus, in the United Kingdom, the concept of a prochoice living will was born. During the next four years, the two main Right-to-Die Societies in the United Kingdom – the Voluntary Euthanasia Society of England and Wales, and the Friends At The End, in Scotland – developed, drafted and re-drafted, the pro-choice living wills which each has today. A pro-choice living will allows everyone (from those who support the Right-to-Die movement, like those of us at this meeting, to those who do not) to choose the right treatment options for themselves in the event that they lose the mental capacity to be fully involved, with their physicians, in making such medical decisions about themselves.
Distinguished Guests, Members of the Japan Society for Dying with Dignity, Delegates from Member Societies in the World Federation, Ladies and Gentlemen. Kon-nichi-wa It is a great honour for me to be giving this lecture during the Annual Conference of your Society. As I said yesterday, we, in the World Federation of Right-to-Die Societies, owe a great deal to the Japan Society for Dying with Dignity. You have been a very generous supporter to us and you have been much involved in our worldwide development over the past 28 years. I hope also that many of you will have an opportunity to meet and talk with those of us who have travelled to Japan from overseas for this Conference. Exchanging ideas and personal opinions is always a major part of any international meeting – especially with those from other cultures. The main topic of my talk this afternoon is Pro-Choice Living Wills. I hope that what I say will be of much interest and value to you. There are various forms of living wills – but basically they are documents which allow competent adults to state the type of medical care they would want to receive if they are no longer able to actively participate in such discussions. In my talk today, I will mainly use the expression “living will”, although in English, this document can have other names such as advance directive, advance statement, advance refusal of treatment, and advance decisions. The concept of a living will goes back to the middle of the last century when there were preliminary discussions about it within the Euthanasia Society of America. And, it was a human rights lawyer from Chicago, Luis Kutner who in 1967 developed the idea further within this Society. Incidentally, Kutner was a co-founder of Amnesty International – the international human rights organisation, based in London, which won the Nobel Peace Prize in 1977. The worldwide Right-to-Die movement is mainly based upon the basic human right that nobody should have to suffer excessively. In fact, Article 5 of the United Nations Universal Declaration of Human Rights states that “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment” – and we all know how some terminally-ill situations can be extremely degrading and expose someone to great suffering. Living wills are an essential extension of these basic human rights. Personal choice, patient choice, is at the basis of all existing and draft assisted suicide and voluntary euthanasia laws. In 1976, California became the first State in America to officially recognise the living will. And, soon afterwards, South Australia became the first State outside America to do the same. In 1991, an U.S. Federal Law required all hospitals and nursing homes in America, that receive government funds, to inform patients of their right to prepare living wills concerning their possible future medical care.
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A pro-choice living will allows someone to refuse medical interventions which are aimed at prolonging or sustaining life. But, equally important, this document can be used equally well by those who want medical treatment to be given to prolong their lives for as long as possible. A pro-choice living will shows just how concerned we should all be to make certain that all adults should be able to choose what they want to happen to them at the end of their lives. The essential section of the two pro-choice living wills, available in the United Kingdom today, is that two specific circumstances are described – and, in each situation, individuals have to decide which of the two main directions they want their end-of-life medical care to be taken. One set of circumstances is when there is a “life-threatening physical illness from which there is little or no prospect of recovery”. Examples of this would be the last stages of motor neurone disease, AIDS, a very extensive stroke, or widespread cancer. At least two independent physicians – one being a specialist in the particular branch of Medicine involved – would have to agree that the situation is “life-threatening”. And, they would have to agree that there is a “less than ten per cent likelihood of recovery”. The other main set of circumstances is for a “very serious mental impairment with no prospect of recovery together with a physical need for life-sustaining treatment”. Examples of a serious mental impairment would be advanced dementia (such as Alzheimer’s disease) or a persistent vegetative state. Again, at least two independent physicians would have to agree that there is a less than ten per cent likelihood of any significant improvement in that patient’s mental status. At the same time, in this second category, there would have to be a physical condition – such as a serious infection like pneumonia – which requires medical treatment in order to keep someone alive. Then, for each of these two sets of circumstances, an individual has to choose between “I wish to be kept alive for as long as reasonably possible and consent to all appropriate medical treatment” or “I refuse medical treatment aimed at prolonging or artificially sustaining my life. I consent only to medical treatment whose aim is to keep me comfortable and, so far as possible, free from pain. I refuse all other medical treatment”. Regarding any special medical treatment, there is space on these living will forms for someone to state in detail what particular procedures they do or do not want – such as tube feeding, blood transfusions, renal dialysis, antibiotics, or a mechanical ventilator. And, it is extremely important that all comments about particular procedures are very clear and apply to those medical situations which might arise later for that individual person. It has to be remembered that, while a refusal of a particular procedure is usually legally binding, a request for specific treatment may not be. Generally, a physician cannot be compelled to give a certain treatment if it is against that physician’s clinical judgement. That is why a pro-choice living will says “for as long as reasonably possible” in the statement “I wish to be kept alive for as long as reasonably possible”. Usually, physicians are not required to provide treatment which would be futile or place an unbearable burden on a patient. Another extremely vital part of all living wills today should be the ability to name what is generally called a “Health Care Proxy”, or a power of attorney. Other titles can exist for this person, such as an “Enduring Guardian” in Tasmania or a “Welfare Attorney” in Scotland. This is someone, such as a relative or close friend, who an individual would want to take part in medical discussions and
decisions when that individual is unable to do so. Some living will forms even require the Health Care Proxy to sign the form to show their agreement to take on this important responsibility. And, around the world, public and political support is increasing to give legal status to these proxies so that physicians have to consult them. Who benefits from someone writing a living will? Mainly, of course, it is the patient, and we are all terminally-ill patients sooner or later, unless we are fortunate enough, at an advanced age, to die suddenly, such as after a massive heart attack. Then, physicians benefit since they no longer have to guess what a patient would have wanted. I believe it is advisable that an individual’s personal physician is asked to be a witness of that person signing their living will. Of course, this is not essential, but a different physician, treating someone later in life, may want to confirm someone’s medical treatment wishes by contacting the physician with whom an individual initially discussed their living will. In fact, one of the two societies, with which I have developed the pro-choice living will in recent years, requires an individual’s personal physician to confirm on the form that that individual had the mental capacity to make the decisions set out in their living will – this confirmation of someone’s capacity is likely to avoid any uncertainty if questions are raised at a later date – and that this individual fully understood the possible consequences of their decisions. Furthermore, this physician can ensure that no one else exerted any influence on the decisions which were made. And, thirdly, family and friends have documentary evidence of someone’s wishes about their terminal care – this is extremely important as family arguments or uncertainties can easily arise when someone is terminally-ill. Who should have copies of an individual’s living will? Naturally, one copy must be kept by the health care proxy – with whom the individual signing the living will has had detailed discussions about their personal wishes. The health care proxy is becoming increasingly important in ensuring that someone’s requests about terminal care are properly respected. Then, if an individual’s nearest relative or closest friend is not the health care proxy, that person should also have a copy. A third copy should be held by the personal physician or, as in Denmark today and in other parts of the world, the details of the living will can be kept on a centralised computer for quick and easy reference. Finally, the person signing a living will must have a copy as it is very important to review it regularly – at least, I believe, every three years – and confirm these reviews by signing in the appropriate space on the form. The details of these reviews – with the confirmation that there are no changes in the living will - must also be given to the health care proxy and to the individual’s personal physician. In this connection, if someone’s medical status has changed since the previous living will was signed – for example, if a serious medical problem such as a cancer or a cardio-vascular condition has been diagnosed and is likely to have permanent consequences – then it is necessary to make a new living will which will detail any new personal wishes regarding particular medical procedures. Naturally, all those who had knowledge of the previous living will must be made aware of what has happened. All individuals having living wills should always carry something with them, when they are away from home, which indicates that they have signed such documents and where a copy can be easily obtained. This can be a simple plastic “medical emergency” card
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(similar in size to a credit card) which is kept in a wallet or a handbag. Or, it can be a bracelet or even part of a necklace. I believe that it is increasingly important for living wills to be given official legal parliamentary status around the world. In a few countries - such as in Australia, The Netherlands, Spain and the United States – this has already happened. In other countries, campaigning for this to happen is a vital activity of many Member Societies in our World Federation. But, where parliamentary statutory laws on living wills do not yet exist, as in England at present, then often what is called “common law” or “case law” can apply. Let me expand on this concept of “common law” as it applies in England, my own country. Today, in England, there are three sources of law – common or case law, statute or parliamentary law, and European Union law. The origins of common law in England go back to the 12th century. Before that time, local barons or lords dispensed their own “justice” in their own districts in accordance with local custom. So, there was much variation around the country! Then, in the 12th century, judges began travelling from London around the country, attending the local courts in the various districts. The aim was that there should be a common system of law throughout the land – that is, common law! In time, the decisions of these judges came to be written down, and their decisions would subsequently then be used by other judges as evidence of the law. But, new circumstances in Society would arise and these decisions could be gradually changed. Thus, common law is continuously developing in the English courts. Then, as a hierarchy of courts developed, it was natural that the decisions of the senior courts must be followed by the lower courts. Thus, decisions of the Law Lords – who are members of the House of Lords (the upper chamber of Parliament) in London – must be accepted by all other courts in the country considering similar cases. If there is no relevant Law Lords’ decisions on record, then the High Courts’ decisions are binding, and so on, down through the hierarchy of courts in England! Several English courts, in recent years, have been asked to give opinions on some patients’ living wills – and these decisions can be used if similar problems arise in the future. Thus, in England, we can say that living wills are presently recognised under “common law” – that is, by actions in various courts. And, to reinforce this opinion, I can quote the most senior political legal authority in England (who is called the Lord Chancellor), who wrote in April 1998, in reply to the Roman Catholic leaders – who had referred to living wills as being “suicidally motivated refusals of medical treatment” – that “Under the present law, everyone has the right to refuse medical treatment, even when that decision may lead to death”, and living wills “already have full effect in common law”. Statute law arises when there is an Act of Parliament – and statute law overrides common law. There is no parliamentary legislation yet in England on living wills. However, a draft Mental Capacity Bill (which contains various positive and supporting statements on living wills) is presently being examined in the House of Commons (the lower chamber of Parliament) in London. This may become Law in the coming months, but the outlook is very uncertain.
When I was preparing this lecture a few weeks ago, and thinking about the possibility of common law in other countries, my mind naturally went back to the historic decision taken by the Nagoya High Court, in Central Japan, in 1962 in what is known as the Yamauchi Case. These “six requirements for judgement” on euthanasia are the first such declaration of its kind in any court in the world. Remember these six requirements – the patient must be terminally-ill; the patient is being forced to endure unbearable pain; ending the patient’s life would alleviate his suffering; the patient must request help to die; a physician must take the necessary action; and the method used must be ethically acceptable. These six requirements – stated forty-two years ago – are essentially the basis of the existing laws, and the draft laws, which we have today for physician-assisted suicide and voluntary euthanasia, around the world. Surely this legal case – the Yamauchi Case – is still relevant today in the present discussions occurring in Japan on how to help terminally-ill people? In all of the efforts around the world to strengthen the importance of living wills in the care of terminally-ill people – campaigns led by many Member Societies of our World Federation – it is very important to have the support of the national medical and nursing professions. For example, in 1995, in my country, the British Medical Association, together with the Royal College of Nursing, stated that “Competent, informed adults have an established right to refuse medical procedures in advance”. Later, in 1999, the British Medical Association issued a detailed report on “Withholding and Withdrawing Life-Prolonging Medical Treatment” in which it was stressed that “Where a patient has lost the capacity to make a decision but has a valid advance directive refusing life-prolonging treatment, this must be respected”. And, it added that “Legal action could be taken against a doctor who provides treatment in the face of a valid refusal”. And, I was very pleased to note recently that the Japan Medical Association, in its February 2004 statement on “Professional Ethical Policy of Doctors”, noted that “It is important to confirm the patient’s will through a document that has been written in advance”. Here, I would like to draw your attention to the Tokyo Declaration which has just been adopted by the World Federation. This states that “Health professionals attending the 15th World Conference of the World Federation of Right-to-Die Societies, in Tokyo in October 2004, declare their support for all patients having living wills and other advance directives, documenting their treatment preferences when near the end of life. Also, we believe that physicians, nurses and others caring for patients must acknowledge and follow the directives provided in these documents, even when the choices made by the patient lead to what may be an unintentionally induced hastened death”. We hope that this 2004 Tokyo Declaration will get widespread media attention – both in the general as well as in the medical press – around the world and especially in Japan. However, while the official leadership of the medical profession in many countries may be increasingly supportive of living wills, in the past, with the living will only referring to the refusal of medical treatment, some physicians have been reluctant to support them as they felt that it might indicate to their patients and even their medical colleagues that they were actually supporting “euthanasia”.
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One of the great advantages of the new pro-choice living wills is that all physicians (even those strongly opposed to the right-to-die movement) can now have frank and useful discussions with their patients about end-of-life medical care. Pro-choice living wills can be openly displayed now in medical centres and elsewhere without strong objections being raised by those who are opposed to the right-to-die concept. Where living wills are available, I expect many of you are aware that there have been reports – especially from the United States – that these are sometimes ignored. One report, as recent as two months ago, in the Archives of Internal Medicine, an American journal, concluded that “Internists frequently made treatment decisions that were not consistent with an explicit advance directive. In difficult clinical situations, internists appear to consider other factors, such as prognosis, perceived quality of life and the wishes of family or friends as more important than the directives”. Other reports have indicated other reasons why living wills may be ignored. These range from physicians sometimes being unaware of even the existence of patients’ living wills to the negative attitudes of some individual physicians for living wills (perhaps because they may have personal beliefs that life must be prolonged at all costs). And, of course, it can sometimes be difficult to consider all possible end-of-life situations in a living will – especially as life-sustaining technology continues to evolve. In considering what I have just said, it is therefore very encouraging to note, from a recent report of your Society, that there seems to be great respect for living wills in Japan. Earlier this year, questionnaires were sent to the 727 families where a member of your Society with a living will had died in 2003. Of the 571 replies received, 414 respondents stated that the living will was shown to the patients’ physicians and, for 397, the “understanding” of the physician was obtained and thus the wishes indicated in the living will were respected. In countries where there are problems with getting living wills honoured, it is vital that health care proxies are named. For, in these situations, it is very important to have someone – who an individual can literally trust with their life – who is well aware of what a patient would want in the way of end-of-life medical care – who can speak frankly and honestly for that person when they become unable to speak for themselves. As one American report I read recently noted “With health care proxies, you are dealing with a person – a living, feeling someone who cares about your preferences”. Governments can also assume some additional responsibility to ensure that living wills, and health care proxies, are increasingly recognised and respected. Last June, it was most encouraging to note that, in the U.S. Senate, two Senators had introduced the Advance Directives Improvement and Education Act. This aims to increase public awareness of the importance of living wills, to encourage physicians to discuss medical options with their patients (especially those who develop serious illnesses), and to advise individuals about ways to assure that their living wills are honoured. Before I end my talk this afternoon, I want to refer to two matters which I know are controversial. The first relates to the economic benefits of living wills. We all know that the very great majority of living wills presently request that end-of-life medical care – aimed at prolonging or artificially sustaining someone’s life – should not be continued. End-of-life medical care can be expensive. Thus, respecting someone’s wish
not to have costly treatment can result in savings in a national health care budget. Of course, I would not want politicians to promote the benefits of living wills simply in order to save money – that would be the wrong ethical message – but surely it is necessary to be honest and pragmatic about this? I remember one study that was reported, ten years ago in the Archives of Internal Medicine, which showed that the average hospital costs of 342 patients who had died, in a large Philadelphia teaching hospital, and who did not have living wills, were at least three times greater than the hospital costs of 132 patients who had such documentation. I repeat that I realise this is a controversial aspect of living wills, but surely it cannot be ignored? The second subject I want to mention refers to the present serious difficulties we face, around the world today, in successful campaigns to change national laws to legalise physician-assisted suicide and voluntary euthanasia. These two procedures are legalised in Belgium and The Netherlands, and the former is legalised in Oregon in the United States (where, incidentally, a form of pro-choice living will exists), and is decriminalised in Switzerland. But, elsewhere, with the possible exception of Luxembourg, I think the likelihood of changing the law is very uncertain at present. For supporters of assisted suicide and voluntary euthanasia, like ourselves, this is a somewhat depressing prospect. But, fortunately, I believe in England there is a temporary compromise solution available, which actually obtained confirmation in the High Court, in London in 1997 – that is, it has become part of English common law. And, in some other countries, where similar common laws or court cases exist or could be established, perhaps the same solution could be the next step forward? And, as it involves having an up-to-date, detailed living will, I believe it can appropriately be part of my lecture today! This 1997 High Court case in London concerned a remarkable lady, Annie Lindsell, who was a wonderful campaigner for voluntary euthanasia – who became a close friend of mine. Annie Lindsell went to the High Court as she wanted assurances that her personal physician, Dr. Holmes, could legally administer large enough doses of diamorphine to render her unconscious when her ability to swallow food became affected. Having seen others die of her illness – motor neurone disease – she did not want to go through the final stages of her life choking on her food and possibly also unable to speak. She had stressed in her living will that she did not want tube feeding. At the High Court, after two days of discussion – and palliative care experts gave evidence – it was generally agreed that the course of action she sought from her physician was “acceptable medical practice”. In November 1997, a report in the British Medical Journal, entitled “Court confirms right to palliative treatment for mental distress”, quoted Dr. Holmes as saying, “I do not believe in euthanasia. But I do believe in forthright and unhesitating relief of distress and pain”. He confirmed that he would give Annie Lindsell enough diamorphine “at the time when she develops symptoms which prevent her from eating and drinking” which “would allow her to sleep: therefore there would be no eating or drinking. The decline into death is quite predictable”. As it happened, she died suddenly, a few months later, from respiratory failure, and Dr. Holmes did not have to perform terminal sedation. “Terminal sedation” is an expression which has become increasingly popular in recent years. It can be defined, as in a
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1997 article in the Journal of the American Medical Association, as when “the suffering patient is sedated to unconsciousness.…the sedation is intended to relieve suffering, a long-standing and uncontroversial aim of Medicine”. Terminal sedation is increasingly regarded as “normal medical treatment”. It is openly performed around the world today in hospitals, nursing homes, hospices and private homes. As all lifesustaining interventions are withheld, a patient dies of dehydration, starvation or some secondary complication like pneumonia. The only outcome is death, although of course this may take days or even a week or two to occur. Now, I realise that there are many palliative care practitioners who are actively promoting the concept of “terminal sedation” as an alternative to laws to allow legalised assisted suicide and voluntary euthanasia. In fact, in an article in the European Journal of Palliative Care, last year, it was noted that “We need the option of sedation as the final barrier against euthanasia”. And, I know that this concerns some of my colleagues in the World Federation following the discussion we had on this subject at the Boston World Conference four years ago. But, I believe now that this combination of terminal sedation and the very careful preparation of a detailed living will, could provide some of us with a temporary compromise in the euthanasia debate we are having in many countries today. I want to stress that this would only be a “temporary compromise” until the political climate is more supportive of new laws to legalise assisted suicide and voluntary euthanasia. Imagine yourself not having the “luxury” of dying suddenly, at an advanced age, from a massive heart attack or a stroke. Instead, you have come to the stage, which the majority of us will have to face, of developing your terminal illness. This is now the time when you must carefully modify your living will, or perhaps, write a new one – if possible, with the help of a physician – to include very special instructions on what medical procedures you will not accept (or conversely, in a pro-choice living will, you can state that, as much as reasonably possible, you want certain treatments provided), bearing in mind the nature of your final illness. Thus, for example, while still sufficiently competent, early victims of Alzheimer’s dementia can reject, or express a wish to receive, antibiotics if later they develop an infection like pneumonia. Or, someone with progressive motor neurone disease could, like Annie Lindsell in London seven years ago, state that they did not want tube feeding. Then, when it comes to respect and honour your living will instructions, the possibility of terminal sedation could arise – to completely relieve any physical or psychological distress that occurs due to the decisions you have made in your living will. One of our leading British palliative care specialists, Dr. Robert Twycross, who is firmly opposed to euthanasia, has often advocated deep sedation for the control of what he calls “terminal anguish”. And, he has noted that “a doctor who leaves a patient to suffer is morally more reprehensible than the doctor who performs euthanasia”. Around the world, we must openly discuss the increasing use of terminal sedation by the medical profession. There must be much greater public knowledge of this procedure. Of course, we must realise that by creating the illusion of a “natural death”, and avoiding any sense of urgency, there are many terminally-ill patients, and their families, who will prefer terminal sedation to a single, lethal injection. That is their choice.
But, we, at this meeting, who favour the quicker process of voluntary euthanasia – of a single injection to end the suffering of a terminal illness – do so because we believe that, with terminal sedation, our dignity is compromised and our relatives and friends are left with the unfortunate memory of someone dying slowly. I stress that what I am proposing – the combination of terminal sedation with a very detailed living will, carefully modified to deal with the particular problems likely to arise from someone’s developing terminal illness – is only a temporary compromise. Then, with increasing global knowledge of the extent to which terminal sedation occurs, and greater acceptance of this practice – which, let us be honest, it really “slow euthanasia” – to relieve terminal anguish and distress, I believe it will eventually become much easier to get the necessary political agreement on the need for physician-assisted suicide and voluntary euthanasia to be legalised. As the Boston Declaration, four years ago, stated, “the only real difference between terminal sedation and a rapidly effective (single) lethal dose is one of time – a slow death, over a few days (or a week or more), with life-shortening palliative drugs versus a more dignified and peaceful death, because it is not prolonged, and is determined by the patient”. Finally, let me stress that whatever the future holds for us, in our various national campaigns for physician-assisted dying, the basis for all that we do is still the living will. This allows all of us to state how we want to be treated at the end of our lives, whether – especially with a pro-choice living will – it be very limited medical care or to provide as much care as possible. A pro-choice living will can generate very useful discussions between the person making it, their physicians, and their family and friends. All responsible adults should have a regular will stating exactly where their financial assets and possessions will go. And, all responsible adults should have a pro-choice living will, which is regularly updated, which may be of very great assistance some day to their physicians, family and friends, and, above all, to themselves. Arigatoo 2 October 2004
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