Latest developments on assisted dying: ICEL conference, Halifax 2017

So the last few days has been interesting for me. As GoGently Australia launched their latest campaign to advocate for assisted dying legislation, I’ve been removed from the public response in Australia, while attending the ICEL conference in Halifax. It’s been a great chance to hear about recent developments in Canada, and reflect on the data and some of the ‘lived experiences’ of practitioners, family members and patients, which has emerged through recent research.

To summarise briefly, in February 2015 the Canadian Supreme Court ruled in Carter vs Canada that parts of the Criminal Code had to be modified, removing the parts that prohibited medical assistance in dying, in order to satisfy the Canadian Charter of Rights and Freedoms. In the months that followed, Federal legislation was passed and programs implemented across provinces in Canada. The Canadian scheme enables ‘medical assistance in dying‘ (MAiD). Patients who request MAiD are assessed by two independent, specially trained physicians. If they are judged to

  • have a grievous and irremediable medical condition;
  • be in an advanced state of irreversible decline, with natural death reasonably foreseeable;
  • experience unbearable physical or mental suffering that cannot be relieved under conditions the patient finds acceptable; and
  • have competence to understand the procedure and make a voluntary request (both at the time of request and the time of provision of MAiD);

then they can receive MAiD, including the option for physician assistance in administering the medication, or prescription of a self-administered drug. Individual provinces are now implementing programs to provide information about MAiD, and collect data in line with Federal guidelines. It has been great to see how research focused on the initial stages of this emerging practice has already been undertaken, including focusing on the experiences of patients, family members and practitioners.

The principles of voluntariness, regulation and safeguarding have been well-rehearsed in previous debates about the legislation of assisted dying. However this conference made it clear to me that there would be a number of additional aspects of successful policy and implementation of a legislated process for assisted dying in Australia.

  1. Close integration with other options available for people at end of life – Many presenters reflected the view that assisted dying is only a real choice when offered in the context of all other forms of best available care, which include palliative and rehabilitative approaches, but go beyond ‘health’ to also include housing, social and spiritual services. Canadian palliative care physician James Downar and Belgian researcher Kenneth Chambaere argued for involvement of palliative care professionals in assisting patients in their consideration of options, and in the assessment of MAiD requests, mirroring what has emerged in Belgian palliative care services.
  2. Consideration of accessibility for patients who may be otherwise constrained – for example due to remoteness, patients with physical impairments who cannot self-administer medication, or those receiving care in institutions whose policies prohibit practitioners from offering MAiD.
  3. High-quality research of both process and outcomes – through longitudinal observational studies and qualitative studies of patient, family and practitioner experiences. The retrospective ‘death certificate’ method adopted in Belgium and the Netherlands has had success with a series of rigorous methods to ensure physician and patient anonymity, and now achieves detailed physician reporting of over 70% of deaths, in addition to data on assisted deaths, collected by review boards. The researchers advocated for the critical importance of anonymously monitoring all end of life practices (e.g. withdrawal and withholding of treatments, palliative symptom management, continuous palliative sedation and cases of involuntary hastening of death) not just cases in which MAiD was requested or enacted.
  4. Communities of practice and guidelines for clinicians – relating to provision of clear, unbiased information, responding to questions and requests (including referral pathways), assessment of requests, administration protocols and reporting
  5. Care for the practitioners who choose to provide such a service – including consideration of workforce issues, reimbursement, clinician self-care. While conscientious objection is an important part of the framework, the appropriateness of entire institutions enforcing ‘anti-MAiD’ policies on practitioners was questioned. Of the data presented from family members of patients who received MAiD, some of the most difficult related to those who had to negotiate transfers to a provider institution in the context of uncontrolled symptoms.

I find a lot to like about the Canadian approach in general. Without getting overly liberal in the comparisons, when you see buses with bike racks, free concerts and exercise classes in public libraries and disability access literally everywhere, you get the sense that the folks here are moving things forward in terms of inclusiveness and community participation. I was moved by the stories of family members who have been through the MAiD process, and the experiences of patients captured in research studies. I was inspired by the ethical reasoning of the clinicians who have chosen to become MAiD providers, and their commitment to sharing their experiences and develop a safe and high quality service. Of course these reflections are purely my opinions, in relation to what will continue to be a divisive issue. But I found the ICEL conference an opportunity to better understand the data and reflect on my own views about this practice. With Victoria currently considering a draft Bill on assisted dying, it couldn’t have come at a better time. Let us know what you think.

@craigbsinclair

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