The Victorian Voluntary Assisted Dying Act comes into operation

Once the storm passed, there was an uneasy calm. The tumult that enveloped Victoria in the euthanasia/physician-assisted suicide (E/PAS) debate culminated in the passage of the Voluntary Assisted Dying Act 2017 (Vic) (hereafter ‘the Act’).1 The Act permits, for the first time in an Australian state, in certain circumstances, both euthanasia and PAS. It comes into operation in June 2019. From the very public domain of the parliament and the press, the human drama now moves into an intensely private space: the encounter of a patient with a doctor. Founding that encounter is the law. Experiencing that encounter are the individuals themselves. The Act contains several elements. The eligibility criteria of the person seeking voluntary assisted dying (VAD) are presented in Table 1. The process from the time of request is presented in Table 2. The objective of this editorial is to examine the Act and the changed terrain of medicine, law and ethics in Victoria. 5. Is diagnosed with a disease, illness or medical condition that: Law aims for precision. Medicine, on the other hand, operates in a landscape of uncertainty. So, when the two disciplines meet to focus on issues vital to E/PAS legislation, there may be problems. Those issues include the pronostication of illness, decision-making capacity, screening for depression, the possibility of undue influence and the use of life-ending medications (with likely inter-individual varibility in effect). As physicians, we know we cannot be certain about these issues. The laws strain to achieve certainty in language and effect. The law seeks, but medicine cannot provide, such certainty, and yet, with E/PAS, both disciplines must be highly conscious of the irreversible consequences for not getting things right. There is, therefore, an inherent tension at the centre of any E/PAS law. For law is entering the domain of not only medical uncertainty but also the mystery of the human psyche and interpersonal relationships. Uncertainty and mystery are not solid foundations for any legal statute. All E/PAS laws face a series of identical challenges. Those challenges are significant and, arguably, insuperable. Challenges include the criteria of eligibility; prognostication; the assessment of capacity; ensuring the person is not acting under undue influence; the role of doctors, nurses and pharmacists in the process; the role, if any, of palliative medicine and psychiatry and the structure of the process leading up to the final act. Flowing from that are the medical questions that pour out upon this landscape to make this exquisitely vexed area even more problematic for doctors. What lethal medications are used and in what doses? What level of training in counselling, communicating and the use of these medicines should occur? What happens if there is a complication? How prepared is any doctor to commit an act, however legal, that has hitherto been completely contrary to both the law and professional ethics? Ultimately, what will be the experience of the patients, families, doctors, nurses and pharmacists involved in this process? Away from the glare of the public debate, their encounter will be intimate and intense. No law, no public campaign, no training can ever truly prepare the participants. Each of these challenges is substantial. Each of these questions represents the sheer complexity of a legally prescribed process that now sits in a domain that is already challenging and mysterious – the profoundly human experience of becoming seriously ill, balancing hope and realism, enduring and hopefully overcoming symptoms, facing one’s own mortality, gazing with penetrating eyes at the meaning of your life, comforting and being comforted. No law can use this language, and yet, that is the reality of our work as physicians. Discussion, negotiation, compromise, and there lies the rub. Law grapples earnestly with this area and seeks to marshal multiple safeguards in the process leading to E/PAS. But by having, as its destination, the planned, premature death of a person, the law ventures into an uncertain medical terrain, the vagaries of human nature and the extraordinarily complex nature of interpersonal relationships. No law can perfectly capture this reality. Of minds made up and then changed. Of the ebb and flow of the human spirit, despairing now, content a day later. Of a selfless impulse, in some, to ease the burden on one’s family. Of a lifetime habit, in others, of acquiescing to the suggestion, even unspoken, of a dominant relative. In addition to this struggle, the legalisation of E/PAS does another thing that is striking in both intent and effect. By such statutes, the law crowns autonomy king. Every E/PAS law starts and finishes with the express wish of the eligible person. Every physician knows that we cannot give everything a patient wants or insists on. We know that autonomy, however revered, is one of several guiding principles, and while we listen to patients, our responsibility is always to weigh carefully the benefits and burdens of treatment. So if in this one area of medicine, autonomy trumps all else, where that supremacy is legally sanctioned over and above other principles or approaches, then there is a problem for law, medicine and ethics. These are solipsistic times. By the present law, the ‘we’ in all of us is subsumed by the ‘I’ in some of us. The ‘I’ is placed pedestal-high, such that it purports to oversee death itself, and the dangers inherent in that coronation are ignored or set aside. Two vital criteria of eligibility are capacity and voluntariness. These criteria are examined by Pesiah and colleagues in an article published in this issue of the Internal Medicine Journal.2 The authors correctly identify the challenges in such assessment in the context of serious illness. Even when the person is referred to a psychiatrist, that discipline itself concedes that, while ‘the expectation that the assessments (of capacity) will be definitive… in reality, they are a process, complex in nature, and inherently uncertain’.3 The law provides further relevant examples. In Re T and Re MB, the courts found that pain, fear and fatigue could be so severe that they could disturb the ability of a patient to reason.4, 5 In this context, the Act contains a conundrum. One of the eligibility criteria is that the disease, illness or medical condition ‘is causing suffering to the person that cannot be relieved in a manner that the person considers tolerable’.6 It is quite possible that such a level of suffering as described equally disturbs the ability of the person to think rationally. Under the Act, neither a referral to, nor assessment by, palliative medicine is mandatory. The Act states that the doctor must inform ‘the person about…palliative care options available to the person and the likely outcomes of that care’.7 The law assumes that a reasonable body of knowledge about this discipline is universal in medicine. In reality, the doctor mandated to give this information may have little or no knowledge of palliative care or its outcomes. At this juncture, clinicians, patients and families may be adrift on a sea of myth. The patient, therefore, may make a decision to pursue the process without being fully informed. Logically, this leads to a basic question: how can one make a decision as fatally serious as this one without being fully informed about the very discipline of medicine that is dedicated to the management of life-limiting illnesses? Simply stating the existence of the discipline does not explain it. It is ironic that a campaign that trumpeted autonomy and the power of choice may lead to a situation where a person is insufficiently informed in their decision-making. Information is one thing. Experience is another. In the Act, one of the criteria of eligibility is the subjective intolerability of suffering.6 In reality, this is often the point where palliative care enters the scene now. It does so to bring a powerful and forensic approach to these issues and their management, being attentive to, and understanding of, the rhythms of both the disease and the human spirit. Instead, under the Act, the eligible person embarks on an altogether different journey. Process dominates; seeing a palliative care physician is optional. The patient decides on the point when things are intolerable, but that decision may never have been informed by the actual experience of receiving palliative care. The Act places into the patient’s hands the ability to commence a process that may lead them to a premature death where that patient has not engaged with medical experts who could deal with, assuage or comfort the reasons they sought this process in the first place. Now that E/PAS is legalised in Victoria, it will come down to the other central pillar of medical practice – the professional conscience of the individual doctor. Of course, it extends further to nurses and pharmacists who will inevitably be involved. Doctors should feel they can exercise that conscience unencumbered. While the Act contains a specific reference to conscientious objection,8 subtle pressures can occur. Doctors should never feel pressured into actions for which they are ambivalent. They should never feel obliged to act when a patient is insistent. No doctor should ever be critical of another doctor or discipline of medicine for failing to be involved. Their conscientious objection is legally sanctioned. If pressure is ever placed on a physician to participate (‘but it’s the law now’), a physician has every right to reply ‘yes, it is the law…but the law can never override my professional conscience’. While we believe that directly ending life is a boundary we cannot cross, we also know we cannot abandon our patient at what would clearly be a time of need. Can the doctor–patient relationship survive when not electing to participate?9 The Act refers to a ‘VAD substance’.10 These are the lethal medications. For Victoria, this moves medicine and pharmacy into completely uncharted waters. Multiple questions are raised. What class of medications is used? In what combination and in what doses? What antiemetic cover is provided? What is the medical and lay response if the person wakes during the act, vomits, has an aspiration pneumonia or seizure? To what extent are variations in individual pharmacokinetics and pharmacodynamics been considered? Other considerations are the underlying tolerance of patients who have been already exposed to opioids and benzodiazapines, the changes associated with hepatic and renal failure and the different rates of absorption of orally ingested medicines. Finally, what level of training will the participating doctors receive in the pharmacology and complications of these medicines? The Act is unclear on this. The Act states that the participating doctors must complete ‘approved assessment training’.11 The training course is online and is 6–8 h in duration. The content of that training is the procedural steps leading to VAD and their responsibilities under the Act. In this course, there is no training in the nature and approach of palliative medicine, communication skills or the pharmacology of the lethal medications to be used. Theoretically, therefore, a doctor with little knowledge or expertise in end-of-life care, little understanding of the breadth and depth of palliative medicine and no experience in the use of lethal medications could legitimately prescribe or, in certain circumstances, administer such medications. Families may respond to this process in multiple different ways. They may accept the decision. They may even welcome it. Equally, they may have profound misgivings. Families may be shocked. This is especially so as the Act allows the person to withhold information about the process from their family.12 Platitudes said to them later, soaked in the ethos of self-determination, ‘But that is what he wanted’ may be answered bitterly ‘Yes, but what about his family? Was any consideration given to us?’ Grief, already complex, becomes more complicated. The emotional well-being of families may be sacrificed at the altar of individual autonomy. The Act requires the Registrar of Births, Deaths and Marriages to register the cause of death as the underlying disease, illness or condition and that the manner of death is VAD.13 In the Act, therefore, the ‘cause’ and ‘manner’ of death are decoupled in a way not seen in conventional death certificates. Why is the cause of death not VAD? The statutory formula for ‘cause’ follows the recommendation made by the Ministerial Advisory Panel in its report to the Minister of Health.14 The Panel gave several reasons for this, including privacy, risks of discrimination and the potential effect on insurance payments.14 The difficulty with this separation of ‘cause’ and ‘manner’ is that causation is defined in both law and plain English. In criminal law, causation is a matter of fact that ‘is to be resolved as a matter of common sense’.15 In plain English, ‘a cause is that which gives rise to any action, phenomenon or condition’.16 On any reading of those definitions, the cause of death in VAD is VAD itself. Clarity of language is crucial in this domain. The presence of the underlying disease is a requirement for eligibility but not the cause of death. Ultimately, it will be doctors who write the scripts and inject the medications. The distortion of the word ‘cause’ places a strain on both law and medicine. On law, in its rigour of approach to the meaning of words; on medicine, because doctors, practical by nature, will know that VAD is the reason the person died. We may never know the emotions of those health professionals involved in this process, the misgivings and moral distress they may experience. For however brilliant the law that is crafted, no law can ever know the heart of a person. A thousand legislative safeguards will never ensure their emotional peace. There is a further risk to medicine itself. A real risk, in the intermediate to longer term, is that there will be a cohort of participating doctors who are so convinced that they are doing a humane act that they do not see an alternative. Indeed, that they see E/PAS as the solution to suffering. Gradually, that sentiment may grow. A blindness may develop to the role and capacity of palliative medicine that sits and engages with that suffering in an increasingly sophisticated way.17 For that perception to be accepted by medical students and junior doctors would be deeply troubling. In conclusion, like all attempts to enact E/PAS laws, the Victorian parliament wrestled with the complexity of eligibility, assessment and process. They were fated to do so. No law, and perhaps especially no law on this topic, can hope to encompass the limitless terrain of the human person and their world in times of serious illness and the medical uncertainties that accompany this. Physicians struggle daily to deal with this. The law is no exception.