The Role of Advance Directives in Dementia Care

Introduction:

Advanced directives for health care are directives of a person with regard to future medical treatment or and of life care, expressing the wish of the person to accept or deny certain treatment or care pathways. Such directives can be made in the Living Will of the concerned individual or by an enduring power of attorney (EPA), both of which are legally binding documents that are effective when a person loses their ability or capacity to make such decisions. Advance directives for healthcare is a way to continue respecting the autonomy of a person who has lost competence to make healthcare decisions. Advance directives are made by a person at a time when he is competent to make such decisions and projecting into the future where he may fall incompetent. Advance directives are underpinned by the moral obligation for the principle of respect for autonomy for people who lose their capacity to make decisions. The directives continue to provide health care professionals with the guidance on how such person would have wished their treatment to continue had they been competent.
When a person with dementia is no longer capable of making decisions, the documented choices made in the advance directives override the current position of incapacity for decision making. This allows more humane treatment, economical and ethical use of medical resources, and alleviation of the burden of substitute decision-makers. In advance directives, the patient can appoint a substitute decision-maker to make choices on his behalf once he becomes incompetent. The substitute decision-maker is tasked with making decisions that are in the incompetent person’s best interests. The substitute decision-maker may also be required to make decisions for situations which have not been anticipated by the advance directive.
This essay focusses on the application of advance directives for dementia patients and the particular ethical and legal complications that are involved in such situations. At the outset, the principal concepts and terms that are involved in this essay are clarified.
Competency is a legal concept with four components, all of which must be satisfied in order for a person to be deemed competent to make decisions. Competence is decision specific. For a person to be competent to make a decision in a particular situation, he needs to

Understand the information on his condition including treatment options; Understand that he has the condition and believe that it has implications on his life with each treatment option he elects; Be able to manipulate the information; and

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Whilst competence is a legal concept, clinicians are primarily the ones called upon to assess competence. In this essay, the term competence will be used interchangeably with capacity. Dementia is the umbrella term for a progressive neurodegenerative disease which arises from a variety of pathological mechanisms. Dementia is a progressive illness and patients with early dementia may still be competent at making certain decisions.
There are a number of problems associated with advance directives, which are not unique to patients with dementia, but are accentuated in dementia. These are noted below.

Advance directives are rarely specific enough for clinicians to be certain about the intention of the author or for certainty in the appropriateness of applying the document to a particular situation. For instance, refusal of mechanical ventilation may be stated to be unacceptable. However, if the person underwent surgery and required mechanical ventilation temporarily, it is unclear whether the intervention can be applied.
Legality of the advance directives is variable across states and territories. There is no central archive system for clinicians to find these documents when a situation arises where these have to be applied. Once made, advance directive is seldom reviewed. If the person had a change of mind or change in circumstance between authorising the document and falling incompetent, the document is not able to reflect the change.

As a result, patients as well as clinicians are ambivalent about such documents. It is estimated that Australian with an advance care directive is between 1 to 12.5%. In spite of the above issues, an advance directive helps patients to consider their goals, hopes, and fears for a future when they may require medical assistance but lack the capacity for decision making on treatment options. As such, the making of this document encourages reflection and conversation on what such individuals may want for themselves according to their values, concerns, relationships, and responsibilities. Advance directive provides evidence of the outcome of the discussion although the process of discussion is equally, if not more important. Hence authorities continue to press for wider use of the document.
This essay seeks to identify the main ethical and legal difficulties associated with advance directives and suggests a way in which the document can be made more useful. The essay will outline the current Australian legal treatment of advance directives. The legal status of advance directives is unclear in Australia. Professional bodies do not have consistent standards and guidelines for clinicians to adhere to. There is no standardised test of competence, which is essential as the threshold of competence needs to be proportionate with the significance of the decision. There is inconsistency in legal treatment of competence. A person’s mental state is not relevant to the decision-making process and the person’s wishes are followed despite the absence of aspects of

competence. The essay will also examine the influence that culture has on the law and advance directives by giving an overview of the position of the law in France and Australia on the matter. It will then examine the argument for and against the use of advance directives in dementia. The primary advocate for the use of advance directives even in dementia is Ronald Dworkin. The emphasis lies in the need to respect the pre-morbid person’s wishes as the incompetent person loses the capacity to understand the situation. The essay will focus on the rationale against the use of advance directives focusing on dementia. This is primarily based on concerns that the now incompetent person may no longer wish to refuse or accept the interventions noted in the document. The essay seeks to propose a viable way of encompassing the interests of an incompetent person into the advance directive in order to preserve the autonomy of the person.

Existing legal approach

With the rise of individualism, there is an increasing call for “right to die”, reflected in Australia legislations, such as, Natural Death Act 1983 South Australia and Northern Territories 1988, which allow a person to die with dignity by providing them the ability to refuse life sustaining measures. Australia ratified the Convention on the Rights of Persons with Disabilities in 2008, Article 12 of which states ‘that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’ and that authorities need to ‘take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’. Australian Law Reform Commission also stated that
the emphasis [is] on the autonomy and independence of persons with disability who may require support in making decisions – their will and preferences must drive decisions that they make, and that others make on their behalf. The law indicates that not following advance directive constitutes assault with criminal and civil consequences. All states except NSW have a statutory form for healthcare wishes to be documented. Advance directive in NSW is under common law; therefore, it relies on precedents for determinations. Supreme Court of NSW has said that these documents must be respected if ‘made by a capable adult, and it is clear and unambiguous, and extends
to the situation at hand’. In South Australia, the legal status of advance directives is under the statutory law. Hence, Living Wills are legally binding under the Advance Care Directives Act 2013 [ACD Act 2013]. Section 10(d) of the Act demands that people be allowed to make their own decisions about healthcare, residential and accommodation arrangements and personal affairs to the extent that they are able and be supported in this respect. Section 7(2) of the ACD Act 2013 specifically provides that ‘inability to retain information for long’, or ‘fluctuation in decision-making capacity’ or ‘bad outcome for the person’, or ‘inability to understand trivial technical matter’, do not constitute lack of capacity. Therefore,

capacity in this sense is a matter that relates to the capacity to make the specific decision and not other matters. Substitute decision-makers can weigh the benefits and risks of treatment and form a decision on the patient’s behalf. S14C of the ACD Act 2013 directs that substitute decision-maker in refusing or consent for medical treatment ‘must as far as is reasonably practicable, reflect the decision that the patient would have made in the circumstance’. ACD Act 2013, Section 19 provides health professionals the right not to provide treatment that has no medical benefit. It also makes it clear that relief can be provided for pain and distress even if it may shorten a person’s life. To better comply with the United Nation Charter for Rights of Person with Disability [UNCRPD], the Victorian government introduced the Guardianship and Administration Bill 2018 into the lower house of parliament. The Bill is intended provide a contemporary legislative framework for the appointment of guardians and administrators by the Victorian Civil and Administrative
A key feature of the Guardianship and Administration Bill 2018 is the recognition that a person has decision-making capacity if they can make decisions with support. To facilitate this, the Tribunal introduced supportive guardians and supportive administrators as opposed to substitute decision-makers. There are introductions of new offenses (including potential imprisonment) for guardians or administrators who dishonestly use their appointment to cause loss to or obtain financial gain from. All of these are measures to increase patient participation in the decision-making process. In terms of medical authorities, in principle, the Australian Medical Association supports advance care directives. The Medical Board of Australia’s Good Medical Practice has a Code of Conduct for Doctors in Australia 2014, which require doctors to known and apply the limits of medicine in prolonging life, and to facilitate advance care planning. With respect to prolonging life, doctors are required to know when not to initiate and when to cease attempts at prolonging life, while also ensuring appropriate relief from distress for the patients. At the same time, patients have the right to refuse medical treatment or to request the withdrawal of treatment already started. Therefore, Good Medical Practice requires the clinician to consider recognised medical practices of the profession in Australia, as well as ethical standards. However, there are no formal national guidelines of recognised medical and ethical standards, practices and procedures for when life-sustaining measures can be withheld or withdrawn.
Furthermore, there is ambiguity in the Association’s Code of Ethics., specifically, 2.1.4, which requires doctors to respect patient’s rights to accept or reject advice and make own decisions, but provides no suggestion on how to remedy the conflict between the law’s requirements to follow Advance directive when it’s inconsistent with the Best Interest test. An example of such suggestion is found in the General Medical Council UK, ss 47 and 48, which involves asking legal advice from an

independent advocate. Similarly, UK’s Mental Capacity Act 2005 [MCA 2005] Code of Practice requires that the final decision of the doctor, after considering the wishes and feelings, beliefs and values of the patient, will be based entirely on what is in the person’s best interests. Lady Hale in Aintree University Hospital NHS Foundation Trust v David James and Ors, stated this more comprehensively [I]n considering the best interests of this particular patient at this particular time, decision makers must look at his welfare in the widest sense, not just medical but social and psychological…they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would likely to be. Indeed, the Act provides that a person is not to be treated as unable to decide simply because he makes an unwise decision. However, both common law and legislation require the consideration of best interests of the patient by the substitute decision maker.
In the following sections of the essay, the Australian state of the law for Advance Care Directives will be compared with that in the United Kingdom and France. The 1985 judgment of Sidaway v Board of Governors of the Bethlem Royal Hospital, is the first English decision on the right of the patient to reject medical advice. In Re C (refusal of treatment) [Re C], the patient’s right to refuse life saving amputation based on beliefs was upheld as he was able to comprehend the information and believed it applied to him, and could consider the risks and benefits of the medical intervention. Unlike the ACD Act 2013, the Mental Capacity Act 2005 provides the basis for substituted decision-makers to make decisions in the patient’s “best interests”. It recognises that best interests do not necessarily equate to the patient’s wishes. This is in contrast with French law where advance directives were only mentioned for the first time in 2005.
In France, the Advance Care Directive sits at a significantly lower level in the decision-making hierarchy. The document needs to be no more than three years old. The clinician can refuse to comply with the directive. The law compels the clinician to do everything in his power to persuade the patient to adhere to recommendations. The doctor has explicit right to withhold or withdraw treatment if the doctor deems that life is only extended artificially. The decision must be discussed with colleagues and to consult a representative of the concerned person. It was with the case of Vincent Humbert that new law was brought in to clarify the framework for legal and illegal medical practice at the end of life. Mr Humbert became tetraplegic after a car accident. When his request for

euthanasia was refused, his mother gave him high dose barbiturates until the responsible doctor administered lethal potassium chloride to end both parties’ suffering. The French Information Report 2004, makes clear that preservation of life takes precedence over freedom of choice if there is any doubt of the patient’s choice. There is also concern that doctors would become merely executors of patients’ wishes. This is in contrast with the UK where there were more fears of patients being burdened with a barrage of information, and being asked to decide on treatment decisions without guidance.
In France, there is a presumption that doctors have superior knowledge therefore under the principle of beneficence, the doctor’s views are best for the patient. This is further reflected in the absence of formal requirement for physicians to consult representatives of the patient. Even when the law on advance directives was finally adopted, it was for the primary reason to “ease doctors’ feelings of guilt” when discontinuing a treatment.
It is interesting to reflect on the difference in cultures that contributes to the difference in the evaluation of individual and society interests. In England, since the Magna Carta of 1215, there has been a tradition of expecting a person to have the freedom to do what he wants if it does no harm to others, also reflected in the philosophical writings of JS Mill and John Locke. This is in contrast with the collectivist view of Rousseau’s social contract, under which every individual’s beliefs and preferences are subject to the scrutiny of the community interests. The Roman Catholic tradition of absolute authority is reflected in the duty of the patient to follow doctor’s instructions. The difference between the English and French legal systems highlights the role culture has on the end of life care and advance directives. Australia is also a multicultural society. The meaning of such a document to Australians of different ethnicities should be considered. For instance, Asian cultures expect delegation of decision-making to the head of the family or the male in the household. There are also different views of dementia that may come in play. For older Asian cultures, the sanctity of life may make advance directives still an unacceptable concept. Open-mindedness about each patient as unique, quite apart from their diagnosis, but also their background and upbringing, needs to be upheld at all times particularly in regard to decisions as significant as life and death situations in advance directives.
The following section outlines some of the cases where advance directives have been used in Australia and reflects the lack of uniformity in the treatment of advance directives.In Supreme Court of NSW in Hunter and New England Area Health Service v A [ Hunter v A], McDougall J considered the document valid even though not signed as the patient had completed unsigned papers stating he would not want to have dialysis. This contrasts with Brightwater v Rossiter where the expressed wish of the bed-ridden patient to not be fed or hydrated at end his life was criticised because the patient

was not given adequate information about the implications of treatment refusal as he had not been explained how the refusal would affect his physiology. In Australian Capital Territory v JT, the patient was psychotic and as a result, wanted to starve himself to death under the belief that fasting would bring him closer to God. The judge ordered the medical team to feed JT against his wishes as he was not competent at the time of expressing his wish. It appears that patients are theoretically allowed to act irrationally only within certain types of irrationalities. In Hunter v A, refusal of treatment was rejected as it was based on delusions; similarly Jack J noted in Re E I acknowledge that a person with severe anorexia may be in a Catch 22 situation regarding capacity namely that by deciding not to eat, she proves that she lacks capacity to decide at all.
The judge looked at her values prior to the eating disorder when she was halfway through a medical degree and surmised that the patient’s perspective of her own best interest would have been different from her expressed current wishes even though she signed previous advance directives declining life-sustaining treatment. Once a person is deemed incapacitated, the decision will be made by a substitute decision-maker according to the best interest of the incapacitated person as explained below
The purpose of the best interest test is to consider matters from the patient’s point of view. That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an incapable patient’s wishes are …But in so far as it is possible to ascertain the patient’s wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being. Having seen the current state of the treatment of the law for advance directives, the essay turns to look at the principles for and against the document. Arguments supporting advance care directives
One of the main supporters for advance directives including for dementia patients is Ronald Dworkin, who argued that advance directives must be respected because when an incompetent person changes his or her preferences, these are not genuine changes in preference as he or she can no longer fully appreciate his lifelong values. This idea of individual autonomy emanated from John Stuart Mill and is explained by Dworkin as follows recognising an individual right of autonomy makes self-creation possible. It allows each of us to be responsible for shaping our lives according to our own coherent or incoherent – but, in any case, distinctive – personality.

Part of the responsibility of making choices in life is the need to govern the course of one’s life, including one’s future incompetence in accordance with a set of ‘recognised and coherent scheme of value’. Hence Dworkin advocates for adherence to precedent autonomy. Definition of “precedent autonomy” is a competent person’s right to autonomy requires that his past decisions, about how he is to be treated if he becomes demented, be respected even if they do not represent, and even if they contradict, the desires he has when we respect them, provided he did not change his mind while he was still in charge of his own life. By adherence to precedent autonomy, we respect the abilities and capacities of the person who created such values and choices.
Dignitas founder Ludwig Minelli said it doesn’t matter why you want to die, the ability to make that decision is what matters. In respecting a person’s autonomous choices in healthcare, it is respecting the person’s right to beneficence treatment. Dworkin further expanded on the concept of a person as having critical interests and experiential interests. Respect for life means prolonging it if possible and preventing it from degenerating into permanent vegetation. Beneficence and respect for autonomy dictate that we respect the person’s judgements about what they value in life. Dworkin believes that experiential interests do not make our lives better or worse – e.g. a life is no better or worse with hayfever. Critical interest is one that makes a life genuinely better and its frustration makes a life worse – what one should want.
Critical interest is not confined to the conscious experience but can be experienced even after the person is no longer there. A person in a permanent vegetative state or even in death has critical interests in what happens to their body and estate. Value cannot be instilled, it must be generated from within. This is not possible from a demented person. For the demented
..are ignorant of self-not as an amnesiac is, not simply because they cannot identify their pasts – but more fundamentally, because they have no sense of a whole life, a past joined to a future, that could be the object of any evaluation or concern as a whole. They, therefore, have no contemporary opinion about their own critical interests. The severely demented still have a strong interest to be free of suffering but it does not mean he actively possesses reasons to continue living. The demented life must be considered as a whole, not only after the onset of dementia. Thus, the person’s wishes after dementia are relatively short-lived and should not override the long-term values held by the person for most of his life. Thus, Dworkin defines critical interests as the person’s best interests. Dworkin argues that advance directive needs

to be respected because it represents a person’s critical interests. Dworkin conceives no conflict between pre-morbid critical interests and current apparent lack of interests. The person has no current autonomy to protect only the right to beneficence, that is the right to have their advance directive adhered to. Furthermore, feelings and attribution of meaning are subjective. No one can say that a person is uncomfortable unless the person says so. Self-constitution then also supports precedent autonomy as there is no other relationship that is as close to the demented person as the author of the directive. So, if the author say that is what his future self will want or value then it is so.
Dworkin does fail to account for times when even competent persons make unwise or incoherent decisions. To value something is to think of it as good. A drug addict wants drugs but may not necessarily consider illicit drug use a value. Obesity is another example where a person wants food but does not value over-eating. Dworkin’s definition of critical values does not accommodate for changes in values in response to experience. Jaworska made the distinction between desires and values. Desires are the first order basic wants whereas values involve reflection. One might not value what one desires. To value something, it is not just to desire it but to value it as good. For Dworkin, critical interests need the ability to reflect on one’s life as a whole. Similar to Dworkin’s critical interests, “second order values” are generated from ‘convictions about what is good to have, but do not require the ability to grasp or review one’s whole life’. There is likely a continuum of capability in generating new interests and value that is not lost even when the traditional view of capacity is lost.
This view may lengthen the time where a person’s present expressed wishes warrant adherence to. It does not provide a definitive course of action for the scenario where a person fails the competency test but still has the capacity to generate second-order wishes. Consider a scenario where a person has an advance directive that requested refraining from artificial feeding. The person suffers a debilitating stroke affecting his ability to swallow and speak. The stroke is a transformative experience which radically change the person’s beliefs, desires and overall cognitive life. This transformative experience makes him realise how precious his relationships are. He wishes to continue living. There is no means to deem him competent to make the change even though he has, subjectively, generated new values and interests beyond that of experiential comforts.
Furthermore, if no one can instil value into the life of a person, no one can definitively say that a person no longer can self-reflect or that a person’s life no longer holds higher order value. Then according to self-constitution concept, if a severely demented person expresses a wish to live or receive treatment, it is difficult to refute this to not be an expression of a wish to continue to live.

The ability to make decisions, known as choice autonomy may persist, even if one doesn’t have actual autonomy to enact such decisions. The following section focuses on the principal arguments for respecting the current autonomy of a person with dementia even after capacity is lost by focusing on the research data on the subjective experience of self in dementia.

Against advance directives

This section begins with a case that illustrates the dilemma in recognising advance directives. In 1999, Margot Bentley was diagnosed with Alzheimer’s dementia. 1991 had she made an advance directive providing ‘if no reasonable expectation of recovery from extreme physical or mental disability’, she wants to be ‘allowed to die and not have heroic measures to save her life’. There was a second advance directive after 1991 which stated she accepts basic cares. In 2005, she was admitted in residential care. By 2013, she no longer recognised family. She could not use language to communicate. She had limited physical movement and needed to be spoon fed. Family requested the facility to stop feeding. Margot’s providers disagreed with the family. In February 2014, Supreme Court of BC found that Margot had capacity to consent to hand feeding or refuse it. Even though it is reflexive, there is variability in her acceptance, she had the ability to stop. She had the ability to give “current consent” to feeding. The state only permitted refusal of healthcare necessary to preserve life when there was substantial agreement. This was not the case for Margot. She passed away in 2016.
David Parfit’s theory of personal identity states that there needs to be psychological continuity between A and B for them to be considered the same person. Where there is deep psychological change between the prior self and current self, they are two different persons. Between a competent person in early dementia and the person at severe dementia stage, there is a significant difference in values and beliefs to the extent they can be considered two different persons. Applying advance directives made by the former self is like applying advance directive of one person to a different person. Advance directive honours autonomy only if it is applied to a person who freely accepts what’s recommended. But the directive is being applied to someone who cannot make such an autonomous choice. So advance directive cannot be legitimate.
Whilst one can have some idea of the beliefs and desires of the future self, the future carries possibilities such as changes in technology, relationships, attitudes that may change in unpredictable ways. Dementia is such an experience that involves an unpredictable alteration of attitudes just like childbirth and death. The pre-morbid author of the advance directive is ignorant of the dementia experience. This again renders advance directive not legitimate.

Joel Feinberg disputes Dworkin’s opinion that there is no conflict of interests applying pre-morbid directive upon the affected person because the patient cannot hold critical interests. In The Moral Limits of the Criminal Law, Feinberg suggests that a person’s interests may still be harmed even when she it cannot be experienced. Posthumous harms such as reputation can be undermined by rumours. Therefore, a person’s interests may still be harmed by his treatment after he loses capacity or awareness of such harms occurring.
In this way, advance directive’s moral authority cannot dismiss the health provider’s responsibility to protect the “humanity”, that is, basic rights and interests of the terminally ill, incompetent or the unconscious. Regardless of whether current person is the same as the pre-morbid person, it should not compromise the obligations of the state either to provide comfort of care of those at the end of life or to provide treatment for those who request it, if it is beneficial and requested by the person, regardless of capacity. Thus far, the literature reviewed has only considered external views of dementia and advance directives. The following section will review some of the research and subjective accounts of dementia that refutes much of the assumptions of choice and competence in the condition.
General view of dementia is that of gradual loss of oneself as one’s cognition declines. Carers often describe the loss in the same manner. As a person with young onset dementia, Bryden contends that there is an overemphasis on the intellect in the definition of “self” or “hypercognitive culture”. The human brain does not equal the person’s life histories and experiences. Damage to the brain is not like damage to a bone. Humans are also defined by their relationships; if there is no account of relationships the self cannot be accurately measured. I am the self, knower, subject and agent for my thoughts which occur in relationships with others around me. There has been no disruption at any time since diagnosis to my subjective sense of being Christine. I have not become nor do I feel as if I am becoming, someone else because of dementia.
My sense of being an embodied self includes living with dementia, as this is who I am, as well as who I will be until I die. I have a sense of being embodied as an “I” with first person feelings about the world around me, distinguishing self from non self.
In reference to Kant, humanity rests in the person as well as everybody else with moral worth. It is an end in itself. This wider view of autonomy stipulates 3 factors why autonomy is morally valuable: (1) individual independence is valuable in itself; (2) a person’s ability to reflect on desires and choose certain ones; and (3) to act on principles. In facilitating autonomy, the only restriction should be to prevent harm to others. The second aspect needs the choice to be informed and reasoned, coherent with other choices in the person’s life as a whole or having been reflected upon. The last aspect

requires the individual transcending oneself to consider humanity as a whole. Therefore, autonomy is not simply self-direction in one’s life but rather the consideration of solidarity with the rest of society. One needs to set aside individual interests for the sake of morality. Autonomy is making decisions in which the greater humanity is taken into consideration because we have relationships with others. Autonomy in this sense is expressed primarily by a person’s ability to self-legislate, out of consideration for others. Kant sees that something has value because it is morally required. We respect one another not because the other person has value, but because it is what is required of our own moral rationality. A person can make one’s own laws with the autonomy of the will and be subject to those laws themselves.
Whilst dementia patients or brain-damaged patients cannot respond to moral reasoning, they need to be respected because they have been members of the moral community. Moral autonomy does not depend on the absence of physical or cognitive deterioration. Kant stresses that we cannot judge another person’s inner motivation with certainty. In this way, moral autonomy should be assumed to be retained in the incompetent person. If a person is defined as human being with moral status, then the inability to show certain empirical properties does not make them non-persons. Even with dementia, the person is still a member of humanity – ‘we are human beings, not human doings’. A mother regards her child as a person even when it is not competent and would respect its needs and wishes because the child is already part of humanity. Being vulnerable is part of human condition especially at the beginning and end of lives. Remembering someone or an event like a robot does not make it a person. A can of baked beans that has lost its label is still a can of baked beans
Advance directives have moral power because the person’s will and moral realisation include the agency in shaping how future humanity recalls him. But in the same vein, a non-competent person still holds moral autonomy. Actively denying potentially life-saving and symptom ameliorating treatment to a non-competent person who requests it or one who is not overtly refusing it, can be construed as violating moral autonomy.
If autonomy is valuable because it allows unifying a person’s experience with the person’s view of himself, the non-competent demented person has lost the ability to unite value with lived experience by not being able to decide to act in a certain way. Nonetheless they may be able to be assisted in bringing about what they want. To the extent that there is an ability to express a choice, then autonomy should have some bearing. There is no reason for a substitute decision-maker to act in the best interest of the individual if autonomy – by some form of expression, does not require respect after person has lost capacity. Substitute decision-making considers what the non-competent person wants now. We respect a child’s wishes even if they don’t have consistent wishes, even if their wishes are experiential. There is intrinsic value in being able to express a choice. It is indicative of the wish to exert control over one’s experience, even if the wish does not contribute to integrity and unity. Regardless of whether the demented person is the same as the pre-morbid person, he has a different life view now. If the demented person has no ability to cope with the frustrations of experiential

interests, he can’t appreciate the critical interests of the pre-morbid person. There are people who purely chase experiential indulgences and sees that as their critical interests. If the person without capacity can still experience experiential pleasures without harming others, it is questionable by whose judgment it is that experiential pleasures are not valid reasons to be obliged.
Ignoring the present interests of an incompetent patient with interests he had when competent, discriminates against the incompetent patient. Whilst critical interests need to be internally generated, negative value can be brought into life. Since how one dies and what happens to the body are part of critical interests, even a person in persistent vegetative state can have critical interests. It would be conceivable that the dementia experience furthers one’s critical interests by external forces. Since critical interests are what makes one’s life as a human being go well and relationships can make a life go well, then a demented person may provide solace and joy to others through his illness. What he means to other people can remain positive and become a critical interest for that person, even if he is not conscious of it. People often think they will never be able to cope with certain disabilities, but when afflicted with these disabilities, the “unbearable” “worse than death” experiences are not as bad as they thought it would be. Within disability literature, it is established that people experience drop in subjective well being initially in becoming disabled, but within a relative short time, they regain a level of contentment they previously had. Adaptation can be facilitated by society and support. In the same way, if there is less stigma about dementia, the negativity associated with it may be decreased. Further, consider one’s “narrative identity”, that is, “who are you” narrative identity (as opposed to numerical identity), which encompasses beliefs, values that make you who you are. Even in late dementia where the person has not expressed interests to speak of, consciousness continues – as a husband, son, brother, worker. These aspects of the identity of the person cannot be discounted. These individual core characteristics remain even when the person loses capacity.
It has been suggested that the very demented are treated as corpses and objects. They die by “social death” before physical death because of the tendency is to hide them from society. Critical interests therefore have potential for change by a change in attitude of society. The cognitively impaired also have a role in society. Thus, dementia and illness need not necessarily be construed as a burden. Dignity is bestowed by how others treat the person with dementia. If a person remains respected, treated with warmth and empathy, dignity can be preserved. The person can then still hold critical interest by virtue of these relationships and attitudes. rad2deg The following section looks at the empirical data on the subjective experience of dementia and the sense of self in various stages of disease. It illustrates how a person who has lost competence from the illness, remains worthy of personhood and all that it entails.

In a study on advance directives for patients with dementia who appear content, 735 Germans were surveyed on their attitudes on vignettes of different distress and invasiveness of interventions. Participants were 161 demented physicians, 191 demented nurses, next of kin and adults. 98.7% considered advanced directives as valid. The more invasive the intervention, the more people deemed advance directive valid. 89% of respondents did not think the demented person is different from his pre-morbid self. In those who chose not to follow the advance directive, 84.8% sees the reason to be the inability to anticipate how it feels to be demented - that the possibility of erroneous anticipation of dementia is worse than it is. They considered that there is a possibility of finding new sources of contentment and find new critical interests. The findings of this study indicate that 97% of advance directive followers believe there is an authority in the autonomous decision preferences. In the actual application of the directives, 95.8% saw the possibility of conflict before and after dementia as one’s own risk to take. 67% of those who would not follow the advance directives stress on the authority of present pleasures because experiential interests can only be determined by the patient. The ongoing value of experiential interests poses the possibility of a sliding scale of experiential and critical interests to determine whether the risks outweigh the benefits of adhering to the directive.
In response to David Parfit’s theory that one needs a certain degree of psychological continuity to be known as the same person, one can consider the results of a study using conversation qualitative analysis of 23 residents of nursing homes in US. Respondents had a mean MMSE 10.65 (2-18). Respondents used first person index often, freely and coherently. They were aware of their changing cognition even if unable to explain the disease. They are able to refer to themselves, their needs and concerns. “It’s my life and that’s how it is” [MMSE 8]. They are often aware they cannot remember but others can. One referred to herself as “Dumb Deirdre”. “I’m doing the best that I can” [MMSE 8] “I wish I were dead. If I were dead, nobody could see me” [ MMSE 15]. Care-giving is focused on preventing behavioural disturbance rather than connecting with expressions or facilitate them to express their self. Staff seems to pity them and see their life as meaningless. But those who could not communicate were excluded.
The above study indicates that people with dementia have a sense of self. There are ways society can facilitate care and diminish the sense of anonymity and isolation to facilitate maintenance of the autonomy of a person with dementia even after capacity is lost.
In 2016, a Norwegian study of a qualitative hermeneutic study of nine cases involving the triad of moderately demented person, family carer and professional caregiver. This study considers the wider autonomy of the wishes of the family. The study found that patients with dementia are aware of risks and harms, but they still want to live at home. The family are then confronted with minimising harm and promoting patient’s well being. This study, consistent with others, has found that professional caregivers trivialise patient’s concerns and limit choice to what the institution allows. For instance, lack of man-power, and lack of resources limits the potential to facilitate the person with dementia in managing personal hygiene. One patient voluntarily moved into a nursing home whilst competent but when demented, she wandered back home several kilometres away. The family kept her home as a result. This poses the question as to whether it was critical interests that

This finding again poses the possibility that a person who has lost capacity may still retain critical interest. Given that others cannot interpret accurately the experience of another, it may be fallacious to assume that the demented person’s experience can be discounted. This study shows that there are grounds to still observe their experiential wishes for the sake of their humanity and ability to express a choice. Personhood is retained even without capacity.

It is well established that the state will err on the side of preservation of life because of the underlying Christian belief in the sanctity of life. With the rise of the rights of the individual manifesting as gradual incorporation advance care directives into the law. The natural extension would be the gradual acceptance of the individual’s right to determine the end of life by suicide.

In Stuart v Kirkland, two police officers were found not negligent in not arresting Mr Veenstra who was preparing to commit suicide in a park. After conversing with him, the police did not deem him mentally ill. Mr Veenstra later completed suicide. The law accepts suicide as the act of the person rather than the responsibility of the person that provided the means of suicide.

Personal autonomy is a value that informs much of the common law. It is a value that is reflected in the law of negligence. The co-existence of a knowledge of a risk of harm and power to avert or minimise that harm does not, without more, give rise to a duty of care at common law. As Dixon J said in Smith v. Leurs, ‘[t]he general rule is that one man is under no duty of controlling another man to prevent his doing damage to a third’. It is, therefore, ‘exceptional to find in the law a duty to control another's actions to prevent harm to strangers’.

Almost all jurisdictions permitting voluntary assisted dying require the person to be competent in making medical decisions. This means that the demented person will never be a candidate for voluntary assisted dying even if the person is suffering horribly. The exception is in the Netherlands, where voluntary assisted dying and voluntary euthanasia have been legal since 2002. Two doctors certify the decision is informed and voluntary and that there is hopeless and unbearable suffering.

In March 2011, a Dutch woman with severe dementia received euthanasia. She was 64. Whilst competent, she had made an advance directive expressing her wish to die in such a situation rather than going into a nursing home. This was supported by her family doctor and her family. This wish had been consistent in spite of the progression of dementia. Her mental state was unstable with frequent anger and tears. Doctors considered this to be unbearable suffering and ended her life. All regional committees thought doctors acted with due care.

In June 2011, the Royal Dutch Medical Association sent out new guidelines for interpretation of their 2002 Euthanasia Act. It expressed concern about euthanasia being extended to early stage of dementia or chronic mental illness. It acknowledged the complexities of interpreting what is ‘unbearable suffering and lasting’. It mandated physicians to act with extreme caution, that there be evidence that it is indeed what the patient wanted even if the patient is no longer competent.

The Dutch case illustrates the difficulty and subjectivity in assessing the degree of suffering. It is not difficult to consider one day the threshold of suffering falls so low that a person requests to be killed if he cannot pass an exam or cannot manage higher maths.

In the preceding sections, the essay examined the rationale for respecting preceding autonomy if there is a conflict between the wishes of a person who has capacity and the wishes of the same person once he loses capacity. This rationale considers autonomy as an individual right to direct one’s life according to values the person wanted his life to adhere to. Once capacity is lost, such ability to consider one’s values is lost. Thus, the wishes of the person without capacity does not warrant consideration. However, the pre-morbid person is significantly different from the person once capacity is lost. Imposing advance directives upon a person who is expressing contrary wishes, would discriminate against the non-competent person. Through empirical data, there is evidence that even in severe dementia, a person retains a sense of self. The line between critical interests and experiential interests is not definitive. A person who has lost capacity may still express wishes that can have critical interests’ origin. In the final section, the essay looks at potential ways of adjusting advance directives to be more useful and achieve a balance between respecting the autonomy of the present and the past individual.

The future for advance directive

In Australia, 14% have ACD 30% have EPA and 59% have a will. Despite its low uptake, it is intuitively reasonable to consider advance directives as a tool in facilitating autonomy of a patient. Empirical evidence confirms this as advanced directive

Improves quality of end of life care compliance to preferences, satisfaction of patient and cares, reduces family stress.

Assessing capacity gives the patient a pathway to express what is in their best interest in their view. Legal medical decision-making is aimed at safeguarding the patient’s endorsed perspective against the professional judgement and resource limitations. A wider interpretation of autonomy includes moral autonomy whereby a person holds a place in humanity thus his wishes deserve to be observed. Being part of humanity is an end in itself for entitlement for autonomy regardless of capacity.
The Nuffield Council on dementia specific ethical states that when deciding on the right thing to do, both the past wishes, and feelings of the person and their wishes and feelings now must be considered. However, sometimes past and present wishes may be quite different. Precedent autonomy gives the obligation to follow advance directives because these are wishes of a person who has considered all aspects of his life as a whole, exercising his right to direct his life to align with his personal critical interests.

Imposing the wishes of the pre-morbid person to the current person who cannot appreciate the rationale for these decisions, does not seem ethical. Ignoring the requests for treatment or intervention, albeit emanating out of experiential interests, ignores the person’s basic entitlement to moral autonomy. Moreover, advance directives have social implications and the person’s value in those positions should be taken into account. By self-constituting, one cannot justify deeming interests as experiential as no one can make that judgment but the person himself.
To make the advance directive more likely to be applicable and clear, it should be mandated to address changes in cognition that occur with dementia, and changes in goals of care that the patient would want as it progresses. It should list the cognitive milestones to describe what each stage means to the patient. They can be guided to state what is most important to them for each of these stages. Values history document can be added. For instance, South Australia Health has ACD DIY Kit. Part 3 of the kit divides the person’s “values and wishes” into categories: things you want people to consider, “outcomes of care I wish to avoid”, “healthcare I prefer” “where I wish to live” “other personal arrangements” and “dying wishes”. Whilst legally non-binding, the kit gives guidance. Part 4 of the kit provides that people can express “binding refusals of healthcare” with specifics on scenarios for application.

Advance directives are legal documents used by non lawyers. They should be simplified so lay persons can understand its implications and validity. Unifying legislation, providing standardised forms, witnessing procedures and storage of the document is vital for the document to be accessible at the needed time. My Health Record will become Australia’s shared electronic personal health record system operating in accordance with My Health Records Act 2012 (Cth). Australians should be encouraged to upload a free text narrative document by themselves including stating their advance care directives.

Conclusion

There appears to be a spectrum of situations for advance directives to be implemented. Rather than an overarching rule that it should always be followed or never be followed, a sliding scale approach may be more desirable. The more informed, thoughtful and factual the advance directive is, the more weight it should be given. When obvious harm to the patient’s current well being will require applying the advance directive, those decisions must be carefully scrutinised to ensure that the scenario for which the author of the directive has anticipated and considered the effects, is now happening. Any sign of a will to live on, on the part of the author who is no longer competent, decreases the validity of the directive unless the exact medical situation is stated in the directive specifically to ignore any wish to live on in that circumstance.

If critical interest is not to live with dementia, but experiential interest is to continue living, a certain number of experiential interests may outweigh the importance of a few critical interests. The quantity and nature of these interests and their weightings can be pre-determined by the author pre-morbidly. A person who requests intervention or is not actively refusing treatment, whose daily life encompasses several experiential pleasures, should be offered the treatment. But if there is no experiential interest, that is, the person’s life is observably unbearable and suffering, then there is no reason to disregard the directive. The greater the number of experiential pleasures compared to critical interest violations, the less compelling it is to follow an advance directive for refusal of care. It is useful for the person to elaborate on the weight of their critical interests and experiential pleasures. To avoid violating the autonomy of a person once they have lost competence, a current evaluation of weight of experiential vs critical interests can be carried out, by the designated substitute decision-maker, to make a more valid and ethical decision that can take into account the current societal climate, the relationships around the incompetent person as well as the observable pleasures and sufferings of the person.

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