CMQ May 2010


Philippa Taylor

An advance decision (AD), otherwise known as a 'living will' or advance directive, is a document that expresses the wishes of an individual for treatment refusal in anticipation of a potential loss of competence. Not only are they increasingly popular, they can also now be legally binding in the UK.
The ethical and practical dilemmas associated with ADs have generated much debate, however one question infrequently answered in the literature is whether they are either a desirable mechanism for facilitating treatment decisions in relation to incompetent patients, or instead a backdoor to euthanasia (Keown 1995:1).

In answering this question, this paper, whilst not entirely ignoring the broader ethical and legislative issues raised by ADs, of necessity primarily focuses on the practical implications of ADs, which entails reducing many of the issues to pragmatic and empirical considerations and, to certain extent, consequentialist arguments. As with Biggar, however, I justify this on the basis that these considerations arise off the back of the moral issues generated by end of life treatment decisions (2004:164). These    moral considerations centre on guarding the nature, intrinsic value and dignity of human beings, and on the protection of human life.

The question of the nature of the human being is at the heart of contemporary bioethics issues. "Every human being, however immature or impaired, possesses a fundamental worth and dignity which are not lost as long as he or she is alive. Contrary to the view of some, human worth and dignity do not depend on acquiring and retaining some particular level of understanding or capacity for choice or.for communication...basic human rights belong to us precisely because of our worth and dignity." (Linacre Centre 1998). Kant played a key role in distinguishing this concept of human dignity, based on man's absolute, intrinsic worth and existence as an end in itself, not a means to be used arbitrarily
(1889: 46, 47, 53).  For Christians, an understanding of human nature lies in the teaching of the imago Dei, man in the image of God (Genesis 1), which confers upon every human being a unique and special worth, or intrinsic dignity.

Kant has been highly influential in his imperative that humans must always be valued as ends in themselves and never as means, which he uses to argue that committing suicide is inconsistent with the idea of humanity as an end in itself (1889: 47). The sanctity of human life is recognised in the Convention for the Protection of Human Rights and Fundamental Freedoms Art 2 (1) "Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law." It has also been enshrined in our criminal law - intentionally to kill an innocent person constitutes the offence of murder. Murder can be committed by an act or by an omission in situations where there is a duty to act. For Christians, clear guidance against the killing innocent humans, who are made in God's Image, is found in Genesis 9:6.

The role of autonomy is a further consideration, which I explore below, as is the duty to care for those who share our humanity, particularly those suffering emotionally and physically. This is an important part of Christian thinking and teaching: we are to be `neighbourly' (e.g. Matt 19:19).

I will firstly review the societal and legislative context for the increasing popularity of ADs and euthanasia, then will briefly reflect on the attractions and problems with ADs, before assessing whether they are inextricably linked to euthanasia.

The Societal Context

For centuries Western medicine has been linked with the Hippocratic tradition, with its emphasis on healing and not harming, a tradition strengthened through Judeo-Christian belief in the sanctity and intrinsic value of human life (Cameron 1991: 155-6). While Kant stressed the importance of autonomy of the will as the basis of the dignity of human nature (1889:54), it is really in the last few decades that we have witnessed the emergence of individual rights directly challenging traditional emphasis on the paternalism of Hippocratic medicine: "Since it is my life, its value to me consists precisely in doing with it what I choose" (Harris 1985: 80). This shift in decision-making from doctor to patient has increased pressure to advance and legalise euthanasia, after rejecting it for two millennia -The same time period in which Judeo-Christian beliefs strongly shaped and influenced Europe's social practice, law, politics, culture and faith (Almond 2006:180). The rationale behind ADs is to extend patient decision-making to a time when a person is no longer autonomous: "The living will and power of attorney reflect the efforts of some modern legal systems to ensure more in-depth and effective implementation of the rights to
autonomy and self-determination.
" (Somerville 2001:250).

Autonomy within healthcare affirms a right to choose and exercise free will. Moreover, it not only empowers patients, it also reminds doctors not to misuse their position of authority (Barratt 2005). However, as Kant noted, our freedom as rational beings and our duty go together (Trigg 1999:102). Some exercises of autonomy can be destructive of human well-being, both in the life of the chooser and in the lives of others affected by his or her choices, which needs to be held in tension with unrestricted autonomy. With respect to end of life decisions, the landmark case of Pretty saw an outworking of this, reasserting the principle that there are legally accepted and moral limits to personal autonomy and self-determination. In Pretty v United Kingdom [2002] 2 FLR 45, Mrs. Pretty suffered from motor neurone disease and was rendered incapable of committing suicide without assistance. She therefore sought an assurance from the Director of Public Prosecutions that her husband would not be prosecuted for assisting her to commit suicide. This was refused by two courts in the UK and by the European Court of Human Rights. In this case, Pretty's right to autonomy was not permitted to override the protection afforded to a large class of vulnerable individuals by the Suicide Act 1961.

Alongside the emergent primacy of autonomy in medical decision-making are other significant societal changes that have increased demand for euthanasia and ADs. For example, the expansion of sophisticated, and often costly, medical technological capacity and medicines, which have extended lives and expectations of curative success but not necessarily quality of life. Also, there is a fear of prolonged pain and suffering, of indignity and of dependence on others and/or on machines (Wyatt 1998: 176-7). An AD offered by 'Dignity in Dying' states: "I wish it to be understood that I fear degeneration and indignity far more than I fear death. I ask my medical attendants and any person consulted by them to bear this statement in mind when considering what my intentions would be in any uncertain situation." (Living wills: BBC Home). Somerville believes that society is fearful of death, which has been institutionalized, depersonalised and dehumanised, so euthanasia has become a way to tame and civilise it (2001:109, 112). Somerville contends that there are a number of other drivers of euthanasia, which are not primarily individual circumstances but are broader societal and cultural changes. For example, we are more likely to die of chronic, not acute, diseases and are less likely to have a lifetime relationship with the 'family doctor'. There is a greater dominance of man-made law (as opposed to divinely ordained law), alongside a more biologically determinist view of life (2001:107-108). Macritchie believes that the shift in decision-making to the patient has been partly driven by a loss of trust in the medical profession, fuelled by negligence cases such Alder Hey, and abuse of power with, for example, Harold Shipman. Doctors themselves are increasingly fearful that they will be sued if their patients do not like the outcome of any intervention; they are losing trust in their patients (1999:2). Ramsey claims that economic considerations in health care influence the allocation of scarce resources, creating pressure to estimate comparative worthiness to live on perceived virtue or social worthiness to live (Ramsey 2002: 200).

The emphasis on self-determination and patient autonomy is stronger in the US than the UK (Meilaender 1996:79). Consequently, AD's have been in use for longer, and more widely, there. Indeed, since the 1990 Cruzan case every State has provision for ADs in some form, with information about them provided for all patients (Kessel 1998: 1263). In Cruzan v Director, Missouri Dept of Health, 497 US 261 (1990), Nancy Cruzan was a vegetative patient whose parents wished to withdraw tube-feeding so took the case to the US Supreme Court. The Supreme Court upheld the state's power to keep an unconscious patient on a feeding tube, over her family's objection, because the patient had not left clear instructions for ending life-sustaining treatment (Kamisar 1995: 251).

The Legislative Context

The Acts primarily covering legislation on ADs are the Adults with Incapacity (Scotland) Act 2000 and the Mental Capacity Act 2005 (MCA), covering England and Wales, which came into force in 2007. The Acts give patients who anticipate a potential loss of competence the right to refuse treatment through 'advance decisions'. These Acts codified and clarified common law rules, making ADs legally binding.
Prior to this, the legal status of ADs, even if formally drawn up and witnessed, was uncertain (Warnock 2008:52). Common law has long recognised that while a patient has mental capacity, he has autonomy and can refuse medical treatment, even if this results in death (Mason & Laurie 2006: 630). This was demonstrated in the 2002 case of Re B (adult: refusal of medical treatment), where the courts ruled that artificial ventilation should be discontinued in accordance with her wishes, even though this action would probably lead to her death. [2002] EWHC 429 (Fam). The liberty of a person to make decisions about their treatment was described by Lord Scarman in Sidaway v. Board of Governors of the Bethlem Royal Hospital [1985] 1 All ER 643, HL as a human right. In the Bland case Lord Keith noted that treatment choice may extend to the future such that, when a competent person has given clear instructions that "on entering into a condition such as the persistent vegetative state ... he is not to be given medical care, including artificial feeding, designed to keep him alive." (Airedale NHS Trust v Bland [1993] 2 WLR 316. p860). A number of other cases have also been significant, for example, Re B (Adult: Refusal of Medical Treatment) [2002] EWHC 429, [2002] 2 All ER 449, Re AK [2001] 1 FLR 134 and HE v a hospital NHS Trust [2003] 2 FLR 408 and including Re C which formed the basis for defining incapacity for both Acts. In Re C (adult refusal of treatment) [1994] 1 All ER 819, (1993) 15 BMLR 77, Lord Justice Thorpe divided the decision-making capacity into three stages: comprehending and retaining information, using (believing) it, and `weighing it in the balance to arrive at a choice'. 'Incapacity' under the Scottish Act results from mental disorder or inability to communicate because of physical disability. In England a person is regarded as being unable to make a decision if, at the time the decision needs to be made, he or she is unable to understand the information relevant to the decision; to retain the information relevant to the decision; to use or weigh the information; or to communicate the decision (by any means).

In anticipation of possible future mental incapacity, both Acts allow for the appointment of another person or people (their attorney) who can make certain decisions for them, including the giving or refusing of consent to medical treatment, should they become incapacitated. Under the MCA there
are two types of Lasting Power of Attorney (LPA): a property and affairs LPA for decisions about financial matters and a personal LPA who can only be used when the donor no longer has capacity to make decisions affecting their health. If a donor wants their attorney to make decisions about life-sustaining treatment they will need to specify this. Under the "Adults with Incapacity" (Scotland) Act there are also two specific Powers of Attorney. First, a 'continuing attorney' who has authority to manage financial and property matters, and secondly a 'welfare attorney' who has authority to manage matters relating to personal welfare. There are some subtle differences between the two in cases of disagreement and the role of the patient's past wishes. The Adults with Incapacity (Scotland) Act 2000 s I (4) states simply that 'account shall be taken' of the past and present wishes of the adult when any interventionist activity is being taken. (Mason & Laurie 2006: 457). The Act specifies that any action taken must be to the benefit of the adult, adding the rider that the benefit cannot reasonably be achieved without that intervention. It avoids the concept of best interests but appeals to the past feelings of the adult (s1(4)) (Mason & Laurie 2006: 454). In cases where there is disagreement, the Scottish Act gives give priority to professional opinion, the MCA tends to assume the donee is the voice of the patient who can refuse or consent to treatment (Mason + Laurie 2006: 456). In cases of disagreement in matters involving incapacitated adults the MCA provides for referral for adjudication to the Court of Protection. At the heart of the MCA lies the fundamental tenet that all decisions taken on behalf of someone who lacks capacity must be taken in his/her 'best interests' (MCA s.4). The MCA gives a list of factors to be taken into account when assessing best interests (s.4(1)-(7)). It is not an attempt to determine what the person would have wanted, although this must be taken into account, rather, it is an objective test of what would be in the person's actual best interests now, taking into consideration the person's past and present wishes and any change in circumstances. (Catholic Bishops' Conference 2007:29).

Both Acts restrict ADs to refusing treatment. Treatment preferences may be relevant to the broader 'best interests' assessment but are not legally binding and a clinician is not obliged to provide treatment if in his/her judgement it would be clinically inappropriate. This is an important distinction, discussed later.    If a refusal of treatment (which in law includes artificial nutrition and hydration) through an AD is valid and applicable, then there is a legal duty to respect that refusal. Whether an AD is legally binding depends upon several factors. An AD can be altered or withdrawn, verbally, at any time. It need not be followed if the individual is acting inconsistently with prior expressed wishes, or if it is reasonable to believe the patient did not envisage the circumstances, which could have affected the decision. (MCA s.25(2-4)). Mason & Laurie do note that the authority of advance decisions as to treatment for conditions other than mental disorder is currently uncertain in Scotland (2006: 457). However ADs cannot request that a life be ended, nor can they refuse basic care (warmth, shelter, hygiene). ADs that refuse life-sustaining treatment have additional safeguards (MCA s.25(6)), for example, they have to be written, signed, witnessed and have a specific statement saying that the AD is to apply even if their life is at risk. The MCA explicitly states that it does not affect the prohibition of euthanasia (MCA s.62).

A brief review of the arguments for and against the use of ADs will illustrate why they garner support both from those who are 'for' and against 'euthanasia. As will become clear, opposing euthanasia need not preclude supporting ADs, reflecting the difficulty in ascertaining a causal link. Whilst, as noted, there are some differences between the two Acts, for the purposes of the remainder of the paper I primarily refer to the MCA, on the assumption that the issues are equally relevant to Scotland.

Support for Advance Decisions

ADs have been described by Somerville as `instruments of love and trust' (2001:253). Their usefulness lies in encouraging advance care planning and patient involvement in decision-making, stimulating healthy dialogue between doctor and patient prior to incompetency, and assisting health care workers with appropriate treatment (Hornett 1995: 297). Even those opposed to ADs acknowledge that non-binding ADs can perform a useful role in informing doctors of a patient's dispositions and circumstances (Linacre Centre 1998). Pellegrino claims that ADs are empowering, ensuring that a patient's preferences and values are taken into account in clinical decision-making (1998: 97). They need not be regarded as a refusal of life but as an informed choice of treatment refusal. Furthermore, it can be comforting and helpful for families to have some steer from the patient. Indeed, in some cases, the wishes of relatives will not necessarily coincide with those of the patient and may be biased by financial and other considerations. Less recognised is that ADs may serve to engender respect for individuals who have thoughtfully planned ahead: "...Having an AD is equated with having a plan and when doctors and nurses see that you have a plan, it commands respect." (Dupree 2001).

Similarly, appointing a proxy decision-maker can initiate a process that generally takes place in palliative care i.e. doctor initiated discussions for the patient within the context of family. This assumes that the proxy decision maker does indeed act in their best interests and after detailed communication with the patient. Interestingly, a 1998 study found that terminally-ill patients and their chosen surrogate health care decision-makers were in agreement on end-of-life choices in only 66% of the cases (Sulmasy 1998). There is, again, more support in the US for appointing proxy decision-makers, compared to the UK with its longer history of medical paternalism and trust in doctors (see Meilaender 1996: 79, 82).

Problems with advance decisions

Reservations have been expressed about the meaning, reliability, durability, and portability of ADs. It is claimed that ADs cannot properly ascertain patients' wishes because they are commonly embodied in contradictory statements, requiring clarification and skilful interpretation to give doctors clear guidance (Wodarg 2008: 8). Practically, drawing up an aspirational document predicting all possible circumstances and treatments is difficult to achieve. Thus ambiguities in interpretation, plus dilemmas over their validity, may render ADs inappropriate or even obstructive to best medical care (see Philips 2009). For example, food and fluids could be prohibited in cases when it would be clinically appropriate (Sutton 2008: 57). The Code of Practice of the MCA accepts that ANH is medical treatment, and thus may be withdrawn. Others contend that fluid or food provided by artificial means is not medical treatment but is basic care (Catholic Bishops' Conference 2007: 26). Further practical concerns with the use of ADs are covered elsewhere, for example, by The Linacre Centre:

As noted, the rationale for ADs is framed in terms of retaining autonomy, however this may be illusory. Hornett questions whether it is possible to respect the autonomy of an incompetent individual when that individual has no autonomy. Yet if an incompetent individual does have autonomy, an incompetent request could override a previous competent refusal (Hornett 1995: 310). The Linacre Centre questions in what sense an advance refusal of treatment can be genuine exercise of autonomy if it is ill-informed (1998).

In a society that increasingly demands greater control over the end of life, under so-called `autonomy', has the legislative footing for ADs provided the bridge to advance euthanasia, or has it instead prevented euthanasia from advancing further by providing an answer to fear of death, loss of dignity and demands for autonomy?

Advance Decisions: Barrier or Bridge to Euthanasia?

To some, ADs represent the first step to legalisation of euthanasia: "[One] back door to euthanasia is through advance directives..." (Saunders 2000). Gormally has claimed that legally enforceable ADs have strategic importance in achieving legalisation of active euthanasia (Gormally 1998). Yet to others ADs are simply a useful expression for end of life treatment preferences: '`... to make sure no-one prolongs life unnecessarily and no-one takes it prematurely." (Macritiche 1999: 2).

Taking the former claim first: "If a patient may refuse *saving treatment, he or she ought to be allowed to request euthanasia ... because in both cases, death is the intended end result." (Steinbock 1994:34). Philips similarly charges that the distinction in law between refusing life sustaining treatment and requesting specific treatment is a 'wholly bogus distinction' (Philips 2008). Further, it is claimed that enforced medical neglect could cause ethical difficulties for relatives and medical attendants, creating a 'need' for active euthanasia (Treloar). Others contend that ADs may be used to justify euthanasia by omission on the premise that the patient's life is not considered worth living (e.g. Sutton 2008:57).

Keown claims that a 'slippery slope' to euthanasia can occur both logically and empirically: once a life is accepted as not worth living by a doctor, this judgment can logically be made of those not requesting euthanasia, including incompetent patients, or, if death is a benefit for certain competent patients, it should not be denied to incompetent patients with the same conditions. The empirical slippery slope argument runs that even with regulations, euthanasia will occur because safeguards cannot be effective. Keown cites as evidence the Netherlands shift from only voluntary to some non-voluntary cases of euthanasia (1995: 262). For example, the Remmelink study of 991 found that there were approximately 1000 cases of non voluntary euthanasia. Keown claims that this survey actually showed that in nearly 60% of cases where death was hastened by a doctor, there was no explicit request by the patient. (1995: 275) Further, there were failures in adequate reporting of deaths (1995: 281). Once it is permissible for a doctor to judge certain lives are not worth living, logic, psychology and social forces will press heavily upon any barrier against euthanasia (Biggar 2004: 123). There has already been a legal attempt to pressure doctors to sedate and dehydrate in accordance with a suicidally motivated AD with the Kelly Taylor case 2007. Despite later withdrawal of the case, the fact that it went to court in the first place confirms concerns that ADs may be used to shift the law.

ADs have also been vigorously supported by pro-euthanasia campaigners. For example, Dignity in Dying is campaigning for the Government to promote awareness of ADs and to have them recorded in a central national register (Dignity in Dying Charter). Baroness Warnock is vociferous in expressing hope that it will become common practice for those with dementia to write ADs requesting help to die (Vallely 2008). She hopes that ADs will one day permit patients to request specific treatment and ultimately assisted suicide and euthanasia, not simply refusal of treatment. Proponents also hope that the MCA and ADs will bring about change in the climate of opinion in favour of euthanasia (Warnock 2008: 54).

However, can ADs (and the MCA) be regarded as a barrier to euthanasia? Do the MCA's safeguards and legal restrictions protect patients and prevent ADs from being misused? The law does draw a clear distinction between refusal of treatment in certain limited circumstances and requests for euthanasia, or support for suicide. Importantly, this distinction was upheld by the Taylor case proving that, thus far, it is indeed workable in law.

As well as the law, individuals are also able to hold the distinction: " is not always the case that a patient refuses lifesaving treatment in order to die." (Steinbock 1994: 34). Treatment is most likely to be refused because it prolongs suffering. Steinbock notes that unless a broader interpretation of the right to bodily self-determination is taken by the courts - which it has not thus far - one cannot be said to have the right to die, much less the right to be killed (1994: 34). The MCA offers no support for suicide, specifically stating that nothing in the Act is to be taken to affect the operation of the Suicide Act (s.62). Importantly, a recent report from the Royal College of Physicians states that there is no evidence that the completion of ADs leads to the denial of appropriate healthcare or increases mortality (2009: 4).

In reality, ADs are not as meaningful as is generally perceived, and are unlikely to advance euthanasia in practice because they can be revoked so easily. Although ADs are, in principle, legally enforceable, they are rarely so in practice, primarily because the precise future circumstances of a patient cannot be envisaged in an AD (Paul: 2002).

In response to Keown's slippery slope arguments, Griffiths contends  that comparisons with countries that have not legalised euthanasia give no support to the Netherlands "sliding down a slippery slope to non-voluntary termination of life" and he believes that, despite inadequacies, the law has provided a reasonably effective regimen of control (cited in Biggar 2004: 134,136). In assessing both Keown's and Griffiths' claims, Biggar concludes that there has been an objectionable moral slide to euthanasia, a primary cause being a far too relaxed and elastic set of conditions that has expanded the range of cases involving non-voluntary euthanasia (2004: 145). In particular, the elasticity of the definition of 'unbearable suffering without prospect of improvement.' (Biggar 2004: 145). So whilst it would seem that there is no reason in principle why tighter laws cannot be formulated or enforced that restrict a slide to euthanasia, in practice the dominant principle of autonomy suggests that success in doing so would be highly challenging - although not impossible - in our cultural conditions, as it would involve maintaining restrictions on individual autonomy (Biggar 2004:151).

However, the slippery slope and 'backdoor' claims assume that ADs are, in effect, a `weaker' version of euthanasia. Yet if most requests for ADs are based less on refusals of life and more on a positive, informed choice to refuse certain treatments, and instigate advance care planning, then this offers an alternative perspective to evaluate ADs. Simply put, the demand to make an AD most often reflects the alarm that people feel. When they do not feel safe with medical staff, or are fearful that treatment would not be in their interests, they ask to draw up an AD. As lives are prolonged by technology and more people live alone, resources and staffing are pressured, so that some people may be kept alive too long (by technology) or inadequately cared for (lack of staffing and resources) creating more demand for ADs.

At the heart of the debate on AD's is interconnectedness, communication and trust (Macritchie 1999: 2). Clearly dialogue cannot take place with an incompetent patient but the AD can clarify patient's wishes. By viewing the use of ADs as better grounded in the idea of informed consent and dialogue than in autonomy (Pellegrino 1998:166), as advancing patient-orientated medicine and as a method of fostering trust and communication between patients, doctors and family, then I believe ADs can compensate for the fears and shortcomings of modern medicine, and render invalid arguments to advance euthanasia. The welfare attorney can provide a similar role in promoting communication and cooperation with health care professionals on behalf of the patient.


In this paper I have shown how the shift in decision-making to patients, the emergence of autonomy and a fear of death and dying without control have contributed to increasing pressure to advance euthanasia. The legal footing provided for ADs has been charged by some as providing a bridge to euthanasia. However, I have shown that ADs, along with welfare attorneys, are a useful component of advanced care planning, allowing patients and professionals to work together more harmoniously for the patients greater good (Atkinson 2003: 473) potentially alleviating demand for euthanasia.

It is important to define and use terminology and concepts carefully. I have suggested that ADs are not an instrument of euthanasia, thus should be addressed separately from other end of life decisions to avoid confusion and linking. If we do not handle AD's separately to euthanasia, as a measure that is different in kind, we not only risk serious confusion but may see euthanasia legalised. As made clear above, there is a legitimate demand for refusal of treatment in common law, which now has legal validity, consequently denying this will increase pressure to allow autonomous decision-making for treatment preferences, and euthanasia. People should not be forced to decide if they are for or against ADs, on the basis of whether they are for or against euthanasia (Somerville 2001: 103).

Of course it would be preferable if ADs were unnecessary. A good relationship and a flexible approach in which clear and continuous communication takes place as a matter of course' between a trained doctor and patient and family - as is generally the case with palliative care in hospices - is consistently better than an AD, no matter how well drafted it may be: "...if patients had less fear about their medical futures, ADs might become redundant. The best way to alleviate such concerns remains through good communication between doctors and patients and through promoting an environment of trust." (Kessel 1998: 1265).

My conclusions are based on the assumption that ADs are not legally extended in either use or scope in the future. Those who have concerns about ADs could perhaps more effectively concentrate not on removing them but on ensuring that current safeguards remain, and that our moral duty to care holistically for those who share our humanity, and human dignity, is upheld, so that none need 'fear degeneration and indignity more than death' (Living wills: BBC Home). Reframing the
debate in terms of advance care planning should serve to refocus attention away from a document to a broader, ongoing process of communication. Making written treatment decisions in advance to preserve individual autonomy may or may not figure among these goals (Jordens 2005: 565).



Other Sources

Philippa Taylor has worked on bioethics and family issues for 16 or so years, on a part time independent consultancy basis, primarily for the organisations "CARE" and "Care for the Family".