The Clerk to the Select Committee on Medical Ethics Committee Office
House of Lords
London SW1A 0PW)
1a. In preparation for a paper for the 1994 World Congress on Medical Law in 1994 in Jerusalem, I engaged on a study of living wills and relevant legislation and strategies from around the world. In all, over 60 different documents have been collected, all currently in use, and translations into English obtained where appropriate. This work has been greatly facilitated by my post as Executive Secretary of Exit (VESS), itself a member of the World Federation of Right-To-Die Societies. The study does not seek to promote the policies or documents of VESS however: the scientific presentation of such data collected is likely to suggest modifications to existing documents.
1b. The aim of this paper is an effort in cooperation to finding solutions to pressing problems; both the author and VESS wish to achieve progress through consultation and consensus wherever possible, rather than in any way taking a polarized stance.
1c. The Society has kept the word euthanasia in its title as it helps to provide a focal point for a great number of issues, but the word is open to a wide variety of definitions, many of which are contradictory and breed confusions. The areas considered in this submission may or may not be classified as euthanasia: to avoid unnecessary emotive distortions, the word has been generally avoided in the text, and phrases more conducive to consensus definition and medical understanding used. See also Para 13, infra. (Definitions of euthanasia that have a majority international and academic support are discussed in the Glossary).
1d. References to supporting documentation have been included, but with some regards to space and the short time available to prepare the submission. Further references and documentation are willingly offered, as are oral submissions.
2a. In the context of health care, an Advance Directive is a document containing advance directions by the patient on health care treatment or non-treatment, or directions on how decisions concerning such treatment or non-treatment should be taken. Although these may include consent, or authority to consent, for particular treatments, they more commonly refer to non-treatment (or withdrawal of treatment).
2b. There are two main types of Advance Directive:
2c. These types of advance directives may operate independently or in conjunction with each other.
2d. In the presence or absence of legislation, or when legislation is being considered, accurate definitions will help to avoid confusion. The terms "Advance Directive", and, more particularly, "Living Will", have already fallen into common parlance. In America the terms have specific legal meanings and in some states form part of the title of the statute.
2e. The suggestion by King's College/Terrence Higgins Trust, based on a very limited study, and yet taken up by the British Medical Association, that "advance directives" pertain to documents for consent or refusal of treatment while "living wills" refer only to refusal of treatment is not well supported.
2f. Similarly, the suggestion by the Voluntary Euthanasia Society (VES) that use of the term "Living Will" will lead to confusion with a "Last Will and Testament" has not been supported by developments in recent times. "Living Wills" are widely discussed in the popular press and the term is now known to most health care workers. If it does not cause confusion to the man in the street, there is no reason it should do so to lawyers or law-makers.
2g. This submission proposes that the definitions already widespread in many parts of the world, both in law and in common use, accepted in common parlance in this country and following a semantic logic that is almost self-explanatory, be adopted and used (2a, 3a, et al.).
3a. Living Wills are advance directives made by a competent patient expressing that patient's wishes regarding health care, particularly with regards to refusal and/or consent to treatment(s), so that such wishes might become effective at a future time when that patient might have become incapacitated.
3b. As it is essential that a living will, to be of use, be readily accessible, rapid communication is a further argument for retaining this readily understood phrase, rather than the generic "Advance Directive" - which could have diverse meanings unless qualified.
3c. The phrase "living will" is internationally understood. It forms part of the wording (whether in English or in literal translation) of many documents currently in use in Canada, Denmark, Germany, Israel, Japan, South Africa, Spain, and Switzerland. It is formally embodied in most American documents to distinguish them from Proxy Documents. It appears on the documents distributed in this country by the Terrence Higgins Trust, ARP over 50, the Natural Death Centre, and by Phyllis Goodheir.
3.1 Model Forms
3.1a. Consideration has been given by the Law Commission on whether a model form would be useful, and, if so, how it should be designed. Most attempts to design model forms to date have been fairly parochial - with or without expert legal counsel. Many European and non-European countries now have experience of living wills. In America, there has been extensive legal experience, and the numerous modifications to improve on original statutes have shown excellent responses to difficulties that have occurred once legislation was in place (but perhaps could not reasonably have been foreseen). American documents nevertheless remain largely legalistic in their appearance and have failed to incorporate many of the advances made in countries which do not have legislation.
3.1b. A consideration in the design of a living will model document might take into account that the health care profession is not likely to respond readily to legalistic documents that need a non-medical expertise to understand easily and at the same time are legally binding. This could create problems not only in a clinical setting when an urgent decision is required, but might also erode the doctor-patient relationship - an atmosphere of trust is easily disrupted by the threat of legal sanction. Furthermore, for a patient to make a competent decision in signing a living will, he or she should fully understand the document. Many elderly patients may have difficulty in prolonged concentration or in untangling the logics of a complex document. Poor eyesight may increase the strain of filling in such a document. Most patients will have little knowledge of medical or legal terminology. Documents in Netherlands, France and Japan have developed a simple and highly empathetic style and language. This both aids understanding and encourages cooperation from doctors. In Denmark, a very simple (and legally binding) document is supplemented by official guidelines to assist doctors in interpreting it. In this country, the Terrence Higgins Trust Living Will has a simple and empathetic style; although this was designed by a group not favouring legislation, certain stylistic merits could perhaps be incorporated in a legal model, for the reasons given above. Most importantly however, comparative study of extant living will designs to produce a model form should include both legally-binding and advisory-only documents.
3.1c. Cultural differences need to be allowed for by identifying those that might affect a document from another country, allowing for them when selecting potentially useful data or styles, and then overlaying British cultural idiosyncrasies. For example, in America, litigation is very common; in Japan, the opposite is the case. American precision might be usefully incorporated in Japanese documents if couched in suitable Japanese etiquette: non-antagonistic phraseology common in Japan might be used to advantage in American documents if precise definitions were appended in guideline procedures. In the U.K., the opposition of the BMA to legislation demonstrates a corporate resentment by doctors to being restrained by legislation. The head-on legislation used in America is not seen as threatening in that country since American doctors are used to dealing with lawsuits. In Britain, part of the challenge is to devise legislation that will not incite divisiveness; the other aspect is to ensure that safeguards, whether in direct legislation or in guidelines allowed for by legislation, answer the many practical worries of health carers but still firmly protect the patient's autonomy and authority in making personal advance health care decisions, whether in a living will or by means of a proxy.
3.1d. A model form, within a statute but as a guide, is preferable to an exact form laid down by legislation for many reasons. There are innumerable personalisations that might be desirable yet only applying to small groups of patients, referring to particular preferences for treatments for a certain type of illness (these might be anticipated, for instance, by a patient affected by AIDS or multiple sclerosis, where the general prognosis was already known); or to pregnancy waivers (for women of child-bearing age); or modifications might be needed in the light of new technology or available treatments. Legislation could perhaps address Guidelines so that these types of modifications were handled in a reasonable fashion.
3.1e. There is much understandable resistance from bodies such as the BMA to entering into formal consultation with societies such as VESS or VES - partly because these societies affirm the need for reform in areas that are still controversial with some doctors, and partly because the very word "euthanasia" in the title of the Society suggests measures that some doctors (ie, and BMA members) would not wish to participate in (the progress of the argument recalls the opposition to contraception and abortion before these achieved more general acceptance). However, in designing model forms, it would be biassed and unscientific in the extreme to ignore the vast amount of data and experience built up by right-to-die societies, whether in this country or abroad.
3.1f The suggestion that a model form could be dispensed with could lead to much confusion. Whilst many variations are possible, most G.P.s would find it a daunting task to draw up a living will from scratch at the request of a patient.
3.2 Simple vs Complex Documents
A recurring concern is that a simple document might be too vague to be helpful in a clinical situation; conversely, a complex and highly specific document may fail to accurately anticipate a specific situation. One of the most holistic and interdisciplinary of approaches is demonstrated in the evolution of the living will document used in the Netherlands. Over the years, this has progressed from a very simple statement to a document that covers various medical scenarios and areas where doubt might arise, and also allows the patient to add his or her own personalised paragraph (as a guide, several sample additions are suggested on a separate leaflet).
3.3 Register of Living Wills
3.3a. Even in the United States, where legislation has been in force for several years, a recurrent problem has been how to get enough people to make advance directives to make the system effective (so that health carers will have a clear guide as to the patient's wishes and not have to resort to surrogate decision making or judicial/clinical forums).
3.3b. In Denmark, registration of living wills has gone hand-in-hand with legislation. Three times the number of people anticipated registered living wills. It becomes a simple matter (a telephone call) for any doctor to check whether a patient has made a living will or not. If such registration are left to patients' groups or other organisation (permitted, yet not authorised by law), then lack of universal acceptance is liable to lead the system of registration into disuse.
3.4 Medical Cards The BMA have recommended that patients carry a card indicating that a living will has been made and where it can be found. Medical cards currently issued by VESS and VES also include a brief, general statement of wishes regarding non-treatment. A number of medical cards in use in other countries follow this model, whereas a number of cards issued by Canadian societies specifically tell the person reading the card to consult the living will, lodged at such-and-such a place (or with such-and-such a G.P.) in relation to health care decisions. The latter design will perhaps be favoured as more practical by the BMA. As one of the main suppliers of such cards, VESS is currently considering the format of its medical cards. Legislation could perhaps include the requirement that health care staff should make all reasonable efforts to obtain the living will if such a card was carried on the incapacitated patient.
3.5 Attention Stickers An idea which has received widespread support also relates to the ease with which a living will can be produced when required. VESS provides stickers for patients' notes or hospital charts to help to identify those patients that have living wills. VESS has a fund of experience that could be offered in addressing such practical questions, as well as the more fundamental ones.
4a. Like a living will, a health care proxy document is an advance directive made by the patient. A Health Care Proxy Document expresses advance directions, authorizing a competent patient to appoint an agent to make health care decisions for him or her, should the patient become incompetent.
4b. Although living wills and proxy authorizations have a number of similarities and are sometimes physically incorporated into one document, they also raise very differing questions and are perhaps best considered entirely separately. The present Bill before parliament makes passing provision for proxy appointment and powers and suggests them as part-and-parcel of the living will. An expansion, perhaps in a second Bill, concerning proxy appointment, powers and safeguards might be helpful. Primary emphasis on the living will directive as opposed to the proxy advance directive might be advantageously changed to give heavier emphasis to proxy power. If opposition to living will legislation becomes insurmountable for the time being, proxy legislation could stand alone. In nearly all American states, the two legal instruments are quite distinct and one may operate in the absence of the other. Attention could be given in guidelines as to whether the proxy would have a final decision-making authority or whether the terms of the living will would take precedence. This is a question that has arisen in trying to implement advance directives in the U.S.A. and some provision should be made early on (for instance, by means of optional clauses in either document) for resolving it without the need to amend the urgently needed initial legislation.
4c. Both the living will and the proxy document have distinct and separate advantages as legal instruments for ensuring the implementation of a patient's will. If legislators have not anticipated them, it is hardly reasonable to expect patients, or even doctors in consultation with patients, to anticipate them. Even without legislation, these questions need to be answered (as do many questions surrounding ways in which the patient's autonomous will may be implemented). The lack of legislation simply gives greater scope for medical paternalism in making decisions, or in deciding how decisions are to be made.
4d. The much sought-after "doctor-patient cooperation" is hardly an equal partnership when the patient is lying comatose, and with no-one with legal authority to meet the doctor an equal footing. The importance of doctor-patient dialogue cannot be underestimated (or that of proxy-patient or proxy-doctor dialogue); but dialogue ceases to exist if one party is incapacitated and no legal instrument exists to vigourously uphold the patient's right to refuse treatment. While doctor-patient dialogue needs to be strengthened and not undermined, this is a separate issue, not one which is an alternative to advance directive legislation. As a society progresses from a rural "family doctor" norm to a high-tech, almost faceless plurality of health carers there is an inevitable strain on such a dialogue. Studies have also demonstrated this progression, with a corresponding strain on the quality of individual health care, and also in societies in other parts of the world.
5a. The differences between hastening death by withdrawing treatment, withholding treatment, and by administering drugs may have very little between them ethically but the differences are strongly felt - the emotional trauma involved is very considerable. Lack of indication of the patient's wishes can introduce grave dilemmas for a doctor (this is reflected in the BMA's change of attitude towards living wills, which they had not seriously supported until 1992). Lack of ultimate legal power being invested in either the living will or the proxy may operate as a salve to the conscience of the doctor (at least he "considered" the patient's wishes) whilst protecting a paternalist status quo. It is hardly surprising that doctors, only newly shaking off their paternalist garb, find difficulty in accepting that the patient's wishes might take precedence over what the "doctor thinks best". In fairness, a large proportion of doctors would welcome a more equal and open relationship with the patient, but are concerned about the adequacy of safeguards in proposed legislation, both against elder-abuse and against impractical living wills or proxies. Most of these fears are unfounded, and are allayed by careful, step-by-step, logical analysis, such as is being prepared by the Law Commission. In America, laws have been tempered and refined in the light of experience: while there might still be room for improvement on that path, there is not the self-delusion involved in the false optimism that says, "Making laws to protect the wishes of the incapacitated patient might be difficult... maybe it's not necessary anyway". The VESS handles many cases in the course of its day-to-day work where the patient's wishes are ignored, or only respected because of strenuous insistence and protestation on the part of the patient or proxy. Pretending that it doesn't happen, or that it won't happen in a year or so if we (or the BMA) simply exhort doctors to respect patient autonomy, will not cure the problem.
5b. Advance directives also facilitate early decisions. In this respect, it should be noted that withholding treatment is far less traumatic for health-care staff, and far less demanding emotionally and intellectually, than withdrawing treatment that has been commenced, and perhaps continued for some period beyond initial stabilisation of the patient.
6a. Physician-Assisted Suicide is the provision by a doctor, consciously and legally, to a patient who has competently requested it, the means for that patient to end his or her own life. Suicide is a non-criminal act, yet the law currently makes it illegal to assist, or even supply the means, for a competent adult to engage in this non-criminal act.
6b. In cases of unbearable and unrelievable suffering or indignity, physician-assisted suicide leaves no doubt as to the fact that the patient made the final decision. Doctors who commit suicide, statistically, are able to use sure and painless drugs. Those methods are not available to other members of society, and a doctor who makes them available is liable to criminal charges. Methods used by people who are not able to obtain such drugs need careful planning and preparation to avoid added suffering, pain and indignity. Killing oneself is easy (though not that easy); killing oneself painlessly and in a dignified manner that will not cause unnecessary suffering to oneself or others is a difficult business. This basically comes down to an equality which at present is tolerated by law. Laws are less severe in other European countries although medical paternalism can still negate much of the law's rationale. The advantages of a physician prescribing drugs also include the prospect of dialogue, so that the patient can more fully examine and exhaust other options with the physician. The very prospect would mean a closer bond with the doctor - one less "taboo". One would know that if illness got so bad that life no longer held out any promise of meaningful existence, one could still turn to the doctor for support and respect, rather than the loneliness and pain of a bottle of paracetamol. Doctors I have spoken to are, by and large, remarkably uninformed about drugs that can reliably be taken orally to induce death. They know that many drugs might well cause death, that certain dosages are toxic, but they have received no training and have little or no knowledge of what amounts will reliably cause death. The "reliability" factor is the all-important one to the patient who wants to be 100% sure of the result. Prescribing drugs is far less traumatic a prospect for some doctors than giving a lethal injection (physician-aid-in-dying) and has the moral safeguard already mentioned of ensuring that the patient has the final control. It is seen by a number of states in America a more logical "next step" than seeking immediate legislation on physician aid-in-dying (which has many practical advantages over physician-assisted-suicide). Legislation could be permissive in nature, so that a doctor with a conscientious objection to discussing such a request in an unbiassed fashion and subsequently perhaps prescribing the drugs, could refer a patient to another doctor, as happens with abortion. The ability to "leave by the door marked EXIT", should the final need arise, gives MANY patients the courage to go on much longer. This has been demonstrated in many cases known to staff at VESS, and is also well known in Netherlands (where the same sense of reassurance is conveyed by an approval of an application for physician aid-in-dying, so that the patient knows that such aid will definitely be available if his or her request continues).
7a. Physician Aid-in-Dying is assistance by a qualified medical practitioner in implementing a patient's considered wish to end his or her own life, usually by means of lethal injection.
7b. Although the possibility of physician-assisted suicide is welcome news to many people who may be facing the prospect of an agonising, humiliating and long drawn-out disease whilst still having some physical capabilities, it is of little reassurance to someone who is suffering from a wasting disease that will eventually rob them of the physical ability to commit suicide. Also, death by oral ingestion of drugs is far less sure than by skilful injection. A doctor on hand can make necessary adjustments of dosage for the patient's weight, condition, age, and history, and also take the necessary action if the something goes wrong. This, in essence, is the Dutch argument, and although drugs are often made available for the patient to take orally by his or her own hand, if and when desired and after due consultation, a physician is generally present to offer the technical support that a patient has the right to expect.
7c. The borders between physician-assisted suicide and physician aid-in-dying and the cruelty involved in their illegality has been recently highlighted by the public Appeal to the High Court of Canada by Sue Rodriguez, a young woman who is slowly, consciously, and in a most hideous fashion, suffering the unrelievable deterioration towards death produced by ALS (Lou Gehrig's disease). Her remaining life expectancy is between three and fifteen months. She already has difficulty swallowing foods and experiences choking spells from time to time. She requires personal hygiene help. Very soon she will be completely unable to swallow, to speak, to walk and even turn over in bed without assistance. Soon she will be unable to breathe without a respirator. She will be totally dependent on others. The time is rapidly approaching when, to receive sustenance, she will require a gastrostomy. Armed with the knowledge that the end of her life is near, Sue Rodriguez wishes to exercise control over the timing and manner of her death. The problem facing her is that she does not wish to die while she has the capacity to enjoy life. In the result, by the time she is ready to die, her condition will be such that she will be physically unable to end her life without assistance. Accordingly, she seeks an order from the Court which will allow a qualified medical practitioner to set up technological means by which she might, by her own hand, at the time of her choosing, end her suffering, rather than prolong her death.
7d. The situation has been reecognised in many countries and was succinctly put by Justice Compton when he said, "The right to die is an integral part of our right to control our own destinies so long as the rights of others are not affected. That right should, in my opinion, include the ability to enlist assistance from others, including the medical profession, in making death as painless and quick as possible."
8a. Pre-Hospital Do-Not-Resuscitate (DNR) Orders are a development in America to fill a gap that is left by Advance Directive legislation. If a patient is discovered in a critical state by ambulance crews, there is a prime duty to apply cardio-pulmonary resuscitation and attempt to stabilise the patient before any considered decisions, such as might be encompassed by a living will, are taken. This might be totally against the "best interests" and/or wishes of the patient. In the U.K., guidelines have only recently been issued to correct the incredibly haphazard state of affairs that existed regarding DNR orders in hospitals. The problem of extending this to pre-hospital situations is primarily a practical one. It is being solved in America by the use of specific legislation or by official guidelines. Anything short of this is unlikely to produce the degree of uniform cooperation and understanding necessary in emergency crews.
8b. In Montana, U.S.A., a law has been passed authorizing the Department of Health and ENvironment Sciences to adopt a standard means of identification of individuals' wishes regarding life-sustaining procedures or "do-not-resuscitate" to be met when emergency personnel are called. The program, called Comfort One, will be issuing bracelets similar to those manufactured by Medic-Alert.
8c. New York has enacted a similar law as an extension of its do-not-resuscitate law and the bracelet will now allow individuals outside of hospitals and nursing homes to have their wishes met regarding cardio-pulmonary resuscitation.
8d. California and Connecticut have made similar provisions by means of regulations rather than rather than statutes. All these measures have several advantages in common: they recognize the right of individuals to make decisions regarding their medical care, and they also free paramedics from the burden of providing treatment to those who do not want it or making subjective decisions about whether it would be wanted by, or be in the best interests of, the patient.
9a. The importance attached to these important moral principles, and the balance in which they are held by the people of Britain, has been succinctly and sensitively summed up by Lord Justice Hoffman when he said that these principles are "deeply rooted in our ways of thinking and that the law cannot possibly ignore them". He continued, "In my view, the choice which the law makes must reassure people that the courts do have full respect for life, but that they do not pursue the principle to the point at which it has become almost empty of any real content and when it involves the sacrifice of other important values such as human dignity and freedom of choice." He concluded that English law, whilst paternalistic towards minors, respected the autonomy of adults, and quoted the decriminalization of suicide as a recognition that the principle of self-determination should in that case prevail over the sanctity of life. We should also remember that doctors generally are not trained as ethicists in any real sense of the word, even though many of them arrogate a high moral ground to their personal beliefs.
9b. It should be noted that legislation concerning advance directives in no way threatens the personal health care wishes of someone who believes in the sanctity of life over their own personal autonomy - they simply avoid making a living will or make an advance directive to indicate continued treatment in any circumstances (this need not place an unreasonable strain on health care resources, since an incapacitated patient has no authority to demand expensive or far-fetched treatments any more than a competent patient has; the advance directive may consent to treatment however.)
9c. In Japan, the moral dilemmas are similar, but for totally different reasons. The Japan Times noted, with that curious candour of an outside observer, that "The view that all lives must be prolonged regardless of quality stems from the Judaeo-Christian tradition," and "the notion of equality in Anglo-Australian law over-rides concerns with QOL (Quality of Life)".
10a. The doctor's duty of care, and the type of care, is mostly fairly outlined if done so at the outset of the doctor-patient relationship. Thus a doctor with a conscientious objection to a patient's possible wishes in a living will should make this clear at the outset to allow the patient the option of choosing a different doctor. Unless mutually agreed otherwise, the doctor's duty of care does not include extraordinary attempts to prolong life or actions contrary to the patient's express wishes. Some patients may not want to make decisions themselves, they may say, "Do whatever you think best, doctor." But patients who wish to assert their right to autonomy, recognized in common law, should not have this right subverted by the lack of legislation to ensure that the common law is implemented when the patient cannot vigourously protect his or her rights (by virtue of being incapacitated).
10b. Neither should a doctor lessen his efforts to reduce pain, discomfort or indignity simply because a patient has indicated that further life-prolonging treatment is not wanted. (This point is not particularly controversial, though inadequate pain care is all too common).
10c. The real controversy over the doctor as care giver arises over the question whether the doctor is the medical expert that a patient may consult and have the professional recommendations of the doctor implemented or not as the patient may choose (The patient is also free to get a second opinion or a different doctor). This open-market relationship is more common in America and leads to much greater openness in information disclosure between doctor and patient (if the incentive is financial, this should not detract from the nevertheless admirable result). It also engages the patient in the decision-making process on an equal, rather than prejudicial, footing,
10d. Similarly, just as if my doctor doesn't care to specialise in plastic surgery because he considers it unethical, I can go to another doctor if i feel I am going to nevertheless benefit from having a facial disfigurement corrected. I can even pay for the treatment if the NHS does not agree that it is necessary to my psychological well-being. A survey in the 1980's showed that 45% of doctors would at least seriously consider giving a fatal injection to one of their patients with an incurable illness that was intolerable to them. A small study recently performed by the Oxford branch of the BMA found 3 out of 10 doctors would definitely be willing to do so. Both of these studies assumed immunity from prosecution. They show that a large number of doctors recognize that situations can arise that ethically demand such options be available to the patient who persistently requests them. Three out of ten doctors is more than enough for the relatively small number of cases that will arise, but they would mean the difference between a good and peaceful death and a long-drawn out period of degradation and suffering.
10e. A member of VESS did a small and unofficial survey of elderly people who had known persons close to them in the period before those people died. She found that in nearly 70% of cases death was preceded by a period of painful illness. Only in 16% of cases had the patient died "quickly and peacefully". This contrasts sharply with the image we all like to believe when we announce in the paper that our loved one died quietly - probably the newspaper would be loathe to print an addition that said "after a prolonged period of the most agonizing torment and degradation". The gap between the ideal, whether the pain control that might be available or the images we find comforting to believe, and the reality, is sometimes frightening, and a disturbing reflection on our claims to be a humane and caring society.
14.1 The American Experience
General legislation on living wills was passed in 1991 and state-by-state legislation has been evolving since. Many proxy empowerment laws were already in place, but their scope and refinement has been greatly improved by the incentive of living wills. The current trend is towards Proxy Empowerment with the living will as advisory, though in some states, or where the patient has so specified, the written living will takes precedence over proxy interpretation or decisions. Proxy decisions, as they can be taken within a relatively short time span, are in many ways more amenable to medical situations (which often require a rapid decision) than written documents that might need special study or even judicial enquiry to ascertain their applicability to a given situation. The U.K. lags behind many countries in that it has no Enduring Power of Attorney law that can be applied in such circumstances. As still not enough people sign advance directives, another growing trend is towards Substituted Judgement Statutes. In the case of an incompetent patient who has not made an advance directive, consultation is made to either a judicial or a clinical forum, which may in turn make medical decisions on behalf of the incapacitated patient or appoint a surrogate to do so. Current legislative focus in America is aimed largely at developing laws on physician-assisted suicide (the more radical referendums on physician aid-in-dying having been narrowly overturned by heavily funded pro-life disinformation campaigns). The logical finesse, sharpened in America in the fire of practical experience, could usefully be imported.
14.2 The Australian Experience
There are five Australian States (Victoria, New South Wales, Queensland, South Australia and Western Australia) and two Territories (Australian Capital Territory and the Northern Territory) and there is no uniform law from State to State with regards to advance directives. However, if a doctor discontinues life-sustaining treatment, anywhere in Australia, at the patient's request, this does not constitute assisted suicide (for the purposes of law). Two States (Victoria and South Australia) and one Territory (the Northern Territory) have, in effect, legally recognized living wills. In Victoria, the relevant legal instrument is called an "Enduring Power of Attorney (Medical Treatment)", as set out in the Medical Treatment (Enduring Power of Attorney) Act 1988. It allows a competent person to appoint an "agent" who will be able to make treatment decisions for him/her when he/she is no longer able to do so. In South Australia, patients can sign an advance declaration as set out in the "Natural Death Act 1983" thereby refusing so-called "extraordinary treatments". Alternative legislation is being considered. in the Northern Territory, patients can sign an advance declaration as set out in the "Natural Death Act 1988" which will, like the South Australian instrument, allow the patient to refuse extraordinary treatment. The Australian legislation bypasses the controversy over living wills as such - it simply extends the patient's right to refuse treatment when he or she is physically unable to sign the refusal of treatment form (and it does so by empowering the proxy to do so, within certain safeguards).
14.3 The Belgian Experience
The Belgian living will, whilst not legally binding, has developed with useful practical design features. Printed on durable yellow or green A4 card, it is sectioned to fold into 4, and with options to allow one of the five European languages in which it is printed to be the one which faces outwards (it then has the size that might fit into a bus pass or driving license wallet). At a time of increased mobility and trade between European countries, this has the advantage that it could be readily understood no matter what country the patient was taken ill in. In designing a "model" living will (3.1) international cooperation could also simplify inevitable legislation in respective countries. The Belgian document, in spite of its compact format, includes options to add extra directions or score out ones in the pre-printed form. It includes an identification section with spaces for the patient's photo and personal details as well as boxes for annual updating or re-affirmation of the living will. In Britain, official documents too often only receive the attention of design and marketing consultants when they have become unintelligible to everyone except the authors. A lesson in humility from our European friends could introduce reasonable visual and design features from the start.
14.4 The Canadian Experience
A small number of Canadian provinces have either succeeded in passing legislation or have proposed it. Legislation on living wills is still in its infancy. Canadian attention is currently focussed on the case of Sue Rodriguez (see Para 7c, supra). The Appeal Courts have so far dismissed her case and it is being taken to the Supreme Court of Canada. Opinions of judges deciding her case so far has not been unanimous - interestingly one of those opposed to her plea cited the (outdated, by the BMA's own admission) British Medical Association Ethics Handbook as current British Medical opinion - a very tangible reminder that situations and statements made at home or abroad need to be examined on their merits, not on the "authority" of a particular organisation.
14.5 The Danish Experience
In Denmark, living wills have been legally recognized since 1st October 1992. A brochure is available in libraries, chemists and doctors' surgeries. The brochure folds down neatly into a one-third-A4 size. It is visually appealing using colour and half tone and simple to understand. A tear off section can be filled in and mailed to Copenhagen University Hospital with an administration fee for registration. Various options on the living will allow for a degree of customisation. A doctor presented with a patient in a serious condition must telephone the directory to see if the patient has completed a living will. The Danish legislation has been considered very successful and a possible model for other countries.
14.6 The Dutch Experience
The Dutch living will comes with an explanatory leaflet that includes sample paragraphs suggested for inclusion in the document if appropriate. A "risk acceptance" clause acknowledges that no revocation could be made if the patient became incompetent and that this risk is outweighed by the risk of continued living in circumstances which the patient would find unnacceptable. In place of the American bracelets for DNR (see Para 8) a "non-reanimation" medallion is available. Physician aid-in-dying is not subject to the abuses claimed by critics. The latest official publication in English show that cases where death is induced by the physician relate almost entirely to cases where the patient had a few days or less to live, a practice commonplace in most advanced countries including Britain. The most severe criticism of the Dutch decriminalisation of physician aid-in-dying is that the system still leaves the threat of prosecution hanging over the head of doctors for unbearably long time; whilst this leads to abuse in not accurately reporting the action, no ethical abuse in the physician aid in dying practice itself can be deduced.
14.7 The German Experience
Physician-assisted suicide is legal but generally not practiced due to prejudice and fear of comparisons with Nazi practices. The German advance directive authorises the German Society for Humane Dying to take legal action if necessary to ensure that the Directive is honoured. [Note, 16 Jan '96: This is probably oversimplifying. In practice, if there were a case of asisting directly in a suicide, charges would probably be made. Physician assisted suicide is not specifically allowed or disallowed by statute but case law dissuades the practice.]
14.8 The Japanese Experience
A tactfully worded living will, whilst not legally binding, is respected by doctors in almost all cases.
14.9 The Swiss Experience
Physician-assisted suicide is legal and practiced by a few doctors.
15.1 The Kings College/THT Living Will
A visually attractive and very user-friendly document with certain innovative features, yet also exceedingly long and rather bulky.
15.2 The Robertson Living Will
Designed by Dr George Robertson of Aberdeen Royal Infirmary and giving specific and easy-to-follow instructions to follow in the event of cerebral deterioration. About 3000 have been distributed. Dr Robertson has drawn on clinical experience for his international work in medical ethics.
15.3 The Goodheir Living Will
Inspired by the Robertson model, Phyllis Goodheir has campaigned vigourously and distributed over 8000 of this attractive, simple, and user-friendly document.
15.4 VES & VESS Living Wills
The VES living will was designed on the basis of extensive expert legal counsel and covers a range of situations that would trigger the instructions. Over 15,000 distributed and used as a model in several other countries that are still seeking legislation. The VESS version attempts to incorporate a proxy by using a form of Tutor Dative applicable under Scots Law (although the proxy, once approved by the Court of Session, could theoretically enforce the living will, the cost of getting it to the Court could be prohibitive to a few patients). [Note, 16 Jan 1996: VESS no longer distributes this form, but uses the form produced by the Living WIll and Values History Project, which employed later and more advanced research than the one mentioned.]
15.5 The Natural Death Centre Living Will
A simple version of the VES form, produced in response to demand.
16.1 The British Medical Association
The British Medical Association does not have an enduring policy on living wills, but has indicated it will not oppose legislation if its concerns are adequately covered (as the Law Commission is now doing). Whilst acting as something of a trade-union for doctors, the BMA is seen by laymen as much more than that, and every effort should be made to satisfy their concerns when enacting legislation.
16.2 The Law Commission
The Law Commission is favouring legislation on living wills and proxy empowerment and is testing the completeness of its proposals by in-depth consultation.
16.3 The Royal College of Nursing The Royal College of Nursing has issued a Guidance for Nurses sheet on Living Wills. It has been widely criticised as inaccurate and insubstantial. This is not surprising however as nurses often bear the brunt of inadequate legislation.
16.4 The Institute of Medical Ethics
The Institute of Medical Ethics Director of Research, Dr Kenneth Boyd, has said that it is difficult to see how a justifiable demand on many people's part can be met without some legal change. "Some immediate reform is needed to satisfy the legitimate demand of people in exceptional circumstances."
16.5 Kings College & the Terrence Higgins Trust
Kings College have worked on a number of occasions on living wills research and usually with people opposed to legislation. Their own recent research report however indicated that patients, as opposed to doctors, wanted living wills to be legally binding.
16.6 The Institute of Law & Ethics in Medicine
Professor Sheila McLean, Director of the Institute of Law and Ethics in Medicine (Glasgow) has presented cogent and multi-disciplinary arguments in favour of legislation.
16.7 The Hospices (General)
The valuable work in pain control research done by the hospices is often overlooked. Their opposition to legislation stems from a religious inception of the movement. Their frequent claim that all pain is controllable is patently untrue, even with the advances that they themselves have made, and has forced them on at least one occasion to withdraw such disinformational advertising (following an appeal to the Advertising Standards).
16.8 Milestone House Hospice (AIDS Patients)
A hospice in Edinburgh for AIDS patients that is not subject to the religious factors affecting official policy of other hospices uses detailed and personalised continual updating of patients' notes to indicate a patient's wishes.
16.9 The "Pro-Life" Movement
The vociferous minorities that are broadly called the "pro-life" lobby are supported, to the large extent, by the Roman Catholic Church and a few of its more extreme supporters. This is often disguised as if it were "concerned doctors" or "concerned lawyers", not religious extremists. The misuse of professional garb by certain lawyers, doctors and parliamentarians to espouse extremist religious views is seen by many as highly unethical, especially when it involves conscious disinformation. Opinion polls show that the no religion espousing the "pro-life" policy has the support of its congregation as a whole on such issues.
16.10 The Opinion Polls
All opinion polls have indicated broad support for legal reform. What excuse can there be for ignoring the persistent wishes of the large proportion of the population?
16.11 The Courts
The courts, especially in the recent cases of Tony Bland and, last year, Dr Cox, have focussed public and professional opinion, and the Courts themselves have called for legislative reform. Deciding law by means of expensive test cases does not make sound policy. Legislation is necessary so that everybody knows where they stand.
Medical Decisions at the End of Life - usually means decisions taken by physicians concerning actions performed with the purpose of hastening the end of the life of the patient or decisions for which the physician has taken into account the probability that the end of life of the patient will be hastened. It covers withdrawing or withholding a treatment (including tube-feeding) and the administering, supplying or prescribing of drugs. Refusal of a request for euthanasia or assisted suicide and the decision not to resuscitate may also be considered MDELs.
Factors used in attempt to determine a patient's quality of life.
Non-Treatment Decisions, that is, decisions to refrain from treatment that would have prolonged a patient's life. Some hospitals have developed specific policies with regards non-treatment in certain circumstances, based on severity of illness, prognosis, patient's wishes, wishes or opinions of relatives, and the attitude of the medical staff. Many hospitals, especially in the U.K., lag behind on the development of such guidelines. Dr George Robertson of Aberdeen has suggested "DLTs" - Decisions to Limit Treatment - as a more appropriate classification, since there is no suggestion that the patient is abandoned without adequate pain relief.
Dying well - a good and easy death. Death by an intentional act or omission in order that all suffering may be eliminated. Does not include irrational or emotional suicides or the forced killing of another person.
17.5 Voluntary Euthanasia
Euthanasia; the word voluntary emphasizes the express intent of the person wanting to die, and distinguishes it from mercy killing or any other form of killing. Voluntary euthanasia is performed by, or at the autonomous request of, an informed and competent patient. In the Netherlands this phrase is not used - the word "euthanasia" simply implying voluntary euthanasia, since if it is not voluntary it is not regarded in the Netherlands as euthanasia.
17.6 Non-Voluntary Euthanasia
Similar to Mercy Killing inasmuch it is performed on someone who is, at the time of its performance, incompetent and therefore incapable of assenting to it.
17.7 Involuntary Euthanasia
Generally indicates that the act is performed against their will on a competent patient who possesses the capacity to make a meaningful decision on the subject; in other words, where the patient is not consulted or where the patient's wish not to have euthanasia is ignored, whether or not it is on the assumption that it is in the person's best interests.
17.8 Active Euthanasia
Actively accelerating a good death, by use of drugs or other methods, whether by oneself, or with the aid of a another.
17.9 Direct Euthanasia
Actively accelerating a good death, by use of drugs or other methods, whether by oneself, or with the aid of a another.
17.10 Indirect Euthanasia/Passive Euthanasia
Euthanasia without active intervention, relying on non-treatment. Omission of life-sustaining treatment, whereby medications or procedures are withheld or withdrawn from a patient with the aim of hastening a patient's death. Note: this definition is not universal; persons opposed to the concept of euthanasia, but who endorse the withholding or withdrawing of life-sustaining treatment from a patient in some circumstances, vigourously oppose the use of the term passive euthanasia to describe the omission of life-sustaining treatment, contending that it is not euthanasia at all. The phrase passive euthanasia in Netherlands tends to imply involuntary euthanasia, which is a totally different concept. Indirect euthanasia may also be used to include the Principle of Double Effect.
17.11 Auto-Euthanasia (Self-Deliverance)
Ending one's life without any direct assistance; rational suicide.
A drug suitable for inducing euthanasia.
17.13 Double Effect
When drugs are administered to relieve pain but have the secondary effect of shortening life. Formalised as the Principle of Double Effect (See also Kuhse, Euthanasia, Supplement Appended.)
17.14 Mercy Killing
Ending another person's suffering by ending his or her life. Different from voluntary euthanasia (where the dying person has been able to clearly state his or her wishes).
Ending one's own life. Rational suicide may be justifiably chosen in cases where there is no reasonable prospect of any quality of life left by the patient's standards. Irrational suicide includes cases of emotional trauma and incomplete diagnosis/prognosis.
17.16 World Federation of Right-to-Die Societies
Formed in 1980. Member societies advocate passive euthanasia or active euthanasia or both.
2. See Glossary, infra.
3.These are a particular type of advance directive for very specific circumstances and for certain individuals. In the U.S.A., Montana and New York have recently passed laws; California and Connecticut have adopted similar programs, although with regulations or guidelines rather than statutes. For further information, see under "Non-Resuscitation", infra.
4.Schlyter, C (1992) Advance Directives and AIDS - An Empirical Study of the Interest in Living Wills and Proxy Decision Making in the Context of HIV/AIDS Care. See also Footnotes 1 & 2 in Docker, C, (1993) Submission to the Law Commission, appended infra.
5.BMA (May 1992) BMA Statement on Advance Directives.
6.Private collection of documents by the author.
7.A private distributor of living wills - estimated distribution in excess of 8000 documents. See 15.5, infra.
8.Consultation Paper 129.
9.Such as the VES and VESS forms, or those designed (especially early attempts) within the American legislature.
10.Since the 1991 Patient Self-Determination Act, individual states have developed their own statutes to implement the Act.
11.Some patients in California are supplementing their living wills with videotaped recordings so that they can express their wishes and feeling about non-treatment in their own words, free of the jargon commonplace in American documents.
12.Surveys in Japan indicate a very high percentage of documents are honoured.
13."Guidance on Physicians' Obligation in Relation to the content of Living Wills", and "Circular on physicians' obligations in Relation to Living WIlls". These both pertain to the Medical Law, Sec.6, sub.3, legislation on patients' rights of self-determination and rules concerning consequences of living wills.
14.Published by Terrence Higgins Trust in conjunction with Kings College, based on the study by Schlyter, ibid.
15.BMA (1992) ibid.
16.As in the Medical Treatment (Advance Directives) Bill currently before the House of Lords.
17.VESS recommends that a person wanting to modify the VESS living will does so in consultation with the Society, a doctor, a lawyer, or a combination of these.
18.Though not all - opinion polls show support for active euthanasia from a very considerable number of doctors, who say they would be willing to practice it in appropriate circumstances were it legal.
19.Most of these are members of the World Federation of Right to Die Societies (see Glossary, infra).
20.Such as VES in designing its current document, or VESS in its international study of living wills conducted by the author.
21.For instance, the collection of living will and proxy statutes published (and to some extent analysed) by the (American) Society for the Right to Die (now known as Choice in Dying), in Refusal of Treatment Legislation - a State by State compilation of Enacted and Model Statutes. Expert testimony could also be called from other countries in areas such as Physician Aid-in-Dying and Physician-Assisted-Suicide.
22.Whilst the BMA (1992, ibid.) encourages doctors to raise the subject of living wills with patients, their paper gives no guidance on how the living will should be composed or where a model form could be obtained.
23.This happened with a similar computerised registration system in Wales, set up to be able to check whether a patient had agreed to organ donation and providing a ready source of information for doctors in the immediate physical absence of a donor card. The potentially very valuable scheme fell into disuse since not enough people registered on the computer their willingness to donate organs.
24.In BMA (1992) ibid.
25.Such as that issued by the South Africa voluntary Euthanasia Society.
26.E.g. Dying WIth Dignity (DWD), Toronto, or the Saskatchewan Action Committee for Death With Dignity (SACDD).
27.Dr Natalie Jane MacDonald (BMA International Department) and Ann Sommerville (BMA Ethics Committee Secretary), personal conversations with the author, 15 April 1993, not yet published. (This is no way implies support from the BMA for legislative measures here proposed).
28.Medical Treatment Bill, ibid.
29.Paras 1(4) and 4(1), Medical Treatment Bill, ibid.
30.As is also the case in Victoria, Australia, where the Medical Treatment Act 1988 allows a patient to make an Enduring Power of Attorney (Medical Treatment) who can subsequently make a refusal-of-treatment on behalf of that patient if the patient has become incapacitated.
31.These are examined to some extent in the author's Submission to the Law Commission (appended herein as a Supplement).
32.Consider the almost total shift from single G.P. practice (where the individual doctor maybe knew the patient as a person from when they were born) to the group-practice that has occurred over the last few years and has to cope with increased patient mobility and change. Consider also the fact that many hospital patients do not even know the name of their consultant, much less have a "doctor-patient relationship".
33.Most bioethicists agree on this. See, for instance, Euthanasia, Helga Kuhse, appended as a Supplement, infra, which also examines the formal attempts to draw differences.
34.The "means" usually implies lethal drugs that can cause death painlessly, such as a large quantity of barbiturates, or else apparatus comprising carbon monoxide and inhaling mask, as provided by Dr Kevorkian of Michegan, U.S.A.
35.The phrase "Physician-Assisted" rather than "Doctor-Assisted" is used, as the former is already in widely accepted parlance in the U.S.A. Etymologists will note, in passing, that the word "physician" does not semantically imply the paternalism inherent in the word "doctor" - which combines the superiority of the "teacher" with the "docility" of the disciple...
36.Cf. Germany and Switzerland, infra.
37.In the Netherlands, the practice is an injection to render the patient comatose, followed by a second injection to stop the heart.
38.Bouvia v. Superior Court, 225 Cal.Rptr.297, 308 (Cal. Ct. App. 1986) (Compton, J., concurring).
39.(Amendment to) N.Y. Public Health Law Sec.2960-2978 (McKinney 1988).
40.These come under "No Code" orders.
41.While DNR orders are more commonly granted to people with less than six months to live, recent DNR orders for hospitals, proposed by the British Medical Association in conjunction with the Royal College of Nursing, recognized that very elderly people have an almost negligible chance, in some case, of returning to a life that could be considered normal (by anybody's standards) after "successful" cardiopulmonary resuscitation.
42.See also prof. robert Downie In: Royal Society of Edinburgh Conference (Report Appended as a Supplement).
43.In Airedale Trust v. Bland (1993) 2 W.L.R.
44.BMA (1992) ibid.
45.NOP Poll 1985, commissioned by the Voluntary Euthanasia Society.
46.Miller, D (Sep 1992) The Experience of Death. In: EXIT Newsletter.
47.In Airedale Trust v. Bland, ibid.
48.In Airedale Trust v. Bland, ibid.
49.1991 patient Self-Determination Act.
50.Usually known as Health Care Durable Power of Attorney.
51.See Cheryl K Smith J.D. (1993) What About Assisted Suicide? In: Issues in Law and Medicine, Vol.8 No.4, for a full and lucid examination of the issues surrounding this topic.
52.Summaries and data showing American legislative trends are collected in Klosterman, T (1992) Analysis of health Care Directives in the USA.
53.This explanation is taken almost verbatim from the address given by Dr Helga Kuhse, Director at Monash University and Head of Bioethics.
54.Published by the Association pour le Droit de Mourir dans la Dignite and Recht op Waardig Sterven.
55.Consider the much-caricatured paperwork of the Department of Health and Social Security over past years.
56.van der Maas, PJ, et al in collaboration with the Central Bureau of Statistics, The Hague, and the Dept of Public Health and Social Medicine (1992) Euthanasia and other Medical Decisions concerning the End of Life: An Investigation performed upon the Request of the Commission of Inquiry into the Medical Practice Concerning Euthanasia.
57.For further information, evidence (in English) may be sought from Dr Aycke Smook, Transvaal 13, 1865 AK Bergen Aan Zee, Netherlands.
58.For further information, evidence (in English) may be sought from Dr Meinrad Schar, Institute of Social Medicine, Sumatra str. 30 CH-8006 Zurich.
59.Boyd, K (Jan 1993) Medical Ethics and Euthanasia Reform. In: EXIT Newsletter.
61.See Supplement, Royal Society of Edinburgh Conference.
62.The facts have been well-documented in the case of the California Referndum in 1992, for instance.