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Last rights: Connecting the space between palliative care and MAiD

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28 Comments
  • Gary Westover says:

    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

  • David Harvey says:

    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.

  • Jeffrey Brooks says:

    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.

  • Jane Smith-Eivemark says:

    Loved your article Christina.

  • Nicole says:

    I’m so proud to be part of a palliative care team that supports a persons decision for MAiD. This is a fantastic article.

  • jean marmoreo says:

    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.

  • Jennifer Stahley says:

    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.

  • Margie Almas says:

    Beautifully written, thank you for sharing.

  • Grace Bradish says:

    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….

    • Darren Cargill says:

      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.

  • Karie Johnston says:

    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.

  • Elizabeth EA Stuart says:

    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.

  • Deb Egan says:

    Thank you for sharing your family’s experience. So important!!

  • Nathalie says:

    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.

  • Diane Eaton says:

    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

  • Dr Mary Panko says:

    What a good description of the way in which palliative care and MAiD should be seamless.

  • Kathleen Kilburn says:

    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.

  • Christine Raynor says:

    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.

  • Susan Harrison says:

    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.

  • Carole Zaza says:

    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

  • Ruth Riddell says:

    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.

  • Fancy C. Poitras says:

    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.

  • Shelley says:

    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

  • Denise Connors says:

    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%.

    • Darren Cargill says:

      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.

      • Joanne Ready says:

        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.

      • Susan Harrison says:

        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.

  • Faye Geoghegan says:

    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

Author

Christina Sinding

Contributor

Christina Sinding is a researcher at McMaster University, in the School of Social Work and the Department of Health, Aging and Society. Her mother had a medically assisted death. On the fourth anniversary of the legalization of Medical Assistance in Dying (MAiD) on June 16, she reflects on the relationship between MAiD and palliative care.

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