Good evening. Greetings from Newfoundland and Labrador.
I have practised palliative care for 30 years and have had the privilege of caring for thousands of patients and families. I provide secondary assessments for MAID and have had a close relative utilize MAID. My words today will reflect my personal thoughts on the subject rather than support any organization.
I feel that MAID is an end-of-life option that can be part of palliative care but is not exclusive to it. Many of us who practise palliative care are involved, to some degree, in the provision of MAID, whether it is to fully inform our patients of all their options, including MAID, to discuss this option in depth with our patients, to be the second assessor, or to be the primary provider. There will always be a divide among clinicians on this subject, but, regardless of a clinician's personal feelings, the patient has a right to know about this procedure, what the criteria are and how to obtain it.
From a practical point of view, here are my thoughts about MAID and advance directives.
My first concern is about palliative care. Not everyone has access to palliative care. Provincial and local issues dictate whether anyone with skills in this field of medicine is available. Virtual care has limitations and cannot fully compensate for this lack. Some patients could benefit from our services but are limited in access because their physician refuses to refer, because their local program has limitations regarding who can have services and for how long, or because there may not be anyone available to provide in-home care. There may be no paramedics trained to provide palliative care at home. In my jurisdiction, having this service very significantly reduces the number of admissions to institutions. Good symptom management and support at end of life, whether it be in the last years, months, days or hours, is a human right. We're failing the Canadian people when postal codes determine access.
My other concern is that MAID is not routinely offered as an option. Ideally, all choices for patients should be outlined early in order to give patients ample time to consider which options work for them and which do not. Not informing a patient that MAID is an option is unfair to the patient and doesn't follow the guidelines for informed consent. For example, would we consider that a patient newly diagnosed with cancer be offered surgery, radiation and symptom management only, if chemotherapy were also possible? Would we say to ourselves, “We don’t offer chemotherapy unless the patient specifically asks about it”? Of course not, yet this happens over and over with MAID, because there is a perspective among some clinicians that they cannot raise the topic and that to mention it encourages or solicits a patient. Patients require time to consider their options: “What's in keeping with my personal philosophy? What can I afford? What can I obtain? What do my culture, religion and personal values tell me is right?”
We know that some populations in this country have less access to MAID than others. We must continue to be mindful about this and work hard to ensure that all Canadians have the opportunity to avail themselves of all of the end-of-life choices that suit them. Patients should be able to obtain MAID wherever they live.
However, there are still institutions and organizations that deny MAID on their premises. My own relative couldn't go to her local hospice, because she wasn't allowed to have MAID there.
MAID providers should have adequate training and support. This should be standardized across the country. Many providers find they need adequate breaks or supports when involved in this type of care. We need to ensure there are enough clinicians who thoroughly understand what they're doing and how to do it. There has to continue to be clear oversight, data collection and frequent evaluation.
People should be able to determine whether they want MAID at a future date, should they become incapacitated. Many of my patients have told me over the years that the one thing they fear the most, beyond pain, shortness of breath or anything else, is the loss of the ability to make their own decisions. This creates tremendous human suffering.
MAID has been a positive addition to the list of possible ways for me to care for my patients. It's a gift to those who want the option of control: There's always an escape route if things get too bad. Sadly, many patients are very unaware that this option exists. They can't create a tool to ensure they get MAID when they want it.
The MAID deaths I’ve witnessed have been the easiest and most peaceful of my career. While most of my patients do not end up utilizing this option, more increasingly do.