Expanded rights to medical assistance in dying are pointless without better support for MAID providers
Widening legal access to MAID could reduce the number of health care professionals willing to provide it
This column is an opinion by Dr. Andrea Frolic, Dr. William Harper and Dr. Marianne Dees. Dr. Frolic is director of the Office of Ethics and the Medical Assistance in Dying Program at Hamilton Health Sciences. Dr. Harper is an endocrinologist at Hamilton Health Sciences, and an associate professor of medicine at McMaster University. Dr. Dees is a family physician and euthanasia provider, educator and researcher in the Netherlands, and a faculty member at the Radboud University in Nijmegen. For more information about CBC's Opinion section, please see the FAQ.
Is expanding the legal right to medical assistance in dying (MAID) worth anything if there are too few physicians and nurse practitioners willing and able to provide it?
The federal government recently held public consultations on MAID, gathering opinions to inform its response to a Quebec court ruling that found the "reasonable foreseeability of natural death" criterion in the federal Criminal Code to be unconstitutional.
However, opening access to MAID for a wider range of patients could have the unintended consequence of diminishing the number of health care professionals who are willing to provide the service, thus worsening access overall.
Removing the foreseeable natural death criterion would represent a radical change for MAID providers.
More than 8,000 people across Canada have received medical assistance in dying since 2016, and most had end-stage cancer, or neurological or cardio-vascular illnesses. According to a recent study of MAID in Ontario, 90 per cent were expected to die a natural death within six months.
This means medical assistance in dying did not alter the course of their lives; it shortened their inevitable dying process. Many providers find solace and meaning in helping to end the unbearable suffering of patients nearing the end of their natural lives.
However, when the federal government changes the law, it may allow patients with other diagnoses to request MAID, including those suffering with illnesses that don't necessarily have a clear trajectory towards death, such as chronic pain or psychiatric conditions.
Such illnesses are often cyclical — sometimes their physical and psychological effects become terrible, sometimes better. And likewise, with time and new therapies, some may see their situation improve.
Offering MAID to people in these circumstances could shorten their lives by decades and eliminate any possibility of a better future — or release them from years of agony. Determining whether such patients are eligible and working with them to decide whether MAID is the best option will impose a heavy moral, psychological and emotional burden on MAID providers.
Access to medical assistance in dying cannot be facilitated by legislation alone, it requires willing and capable providers, and many regions across Canada already face shortages. Access to MAID is already challenging for patients with diagnoses other than cancer. According to reports on MAID statistics provided by the Office of the Chief Coroner of Ontario, MAID deaths increased 71 per cent in the past year, but the pool of providers only increased by 25 per cent.
Some providers are already stepping away from this work after a few years due to exhaustion and burnout, compounded by the unrelenting demand for the other health care services they provide. Faced with the stress of navigating more complex cases, it is likely that more may stop offering MAID services altogether.
We can learn a lot from the experience of The Netherlands, as we've tried to do at Hamilton Health Sciences in designing a sustainable, high-quality MAID program that accounts for both the needs of patients and providers.
Dutch providers receive standardized education in MAID in medical school, ongoing mentoring, peer support and retrospective case review. These supports mitigate the risks of harm to both patients and providers, and enable continuous learning and patient-centred care.
The Dutch legal system allows for MAID without a foreseeable death. But according to a recent national report, over 90 per cent of Dutch people with psychiatric disorders who request MAID outside the context of a terminal illness change their minds and decide they want to live.
In The Netherlands, these patients are closely followed by their family physicians and have access to psychiatric and palliative care. Physicians often take months to explore the patient's motivation for MAID to determine whether there are other ways to alleviate their suffering.
In Canada, the situation is different.
Rarely is MAID provided by the patient's regular treating physician; usually the provider is a stranger. Most providers have other full-time jobs. Many work in isolation, without meaningful mentorship or peer support, according to the Listserv shared by MAID providers across Canada. And providers face potentially harsh sanctions, such as jail time, for errors in the administrative and assessment processes.
Whatever changes in the Canadian law are implemented, it is time to stop treating patients' "right" to MAID as a legal abstraction.
This right relies on the goodwill, courage and skill of physicians and nurse practitioners who voluntarily take on the legal, moral and psychological risks and burdens of this practice to alleviate unbearable suffering and support patient choice. The only way to enhance access to MAID as the law evolves is by enhancing supports for these providers.
Adapting the Dutch experience to the Canadian context, such supports for MAID providers should include:
- Standardized training
- Best practice guidelines
- Ongoing mentorship and peer support
- Scientific evaluation of cases
- Care-coordination services to reduce the administrative burden for providers and support timely access for patients
- Enhanced access to medical specialists, especially psychiatry and palliative care, willing to consult and explore options with patients requesting medical assistance in dying
While rewriting the law, government and professional regulatory bodies must also recognize that developing safe and sustainable working conditions for MAID providers is the key to enhancing access for patients.