Ethical issues in mental health care





Learning Objectives


Upon the completion of this chapter and with further self-directed learning you are expected to be able to:




  • Discuss critically why a charter of rights and responsibilities specific to mental health care is required.



  • Identify eight domains deemed relevant to the rights and responsibilities of both users and providers of mental health care services.



  • Examine the notions of competency and its implications for persons with impaired decision-making capacity.



  • Discuss critically the notions of ‘surrogate / substitute decision-making’ and ‘supported decision-making’ in the case of people deemed to be rationally incompetent.



  • With reference to the idea of psychiatric advance directives in mental health:




    • define what a psychiatric advance directive is



    • discuss critically the different theoretical frameworks and forms that psychiatric advance directives can take



    • discuss critically the different functions that psychiatric advance directives might serve



    • examine the purpose of ‘Ulysses contracts’



    • discuss critically the possible risks and benefits of psychiatric advance directives.




  • With reference to the ethics of suicide prevention, intervention and postvention:




    • discuss the distinction between suicide, suicidal behaviour and parasuicide and why making this distinction is important



    • examine critically at least five criteria that must be met in order for an act to count as suicide rather than some other form of death (e.g. euthanasia)



    • consider arguments both for and against the proposition that people have a ‘right to suicide’



    • examine critically the conditions under which a person’s decision to suicide may warrant respect



    • discuss critically the ethics of suicide prevention, intervention and postvention.




  • Explore ways in which the nursing profession might improve its advocacy of people with mental health problems and severe mental illnesses.





Introduction


The issue of patients’ rights to and in health care, discussed in the previous chapter, has obvious relevance and application for people with mental illness admitted to hospital for the care and treatment of non-psychiatric conditions (e.g. injuries sustained as a result of a road traffic accident, an acute appendicitis, complications of diabetes, renal failure, etc.). It also has obvious relevance for people admitted to mental health care facilities for psychiatric care and treatment. There is, however, one notable caveat to this stance: because the rights of people with mental illness are disproportionately vulnerable to being infringed in health care contexts (both psychiatric and non-psychiatric), a more nuanced approached to the issue is required. Specifically, an approach is required that places strong emphasis on consolidating the mental health interests of those who have or who are at risk of developing mental illnesses and which also emphasises the ‘special’ responsibilities that health care providers have towards this vulnerable group. Underpinning this caveat is the reality that in most jurisdictions around the world there are legislative provisions that enable people with severe mental health illness to be detained, restrained, coerced and / or treated without their consent . This is so even in jurisdictions which have progressive legislative provisions enabling patients to determine in advance their ‘will and preferences’ apropos care, treatment and supported decision-making options ( Callaghan & Ryan 2016 ; Hem et al 2018 ; Molodynski et al 2014 ; Tingleff et al 2017 ).


Coercive measures commonly used in mental health care contexts have been classified as basically involving four types: ‘seclusion, mechanical constraint, physical restraint / holding, and forced medication’ ( Krieger et al 2018 ; Tingleff et al 2017 ); these can be imposed in either institutional or community health care settings (e.g. community treatment order (CTO) contexts) ( Corring et al 2017 ; Nagra et al 2016 ; Molodynski et al 2014 ). In Australian, New Zealand and other common-law jurisdictions, legislative provisions also enable psychiatrists to override a person’s will and preferences and admit (‘commit’) them involuntarily to hospital for treatment, which, in effect, grants psychiatrists the authority to ‘act as substitute decision-makers, rather than as advisers and service providers’ ( McSherry 2012 : 1).


The need of a highly nuanced approach to upholding the rights of persons with mental illness and related problems in health care rests on at least three considerations. First, as discussed previously in Chapter 6 , people with mental illness are among the most stigmatised, discriminated against, marginalised, disadvantaged and hence vulnerable individuals in the world. Moreover, despite the efforts of mental health consumer groups and other mental health advocates, people with mental health problems and psychosocial disabilities continue to experience the infringement of many of their basic human rights (including the right to mental health and to mental health care). This is so despite what Callaghan and Ryan (2016 : 601) describe as a ‘revolutionary paradigm shift’ that is occurring as a result of Article 12 of the UN Convention of the Rights of Persons with Disabilities (CRPD) 1 ‘objecting to the automatic use of substituted decision-making whenever a person fails to meet a functional test of decision-making capacity’.


A second consideration is that many people with mental illness have experienced high rates of trauma during their lifetime. Thus, there is an ever-present risk that, when admitted to a psychiatric facility as an involuntary or non-voluntary patient, their institutional experiences may trigger previous trauma, provoke feelings of fear, anxiety and anger and thereby aggravate their psychiatric symptoms (a burden which others who do not have a history of trauma or mental illness do not carry) ( Cusack et al 2018 ; Goulet et al 2017 ; McKenna et al 2017 ). This can sometimes mean that, rather than providing a ‘psychiatric sanctuary’, an involuntary admission to a psychiatric facility may sometimes be experienced as a ‘psychiatric sentencing’ – akin to a penal incarceration. This is especially likely in cases where involuntary or non-voluntary hospitalisation involves unconsented, coercive institutional procedures such as seclusion, restraints, forced medication and forced feeding ( Borckardt et al 2007 ; Cusack et al 2018 ).


Third, even when persons with mental illness later acknowledge the need for their earlier involuntary or non-voluntary admission to hospital, they are sometimes left feeling very dissatisfied with the situation – not least because they feel that their humanity and dignity have been violated in the process. This, in turn, may be counter-therapeutic because of the harmful emotional effects of the dehumanisation and dignity violation that are sometimes experienced as well as the undermining of trust in the professional–client relationship ( Belcher et al 2017 ; Borckardt et al 2007 ; Cusack et al 2018 ; Gustafsson et al 2014 ).


In seeking to redress the implications of these considerations, mental health advocates have increasingly sought to emphasise and champion a suite of rights and responsibilities that are specific to the context of mental health care. In this chapter an attempt will be made to contribute to this positive project by providing an overview of stated rights and responsibilities in mental health care. Because one of the most ethically confronting issues in mental health care is the coercive treatment 2 of persons admitted as involuntary or non-voluntary patients to a psychiatric facility or program, particular attention will also be given to the issues of informed consent and competency to decide, and ongoing proposals to develop and operationalise ‘psychiatric advance directives’ (PADs) in jurisdictions around the world. Attention will also be given to the vexed issue of the ethics of suicide prevention, suicide intervention and suicide postvention. While drawing primarily on the Australian experience, this discussion nonetheless has relevance for nurses working in other countries.




Vulnerability, human rights and the mentally ill


It has long been recognised at a social, cultural and political level that people suffering from mental illnesses and other mental health-related problems need to have their moral interests as human beings protected from abuse and neglect, which, for a variety of reasons, are especially vulnerable to being violated. This need of protection has also been recognised at an international level as evident from the United Nations General Assembly’s adoption in 1991 of the Principles for the protection of persons with mental illness and for the improvement of mental health care and, a decade later, by the World Health Organization’s release of The world health report 2001: mental health: new understanding, new hope ( WHO 2001a ). A little over a decade later, in the cultural context of Australia, the need to assure the rights of people with mental illness and the ‘provision of recovery-orientated practice in mental health services’ was positioned as a core principle in the Australian Commonwealth Government’s National framework for recovery-oriented mental health services ( Australian Health Ministers Advisory Council (AHMAC) 2013 ) and the Council of Australian Governments’ (2012) Roadmap for national mental health reform 2012–2022 . A similar stance was taken in New Zealand with the Ministry of Health releasing its Rising to the challenge: the mental health and addiction service development plan 2012–2017 (New Zealand Ministry of Health 2012 ).


In attempting to secure protection of the rights of the mentally ill from abuse and neglect, a human rights model of mental health care ethics has been adopted. Underpinning the selection of this model is the view that ‘all people have fundamental human rights’ and that people with mental health problems or mental illness should not be precluded from having or exercising these rights just because of their mental health difficulties. As the Mental Health Consumer Outcomes Task Force argued almost three decades ago (1991: ix):



The diagnosis of mental health problems or mental disorder is not an excuse for inappropriately limiting their [people with mental health problems or disorders] rights.


In March 1991, the Australian Health Ministers acknowledged and accepted the above viewpoint and adopted, as part of Australia’s national mental health strategy, the final report of the Mental Health Consumer Outcomes Task Force, titled Mental health statement of rights and responsibilities . First published in 1991, with a 2012 revised edition of the statement launched in early 2013, this document stands as an influential guide for other public policy initiatives and statements such as the National mental health policy (released in 2008 and committed to by all Australian governments), and successive national mental health plans (including the most recent Fifth national mental health and suicide prevention plan released in 2017 , the National standards for mental health services 2010 and the National carer strategy in 2011 ( Australian Government Department of Health 2010 , 2011 , 2017 ) and other documents (e.g. Mental health statement of rights and responsibilities ( Australian Government Department of Health 2012 : 3)).


The primary objective of the 2012 revised version of the Mental health statement of rights and responsibilities document is to inform stakeholders of the rights of people experiencing a mental illness to have access ‘to timely assessment, individualised care planning, treatment and support’ and the related rights and responsibilities that consumers, carers, support persons, service providers and the community all have in relation to these rights ( Australian Government Department of Health 2012 : 3). To this end, the document addresses the following eight domains:





  • 1.

    Inherent dignity and equal protection – encompassing the right of all people to respect the human worth and dignity of people with mental illnesses, and to support people who are mentally ill or intellectually disabled to exercise their rights when their own capacity to do so is impaired.


  • 2.

    Non-discrimination and social inclusion – encompassing the rights to: privacy and confidentiality; health, safety and welfare; equal opportunities to access and maintain health and mental health care, and other social goods; contribute to and participate in the development of social, health and mental health policy and services.


  • 3.

    The promotion of mental health and the prevention of mental illness – encompassing the responsibilities of governments and health service providers to: promote mental health; support, develop, implement and evaluate programs for preventing mental health problems and illnesses; support the ongoing development of comprehensive, flexible, integrated, and accessible community, primary health and hospital-based social support, health and mental health services.


  • 4.

    The rights and responsibilities of people who seek assessment, support, care, treatment, rehabilitation and recovery – encompassing the right of people (including children) to ‘participate in all decisions that affect them, to receive high-quality services, to receive appropriate treatment, including appropriate treatment for physical or general health needs, and to benefit from special safeguards if involuntary assessment, treatment or rehabilitation is imposed’ (p 12).


  • 5.

    Rights and responsibilities of carers and support persons – encompassing the rights and responsibilities of carers and support persons in relation to the rights to: respect the human worth and dignity of people; privacy and confidentiality; seek and receive appropriate training and support; participate in and contribute to the development of social, health and mental health policy.


  • 6.

    Rights and responsibilities of people who provide services – encompassing rights and responsibilities in regards to upholding the highest possible standards of mental health care, including the development and implementation of social, health and mental health policy and service delivery policies and guidelines.


  • 7.

    Rights and responsibilities of the community – encompassing the responsibility of communities to be adequately informed and educated about mental health issues, and to uphold the rights of mental health consumers and their carers.


  • 8.

    Governance – encompassing the responsibility of governments and other stakeholders to ensure that mental health initiatives (including service provision, mental health legislative reform, and other forensic matters) are appropriately resourced and supported.

(adapted from Mental health statement of rights and responsibilities ( Australian Government Department of Health 2012 )).


At first glance, the content and intent of the Mental health statement of rights and responsibilities (2012) seem to provide an important basis for the protection of the human rights of people made vulnerable by mental health problems. On closer examination, however, the practical guidance that this statement can offer is also limited – like other codes and statements, they cannot tell people what to do in particular cases .


As previously explained, a moral right can be defined as a special interest or entitlement which a person has and which ought to be protected for moral reasons. The claim of a moral right usually entails that another person has a corresponding duty to respect that right. Fulfilling a corresponding duty can involve either doing something ‘positive’ to benefit a person claiming a particular right or, alternatively, refraining from doing something ‘negative’ which could harm a person claiming a particular right. For example, if a patient claims the right to make an informed consent concerning prescribed psychotropic medication or electroconvulsive therapy (ECT), this imposes on an attending health care professional a corresponding duty to ensure that the patient is fully informed about the therapeutic effects and the adverse side effects of the treatments in question as well as to respect the patient’s decision to either accept or refuse the treatment, even where the health professional may not agree with the ultimate decision made. The moral force of the right’s claim in this instance is such that if an attending health care professional does not uphold or violates the patient’s decision in regard to the treatment options considered, that patient would probably feel wronged or that an injustice had been done. The health care professional in turn could be judged, criticised and possibly even censured on grounds of having infringed the patient’s rights.


An important question to arise here is: ‘If statements on mental health rights and responsibilities fall short of providing clear-cut guidance in cases of this nature, is there any point in having them?’ The short answer to this question is, yes. Whatever the faults, weaknesses and difficulties of such statements, they nevertheless achieve a number of important things; like bills and charters of patient rights generally,




  • they help to remind mental health patients / consumers, service providers, caregivers and the general community that people with mental health problems (including mental illnesses and mental health problems) have special moral interests and entitlements that ought to be respected and protected



  • they help to inform stakeholders (patients / consumers, service providers, caregivers and the community) of what these special entitlements are and thereby provide a basis upon which respect for and protection of these can be required



  • they help to delineate the special responsibilities that stakeholders (patients / consumers, service providers, caregivers and the community) all have in ensuring the promotion and protection of people’s moral interests and entitlements in mental health care and in promoting mental health generally



  • they help to remind all stakeholders (patients / consumers, service providers, caregivers and the community at large) that their relationships with each other are ethically constrained and are bound by certain correlative duties.





Competency to decide


As discussed in the previous chapter under the subject heading ‘The analytic components and elements of an informed consent’, an essential criterion to satisfying the requirements of an informed consent is competency to decide . Determining whether a person has the competency to make an informed decision about whether to accept or reject a recommended treatment is not a straightforward matter, however. This is because there is no substantial agreement on the characteristics of a ‘competent person’ or on how ‘competency’ should be measured. To complicate this matter further, there is also no substantial agreement on what constitutes rationality , which, as has been argued elsewhere, is very much a matter of subjective interpretation. As Gibson (1976) pointed out in an early article on the subject, rationality cannot escape the influences of the social patterns and institutions around it and, for this reason, any value-neutral account of rationality is quite inadequate. She further suggested that, at most, rationality should be regarded as a value , rather than a property that all ‘normal’ people have ( Gibson 1976 : 193). In summary, the notion of ‘rational competency’ is problematic because there is no precise definition of, or agreement on, what it is.


Philosophical disputes about what constitutes ‘rationality’ and ‘competency to decide’ have particular ramifications for people who have what has been termed ‘fringe decision competence’ ( Hartvigsson et al 2018 ), who are cognitively impaired and / or who, because of the manifestations of severe mental illness, are involuntarily admitted to psychiatric facilities for treatment. The lack of conceptual clarity in this instance risks ‘pushing ethics to their limits’ – especially in cases ‘where patients have not reached out for help’ yet treatments are imposed without their informed consent ( Gustafsson et al 2014 : 176).


Even if there were agreement on what constitutes rational competency, there remains the problem of ‘whereby the definition of competence changes in different clinical situations’ ( Gert et al 1997 : 135). For example, an elderly demented resident may be deemed competent to eat his / her evening meal alone, but deemed not competent to refuse treatment – for example, surgery for a fractured hip. As Gert and colleagues (p 132) go on to explain, we need to appreciate that persons as such are ‘not globally “competent” but rather “competent to do X”, where X is some specific physical or mental task’. In other words, competence is always ‘task specific’ and determining or measuring competence is thus always ‘context dependent’.


Significantly the issue of competency rarely arises in contexts where the patient agrees with and consents to a doctor’s recommended or prescribed treatment. Rather, it tends to be only in cases of ‘treatment refusals, especially those that appear to be irrational, that the question of a patient’s competence most frequently and appropriately arises’ ( Gert et al 1997 : 142; see also Light et al 2016 ). An instructive example of this can be found in the much-publicised Australian case of John McEwan that occurred in the mid 1980s and which sparked an unprecedented public inquiry into the so-called ‘right to die with dignity’ ( Social Development Committee 1987 ).


John McEwan, a former Australian water-skiing champion, was left a ventilator-dependent quadriplegic after a diving accident at Echuca, Victoria. Throughout his hospitalisation, he repeatedly asked to be allowed to die. At one point, desperate to achieve his wish, he went on a hunger strike and instructed his solicitor to draw up a ‘living will’, which stated ‘that he did not wish to be revived if and when he fell into a coma’ ( Bioethics News 1985 : 2). According to media reports, this act led to a psychiatrist certifying him as rationally incompetent, thereby enabling John McEwan to be treated (fed) against his will. The psychiatrist’s judgment was revoked a few days later, however, when John McEwan ‘agreed to end his hunger strike and accept a course of antidepressants’ (p 2).


A little over a year after his accident, and despite still being ventilator dependent, John McEwan was discharged home. The round-the-clock day care he required was given by family members and friends who had received special training in how to care for him. In the weeks following his discharge from hospital, John McEwan continued to express his wish to be allowed to die ( Social Development Committee 1987 : 310–11). This prompted the general practitioner who was medically responsible for him to inform the senior nursing assistant that:



John McEwan at his own request could come off the ventilator from time to time but had to be reconnected if he became distressed even if it was against his own wishes . [emphasis added] ( Social Development Committee 1987 : 312)


During one incident, while at home, John McEwan was observed to be angry at having been reconnected to the ventilator against his wishes. Also, in another incident shortly before his death, he talked openly with his general practitioner about ‘hiring someone to blow his [John McEwan’s] brains out or kill him as he felt his wish to die was being frustrated’ ( Social Development Committee 1987 : 316). There was no reason to suspect that John McEwan’s wishes were irrational. Before his accident he had been a committed sportsman and for him the life of a helpless quadriplegic was intolerable.


At four o’clock in the morning on 3 April 1986, John McEwan was found dead by his nursing attendant. At the time of discovery he was disconnected from his ventilator.


It is perhaps easy to think of competency in cases such as this in purely medical or psychiatric terms. In an early work on the subject, Roth and colleagues (1977) argue, however, that the concept of competency is not merely a psychiatric or medical concept, as some might assume, but is also fundamentally social and legal in nature. They go on to warn that there is no magical definition of competency, and that the problems posed by so-called ‘incompetent’ persons are very often problems of personal prejudices and social biases, or of other difficulties associated with trying to find the ‘right’ words. In a more recent work on competency, Light and colleagues (2016 : 34) argue that ‘all definitions of capacity [for decision-making] involve intrinsically normative judgments and inevitably reflect the influence of context and values’. These views have been underscored in an insightful essay by Stier (2013) who explores the fundamentally normative nature generally of assessing, diagnosing and treating mental illness – including determining whether something is a mental illness (which relies on normative judgments about ‘normal’ versus ‘deviant’ behaviour), irrational (which includes judgments about ‘impaired reality testing’), or harmful and distressing (which relies on value-laden judgments about whether something is ‘bad and dysfunctional’).


Historically the critical issue in developing tests of competency is how to strike a contented balance between serving a rationally incompetent person’s autonomy and also serving that person’s health care, nursing care and medical treatment needs . Also of critical concern is finding a competency test which is comprehensive enough to deal with diverse situations, which can be applied reliably and which is mutually acceptable to health care professionals, lawyers, judges and the community at large.


Roth and colleagues (1977) suggest that competency tests proposed in the literature basically fall into five categories:



  • 1

    evidencing a choice


  • 2

    ‘reasonable’ outcome of choice


  • 3

    choice based on ‘rational’ reasons


  • 4

    ability to understand


  • 5

    actual understanding.



The test of evidencing a choice is as it sounds, and is concerned only with whether a patient’s choice is ‘evident’; that is, whether it is present or absent . For example, a fully comatose patient would be unable to evidence a choice, unlike a semi-comatose patient or a brain-injured person, who could evidence a choice by opening and shutting their eyes or by squeezing someone’s hand to indicate ‘yes’ or ‘no’. The quality of the patient’s choice in this instance is irrelevant. One problem with this test, however, is whether, say, the blinking of a patient’s eyelids can be relied upon as evidencing a choice; in a life-and-death situation one would need to be very sure that a patient’s so-called ‘evidencing a choice’ is more than just a reflex.


The test of reasonable outcome of choice is again as it sounds, and focuses on the outcome of a given choice, as opposed to the mere presence or absence of a choice. The objective test here is similar to that employed in law, and involves asking the question: ‘What would a reasonable person in like circumstances consider to be a reasonable outcome?’ The reliability of this measure is, of course, open to serious question – as might be objected, what one person might accept as reasonable another might equally reject.


The test of choice based on ‘rational’ reasons is a little more difficult to apply. Basically, it asks whether a given choice is the product of ‘mental illness’ or whether it is the product of prudent and critically reflective deliberation. A number of objections can be raised here. For example, contrary to popular medical opinion, there is nothing to suggest that a person’s decision to suicide is always the product of mental disease or depression. A patient could without contradiction ‘rationally’ choose suicide as a means of escaping an intolerable life characterised by suffering intractable and intolerable pain. Alternatively, a depressed and so-called ‘irrational’ person might refuse a particular psychiatric treatment, such as psychotropic drugs, electroconvulsive therapy or psychosurgery, out of a very ‘rational’ and well-founded fear of what undesirable effects these treatments might ultimately have.


The test of ability to understand , on the other hand, asks whether the patient is able to comprehend the risks, benefits and alternatives to a proposed medical procedure, as well as the implications of giving consent. Here objections can be raised concerning just how sophisticated a patient’s understanding needs to be. The problem also may arise of patients perceiving a risk as a benefit. Roth and colleagues (1977 : 282), for example, cite the case of a 49-year-old psychiatric patient who was informed that there was a one-in-three-thousand chance of dying from ECT. When told of this risk she replied, happily: ‘I hope I am the one!’


The fifth and final competency test is that of actual understanding . This test asks how well the patient has actually understood information which has been disclosed. This can be established by asking patients probing questions and inviting them to reiterate the information they have received. On the basis of educated skill and past experience, the health professional is usually able to ascertain the level at which the patient has understood the information received and what data gaps or misunderstandings remain.


A variation of this test was further developed and advanced by Grisso and Appelbaum (1998 : 31), and includes assessing patients for their abilities to:





  • 1.

    express a choice


  • 2.

    understand information relevant to treatment decision-making


  • 3.

    appreciate the significance of that information for [their] own situation, especially concerning [their own] illness and the probable consequences of [their] treatment options


  • 4.

    reason with relevant information so as to engage in a logical process of weighing treatment options. [emphasis original]



In a later appraisal and application of this test, Appelbaum (2007 : 1835) reiterates that legal standards for assessing the decision-making capacity of patients still generally embody ‘the abilities to communicate a choice, to understand the relevant information, to appreciate the medical consequences of the situation, and to reason about treatment choices’. In relation to these criteria, he goes on to clarify that the patient’s task in consent situations is to:






  • clearly indicate their preferred treatment options;



  • grasp the fundamental meaning of the information being communicated by their attending doctor (apropos the nature of patient’s condition, nature and purpose of proposed treatment, possible benefits and risks of that treatment, and alternative approaches (including no treatment) and their benefits and risks);



  • acknowledge (have insight into) their medical condition and likely consequences of the treatment option available (noting that ‘delusions or pathologic levels of distortion or denial are the most common causes of impairment’);



  • engage in a rational process of manipulating [sic] the relevant information (this criterion focuses on the process by which a decision is reached, not the outcome of the patient’s choice, since patients have the right to make ‘unreasonable’ choices).

( Appelbaum 2007 : 1836)


He further clarifies that the doctor’s commensurate task in consent situations is to:






  • ask the patient to indicate a treatment choice;



  • encourage the patient to paraphrase disclosed information regarding their medical condition and treatment options;



  • ask the patient to describe their views of medical conditions, proposed treatment and likely outcomes;



  • ask the patient to compare treatment options and consequences and to offer reasons for selection of the option chosen.

( Appelbaum 2007 : 1836)


Since the publication of the foundational works by Grisso and Appelbaum (1998) and Appelbaum (2007) , a number of competency assessment tools have been developed 3 ( Wang S-B et al 2017 ). Of these, the MacArthur Competence Assessment Tools (MacCATs) developed and trialled by Appelbaum and Grisso ( Appelbaum & Grisso 1995 ; Grisso & Appelbaum 1995 ; Grisso et al 1995 , 1997 ) are generally regarded ‘as having the most reliability and validity for assessing competence related to functional abilities, and have been widely used in psychiatry’ ( Wang S-B et al 2017 : 56). Criteria stipulated in other jurisdictions are reflective of these original proposals. For example, in Australian jurisdictions, ascertaining whether a patient has the capacity to make informed decisions requires that the following processes be examined and shown:




  • the comprehension and retention of information about the treatment



  • the capacity to formulate a reasonable belief about the information that has been given



  • the capacity to weigh up that information in the balance so as to arrive at a prudent choice



  • the capacity to communicate the decision made (after Kerridge et al 2013 : 384–6).



Similarly in the United Kingdom – for example, Section 3(1) of the UK Mental Capacity Act (2005) stipulates that, in order to be deemed rationally incompetent, a patient must be suffering from a condition that makes him or her unable to:





  • (i)

    understand information relevant to the decision


  • (ii)

    retain that information


  • (iii)

    use or weigh that information as part of the process of making the decision, or


  • (iv)

    communicate his decision.

(cited in Banner 2012 : 1079)


These and like criteria remain problematic, however. Because of unresolved uncertainties concerning how the concept of competency is to be interpreted and applied by clinicians, and the tendency to overlook what Banner describes as the ‘inherent normativity of judgments made about whether a person is using or weighing information in the decision-making process’, there remains the ever-present risk of patients failing on the criteria ‘to the extent that they do not appear to be handling the information given in an appropriate way, on account of a mental impairment disrupting the way the decision process ought to proceed’ ( Banner 2012 : 3078; see also Stier 2013 and Light et al 2016 – both referred to earlier).


It should be noted that competency is a key issue not just in psychiatric care, but in any health care context where judgments of competency are critical to deciding: (1) whether a patient can or should decide and / or be permitted to decide for herself or himself, and (2) the point at which another or others will need to or should decide for the patient – that is, become what Buchanan and Brock (1989) term surrogate decision-makers and what is variously referred to in Australian jurisdictions as involving ‘substitute decision-making’ and ‘supported decision-making’, with the latter placing the person who is being supported ‘at the front of the decision-making process’ ( Australian Law Reform Commission (ALRC) 2014 : 51). The question remains, however, of how these things can be decided in a morally sound and just way. This question becomes even more problematic when it is considered that persons deemed ‘rationally incompetent’ (or, at least, cognitively impaired) can still be quite capable of making ‘reasonable’ self-interested choices, and, further, that the choices they make – even if ‘irrational’ – are not always harmful ( Williams 2002 ; see also Light et al 2016 ; Stier 2013 ).


Commenting on the moral standards which should be met when deciding whether to respect or override the expressed preferences of a patient deemed ‘incompetent’, Buchanan and Brock (1989) have classically argued in their foundational text that it is important to be clear about what statements of competence refer to. Like Gert and colleagues (1997) , cited earlier, they argue that statements of competence (i.e. in clinical contexts) usually refer to a person’s competence to do something , in this instance, to choose and make decisions ; according to this view, competence is, therefore, ‘choice and decision-relative’. Given this, determining competence in health care contexts fundamentally involves determining a person’s ability to make particular choices and decisions under particular conditions ( Buchanan & Brock 1989 : 311–65; see also Light et al 2016 )).


An important problem here, particularly in psychiatric contexts, is that severe mental illness can significantly affect the capacities needed for competent decision-making (for instance, understanding, reasoning and applying values), and hence the ability generally of severely mentally ill persons to make sound decisions about their own wellbeing – including the need for care and treatment. For example, as Buchanan and Brock (1989 : 318) comment:



a person may persist in a fixed delusional belief that proffered medications are poison or are being used to control his or her mind. Such delusions or fixed false beliefs obviously may also impair a person’s capacity to reason about whether hospitalisation and treatment will on balance serve his or her wellbeing. Severe mental illness can also affect and seriously distort a person’s underlying and enduring aims and values, his or her conception of his or her own good, that one must use in evaluating hospitalisation and treatment for an illness.


It is precisely in situations such as these that attending health care professionals need a reliable framework within which to decide how best to act – notably: (1) whether to respect a patient’s preferences even though the patient is deemed ‘incompetent’, or (2) whether to override patients’ preferences in the interests of protecting or upholding what has been deemed by others to be in the patient’s overall ‘best interests’. Just what such a framework would – or indeed should – look like is, however, a matter of some controversy. Nevertheless, as Buchanan and Brock’s highly cited work Deciding for others: the ethics of surrogate decision-making (1989) has shown, it is possible to devise at least a prima-facie working framework to guide professional ethical decision-making in this sensitive, complex and problematic area. Specifically, Buchanan and Brock (1989 : 84–6) suggest that the whole issue hinges on:





  • 1.

    setting and applying accurately standards of competency to choose and decide; and


  • 2.

    achieving a balance between (i) protecting and promoting the patients’ wellbeing (human welfare), (ii) protecting and promoting the patients’ entitlement to and interest in exercising self-determining choices, and (iii) protecting others who could be harmed by patients exercising harm-causing choices.



With regard to setting and applying accurately standards of competency to choose and decide, Buchanan and Brock suggest that, among other things, ethical professional decision-making in this problematic area should be guided by the following considerations (1989: 85):



No single standard of competence is adequate for all decisions. The standard depends in large part on the risk involved, and varies along a range from low / minimal to high / maximal. The more serious the expected harm to the patient from acting on a choice, the higher should be the standard of decision-making capacity, and the greater should be the certainty that the standard is satisfied.


In other words, the extent to which an attending health care professional is bound morally to respect the choices of a person deemed ‘rationally incompetent’ depends primarily on the severity of the risks involved to the patient if her or his choices are permitted. The higher and more severe the risks involved, the higher and more rigorous should be the standards for determining the patient’s decision-making capacity, and the more certain attending health care professionals should be that the patient has met these standards. Appelbaum likewise asserts that when a patient’s decisions are of a life-and-death nature a ‘relative high level performance with respect to the relevant criteria should be required’ ( Appelbaum 2007 : 1838). This framework is expressed diagrammatically in Fig. 8.1 .




FIGURE 8.1


Assessing risk and permitting choices of patients deemed ‘rationally incompetent’


For example, if a patient with severe mental illness decides to refuse hospitalisation, the extent to which an attending health professional is obliged morally to respect this decision will depend on how severe the risks to the patient are of not being hospitalised – for instance, whether a failure to hospitalise the patient will result in her or him suiciding, or will result only in her or him being left in a state of moderate, although not life-threatening, depression. In the case of suicide risk, the grounds for not honouring a patient’s decision do seem at least prima facie stronger than possible grounds for overriding the decision of a patient who is only moderately depressed. (Whether or not the risk of suicide does provide strong grounds for overriding a patient’s decision to refuse hospitalisation and treatment is another question, and one which is considered shortly in this chapter.)


While Buchanan and Brock’s (1989) ‘sliding scale’ framework is useful, it is not free of difficulties. For instance, there remains the problem of how to determine what is a harm, what is a low / minimal and high / maximal risk of harm, and who properly should decide these things – the answers to which involve complex value judgments. Consider, for example, the following case (personal communication).


An involuntary psychiatric patient refuses to take the psychotropic medication he has been prescribed. In defence of his refusal, the patient argues ‘reasonably’ that the adverse side effects of the drugs he is being expected to take are intolerable, and that he would prefer the pain of his mental illness to the intolerable side effects of the drugs that have been prescribed to treat his mental illness. Staff on the ward in which he is an involuntary patient are divided about what they should do. The more experienced staff members in this case insist that the patient should be given his medication forcibly by intramuscular injection. They argue in defence of this decision that the patient’s condition is deteriorating rapidly, and that if he does not receive the medication prescribed he will ‘spiral down into a psychiatric crisis’ (in other words a total exacerbation of his condition), which would be even more intolerable and harmful than the unpleasant side effects he has been experiencing as a result of taking the psychotropic drugs in question. They make the additional value judgment that it would be ‘better’ for the patient if his psychiatric condition were prevented from deteriorating, and that their decision to administer his prescribed medication forcibly against his will is justified on these grounds.


The less experienced staff members on the ward disagree with this reasoning, however, and argue that, even though the patient’s psychiatric condition is deteriorating, and this is a preventable harm, the patient is nevertheless able to make an informed decision about this and therefore his wishes should be respected. In defence of their position, they argue that the patient’s complaints are justified – the adverse side effects of his psychotropic drugs have indeed been ‘awful’, and are commonly experienced by other patients as well; and that he has experienced a decline in his psychiatric condition before, and hence knows what to expect. Further, they argue, if he is given the medication against his will, an even greater harm will follow: specifically, he will trust the nursing staff even less than he does already, and will be even less willing to comply with his oral medication prescription than he is now.


In this case, the more experienced staff outnumbered the less experienced staff, and the patient was held down and forcibly given an intramuscular injection of the medication he had refused. Later, after recovering from this incident, the patient was, as predicted by the less experienced nursing staff, grossly mistrustful of the nursing staff on the ward, and even less willing to comply with his oral medication prescription. His requests for different and less drugs, and more counselling, went unheeded.


This case scenario demonstrates the difficulties that can be encountered when accepting / rejecting a patient’s ability to choose and decide care and treatment options, and deciding when and how to override a patient’s preferences. Not only is there the problem of how to determine accurately what a harm is and how a given harm should be weighted morally when evaluating whether a patient’s choices should be respected or overridden; there is the additional problem that attending health care professionals may disagree radically among themselves about how these things should be determined – to a point that may even cause rather than prevent harm to the patient, as happened in this case. What else then should health care professionals do?


One response is to insist on the development of reliable (research-based) criteria for deciding these sorts of problematic issues. The need to do this becomes even more acute when the problem of determining and weighing harms is considered in relation to the broader demand to achieve a balance between protecting and promoting the patient’s wellbeing, protecting and promoting the patient’s autonomy, and protecting others who could be harmed if a mentally ill person is left free to exercise harm-causing choices (as happened in the Tarasoff case, considered in Chapter 7 ).


Just what these criteria should be, however, and how they should be applied, is an extremely complex matter, and one that requires much greater attention than it is possible to give here. Nevertheless, Buchanan and Brock (1989) provide an important basis for identifying the following three factors which need to be taken into consideration when deciding whether to override a mentally ill person’s decisions, namely: (1) whether the person is a danger to herself or himself, (2) whether the person is in need of care and treatment, and (3) whether the person is a danger to others. In regard to the consideration of being a danger to self, Buchanan and Brock (1989 : 317–31) correctly argue that what is needed are stringent criteria of what constitutes a danger to self ; in the case of the need for care and treatment, that what is needed are stringent criteria for ascertaining deterioration and distress ; and in the case of harm to others, that what is needed are stringent criteria of what constitutes a danger to others . Also, although applying the criteria developed may inevitably result in a health care professional assuming the essentially paternalistic role of being a surrogate decision-maker for a given patient, this need not be problematic provided the model of surrogate decision-making used is patient centred – that is, committed to upholding the patient’s interests and concerns insofar as these can be ascertained.


A patient-centred model of surrogate decision-making, in this instance, would have as its rationale preventing harm to patients , and would embrace an ethical framework which is structured ‘for deciding for patients for their benefit ’ ( Buchanan & Brock 1989 : 327, 331). This is in contrast with a non-patient or ‘other’-centred decision-making model, which would have as its rationale preventing harm to others , and which embraces an ethical framework ‘for deciding about others for others’ benefits ’ ( Buchanan & Brock 1989 : 327, 331). It should be noted, however, that these two models are not necessarily mutually exclusive and indeed could, in some instances, be mutually supporting (a man contemplating a violent suicide involving others is a danger not only to himself but also to the innocent others he plans to ‘take with him’). Just which model or models are appropriate, and under what circumstances they should be used, will, however, depend ultimately on the people involved (and the relationships between them), the moral interests at stake, the context in which these moral interests are at stake, the resources available (human and otherwise) to protect and promote the moral interests that are at risk of being harmed, and, finally, the accurate prediction of possibilities and probabilities in regard to the achievement of desirable and acceptable moral outcomes. This, in turn, will depend on the competence, experience, wisdom and moral integrity of the decision-makers, and the degree of commitment they have to: (1) ensuring the realisation of morally just outcomes and (2) protecting and promoting the wellbeing and moral interests of those made vulnerable not just by their mental illnesses, but also by the inability of their caregivers to respond to the manifestation of their illnesses in an informed, morally sensitive, humane, therapeutically effective and culturally appropriate way.




Psychiatric advance directives


As previously indicated in this section, an integral and controversial component of psychiatric practice is involuntary care and treatment. Although practised under the rubric of benevolent paternalism, the tenets of involuntary treatment have nonetheless seriously challenged and, in many instances, infringed the rights of mentally ill persons – particularly those whose decision-making capacity has been seriously compromised by their illness – to make informed and self-determining decisions about their care and treatment. Thus, the right to make informed and self-determining decisions has the distinction of provoking controversy in the field – a controversy that has been classically described as:



the apparent clash between two highly revered values: the ‘right to be let alone’ and the patient’s interest in the full and effective exercise of medical [sic] professionals’ healing skills. ( Dresser 1982 : 777)


On account of the tension between patient autonomy and therapeutic paternalism in psychiatric contexts – and the extraordinarily difficult and sometimes tragic situation in which this has often placed people (consumers and caregivers alike) – advocates and commentators have searched for ways to reconcile or at least accommodate the opposing values at issue ( Dresser 1982 ). Underpinning this search has been the commensurate pressing need to find a balance between promoting autonomy and preventing harm and, equally important, finding a way to advance a genuine ‘ “supported decision-making” model in which a person makes treatment decisions for themselves, with support where required’ ( Ouliaris & Kealy-Bateman 2017 : 574).


Striking a balance between promoting autonomy, supporting decision-making and preventing harm


People with serious mental illnesses can often experience periods of profound distress during which their capacity to make prudent and self-interested decisions about their care and treatment options can be seriously compromised. During such periods, the mentally ill can also be at risk of harming themselves and / or others. In either case, timely and effective psychiatric treatment and care are imperative.


In many instances, people with serious mental illnesses might not comply with, and might even refuse altogether to accept, recommended psychiatric treatment (e.g. oral or intramuscular psychotropic medication, or electroconvulsive therapy). In such instances, because of the psychiatric imperatives to treat their conditions (particularly if extremely distressed and ‘out of control’), the mentally ill are vulnerable to having medical treatments paternalistically imposed on them against their will. Enforced treatments in such cases may, however, compound their distress and make future treatment difficult, especially if the patient later feels (i.e. during a moment of restored competency to decide) that the fiduciary nature of the professional–client relationship has been violated.


Situations involving the enforced medical treatment of the mentally ill can cause significant distress to caregivers as well who, while wanting to respect the preferences of their patients, may nevertheless recognise that, without treatment, patients in distress (and their families or supporters) will not be able to be consoled and, worse, may remain unnecessarily in a state of ‘psychiatric crisis’. Here very practical questions arise of what, if anything, can be done to strike a balance between respecting the patient’s autonomous wishes and constraining their freedom where its exercise could be harmful to themselves and / or to others?


For many, the answer lies in the systematic development and formal adoption of psychiatric advance directives (PADs). Widdershoven and Berghmans (2001 : 92) explain that:



By using psychiatric advance directives, it would be possible for mentally ill persons who are competent and with their disease in remission, and who want timely intervention in case of future mental crisis, to give prior authorisation to treatment at a later time when they are incompetent, non-compliant, and refusing treatment.


Later works have consistently reaffirmed this view ( Ouliaris & Kealy-Bateman 2017 ; Sellars et al 2017 ; Zelle et al 2015a ). Although ‘gold standard’ evidence is lacking, the authors of a 2009 Cochrane Database Systematic Review on ‘Advance treatment directives for people with severe mental illness’ nonetheless concluded that advance directives were ‘well suited to the mental health setting for the purpose of conveying patients’ treatment preferences should they become unable to articulate them in the future’ ( Campbell & Kisely 2009 : 10).


But what are PADs, and are they capable of achieving the outcomes that their proponents anticipate and expect? It is to providing a brief overview of PADs – their origin, their rationale, their basic function, the perceived risks and benefits of adopting them, and the possible enablers and disablers to their uptake – that this discussion now turns.


Origin, rationale and purpose of psychiatric advance directives


Psychiatric advance directives have been defined as ‘documents that allow users with severe and chronic mental illnesses to notify their treatment preferences for future crisis relapses and to appoint a surrogate decision-maker for a period of incompetence’ ( Nicaise et al 2013 : 1). A review of the literature has found that the information and options most frequently cited by users when preparing a PAD are:



  • 1

    contact details of the user, the consultant, the general practitioner, the psychiatric nurse and the nominee (trusted person nominated by the user)


  • 2

    mental health problem or diagnosis


  • 3

    current medication and dosage


  • 4

    early signs of crisis


  • 5

    instructions to follow at the beginning of a crisis ( Nicaise et al 2013 : 10).



The main purpose of providing this information and alerting service providers to their preferred options is to ensure the continuity of their care, although research demonstrating this purpose remains inconclusive.


Variously named ‘psychiatric wills’, ‘self-binding directives’ (SBDs), ‘advance directives’, ‘advance statements’, ‘advance agreements’, ‘advance instructions’, ‘crisis cards’ and ‘Ulysses contracts’, the idea of notifying treatment preferences in advance, or making a ‘psychiatric will’ (a term that is analogous to ‘living wills’), is credited with originating in the work of the eminent American psychiatrist, Thomas Szasz (1982) , and the identified need for psychiatric patients to have an instrument that enabled them to refuse unwanted treatment. It was (and continues to be) believed that, when completing PADs during periods of ‘competency’, persons with severe mental illnesses will be enabled to feel ‘empowered’ and to have a sense of ‘self-determination’ ( Nicaise et al 2013 : 8; see also Berghmans & van der Zanden 2012 ).


In a 2013 systematic review of the literature on the subject, Nicaise and colleagues (2013) identified three main theoretical frameworks or rationales for PADs:




  • enhancement of the user’s autonomy



  • improvement in the therapeutic alliance between the users and clinicians



  • integrations of care through health providers working in partnership with clients and families.



Subsequent literature published on the subject (too numerous to cite here) has reaffirmed these findings (to be discussed further under the following sections on anticipated risks and benefits of PADs).


Forms and function of psychiatric advance directives


Since first being proposed in the early 1980s, PADs have evolved and tend to take one or both of the following two forms, notably:




  • an instructional directive ‘that provides specific information about a patient’s treatment preferences’



  • a proxy directive , in which a patient ‘appoints a surrogate decision-maker who has legal authority to make treatment decisions on behalf of the patient when incapacitated’ ( Srebnik 2005 : S42).



Depending on the legal regulations governing a given PAD, a directive can contain provisions for either ‘opting-out’ (refusing) treatment (both general and specific – e.g. ECT), or ‘opting-in’ (consenting to services as well as to specific treatments) ( Atkinson et al 2003 ; Swartz et al 2006 ). To put this more simply, PADs stand to serve the basic functions of:




  • prescription (advance consent to treatment options)



  • proscription (advance refusal or rejection of treatment options)



  • surrogate decision-maker designation 4 (identification and advance nomination of substitute decision-makers)



  • irrevocability during a crisis (also known as a ‘Ulysses contract’ – see below) ( Swartz et al 2006 : 67).



Of these four functions, the Ulysses contract is arguably the most reflective of the moral justification of PADs. The origin of the term ‘Ulysses contract’ is not clear although it probably originated in a commentary by Ennis (1982 : 854) in which reference is made to ‘Odysseus at the mast’, published in response to Szasz’s (1982) original article on ‘The psychiatric will’ (see also Hastings Center Report 1982a ).


The idea of a Ulysses contract derives from Homer’s story of the mythological character Ulysses (known as Odysseus in Greek mythology) who escaped being seduced to his death by the ‘sweet songs’ of the Sirens, the magical women of Cyrene, who cast spells on the sailors of ships so that their vessels would be wrecked and subsequently could be scavenged. Being previously warned of the evil intentions of the Sirens, Ulysses took the precaution of commanding his sailors to bind him to the mast of his ship (effectively restraining him), and to plug their ears with wax so that they could not hear and hence be seduced to their deaths by the Sirens. Ulysses further ordered his sailors not to release him from the mast until they were safely past the Sirens. By taking these steps, Ulysses was able to investigate the power of the Sirens without being seduced to his death by them as well as ensure the safety of his ship and his crew as they sailed past them. This story is used controversially in philosophy to demonstrate the difference between freedom and autonomy: in this case, although Ulysses had his freedom constrained (i.e. by having his body tied to the mast of his ship), his autonomy (rational preference) was essentially left intact – including during the momentary period of his incompetence while under the bewitching spell of the magical Sirens. This myth has been taken by PAD proponents as analogously justifying psychiatric patients abdicating their ‘freedom’ to substitute decision-makers during periods of incapacitation: although restrained during these periods, like Ulysses, their autonomy nonetheless remains intact.


Anticipated benefits of psychiatric advance directives


Despite the expectations reflected in the stated purposes and theoretical frameworks of PADs, their overall acceptance and uptake remain patchy. Moreover, there is little evidence showing that PADs have, in fact, achieved their intended purpose ( Campbell & Kisely 2009 ). Nonetheless PADs have been touted as having the capacity to realise a number of benefits including: ‘decrease hospitalizations, reduce coercion in treatment, and improve relationships between consumers, families and clinicians’ ( Peto et al 2004 ; Sellars et al 2017 ; Zelle et al 2015a ), and destigmatising patients with mental illness on account of giving them the same rights to refuse psychiatric treatment as patients who wish to refuse general medical treatment ( Atkinson et al 2004 ). To date, however, the anticipated benefits of PADs have yet to be realised. One reason for this is the systemic barriers to their use including a ‘lack of resources deployed to assist patients in preparing PADs (unless assistance is provided, completion rates for PADs tend to be low), and a lack of “buy-in” and acceptance of PADs by clinicians’ ( Swanson et al 2007 : 78). Lack of awareness and education about PADs (on the part of consumers and clinicians alike) has also been identified as a contributing factor ( Peto et al 2004 ). This, in turn, has contributed to a lack of competence on the part of both health service providers and service users to honour and implement PADs (Nicaise et al 2013: 2). Other barriers that have been identified include:




  • concerns about the ‘legal and ethical issues relating to the liability for implementing or overriding (PAD) statements’



  • the lack of capacity of ‘the system’ to organise therapeutic alliances and care around service user preferences ( Nicaise et al 2013 : 2).



Some studies have suggested that, overall, clinicians are broadly supportive of the ‘advance-consent’ function of PADs (termed ‘prescriptive function’); however, clinicians are more reticent about their ‘advanced-refusal’ function (termed ‘proscriptive function’) – especially if used to refuse all future treatment ( Swartz et al 2006 ).


Although barriers to the implementation of PADs persist, research has found that consumers continue to have a high interest in and demand for PADs. This is in contrast to clinicians, who have consistently been found to be somewhat ambivalent about and even afraid of them ( Amering et al 1999 ; Appelbaum 2004 , 2006 ; Atkinson 2004 ; Atkinson et al 2004 ; Elbogen et al 2006 ; Hobbs 2007 ; Kaustubh 2003 ; Kim et al 2007 ; Puran 2005 ; Srebnik & Brodoff 2003 ; Swanson et al 2006a , 2006b , 2006c , 2007 ; Swartz et al 2006 ; Varekamp 2004 ). In one US study, for example, although 66%–77% of consumer respondents stated they would like to complete a PAD if given the opportunity and assistance to do so, only 4%–13% had actually done so ( Swanson et al 2006b ). In a UK study, whereas 89% of voluntary organisations and more than two-thirds of stakeholder groups surveyed thought that PADs were needed, only 28% of psychiatrists surveyed thought they were ( Atkinson et al 2004 ).


Comparable studies conducted in Australia and New Zealand have had similar findings. For example, in what is believed to be the first published national study of its kind, an Australian survey of 143 psychiatrists found that less than 30% supported PADs which involved treatment refusals (e.g. cessation of medication, remaining out of hospital and not being the subject of an involuntary admission to a psychiatric facility) ( Sellars et al 2017 ). Of those who reported they did not support PADs, the key rationale was concern for the ‘clinical profile of the patient and the professional imperative regarding the psychiatrist’s duty of care’ ( Sellars et al 2017 : 70). In short, those who did not support PADs placed more importance on clinical outcomes than on upholding patient autonomy.


A New Zealand survey of 110 mental health service users and 175 clinicians had similar findings ( Thom et al 2015 ). The researchers reported that, although most (93%) of both clinicians and users supported the idea of PADs, they differed significantly on the preferred content of such directives – particularly with regard to the use of seclusion as a method of de-escalation. Whereas most clinicians believed that New Zealand’s mental health legislation should be able to override a user’s preferences outlined in a PAD, in contrast most mental health service users disagreed that legislation should enable their preference to be overridden ( Thom et al 2015 ).


Also, although some studies have suggested that clinicians are broadly supportive of the ‘advance-consent’ function of PADs (termed ‘prescriptive function’), clinicians are more reticent about their ‘advance-refusal’ function (termed ‘proscriptive function’) – especially if used to refuse all future treatment ( Swartz et al 2006 ).


Despite this reticence, the PAD is increasingly being regarded as an important instrument that enables respect of not only the patient’s wishes, but also their values (i.e. in regard to what is important in life). Further, although PAD instruments should not ‘replace deliberation about possible future changes in the patients’ condition’ ( Widdershoven & Berghmans 2001 : 93), they are nonetheless seen as having an important role to play in eliciting and guiding communication about such matters (see also Spellecy 2003 ).


Anticipated risks of psychiatric advance directives


It is important to acknowledge that, despite their envisaged benefits, PADs are not without risk. Some commentators are especially worried about their moral authority (particularly if patients change their minds at some point) and their vulnerability to being abused and misused ( Spellecy 2003 ). As Dresser (1982 : 842) cautioned over three decades ago, if insufficiently informed persons enter into commitment contracts ‘only to please their psychiatrists, the contracts would become an avenue for the abuse of psychiatric paternalism, thus decreasing individual liberty’. Dresser further cautions that, in the absence of an opportunity for patients to withdraw consent to treatment, PADs in reality could well stand as a ‘coercive treatment mode that would take us a step backward – or at least sideways – from a more sensitive and realistic solution to a very difficult situation’ ( Dresser 1982 : 854). The inability to get ‘quick determinations’ of illness and competency – and hence healing treatment – has also been identified as a risk that could serve ultimately to undermine the effectiveness of PADs ( Cuca 1993 : 1178; see also Nicaise et al 2013 ). These risks may be accentuated in cases where the PADs are ‘competence-insensitive’ and service providers wrongly judge the point at which a PAD applies and apply it prematurely ( Bielby 2014 ).


Earlier in this chapter, under the discussion of competency to decide, the case was given of an involuntary psychiatric patient who was held down and given an intramuscular injection of psychotropic medication against his will (see pp 213–14 ). It will be recalled that this incident resulted in the patient being left highly mistrustful of nursing staff and even less willing to comply with his prescribed oral medication. There is room to speculate that, had a PAD been in force at the time for this patient, a very different outcome might have resulted in this case.


Current trends in the legal regulation of psychiatric advance directives


The enactment of formal legislation regulating PADs has a protracted history dating back to the USA, which has the longest history of their use, with Minnesota in 1991 becoming the first American state to enact legislation giving recognition to the ‘advance psychiatric directive’ allowing its citizens to ‘draft directives for intrusive mental health treatments’ ( Cuca 1993 : 1165). Currently almost two-thirds of the states in the USA have legal processes in place for allowing and managing PADs (Zelle et al 2015b).


Early proponents of PADs in the US expected that their use would spread ( Appelbaum 1991 ). Progress has been slow, however. Only a few countries (e.g. Australia, Austria, Germany, Canada, Switzerland, the Netherlands and the United Kingdom) have introduced or are working to introduce and uphold PADs or ‘psychiatric wills’ ( Amering et al 1999 ; Atkinson et al 2003 ; Varekamp 2004 ). In the UK, for example, the passage through parliament of the Mental Capacity Bill 2004 (which was given Royal Assent in 2005, and came into force in 2007) authorises a limited form of PADs (i.e. instruments provided for by this legislation can only be used to refuse rather than to give consent to treatment) ( Meredith 2005 : 9; Swartz et al 2006 ).


Arguably the most profound change (described as an ‘evolving revolution’ by Callaghan and Ryan 2016 ) has occurred in Australian jurisdictions. Prior to 2014 there seemed to be little optimism that PADs will be formally adopted in Australian jurisdictions as a legal mechanism for promoting and protecting the rights of mentally ill people to participate effectively in decision-making concerning their psychiatric care and treatment. Since then a substantive paradigm shift has occurred, which has seen PADs incorporated into mental health legislation in the Australian Capital Territory (2015), Queensland (2016), Victoria (2014) and Western Australia (2014), with the Australian Capital Territory legislation regarded by commentators as the most progressive (see comparative table in Ouliaris & Kealy-Bateman 2017 : 576). There is, however, still work to be done, noting that provisions for PADs have not yet been incorporated in the mental health legislation of all Australian jurisdictions and that, even where it has been (e.g. Victoria), patient preferences can still be overridden under defined circumstances ( Callaghan & Ryan 2016 ; Maylea & Ryan 2017 ). However, in compliance with the provisions contained in the CRPD, there is now recognition that ‘persons with disabilities enjoy legal status on an equal basis with others in all aspects’ and that this requires recognition that competent persons, at least, have the right to refuse psychiatric treatment ( Maylea & Ryan 2017 : 88).


The changes that are occurring are not merely cosmetic and reflect a substantive move away from models of clinical decision-making based on determinations of ‘best interests’ and ‘harm minimisation’ (and which have tended to be over-reliant on assessment of capacity and rational competency) towards a model of ‘supported decision-making’ (SDM). As noted earlier, SDM places the person who is being supported at the front of the decision-making process ( ALRC 2014 ). This paradigm shift in mental health is challenging traditional evaluation criteria and conventional justifications for involuntary treatment. On this point, with reference to the provisions contained on the CRPD, Callaghan and Ryan (2016 : 610) explain:



Capacity assessment must not be used as a tool to deprive people of the right to participate in decision-making. Capacity must be presumed, and people with mental illness must be offered the support to exercise capacity.


Several years ago, a consumer advocate pleaded:



Psychiatric Advance Directives can fulfil a real need – almost everyone I talk with about them immediately recognises that […] I’d like to see Psychiatric Advance Directives legally enforceable throughout Australia […] At the very least, I’d like to see changes to mental health legislation, removing any impediments to the use of Advance Directives in mental health settings. That said – I think Advance Directives can be used effectively, even in states where they have no formal legal status. ( Strong, nd )


It has taken a very long time but, it would seem, this advocate’s plea is at last being heard.




Striking a balance between promoting autonomy, supporting decision-making and preventing harm


People with serious mental illnesses can often experience periods of profound distress during which their capacity to make prudent and self-interested decisions about their care and treatment options can be seriously compromised. During such periods, the mentally ill can also be at risk of harming themselves and / or others. In either case, timely and effective psychiatric treatment and care are imperative.


In many instances, people with serious mental illnesses might not comply with, and might even refuse altogether to accept, recommended psychiatric treatment (e.g. oral or intramuscular psychotropic medication, or electroconvulsive therapy). In such instances, because of the psychiatric imperatives to treat their conditions (particularly if extremely distressed and ‘out of control’), the mentally ill are vulnerable to having medical treatments paternalistically imposed on them against their will. Enforced treatments in such cases may, however, compound their distress and make future treatment difficult, especially if the patient later feels (i.e. during a moment of restored competency to decide) that the fiduciary nature of the professional–client relationship has been violated.


Situations involving the enforced medical treatment of the mentally ill can cause significant distress to caregivers as well who, while wanting to respect the preferences of their patients, may nevertheless recognise that, without treatment, patients in distress (and their families or supporters) will not be able to be consoled and, worse, may remain unnecessarily in a state of ‘psychiatric crisis’. Here very practical questions arise of what, if anything, can be done to strike a balance between respecting the patient’s autonomous wishes and constraining their freedom where its exercise could be harmful to themselves and / or to others?


For many, the answer lies in the systematic development and formal adoption of psychiatric advance directives (PADs). Widdershoven and Berghmans (2001 : 92) explain that:



By using psychiatric advance directives, it would be possible for mentally ill persons who are competent and with their disease in remission, and who want timely intervention in case of future mental crisis, to give prior authorisation to treatment at a later time when they are incompetent, non-compliant, and refusing treatment.


Later works have consistently reaffirmed this view ( Ouliaris & Kealy-Bateman 2017 ; Sellars et al 2017 ; Zelle et al 2015a ). Although ‘gold standard’ evidence is lacking, the authors of a 2009 Cochrane Database Systematic Review on ‘Advance treatment directives for people with severe mental illness’ nonetheless concluded that advance directives were ‘well suited to the mental health setting for the purpose of conveying patients’ treatment preferences should they become unable to articulate them in the future’ ( Campbell & Kisely 2009 : 10).


But what are PADs, and are they capable of achieving the outcomes that their proponents anticipate and expect? It is to providing a brief overview of PADs – their origin, their rationale, their basic function, the perceived risks and benefits of adopting them, and the possible enablers and disablers to their uptake – that this discussion now turns.




Origin, rationale and purpose of psychiatric advance directives


Psychiatric advance directives have been defined as ‘documents that allow users with severe and chronic mental illnesses to notify their treatment preferences for future crisis relapses and to appoint a surrogate decision-maker for a period of incompetence’ ( Nicaise et al 2013 : 1). A review of the literature has found that the information and options most frequently cited by users when preparing a PAD are:



  • 1

    contact details of the user, the consultant, the general practitioner, the psychiatric nurse and the nominee (trusted person nominated by the user)


  • 2

    mental health problem or diagnosis


  • 3

    current medication and dosage


  • 4

    early signs of crisis


  • 5

    instructions to follow at the beginning of a crisis ( Nicaise et al 2013 : 10).



The main purpose of providing this information and alerting service providers to their preferred options is to ensure the continuity of their care, although research demonstrating this purpose remains inconclusive.


Variously named ‘psychiatric wills’, ‘self-binding directives’ (SBDs), ‘advance directives’, ‘advance statements’, ‘advance agreements’, ‘advance instructions’, ‘crisis cards’ and ‘Ulysses contracts’, the idea of notifying treatment preferences in advance, or making a ‘psychiatric will’ (a term that is analogous to ‘living wills’), is credited with originating in the work of the eminent American psychiatrist, Thomas Szasz (1982) , and the identified need for psychiatric patients to have an instrument that enabled them to refuse unwanted treatment. It was (and continues to be) believed that, when completing PADs during periods of ‘competency’, persons with severe mental illnesses will be enabled to feel ‘empowered’ and to have a sense of ‘self-determination’ ( Nicaise et al 2013 : 8; see also Berghmans & van der Zanden 2012 ).


In a 2013 systematic review of the literature on the subject, Nicaise and colleagues (2013) identified three main theoretical frameworks or rationales for PADs:




  • enhancement of the user’s autonomy



  • improvement in the therapeutic alliance between the users and clinicians



  • integrations of care through health providers working in partnership with clients and families.



Subsequent literature published on the subject (too numerous to cite here) has reaffirmed these findings (to be discussed further under the following sections on anticipated risks and benefits of PADs).

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