In their summary and critique, Gamble, Gamble, and Pruski mischaracterise both the central arguments and the primary objectives of our original paper. Our paper does not provide an ethical justification for paediatric Medical Assistance in Dying (MAID) by comparing it with other end of life care options. In fact, it does not offer arguments about the permissibility of MAID for capable young people at all. Instead, our paper focuses on the ethical questions that emerged as we worked to develop a policy for responding to MAID requests at our tertiary paediatric institution. Following the Supreme Court of Canada’s recent decriminalisation of MAID, our hospital needed to answer immediate on-the-ground questions such as: ‘What are we going to do if an 18-year-old patient in our care requested MAID today, as is now their legal right? How should we protect their privacy? What is the best way to ensure patients are informed when making these decisions?’ On these important questions, Gamble, Gamble, and Pruskiare silent.
- informed consent
- policy development
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We thank Gamble, Gamble, and Pruski for this engagement with our recent paper on Medical Assistance in Dying (MAID). One of the goals of our original paper was to stimulate wider discussion about the rich ethical questions that we encountered as we worked with colleagues to develop a policy for responding to MAID requests from 18-year-old patients at our tertiary paediatric institution. We appreciate the opportunity to re-emphasise the central arguments of our original paper, which we feel are mischaracterised in Gamble, Gamble, and Pruski’s summary and critique.
Gamble, Gamble, and Pruski summarise our central argument as follows:
Their key assertion is that MAID is ethically equivalent to palliative sedation and withdrawal of care (WOC). In their view, all three involve actions that cause the patient to die sooner than if no such action were taken. Therefore, as all three come to the same end, death, they are ethically equivalent; and if sedation and WOC are ethically justified for children, so should be MAID (p4).1
In our view, this summary mischaracterises both the central arguments and the primary objectives of the original paper. Our paper does not attempt to provide an ethical justification for paediatric MAID by comparing it with other end of life care options. In fact, we do not offer arguments about the permissibility or impermissibility of MAID at all.
Instead, our original paper focuses on the ethical issues that emerged as we attempted to grapple with the Supreme Court of Canada’s recent decision to decriminalise MAID across the country. We needed to answer immediate on-the-ground questions such as: ‘What are we going to do if an 18-year-old patient in our care requested MAID today, as is now their legal right? How should we protect their privacy? What is the best way to ensure patients are informed when making these decisions?’ We found that existing scholarship, guides to practice and legislation all pointed in different directions or remained silent on these crucial questions.
In the course of this work, we came to believe that our problem stemmed from theoretical confusion about the nature of MAID. Some guides to practice seemed to conceptualise MAID as distinct from all other forms of medical practice, thus requiring new frameworks for navigating informed consent and privacy. Other guides theorised MAID as similar to accepted medical practices which result in the end of life (such as palliative sedation or the withdrawal of life-sustaining medical interventions) and suggested that the same best practices concerning patient privacy and informed consent used in these situations could be usefully extended to MAID.
Our original paper does not, as Gamble, Gamble, and Pruski suggest, side definitively with either of these positions. In fact, when the draft policy is introduced on page 5 of the original paper, it is under the subtitle ‘our policy and the search for middle ground’.2 As this suggests, the draft policy attempts to offer a way forward between these diametric positions. Our aim was to create a policy that would protect and respect patient rights, in the midst of a rapidly changing legal and clinical landscape.
To summarise, then, our original paper does not offer arguments for the ethical defensibility of paediatric MAID, nor does it argue that there are no differences between MAID, palliative sedation and the withdrawal of life-sustaining medical interventions. Instead, it asks what the nature of these differences might be and whether these differences are sufficient to justify the creation of new procedures for protecting patient privacy and facilitating informed consent.
Arguments concerning caregiver intentions
Contrary to Gamble, Gamble, and Pruski’s’s summary, our original paper does not ‘claim that intentions don’t matter’ (p5)1 nor does it ‘renounce intention’(p5).1 Instead, our paper argues that existing policy statements which distinguish MAID from practices like palliative sedation on the grounds of caregiver intentions usually do not provide an explicit theorisation of why and how the intentions of healthcare providers might justify the different treatment of patients at the level of practice.i
Gamble, Gamble, and Pruski suggest two hypothetical analogies for our consideration. The first concerns a tragic accident—a nurse misreads an order and administers a lethal dose of medication. The second involves a terrible unanticipated outcome—a patient presenting with strep throat is prescribed penicillin, has an unexpected anaphylactic reaction and dies.
These thought experiments are not analogous to the situations considered by the original paper, nor are they within the scope of the draft policy. We are not discussing tragic accidents and unexpected outcomes. Instead, we are comparing MAID with other circumstances in which a capable patient requests a medical intervention and death is the most likely foreseeable outcome of that intervention. We are talking about the expected outcomes of standard practices.
In our original paper, we note that many of the arguments distinguishing MAID from all other forms of medical care focus ethical attention primarily on the person providing care, rather than on the person requesting it. In attempting to consider what is ethically at stake for patients, we argued there may be good reasons to consider MAID and other medical procedures following which death is the likely foreseeable outcome ‘as ethically equivalent from the patient’s perspective’ (p3).2 In the context of our paper, this means that, for patients, it is important that the same rights (to informed consent) and protections (of privacy) that they enjoy in all other medical decision-making should also apply to their decision to seek MAID.
On reading the Gamble, Gamble, and Pruski’s review, however, we suggest that perhaps our original use of the term ‘equivalent’ may be misleading. Our arguments comparing MAID and palliative sedation are not about whether you can meaningfully distinguish one practice from the other or coherently accept one while refusing the other. We focus instead on whether these practices ought to require a different set of institutional policies when it comes to informed consent and the protection of patient confidentiality. We are asking: can we use the same institutional infrastructure for facilitating informed consent and protecting patient rights in MAID as we do in these other forms of end-of-life care? This is a sincere question on which we welcome the corresponding author’s (or other’s) response. How do the arguments Gamble, Gamble, and Pruski offer about the importance of intention bear on our central objectives? On the basis of these arguments should we create a totally different infrastructure for managing informed consent and patient confidentiality in MAID cases? Again, we find that the academic literature falls silent on the key questions our working group is attempting to answer.
Notes on language
We conclude with a few smaller points of clarification. First, we do not use the term ‘withdrawal of care’ in our original paper or in general. Particular medical interventions may be withdrawn or discontinued, but ‘care’ is a constant in the journey of all patients at our hospital—especially for those patients nearing the end of life. Instead, we refer more precisely to the withdrawal of life-sustaining medical interventions.
Second, we would like to thank Gamble, Gamble, and Pruski for bringing our attention to the inappropriateness of suggesting that MAID ‘ameliorates’ suffering. We agree that MAID may end suffering, but it does not improve it. However, Gamble, Gamble, and Pruski’s’s question ‘Do the authors mean that the child is better off dead?’ (p9) is, frankly, inappropriate to the work at hand and does not seriously engage the situation in which we find ourselves.1 We are talking about patients who are 18 years old and are suffering unendurably from a grievous and irremediable medical condition. MAID is only ever considered in situations in which suffering has become unbearable, where the prospect of improvement is non-existent, and where death is reasonably foreseeable. For those who qualify, MAID is a way out of these conditions. We are trying, in this paper, to begin a conversation about how best to respect patient rights in these deeply sad and serious situations. On these matters, productive engagement is welcome.
The authors would like to acknowledge the interdisciplinary MAID working group (comprising health care professionals in palliative care, bioethics, pharmacy, nursing, intensive medicine, risk management, critical care, psychology and rehabilitation) that advised and oversaw the policy creation process.
↵ i For example, see the 2017 International Association for Hospice and Palliative Care Position Statement: ‘Euthanasia and Physician Assisted Suicide’3 or the Canadian Medical Association’s 2014 Policy: ‘Euthanasia and Assisted Death’4
Contributors RZS, Director of the Department of Bioethics, and AR, Medical Director of Palliative Care/Paediatric Advanced Care Team, were asked to assemble and co-chair an interdisciplinary working group that would develop a policy for responding to requests for MAID at The Hospital for Sick Children in Toronto,Ontario. They invited CD, then a PhD Candidate at the University of Toronto’s Joint Centre for Bioethics, to participate in the working group and to draft the hospital’s policy. This work resulted in our 2018 paper. CD: drafted the present manuscript as a commentary response. RZS and AR: revised critically for important intellectual content. All authors provided substantial contributions to the conception of the article; provided final approval of the version being published and agreed to be accountable for all aspects of the work.
Funding Funding was provided for this project by The Hospital for Sick Children.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
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