Palliative care

This case study highlights some important legal and ethical considerations related to advance care planning A 71‐year‐old man with vascular risk factors including hypertension and hypercholesterolaemia lived at home with his wife and enjoyed reading, listening to music and discussing global issues. Immediately on disembarkation from a long flight, he experienced a sudden reduction in consciousness with accompanying right hemiplegia and neglect. He was diagnosed with a large left middle cerebral artery infarct and underwent thrombolysis. Following the procedure, he was haemodynamically unstable, with further investigation revealing massive pulmonary emboli. He was anticoagulated and his condition stabilised. Over subsequent days, his hemiplegia improved, and it was felt that with time and ongoing therapy he would be able to stand independently and mobilise with assistance. Unfortunately, he remained severely globally dysphasic and this was considered unlikely to improve. He was unable to feed himself but was easily fed thickened fluids by nursing staff. He had documented an advance care plan (ACP) 5 years before his stroke. His ACP stated that in the event of impairment rendering him “incapable of rational existence” he would not want to be kept alive via artificial means but rather be allowed to die free of pain and distress. About 3 months before his stroke, he updated his ACP to include an advance care directive (ACD) stating what mattered most to him, as well as his worries for the future. His greatest concern was that he might “linger on in a home, with unacceptable quality of life”. He stated that “acceptable quality of life has at its core the ability to understand one's circumstances, to be able to communicate with other people, the ability to be mobile and not being reliant on others for the basics of life such as having to be washed, dressed and fed”. If he was not able to do these things, his wishes were that he be allowed to die as quickly and peacefully as possible. His ACD specifically stated that if he was “in advanced stages of Alzheimer's disease or other incurable, advanced dementing disease and if my appointed health care agent concludes after consultation with my primary health care provider that I am unable to make informed decisions about my health care, and I am unable to feed myself, continuing life would have no value for me”. In that situation, he directed that all life‐prolonging therapies should be withdrawn, including “the provision of nutrition and hydration whether provided artificially or medically or by hand or by assisted feeding”. The ACD was even more explicit about this as it included the directive that “if I am suffering from advanced dementia and appear willing to accept food and fluid by hand offered by assisted or hand feeding, my instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth”. When his lack of cognitive recovery was apparent, his wife, as his appointed medical treatment decision maker, was concerned that his wishes, as specified in the ACD, were not being honoured and queried whether he should continue to be fed by hand. Given the complexity of the situation, a palliative care consultation was sought, along with guidance from representatives of the hospital's clinical ethics committee, including the Chief Medical Officer, legal counsel and representatives from involved clinical teams. Ultimately, the decision was made in close consultation with his wife to respect his ACD. His anticoagulation was ceased and food and fluid discontinued. He died 4 days later, about one month after his stroke. Discussion Our patient had a very clear, and as it transpired, remarkably prophetic ACD. The question as to whether his desire to refuse oral intake was something his treating teams were legally and ethically obligated to follow is worthy of further consideration. The Medical Treatment Planning and Decisions Act 2016 (Vic) came into effect in Victoria in March 2018.1,2 The Act seeks to provide a single framework to ensure that medical treatments align with an individual's preferences in the event that they are unable to make decisions for themselves. The Act supports ACPs that can incorporate the creation of an ACD, as well as the appointment of a medical treatment decision maker to act as a surrogate decision maker should decision‐making capacity be lost. An ACD can contain: instructional directives, which, if a person lacks decision making capacity, take effect as if the person had consented to or refused a specific medical treatment; and/or values directives, which are broader and can encompass desires, worries and acceptable outcomes. Palliative care is defined in the Act to include medical treatments aimed to relieve suffering, as well as the reasonable provision of food and water, which is generally accepted to exclude artificial hydration or enteral feeding.3 To ensure that dying patients receive appropriate end‐of‐life care, the Act distinguishes palliative care from other medical treatments in two ways. First, it specifically prohibits making an instructional directive refusing palliative care. Any statement in an ACD relating to palliative care is given the status of a values directive, meaning the statement can guide but not mandate decisions. Second, the Act allows a clinician to provide palliative care even if this may not align with a patient's wishes and/or the medical treatment decision maker does not agree. Following his stroke, our patient was assessed to lack decision‐making capacity in relation to feeding. His apparent acceptance of supported feeding was therefore not considered an informed decision and thus his ACD and medical treatment decision maker provided the most appropriate guide to future health care management. When considering whether his treating teams were legally obligated to follow his directives in relation to refusal of oral intake, the following would seem pertinent. His wishes in relation to oral input were very specific and labelled as instructional. Although these statements were written in relation to deterioration in the setting of dementia, it would be difficult to argue that his wishes would not also apply in the context of his stroke with its resulting profound disability and dependence. Despite being designated instructional, the directives probably constituted a refusal of reasonable food and water and thus of palliative care. Under the Act, these can be values directives only, and while the team must take patient preferences into account, the directive would not be binding. Although the Act does therefore appear to allow the treating team to override an individual's wish not to be fed, the law provides little assistance regarding the circumstances in which this would be ethically permissible. Published guidance for clinicians faced with this specific situation is very limited. Although there is literature discussing the clinical and ethico‐legal issues associated with voluntarily stopping eating and drinking,4,5,6,7,8 this is typically in the context of someone whose decision‐making capacity was intact at the time of commencement. There is conflict in the literature regarding the ethics and legality of ACDs that request the cessation of handfeeding in progressive dementia.5,9,10,11 In our patient's case, although the directives were not legally binding, the health care team felt that the ACD, along with his wife's input, was the best guide to appropriate care provision, particularly when it became increasingly likely that he would not regain his previous cognitive abilities. Ultimately, regardless of the instructional or values‐based designation of his written instructions, there was uniform agreement that he could not have made his wishes any clearer, and accordingly this was respected. This case holds some important lessons for patients writing ACDs and for their health care providers. First, had our patient's directives been less detailed, or had he been admitted to an alternative health care setting with different ethical or religious values, support for his refusal of feeding may not have been regarded as acceptable practice. This might have led to mandated ongoing oral feeding, which may have led to significant conflict between the health service and our patient's wife, and considerable distress for all involved. Second, the case highlights the importance of adequate education for clinicians guiding, and the public completing, ACPs. Third, while the law provides some guidance to clinicians regarding the refusal of palliative care, including food and water, each case will require careful individual consideration and reflection on the different ethical issues at play. Finally, while every state and territory of Australia recognises ACDs in either legislation or case law, differences exist across jurisdictions in how they are recognised and interpreted. Importantly, although there is scope to give effect to an ACD created in another jurisdiction, had our patient's flight arrived in a different state than where he resided and completed his ACD, this would have added another layer of legal complexity given that Australia does not have a unifying legal framework for the application and interpretation of ACDs.12

Peter Eastman · Danielle Ko · Brian H Le

To the Editor: In their Perspective article, Mitchell and colleagues1 discuss the problems for patients resulting from overcautious attitudes in prescribing opioids within the constraints of the doctrine of double effect. In doing so, they also highlight how problems may be compounded by the inappropriate use of language in respect to voluntary assisted dying. Victoria has passed and is now implementing the Voluntary Assisted Dying Act 2017, not “assisted suicide” legislation. Like so much of the language we use, there are underlying, negative connotations to certain words. The use of the term “suicide” in the context of a person living with a terminal or serious and incurable condition that can only be relieved through death conflates two very different realities. One is the understandable or rational desire to avoid the trajectory of escalating suffering at the end of life, while the other is the tragedy of suicide resulting from social, financial or mental health conditions that culminate in feelings of abjection and of hopelessness towards the future. The focus of the authors of this article is both positive and welcome; assuring practitioners that they can adopt a proactive and patient‐centred approach towards pain relief. However, the use of language in this instance is unfortunate, as it has often been employed cynically to undermine the iterations of voluntary assisted dying Bills across Australia. Other common documented examples are referring to voluntary assisted dying as killing, murder, or state‐sanctioned murder — actions involving violence and malicious intent. Voluntary assisted dying is a managed and documented pathway embarked on by a person with decision making capacity to achieve a peaceful death on their own terms. Suicide, on the contrary, is a tragedy, usually undertaken alone as a violent and desperate act, including by people who have no legal recourse to voluntary assisted dying. It leaves a legacy of complicated grief for loved ones. Language is important. Without careful reflection, it can easily be used to subvert good intentions, including legal reforms. It can thereby thwart the will of the people — a perfect storm indeed.

Julia M Anaf

The medical and moral imperative that palliative care be integrated into standard responses to humanitarian crises can be fulfilled through basic training and an essential set of medicines, equipment, social supports and protocols

Eric L Krakauer · Bethany‐Rose Daubman · Tammam Aloudat

Should doctors fear legal sanction for using opioids at the end of life?

Geoffrey K Mitchell · Lindy Willmott · Ben P White · Donella Piper · David C Currow · Patsy M Yates

To the Editor: The Perspectives article by William1 states that medical assistance in dying may disrupt therapeutic relationships and will challenge beliefs. Concern is expressed about countertransference of feelings and attitude between doctors and patients. However, such concern must surely exist with or without the availability of assisted dying laws. What guides our practice is not just codes of medical ethics, professionalism and law, important as those are. It is also a natural and nurtured feeling of compassion and oneness with our patients. Doing no intentional harm (non‐maleficence) does not rule out, or cast doubt on, the application of voluntary assisted dying. Cutting short intolerable pain, suffering and indignity, as specifically requested by the patient, is not maleficence. The suggestion that people requesting medical assistance in dying challenge our beliefs about the meaning and value of who we are and what we do is not something that applies to all of us. Some physicians would feel that assisting a patient's firmly held wish to hasten death is among the most compassionate of acts that can be undertaken, and would experience it as such, along with the patient and family members. Changing the law to something that is better than currently exists does not present a dilemma. It does not contravene medical ethics. It has nothing to do with non‐maleficence or justice (except to introduce an element of justice to those individuals seeking such change). As for education, skills and insights, these can all be honed to a new and better balance in the future. With regards to death anxiety, it may be true that much can be achieved through human engagement, but it is also true that providing the means of assisted dying can itself significantly reduce anxiety and allow any remaining time to be better enjoyed.2 Finally, the suggestion that medical assistance in dying will have a negative influence on the development of teamwork is overly pessimistic. It fails to recognise the positive and complementary potential of assisted dying laws. Alleviation of suffering is surely a noble aim, attainable in a high proportion of cases.

Peter G Beahan

To the Editor: We commend William1 for his perceptive review of the complex issues involved in euthanasia and assisted suicide (EAS).1 In contrast to the euphemisms in the popular media, he confronts us with some uncomfortable realities: EAS is the intentional taking of a person's life (E) or facilitating suicide (AS); doctors considering EAS may be (unconsciously) demonstrating “countertransference of their helplessness onto the patient;” and relief of all suffering is a fantasy beyond the ability of doctors, politicians and lawyers. Similar concerns are expressed by seven Canadian physicians in a critique entitled “Euthanasia in Canada: a cautionary tale”.2 Contrary to the rosy predictions of its proponents, within 2 years, the Canadian experiment with EAS has left physicians aghast. “The introduction of euthanasia in Canada has caused doubt, conflict and crisis.”2 The passing of the Voluntary Assisted Dying Bill 2017 by the Victorian Parliament marked a seismic shift in medical practice, overturning 2500 years of medical ethics: the Hippocratic prohibition on killing patients. We note the increasing pressures, internal and external, on medical associations to declare neutrality on this issue. We believe that such a stance is a mistake. Equally, it is a lost opportunity to educate the public. As stated in a 2018 review, “doctors are not agents of the state and organized medicine cannot afford to be ‘neutral’ on a topic that touches medicine at its very core”.3 Furthermore, the Australian and New Zealand Society for Palliative Medicine4 and the Australian and New Zealand Society for Geriatric Medicine all have position statements that oppose EAS.5 As the peak physician organisation in Australasia, we urge the Royal Australasian College of Physicians to make an unambiguous statement to the general public, the medical profession and politicians that: EAS is not part of health care; EAS should not require involvement of doctors; and EAS creates irreconcilable conflicts with our responsibilities to our patients. If a medical association declares neutrality on this important issue, it squanders the precious role such associations have in providing guidance to the public and political sphere. That squandering comes at precisely the time this debate would be immeasurably enhanced by the expertise and wisdom of those members of the community most involved in the care of patients with serious illnesses.

Douglas T Bridge · Sinead M Donnelly · Frank P Brennan

Medical assistance in dying may disrupt therapeutic relationships and will challenge beliefs

Leeroy William

Indigenous people were three times as likely as non-Indigenous people to die in a residential dwelling

Eswaran Waran · Mohammad Y Zubair · Niamh O'Connor

Contemporary research suggests potential benefits of psychedelic drugs in treatment-resistant depression and terminally ill patients

Nigel Strauss

Advance care directives can enable Aboriginal people to fulfil their end-of-life wishes to die in their community

Eswaran Waran · Sharon Wallace · Jonathan Dodson-Jauncey

You stir, slowly at ?rst, then all at once

Michelle P Poon

The physician should focus on what can be done, not on what cannot

Ian Maddocks MD, FRACP, FAChPM

Despite a broad conceptual consensus, there is variability in how the concept is applied in clinical decision making

Ben White LLB(Hons), DPhil · Lindy Willmott LLB, LLM, PhD · Eliana Close BSc(Hons), BA(Hons) · Nicole Shepherd BSc, BSocSci(Hons) · Cindy Gallois PhD, MA, BSL · Malcolm H Parker MB BS, MHlthMedLaw, MD · Sarah Winch BA(Hons), PhD · Nicholas Graves PhD · Leonie K Callaway MB BS(Hons), FRACP, PhD

Lessons learned from the approach of three specialties to identifying their “top-five” low-value clinical practices

Jason Soon BEc(Hons), LLB · Rachelle Buchbinder MB BS(Hons), PhD, FRACP · Jacqui Close MD, FRCP, FRACP · Catherine Hill MD, MSc, FRACP · Simon Allan FRACP, FAChPM, FRCP · Caroline Turnour MIntPH, BA(Hons)

This wasn’t “end of life”; this was his life.

Kimberley D Ivory MB BS(Hons), MPH, DRANZCOG

Palliative care not only requires access to quality services but also physicians’ willingness to have difficult conversations with patients

Jennifer Philip PhD, FAChPM, MMed · Anna Collins MHealthPsych, BSci(Psych)

Death rules: how death shapes life on earth and what it means for us

Robin H Mortimer FRACP, FACP, FRCP

Recruiting more potential organ donors would not result in a large increase in organ donor numbers

Jonathan J Gatward MB ChB, FRCA, FCICM · Michael J O’Leary MD, FRCA, FCICM · Myra Sgorbini MN(Hon) · Paul R Phipps PhD, FRACP, FCICM

Limited use of aggressive treatment, but late referrals to palliative care and high numbers dying in acute hospitals after lengthy stays

Jennifer Philip PhD, FAChPM, MMed · Peter Hudson PhD, BN(Hons), DipAppSc · Adam Bostanci PhD, MPhil, MSc · Annette Street BEd(Hons), PhD · Dell E Horey PhD, MMedSc(ClinEpidemiol), BAppSc · Sanchia Aranda PhD, MN · Rachel Zordan PhD, BSc(Psych), BSc(Health) · Bruce D Rumbold PhD, MA, MSc · Gaye Moore PhD, MPD, BN(Hons) · Vijaya Sundararajan MD, MPH, FACP

Planning and community-based palliative care can make it possible for more people to die at home

Hal Swerissen BAppSc, BA(Hons), MAppPsych · Stephen J Duckett PhD, DSc, FASSA

A three-phase model designed to replace not-for-resuscitation orders

Robyn L Thomas MB BS, FRACGP, FRAChPM · Mohamed Y Zubair MB BS, FRACP · Barbara Hayes MB BS, FAChPM, PhD · Michael A Ashby MD, FRACP, FFPMANZCA

South Australians are more likely to settle their financial affairs than their health care and lifestyle advance directives

Sandra L Bradley BSc, BN, MSc · Richard J Woodman PhD · Jennifer J Tieman BSc(Hons), MBA, PhD · Paddy A Phillips MB BS, DPhil, FRACP

The benefits and harms of end-of-life care pathways remain poorly understood

Raymond J Chan RN, PhD, FACN · Joan Webster RN, RM, BA · Jane Phillips RN, PhD · David C Currow BMed, MPH, FRACP