Good evening. Thank you for the opportunity to speak on palliative care as it relates to the statutory review of Canada's current medical assistance in dying legislation.
I am speaking to you today as a settler on the traditional territories of the Haudenosaunee Confederacy and the Anishinabek Nation. I am grateful to be able to live, learn and play on these lands.
My name is Dr. Leonie Herx. I'm a specialist palliative care physician; head of palliative medicine at Queen's University; medical director of palliative care at Kingston Health Sciences Centre and Providence Care Hospital; the immediate past president of the Canadian Society of Palliative Care Physicians, where I have been a peer-elected member of the board of directors for the past nine years; and the chair of the Royal College specialty committee in palliative medicine.
Palliative care is a holistic approach to care that focuses on enhancing the quality of life for persons living with life-threatening illnesses and their families by means of early identification and impeccable assessment and treatment of symptoms, including physical, psychosocial and spiritual concerns. It supports a person in living well until they die. It is medical assistance in living, or MAIL, if you will. Palliative care does not hasten death and is internationally recognized as a practice that is distinct from MAID philosophically, clinically and legally.
Only about 30% to 50% of Canadians who need it have access to some kind of palliative care of unknown quality, and very few, only about 15%, have access to specialist palliative care to address more complex issues. You are less likely to receive palliative care if you are poor, indigenous, homeless, incarcerated or living in a rural area.
Studies from around the world have shown that early integration of palliative care improves quality of life, reduces anxiety and depression, reduces caregiver distress and may even help people live longer. An integrated palliative approach to care should be provided as part of the management of all serious illness, starting soon after diagnosis. However, due to the ongoing stigmatization and misunderstanding of palliative care as end-of-life care, we are often only involved much later.
When patients' palliative care needs are not met, the ensuing physical, emotional and spiritual suffering can lead them to feeling depressed, hopeless and a burden to others, which are many of the factors driving requests for MAID. Earlier palliative care can alleviate suffering before it becomes irremediable. Failure to do so, as asserted by Dr. Romayne Gallagher and colleagues, should be seen as medical error.
MAID was established for exceptional circumstances, not as a routine procedure for ending life as a solution to suffering that could be addressed through health and social supports that help people live a dignified life. Since Bill C-7, we now see countless cases in the media, and in our own medical practices, of people requesting and receiving MAID due to a lack of basic supports needed for living, including a lack of palliative care, home care and disability care.
Health Canada's annual report on MAID shows that a significant number of people receiving MAID, 15%, had no palliative care at all, or that palliative care came much too late, with 18% receiving it within two weeks of receiving MAID and 19% within four weeks of the request. Another 3% are unknown. At least 35% of those receiving MAID had little to no palliative care. This is consistent with a Canadian study by Munro in 2020, which showed that 40% of patients had no palliative care prior to requesting MAID. This should be seen as a failure of our health care system. With removal of the 10-day waiting period under Bill C-7, these numbers are likely to increase further, because the impetus to call palliative care is not there.
In Carter v. Canada, the Supreme Court of Canada discussed what possible impacts implementing a law for assisted death prior to securing universal access to palliative care might have on the development of a strong palliative care system. With almost six years of lived experience now, we have seen significant deleterious effects of the impact of MAID implementation on palliative care practice, including diminished resources and increasing distress experienced by palliative care clinicians. I will provide some examples.
Some health authorities incorporated MAID into palliative and end-of-life care program roles. This has led to palliative nurses leaving their jobs because they felt unable to provide palliative care. In Ontario, some hospice palliative care nurse practitioners are using their paid full-time palliative care roles to provide MAID.
Palliative care clinicians are having to spend a significant amount of time on administrative issues related to MAID, which takes away from time to provide palliative care.
There is decreased access to specialized palliative care beds when health authorities require hospices and palliative care units to admit patients for the sole purposes of administering MAID.
We see increasing moral distress in palliative care clinicians from forced participation in MAID, due to some health authorities mandating that hospices and palliative care units provide MAID or lose their funding. This is resulting in retention difficulties and early retirements from palliative care, which is accentuating and accelerating the already critical shortage of specialist and generalist palliative care physicians.
We also see patients who are unwilling to access palliative care because they associate it with MAID and are afraid that palliative care will hasten their death or that MAID will be provided without their consent.
Patients are accessing MAID due to a lack of palliative care provision. Patients are requesting MAID because a trusted physician suggested it to them—