It is one thing to talk in the abstract about the possibility that one’s mother will have a medically assisted death. It is quite another to be at the other end of the phone when she says she’s going to pursue it, as I was this past February.
Like many people in their 80s, my Mom had an accumulation of health troubles: her blood pressure was high, her thyroid count was low, her heartbeat was irregular, her blood was awash with the wrong kinds of cells. She was afraid to go out in the winter for fear she might fall; she was afraid to go out in the summer because her leukemia drugs made her skin especially vulnerable to the sun. In November, she’d had part of her thumb amputated to deal with a rare melanoma. In December, she injured her wrist in the high-risk enterprise of chair yoga and she’d had to adjust, again, to the diminishment of her strength and the demoralization of being further confined.
In January, a fall and a chest infection came on top of all that and on top, as well, of the loneliness she’d lived with since Dad died three years ago. So Mom’s decision to explore MAiD at this time did not come as a surprise.
What surprised me, in the best way, was how her family doctor responded. Dr. P. acknowledged Mom’s request fully and wholeheartedly, looking ahead to a day when she’d have a physician or a nurse practitioner help her to end her life. At the same time, she offered Mom all of the rich benefits that can come with a palliative care approach.
We might hope that such a response would be common practice. But if it were, you would not know that from the messages sent from the major palliative care organizations in the country.
In November 2019, the Canadian Hospice Palliative Care Association (CHPCA) and the Canadian Society of Palliative Care Physicians (CSPCP) released a Joint Call to Action on the relationship between palliative care and MAiD. In it, they deliberately distinguished palliative care from MAiD: “MAiD is not part of hospice palliative care; it is not an ‘extension’ of palliative care nor is it one of the tools ‘in the palliative care basket…’ ”
On its website, the CSPCP links to a letter written by Dr. Balfour Mount, one of the founders of palliative care in Canada. He asserts the differences in stronger terms. The term “medical assistance in dying,” Mount writes, is a “euphemism… to define euthanasia/ assisted suicide.” The vision for palliative care “was never to intentionally hasten death… what Canadian legislators have termed ‘medical assistance in dying’ is not part of the practice of palliative care.”
From the perspective of Canada’s largest palliative care organizations and one of its most influential leaders, then, MAiD is substantially different from palliative care, perhaps even incompatible with it.
Yet as a daughter, I experienced the connectedness and compatibility of the two practices. As a healthcare researcher, I was motivated to write this as a contribution to the public discussion about the relationship between MAiD and palliative care.
• • •
Three years ago, Mom raised the topic of MAiD with one of her physicians. She wanted to know if, when the time came, it would be an option for her. The physician’s reluctance was clear: “Well, I’m not a fan of MAiD, there are so many things we can try before it comes to that and, in my experience, a lot of good happens for families in those last weeks of life …” Last year, Mom raised MAiD again with another doctor. He too was discouraging and assured her that when the time came, she would have good palliative care.
We were troubled by these interactions. The realization that the physicians Mom relied on were not prepared to even talk with her about MAiD – the realization that she might have to advocate for herself, or defend her wishes against someone else’s views and values as her life was ending and her energy low – was dismaying to her and to me. At the time, it didn’t occur to either of us that Mom could receive palliative care and also have a medically assisted death.
In their first conversation about MAiD, Dr. P invited Mom to talk about her future, what she wanted for her health and well-being and what healthcare interventions she wanted to avoid. Mom spoke about her discomfort, her pain and her shortness of breath and she welcomed the medications and measures Dr. P. offered to ease her symptoms. In a later conversation, following the requirements for a MAiD assessment, Dr. P. talked with Mom about the possibility of hospice care and described other palliative care measures. But she never implied – as I half expected her to – that Mom would or should change her mind about MAiD if her symptoms were better controlled or if she had other care options.
Dr. P. took Mom’s request for an assisted death at face value – and seriously. Yet she also held it lightly, making space around it: “If at any point, at any point, you decide you don’t want this, it just goes away” (a wave of her hand showed how easy this would be). She gave Mom the chance to acknowledge how very tired she was and she helped Mom formalize her request for MAiD and make contact with the community MAiD team. She dropped by unannounced at the house to make sure Mom knew how to use the device that would ease her breathing. Dr. P was not “on the side” of palliative care nor was she on the side of MAiD. She was on Mom’s side.
• • •
In the days that followed her request for MAiD, Mom spoke with each of her kids. She was concerned that my brothers and I might not understand or that it might be too hard for us. But she had reached her limit with medical interventions: she said she felt as though she was always being patched up and the patches were falling off.
In some middle of the night moment, thinking about MAiD and also about the songs that she wanted at her memorial, these lyrics from The Water is Wide came into my mind:
The water is wide, I can not get o’er
And neither have I wings to fly
Give me a boat that will carry two
And both shall row… my love and I.
And I thought, that’s it: we gave her a boat. Her family, and her family doctor, and the MAiD coordinator and assessors and provider, gave her a boat.
She had been rowing for years: managing a slew of pills at their different times of the morning and night, coping with the discomfort and sometimes the pain, adapting over and over to the erosion of her energy and the narrowing of her world.
Once Mom knew that she could have an assisted death, everything about the rowing changed. It was so much less laboured and fraught than it had been and had more of certain kinds of energy and vitality, in large part because the distant shore was made visible, reachable. And knowing that we would all row with her in these last days, in the direction she set, profoundly eased Mom’s suffering. “Relief” was the word she used over and over again to describe her feelings.
• • •
Mount has described the original vision of palliative care as that of “a new medical discipline and community culture of care that enabled living fully at the end of life while minimizing the symptoms and fear of the dying process.”
It is a vision and approach to care that I continue to admire for its enormous contribution to easing people’s pathways at life’s closing, and for the tenacity and humanity of its practitioners and advocates. I’ve witnessed their skilled commitment both in my past research in cancer care and now as part of a team working to support the capacity of primary care providers to deliver palliative care.
The idea that MAiD has no place in realizing this vision was captured vividly by a hospice volunteer I spoke with last year. “MAiD is not medical assistance in dying – it’s medical assistance in death!” She said this with dismay and a kind of outrage, as if MAiD could never be part of a practice and culture of care that enables living fully at the end of life, as if it undermines palliative care or renders it irrelevant.
My Mom received excellent palliative care before, during and following her request for MAiD; palliative care and MAiD unfolded easily and gracefully together. My family’s experience is one among many that might prompt Canada’s palliative care organizations to reconsider their relationship to MAiD, to rethink the current public messages that contribute to pressure on ill people and their families to forego or to remain silent or ashamed about MAiD.
As we enter the fifth year of MAiD provision, with the accumulation of knowledge of how families experience MAiD, I hope CHPCA and CSPCP will be able to lower the walls and build the bridges with MAiD organizations that are possible to build: bridges that support knowledge and skills development among practitioners and foster conversation in families and communities, in the vital space shared between palliative care and MAiD, where so many of us want to live and die.
The comments section is closed.
Christina — Besides the information and education I garnered from your article regarding the philosophical and practical distinction(s) between palliative care and MAiD, I especially appreciated the respectful, balanced tone in you espoused in sharing your mother’s and your story. Which made it much easier to take in, consider and appreciate what you had to say. There is, however, a whole other facet to the ongoing ‘debate’ (for lack of a better way of putting it) between palliative care vs MAiD, and that is the confusion, challenge and (emotional) repercussions faced by substitute decision makers who sometimes have to decide whether terminal sedation is to be used, under the auspices of palliative care, when their loved one is no longer capable of deciding for themselves. This may be a decision regularly taken by palliative care and MAiD professionals, but for lay people and family members it is anything but routine. This I learned from experience.
Best regards,
GW
Your article was so well written and portrayed your mother’s decision in such a dignified way. Than you.
I also think the exchange of ideas through the comments has a respectful tone that reflects the values held by so many practitioners in this area.
Most people I think see MAID as a point on a continuum of health supports that we may all need and not as opposing options.
I do concur that the woeful underfunding of palliative care prevents it from being as robust an option as it needs to be and may lead to more people invoking MAID earlier than might otherwise be the case.
Beautiful. So sorry treating MDs did not step up, step away from what they might choose personally and support their patient and her wishes, her rights. Clinicians are humans too.
I met Dr Balfour-Mount back in Montreal. Sorry to see he has not evolved and still sees MAiD as a failure, a rejection of palliative care when a person chooses choose MAiD. In fact 82% of people who do choose MAiD had palliative care. These patients know their rights, know what MAiD is and accept that they are dying. They are the informed. They embrace palliative care as the best option for symptom management. They also accept on a journey to death and may choose to shorten that journey by days or weeks and pick the day and time they want to die surrounded, supported by people they choose. Please don’t abandon them because of their choice.
BTW, I know it is common when a person is approved for MAiD, their symptoms are more tolerable and they do get more out of the life they have. They do so in the knowledge they could end it when they choose, if they want.
MAiD should be seen as an option for care at the end of life, an option even if you are in palliative care like 82% of those who choose MAiD.
Loved your article Christina.
I’m so proud to be part of a palliative care team that supports a persons decision for MAiD. This is a fantastic article.
Extraordinarily clear on the important blending of how we care for our patients in living and in dying. There is no separation in the tools of easement that a family doctor should have to offer.
Thank you so much for sharing your story & your mother’s journey with us. As home care nurse’s we support many palliative patients in their decisions to pursue their option for MAiD. We are fortunate to have an amazing palliative care coordinator (who sent us your article!), local & trained MAiD nurse, & palliative care physician on our community health team. The ability to provide end of life options for our patients gives them back that control they have usually lost in their own lives because of their medical condition. It truly is a beautiful thing, and to be a part of a “good death” is such a blessing and privilege. Thank you again for your article, I will be keeping a copy to share with my peers for many years to come.
Beautifully written, thank you for sharing.
Excellent! Thank you. My professional experience working as a NP in oncology and palliative care is that MAiD will be integrated…eventually. Just as oncologists have loosened their fear that referral to palliative care was their “failure”. So too will palliative care specialists come to realize that MAiD is not a failure or cop out of their specialty. Time….
Thanks Grace.
For many palliative physicians, it has nothing to do with viewing MAiD as failure of palliative care. For many, they have a moral conflict with alleviating suffering by ending someone’s life. As such, I support my colleagues who are conscientious objectors but also insist they make an effective referral in those cases.
I hope my comments help to provide some clarity.
Thank you for sharing your story and that of your mother. I believe it is critical that we continue to pursue this idea that palliative care and MAiD work together in the best interests of those dying.
Thank you so much for your article. I am a long time believer of palliative care and I have walked the walk with my sister, mother and husband for this I was thankful to be there for them. I also believe in the choice if you are so tired and life really is not going to get any better and your decision is to accept MAiD and end your life that is entirely your choice. I also think there is no place better to accept this choice than through a Hospice venue. At the Hospice you are surrounded by compassionate caring individuals and more importantly your family and friends have direct access to supportive care for bereavement and this is so important because it is a new concept not everyone understands how to deal with the loss. My hope for the future is we will be able to support our loved ones in their choice and be able to support their loved ones and guide them through the loss and bereavement of their loved one. What better place than a Hospice Supportive Care Centre.
Thank you for sharing your family’s experience. So important!!
Christina thank you for sharing your experience. We were blessed to have an understanding and compassionate doctor to assist us when my husband became ill with an aggressive form of Lukemia. This doctor was our beacon of hope as he introduced us to the professionals that would assist us with assisted dying . The palliative doctor we met clearly outlined her role ( to keep you as comfortable as possible in your last days) and that of MAID. While she was clear about her role she didn’t present MAID as being a contradiction. She left room for MAID to dovetail into the best care she could provide until my husband said he was ready. We felt that we had a team around us and the comfort that gave us at such an emotionally and physically challenging time in our last days together was immense. Please continue your work and advocacy for MAID and palliative care. They needn’t be mutually exclusive.
My husband and I–both seniors in our mid-70’s– are strong supporters of MAiD and Dying with Dignity. We have written a personal directives and discussed our wishes with my children, and they fully understand and support our decisions. I didn’t realize, however, that palliative care workers might be opposed to MAiD, and I very much agree with you that there should be a smooth stream of support from palliative care to a decision to active MAiD. Please continue to advocate for this integration! Thanks, Diane Eaton
What a good description of the way in which palliative care and MAiD should be seamless.
This is so wonderful–clear, experienced, thoughtful, respectful, kind.
In North Bay, ON, this is a huge issue right now, and extremely divisive, particularly since, as far as we know, the original board *included* MAID as a matter of course. And then donations began. And then there was a new board, and MAID was off the table. The rumour is of course that a very significant donation was offered specifically contingent on MAID being excluded. No-one in the organization has addressed this. Many people, me included, have cried betrayal and withdrawn our support, financial and other, because the change was NOT discussed, announced, consulted, until two local docs who had originally been very supportive, exposed it publicly–and withdrew their involvement and support.
There has been absolutely no clear and specific explanation by those who support the current anti-MAID position of why they see MAID and palliative as contradictory.
The only response from the current board is that they’re following provincial “rules”.
This is a very small rural community, and *everyone* worked hard to get the hospice in place. No-one questions the value or the quality of the care that they’re now providing, but it is exclusive, including inclusive, and absolutely does not honour or respect the patient’s rights and wishes.
Fury.
As board chair of an organisation providing hospice programming in our local community and presently building a 10 bed residential hospice, my board and I are currently struggling with the tough questions around end of life, including forming a MAID policy. In this regard we have arranged for some time in the fall, a medical ethicist, Dr Robert Butcher, to help us work this through by presentation and moderated discussion. Articles such as yours are invaluable to us in this regard to help us build the framework for our discussions and to consider MAID from as many perspectives as possible. Thank you for your wisdom and compassion.
Such a well written explanation of how palliative care and MAID are not mutually exclusive but are both possible choices for an individual in the end-of-life care.
Thank you for your story. I thought your choice of ‘Water Is Wide’ most appropriate. I am following MAID/PALLIATIVE care very closely and I think your story gives advice to ‘find the right doctor’. Carole Zaza
My mother chose MAID in 2017. She was in hospice for 4 months before. She had excellent care but she was in pain and losing her independence quickly. She didn’t want to lay in a bed unable to do anything and she didn’t want her children and grandchildren to watch her waste away. We all supported her decision and some were with her till the end. It was a quick and pain free way to see her go. Her doctor didn’t agree with MAID and didn’t pass her to doctors who did. Palliative Care and MAID definitely need to work together for the person.
Thank you for sharing this story. It’s beautifully written, and it speaks so well to the perspective of a holistic approach that takes in account the need to, as you put it, be on the side of the person.
Wow. This is so moving. I watched my husband waist away in pain for over 2 years from cancer. He chose not to use Maid. But what I see here is a sense of relief from some of the fear of dying. Your Mom had great palliative care and family support and I ‘m sure this took away a lot of stress just knowing that she could choose not to suffer anymore, that there was a way to leave her family and know they supported her.
I am so touched by this.
Thank you
I am so glad your Mom’s wishes were honoured and your family supported through the decision making process. Thank you for sharing your experience, and for writing so eloquently about it both from a personal and professional perspective. I share your viewpoint 100%.
Hello Christina,
Very well written. Condolences on your mother’s passing.
Let me first be clear: I recognize and acknowledge that MAiD is legal in Canada and do not wish to debate this.
I am a palliative care physician. I provide palliative care. I view MAiD as distinct from PC. As such I do support the positions of the CSPCP, CHPCA and Dr. Mount, in this manner. While PC is a holistic approach to care, I view MAiD more as a procedure than a type of care, albeit one that is emotionally charged for some by its very nature. While MAiD can, and should, be done compassionately, it is not an approach to care, per se.
However, I fully recognize that some of my patients will request MAiD. I do not view this as failure. Rather, I respect and support my patients’ wishes. For some, this is their desired form of end of life care. For others, their suffering is severe and irremediable, despite our collective best efforts.
I am proud of the approach our group adopted. It was done thoughtfully and respectfully as MAiD was legalised in 2015/16. PC and MAiD providers respect one another, collaborate and put the patient at the center of the circle, as it were.
Recently, I wrote a letter to the Premier in support of a local MAiD provider who has been unfairly treated by the system. They have been a good clinician/collaborator and our patients have benefited from this relationship.
I know some palliative care physicians who provide MAiD as part of their practice and many who do not. I believe this is due to the fact that palliative care has suffered historically from such benign neglect by government specifically and medicine in general, that there is frustration that MAiD for 1% of Canadians has been head and shoulders prioritised over PC for 100% of Canadians, including those who may opt for MAiD. In time, I suspect more PC providers may include MAiD as part of their practice but only time will tell.
I believe it is this frustration that provides the foundation for the positions you mention. Decades of advocacy for PC has yielded so little while at the same time MAiD has received priority. Yet both patient populations face suffering. While proponents of MAiD will state that access should have come sooner, a patient’s right to palliative care remains a “postal code lottery” I have seen PC resources diverted to MAiD in the form of funding and resources without replacement. Call it jealousy if you must, I view it as an issue of equity. I see more for few and little for many.
I fully support a physician and nurse’s rights to conscientiously object to providing MAiD but simultaneously support the need for effective referrals in order to ensure patients who request MAiD have access. HCPs should not act as barriers to patients seeking to assessment for MAiD.
I believe PC and MAiD should be universally available and accessible for patients but I feel Canada failed miserably by legislating access to MAiD without legislating access to PC first.
I, too, hope that the walls can come down and bridges be built, But that is a two-way street.
Thank you again for sharing your story and thoughts. I believe we want the same things. :)
Keep well.
I read your comments with interest coming from a PC physician, and for most of your comments I share in the clinical perspective. I do disagree though with your comment about MAiD being only a procedure versus PC being a practice providing care.
As in PC there are skilled professionals and dedicated volunteers who provide “care” delivering specific tasks/procedures. That care is provided and guided under a philosophy that values life, reduced suffering and comfort.
MAiD is a in part a procedure but is also “care” provided by skilled professionals and dedicated volunteers.
Both have scripted standards of practice, guided by legal legislation, require consent to treatment, put the patient in the centre of the circle of care, include significant others where appropriate, include the value, ethics and decisions of the patient as paramount. Providing information to the patient allows them to make informed decisions. Educating others, sharing in compassion and empathy allows the conversations we should be having around death and dying.
So, I think we need to move together in supporting one another to achieve an outcome that most people want; a peaceful death.
I wonder if you could please share what your evidence is for MAID taking resources from Palliative Care. Your statement does not seem quite right when you consider that Alberta has recently announced funding for palliative care (to an anti-MAID healthcare provider) and that Health Canada, in its first report on MAID reports that:
• The majority of persons receiving MAID (82.1%) were reported to have received palliative care services.
• Of those MAID recipients who did not access palliative care services prior to receiving MAID, the majority (89.6%) had access to these services but chose not to do so, according to the reporting practitioner.
I also find it unfortunate that you have chosen to describe MAID as a “procedure” rather than a type of care. I don’t think families of those who have chosen this compassionate way to end their lives would agree with you.
Thank you so much. As a Hospice palliative care nurse who supported my mother’s decision to pursue Maid in 2017, you have made the link many of my colleagues and friends could not.
Faye Geoghegan