Refusal of Medical Treatment

Purpose of the review—Decisions to withdraw or withhold potentially life-sustaining treatment are common in intensive care and precede the majority of deaths. Where families resist or oppose doctors’ suggestions that it is time to stop treatment it is often unclear what should be done. This review will summarize recent literature around futility judgements in intensive care emphasising ethical and practical questions. Recent findings—There has been a shift in the language of futility. Patients’ families often do not believe medical assessments that further treatment would be unsuccessful. Attempts to determine through data collection which patients have a low or zero chance of survival have been largely unsuccessful, and are hampered by varying definitions of futility. A due-process model for adjudicating futility disputes has been developed in Texas, and may provide a better solution to futility disputes than previous futility statutes. Summary—Specific criteria for unilateral with...

The essay deals with the informed consent to allow or to refuse medical treatment for pediatric patients, in a comparative law perspective.
The first part focuses on the principle of personal autonomy and the rights to health and to life for patiens who lack capacity, as enshrined in Italian legislation. In determining care and treatment in relation to their child, parents have to take into account the physical and mental well-being, life and dignity of the person, as fully as possible (art. 3, L. 219/2017).
The second part of the paper investigates the consequences of parents' refusal to interrupt or continue life-sustaining treatment in relation to infants suffering from serious and incurable deseases. The subject has been dealt with in some Italian and English cases, in which the judges considered that the willingness of parents to cease or to provide care against medical opinion was not in line with the best interest of the child.

The inquest into the death of Kerrie Wooltorton in Norfolk, England, ignited extensive public debate on the scope of the common law right to refuse medical treatment where a patient is distressed, depressed or actively suicidal. In Australia, a patient’s wishes need not be honoured if the patient is not legally competent, if he or she falls within the ambit of the compulsory treatment provisions in the mental health legislation, and possibly also if there is a recognised public interest in preventing suicide which is sufficient to  override the patient’s choice. This article argues that decisions about whether to give medical treatment despite an apparent refusal should be based solely on a determination of the patient’s competence to make their own choice. However, the test for legal competence must take into account the person’s agency in making the decision, and decisions which will effectively end the person’s life must be shown to be thought through.

Increasingly, individuals want control over their own destiny. This includes the way in which they die and the timing of their death. The desire for self-determination at the end of life is one of the drivers for the ever-increasing number of jurisdictions overseas that are legalising voluntary euthanasia and/or assisted suicide, and for the continuous attempts to reform state and territory law in Australia. Despite public support for law reform in this field, legislative change in Australia is unlikely in the near future given the current political landscape. We argue that there may be another solution which provides competent adults with control over their death and to have any pain and symptoms managed by doctors, but which is currently lawful and consistent with prevailing ethical principles. ‘Voluntary palliated starvation’ refers to the process which occurs when a competent individual chooses to stop eating and drinking, and receives palliative care to address pain, suffering and symptoms that may be experienced by the individual as he or she approaches death. In this article, we argue that, at least in some circumstances, such a death would be lawful for the individual and doctors involved, and consistent with principles of medical ethics.

Purpose of the review

Decisions to withdraw or withhold potentially life-sustaining treatment are common in intensive care and precede the majority of deaths. Where families resist or oppose doctors’ suggestions that it is time to stop treatment it is often unclear what should be done. This review will summarize recent literature around futility judgements in intensive care emphasising ethical and practical questions.

Recent findings

There has been a shift in the language of futility. Patients’ families often do not believe medical assessments that further treatment would be unsuccessful. Attempts to determine through data collection which patients have a low or zero chance of survival have been largely unsuccessful, and are hampered by varying definitions of futility. A due-process model for adjudicating futility disputes has been developed in Texas, and may provide a better solution to futility disputes than previous futility statutes.

Summary

Specific criteria for unilateral withdrawal of treatment have proved hard to define or defend. However, it is ethical for doctors to decline to provide treatment that is medically inappropriate or futile. Understanding the justification for a futility judgement may be relevant to deciding the most appropriate way to resolve futility disputes.

My principal focus in this chapter is upon violent states that obtain between offerer and refuser and societally in relation to the offering and withholding of food. I offer the conceptualisation that the violent state of mind of the sufferer herself - the intrapsychic state - is one in which agonised and agonising deliberations and circular loops of thought ('anti-thought', perhaps?), consequent upon the intensities of dread and longing that spiral outwards from the idea that food may be offered, generate surges of anxiety and distress. This state of mind is teleological (see eg Skårderud 2007, p.330): the imperative that something must be done may very rapidly dominate, flooding her consciousness. Violent deeds - vomiting, self-starvation, self-exhaustion and other practices of self-harming - may often appear to be the product of these states of mind.

These violent states and the refusal which appears to be at their centre are phenomena which may often be mis-recognised. In fact, since I began writing about food refusal and trying to find language in my clinical practice for my thoughts about this phenomenon, more than one sufferer has challenged my use of the term 'refusal'. They have pointed out that I am thereby attributing intent, conscious or unconscious, even as I try to caution against that particular kind of violence being perpetrated. Here therefore, in relation to the concept of 'refusal', I am taking care to specify the perception of the offerer - the violent state of mind in the offerer that may emerge in response to his experience that his food is being refused.

Moslims en medische behandeling: Een oriëntatie op de ethisch-juridische status van behandeling binnen de (soennitisch-)islamitische traditie 1 MUSLIMS AND MEDICAL TREATMENTS Islam's ethical juridical tradition holds a predominately positive, approving attitude towards medical treatment. Currently, the dominant opinion regarding medical treatment is that the context should determine the moral judgment of a treatment decision. In cases where not treating a patient could lead to greater harm, treatment becomes a moral obligation. The condition for this is that treatment will lead to (partial) recovery. Because of this, Islamic ethics regarding medical treatment seems to be mostly teleological. This implies that both physician and Muslim patient can decide to waive medical treatment if effective treatment is unavailable. Hoewel Nederland een scheiding van kerk en staat kent, betekent dit niet dat hiermee de zichtbaarheid en de rol van religie in het publieke domein is verdwenen. De gezondheidszorg betreft één van de terreinen waar het spanningsveld tussen het seculiere en het 'heilige' voelbaar is. Omdat religieuze affiliatie bij ethische beslissingen over leven en dood nog steeds een grote rol speelt, is het bij uitstek een gebied waar het publieke en het private samenkomt. 2 In Medisch Contact zijn de afgelopen jaren enkele kwesties besproken waar deze ontmoeting de verhouding tussen behandelaars en moslimpatiënten en hun familie zwaar op de proef stelde. Centraal in deze casussen stonden medisch-ethische dilemma's rondom het levenseinde. 3 Uit onderzoek naar palliatieve zorg aan Marokkaanse en Turkse patiënten van Fuusje de Graaf et al. (2010) blijkt dat deze doelgroep en hun families, veelal moslims, maximale op genezing gerichte diagnose en behandeling als goede zorg beschouwen. Deze opvatting gaat hand in hand met de overtuiging dat het zo lang mogelijk verlengen van het leven van de patiënt een Goddelijke imperatief is. 4 Dit suggereert dat er voor moslims weinig ruimte is voor palliatieve zorg. 5 Het is maar de vraag of deze praktijkgerichte conclusie van Fuusje de Graaf overeenkomt met het normatieve ethisch-juridische discours binnen de Islamitische

1. Il 24 ottobre 2018, la Corte costituzionale ha riconosciuto come il divieto assoluto di aiuto al suicidio, previsto all’art. 580 del codice penale, presenti alcuni profili di illegittimità. Da un lato, la disposizione è «funzionale alla protezione di interessi meritevoli di tutela da parte dell’ordinamento» (p. 6), come il bene della vita e la protezione delle persone più deboli e vulnerabili. Dall’altro, in presenza di situazioni specifiche come quelle in cui versava DJ Fabo, l’aiuto a morire «può presentarsi al malato come l’unica via d’uscita per sottrarsi, nel rispetto del proprio concetto di dignità della persona, a un mantenimento artificiale in vita non più voluto e che egli ha il diritto di rifiutare» (p. 8). La Corte in particolare, indica quattro condizioni concrete in presenza delle quali il divieto assoluto di aiuto a morire pone problemi di incostituzionalità. Si tratta dei casi in cui la persona sia «(a) affetta da una patologia irreversibile e (b) fonte di sofferenze fisiche o psicologiche, che trova assolutamente intollerabili, la quale sia (c) tenuta in vita a mezzo di trattamenti di sostegno vitale, ma resti (d) capace di prendere decisioni libere e consapevoli». Di fronte a tale situazione, il divieto assoluto di aiuto al suicidio «costringe il paziente a subire un processo più lento, in ipotesi meno corrispondente alla propria visione della dignità nel morire e più carico di sofferenze per le persone che gli sono care» (p. 8).

2. Consapevole della portata complessiva delle proprie considerazioni e dei valori in gioco, la Corte ha, tuttavia, deciso di non dichiarare subito l’incostituzionalità dell’art. 580 cp., ma di rinviare la trattazione delle questioni di legittimità costituzionale all’udienza del 24 settembre 2019. In questo modo, i giudici hanno invitato il Parlamento, in una logica di leale e dialettica collaborazione, a intervenire su una materia posta all’incrocio «di valori di primario rilievo, il cui compiuto bilanciamento presuppone, in via diretta ed immediata, scelte che anzitutto il legislatore è abilitato a compiere» (p. 11). Com’è noto, il Parlamento non ha adottato alcuna disciplina dell’aiuto al suicidio; la Corte si ritroverà, quindi, all’udienza del 24 settembre a decidere come intervenire su una normativa già espressamente riconosciuta «non conforme a Costituzione» (p. 11).

3. A fronte di tale situazione, e nel solco di quanto sostenuto dalla Corte, nel dicembre del 2018, gli autori di questo documento, accademici e professionisti esperti di tali tematiche, hanno deciso di avviare un percorso di riflessione sulle principali questioni giuridiche del fine-vita. Partendo dall’ordinanza ma non limitandosi ad essa, il gruppo di lavoro si è riunito con cadenza mensile presso l’Università degli Studi di Trento, con il sostegno del progetto Jean Monnet BioTell, affrontando e approfondendo i numerosi snodi dell’ordinanza della Corte costituzionale e dell’eventuale intervento delle Camere. I risultati di tali riflessioni sono stati quindi raccolti ed elaborati, insieme ad alcune proposte operative, nel documento, che offre una lettura costituzionalmente orientata e scientificamente fondata delle problematiche che si pongono nelle fasi finali dell’esistenza. Si è voluto così dare un contributo al dibattito pubblico auspicato dalla Corte; dibattito che, accompagnando le scelte che verranno fatte nelle diverse sedi istituzionali coinvolte, dovrà essere quanto più consapevole e plurale possibile.

This is the final article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Victoria. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals' legal knowledge in this area. The article examines the level of training that medical professionals receive on issues such as refusal of treatment certificates and substitute decision-making, and the available empirical evidence as to the state of medical professionals' knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Victoria. The article also draws together themes from the series as a whole, including conclusions about the need for more...

This article reviews a series of high-profile decisions made during 2016 by the Western Australian Family Court in relation to a child with a brain tumour whose parents were resistant to his being treated with chemotherapy and radiotherapy by reason of their commitment to natural therapies and their belief at an early stage after his diagnosis that orthodox medical treatment should be abandoned in favour of palliative care. The article argues that the decisions in Director Clinical Services, Child & Adolescent Health Services v Kiszko [2016] FCWA 19, 34 and 75 constitute a problematic precedent in terms of the potential for certain forms of parental behaviour being able to engineer a desired outcome that may not be in the best interests of a vulnerable child. It contends that efforts should be made to hear the voice of a child in such cases, that it is important that collateral agendas which may be influencing antagonism to treatment be identified early, and that a constructive role may be able to be played by child protection authorities in prompt initiation of litigation where attempts at non-adversarial resolution of a treatment impasse have failed. It is a clash of values between the parents and the doctors over comfort, treatment and cure. The parents value comfort higher than a 50 per cent chance of five-year survival. The doctors hold the opposite value. The parents and doctors might as well be speaking different languages. One is talking treatment with the hope of longer life, while the other is talking about comfort and quality of life. Dr Joe Kosterich (2016). 1

In the light of some recent cases, this paper examines the constitutional nature and the current Spanish
regulation of the patient’s rights to refuse and withdraw a medical treatment, with the aim of providing the
constitutionally accurate answer to the following question: under the current Spanish legislation, is it
possible to refuse or to withdraw the life-support treatment?

The principle of autonomy underpins legal regulation of advance directives that refuse life-sustaining medical treatment. The primacy of autonomy in this domain is recognised expressly in the case law, through judicial pronouncement, and implicitly in most Australian jurisdictions, through enactment into statute of the right to make an advance directive. This article seeks to justify autonomy as an appropriate principle for regulating advance directives and relies on three arguments: the necessity of autonomy in a liberal democracy; the primacy of autonomy in medical ethics discourse; and the uncontested importance of autonomy in the law on contemporaneous refusal of medical treatment. This article also responds to key criticisms that autonomy is not an appropriate organising principle to underpin legal regulation of advance directives.

This paper examines one kind of conscientious refusal: the refusal of healthcare professionals to treat sexual dysfunction in individuals with a history of sexual offending. According to what I call the Orthodoxy, such refusal is invariably impermissible, whereas at least one other kind of conscientious refusal—refusal to offer abortion services—is not. I seek to put pressure on the Orthodoxy by (i) motivating the view that either both kinds of conscientious refusal are permissible or neither is, and (ii) critiquing two attempts to buttress it.

Though the patient’s autonomy, and therefore his/her rights to choose and to refuse
the medical treatment, is one of the guiding principles of the Spanish medical legislation,
there are diverse situations in which the law recognises the legitimacy of providing,
or even imposing, a medical treatment without/against the patient’s consent. Departing
from the Spanish Constitutional Court doctrine on the fundamental rights to life and
to physical and psychological integrity, this article explores the constitutional nature
of those situations and tries to provide the key elements to elucidate the constitutional
meaning of the so called cases of «life saving treatment refusal»

I argue that pregnant women have a duty to refrain from behaviours (e.g. taking illicit drugs) or to allow certain acts to be done to them (e.g. caesarean section) for the sake of their foetus if the foetus has a reasonable chance of living and being in a harmed state if the woman does not refrain from those behaviours or allow those things to be done to her. There is a proviso: that her refraining from acting or allowing acts to be performed upon her does not significantly harm her. This duty does not presuppose that the foetus is a person. It is grounded on principles of respect for the interests of sentient beings and prevention of harm to future individuals. I give an argument for a general duty of easy rescue.

On October 24, 2018 the Italian Constitutional Court held that the absolute ban on assisted suicide provided for by Art. 580 of the Italian criminal code is unconstitutional under certain conditions. On the one hand, this Article «serves the purpose of protecting interests that are worthy of protection by the legal system» (p. 6), such as life and the protection of weak and vulnerable people. On the other hand, in specific situations like the one in the DJ Fabo's case, the assistance to die «may seem to the sick person to be the only way out of being kept alive by artificial methods that are no longer desired, and which he or she has the right to refuse» (p. 8). In particular the Court has set four conditions under which the absolute prohibition of suicide assistance can turn to be unconstitutional, and namely in those cases in which «assisted persons are (a) affected by an illness that is incurable and (b) causes physical or psychological suffering, which they find absolutely i...

A series of decisions by superior courts exercising their parens patriae jurisdiction in Australia, New Zealand, the United Kingdom and Canada has overturned decisions by parents, and by minors, including some close to the age of 18, to decline life-saving treatment on the basis that such treatment is “in the best interests” of the children concerned. This article reviews the reasoning in such cases and analyses the justifications proffered for giving limited weight to the expressed wishes of children and even of their parents in such matters. It identifies that the issues have particularly arisen in respect of families that are Jehovah’s Witnesses and also where there is strong opposition to the application of mainstream medicine in the context of burdensome treatment for life-threatening conditions. It acknowledges the seriousness of such decisions and the potential for collateral influences that are difficult to identify to exert significant impact upon wishes expressed in respec...

The term "value of life" can refer to life's intrinsic dignity: something non-incremental and time-unaffected in contrast to the fluctuating, incremental "value" of our lives, as they are longer or shorter and more or less flourishing. Human beings are equal in their basic moral importance: the moral indignities we condemn in the treatment of e.g. those with dementia reflect the ongoing human dignity that is being violated. Indignities licensed by the person in advance remain indignities, as when people might volunteer their living, unconscious bodies for surrogacy or training in amputation techniques. Respect for someone's dignity is significantly impacted by a failure to value that person's very existence, whatever genuine respect and good will is shown by wanting the person's life to go well. Valuing and respecting life is not, however, vitalism: there can be good and compelling reasons for eschewing some means of prolonging life.

Patients have a right to refuse medical treatment. But what should happen after a patient has refused recommended treatment? In many cases, patients receive alternative forms of treatment. These forms of care may be less cost-effective. Does respect for autonomy extend to providing these alternatives? How far does justice constrain autonomy? I begin by providing three arguments that such alternatives should not be offered to those who refuse treatment. I argue that the best argument which refusers can appeal to is based on the egalitarian principle of equality of outcome. However, this principle does not ultimately support a right to less cost-effective alternatives. I focus on Jehovah's Witnesses refusing blood and requesting alternative treatments. However, the point applies to many patients who refuse cost-effective medical care.

The trouble is, we don’t know what Brian really wanted. Everything turns on that. We know how he died, but we don’t know why.

At some point in his care, someone needed to sit down with him and uncover his heartfelt desires—something that is easier said than done. My model for this sort of interview is the seventies TV detective, Lieutenant Columbo. Clad in his characteristic crumpled trench coat and clutching an unlit cigar, Columbo would get to the bottom of things by asking the right questions in the right way. With a faux naivete, and usually as apparent afterthought, he
would politely point out inconsistencies in a person’s story and hoist these into the light. He never accused; he simply wondered out loud, and let his interlocutor wonder with him.

Many of us will lose the capacity to make our own decisions at some point in our life, and we may then receive medical treatment we would not have chosen for ourselves. Through the ‘Advance Decision’ (AD), the law provides the opportunity to refuse such treatments in advance. We argue that psychologists have a key role to play in raising awareness of ADs and helping people to write them.

In this chapter we take as a paradigm for these psycho-social dynamics, severe disturbances of eating and the spoiling and refusal of food in severe anorexia nervosa. We explore what happens when traumatised dis-organisations, who identity themselves as would-be helpers, become bound up with identifications in which they experience themselves as inhabiting the providing role. We examine what happens to them when their food and provisions are refused, messed around, with and thrown back at them by clients who nonetheless remain famished, emaciated and in desperate need of nourishment. To express this in different language, we explore the nature and impact of problematic processes of projective and introjective identification between ‘the would-be helpers’ and the ‘refuse-to-be helped’ clients when the relationship between them comes to be characterised by interpersonal dis-order and collective dis-organisation. We will also examine the ways in which the mutual hatred and reciprocal violence which inevitably emerges is projected into the would-be-helping organisation, both from inside (the reasonable and unreasonable expectations of the staff), and from outside (the reasonable and unreasonable expectations of the general public, the clients, the funders and other stakeholders); and how collective identifications with these projections result in traumatised dis-organisation.

Legislation regulating advance directives exists in six Australian jurisdictions. In all of these jurisdictions, legislation was enacted to enshrine the common law right of a competent adult to refuse treatment in advance, even if that treatment was required to sustain life. It was thought that enshrining the common law would also enshrine the principle of autonomy on which the common law was based. This article explores whether this is the case by examining the legislative restrictions that are imposed on a competent adult who wishes to complete an advance directive refusing treatment. The article reviews the legislation in all Australian jurisdictions and concludes that, while many of the legislative restrictions can be justified, many cannot as they effectively erode rather than promote the right of a competent adult to refuse treatment.