Dear colleagues,
If I told you that I was thinking about the thanato-politics of desire, you might reasonably check to make sure that it鈥檚 still April Fool鈥檚 Day. But let me explain. In the wake of an outstanding lecture by Pierre Deschamps at last month鈥檚 National Grand Rounds 鈥� which I encourage you to watch when published - I鈥檝e been thinking more about Medical Aid in Dying (MAID) and the construct of desire at the end of life. I鈥檓 not talking about desire in the romantic sense, but rather about a more basic meaning that relates to what is wished for or wanted. I want to argue here that the wish to die and the wish not to live with present or anticipated suffering are different; that policy decisions that promote access to MAID over access to palliative care as a way to achieve a 鈥渄eath with dignity鈥� shape people鈥檚 desire; and that, echoing Mr. Deschamps, we face the opportunity, if not the ethical imperative, to articulate a positive (and realistic) vision of a natural death.
That we often ask or discuss 鈥渨hat patients want鈥� in the context of situations that nobody wants, i.e. being seriously ill, presents a certain irony. Their desires (or wants or wishes) are necessarily constrained by a context defined by the social, spiritual, and political realities that shape people鈥檚 lives. This relationship is not unidirectional, in that our social, spiritual, and political realities are also shaped by our desires. Case in point: a desire not to suffer at the EOL might lead to the acceptance of euthanasia. That is, our wants and wishes are both politically structured and politically consequential.
If we permit a rhetoric around end-of-life care that is blind to this dynamic, we are left only to accept peoples鈥� desires at face value and unable to critique the politics that inform them. How does this relate to Medical Aid in Dying? I should say before getting too far into this, that I do not reject MAID as an available treatment modality (even if I do reject the assertion that it is always an 鈥渁ct of care鈥� or the only way to 鈥渄ie with dignity鈥�). I would assert that the dominant political rhetoric related to MAID 鈥� one that trickles down to patients, caregivers, clinicians and the public - is one that poses a simple logic: people don鈥檛 want to suffer at the end of life and therefore do want the right to die.
To me, this presents a problematic and oversimplified formulation. The desire not to suffer in life, including at its end, seems universal 鈥� even among those who would acknowledge as a point of spiritual conviction that 鈥渓ife is suffering.鈥澛犅營鈥檝e met very few people who express a primary wish to die, including among those who have had MAID. More commonly, among those who do (or will) and do not (or will not) have MAID, is a wish not to live longer with their present suffering, or not to face the suffering that they anticipate at life鈥檚 end.
Given our frequent care of those who feel they (or a loved one) reach a dignified end, and for which we receive significant gratitude, I am often surprised by the degree to which people associate dying with a lack of dignity or with suffering. It seems evident that the weight of history remains upon us, in that the history of a cancer death characterized by isolation, poor symptom management, and spiritual crisis is not only still present in the rear-view mirror. As we know too well, it remains evident also in the contemporary halls of our hospitals on up until the point (and sometimes beyond) the time when someone is 鈥渄eemed palliative鈥� and we are called.
While not alone in this predicament, our province is ill-prepared to ensure a dignified and meaningful end of life. First, we haven鈥檛 built an adequate social safety net to support our current population, let alone the rapidly aging population to come. With some exceptions, CHSLDs are understaffed and widely perceived as a dumping ground for the aged and sick. Second, we have a work force with inadequate training to meet the moment. Serious illness communication skills are undervalued and infrequently taught, despite their critical role in enabling higher value care that aligns with people鈥檚 goals and values. Finally, we lack a specialist palliative care workforce of sufficient size to meet the care and training needs of the system at large. With this reality, it is not surprising that people might 鈥渃hoose鈥� Medical Aid in Dying. One might reasonably wonder where they might otherwise look.
How do we respond to a system in which policy failures perpetuate the gap between evidence-based best practice and real-world care, ultimately failing patients across the trajectory of serious illness and at life's end? What can we do to help ensure that people鈥檚 desire to live is not overwhelmed by a decision to die? I think we can do two things: First, we must speak beyond our walls to those who do not see what we see. This speech must take place in a public forum, through letters to our representatives, through Op-Eds to the newspaper, through discussions with friends and family. The second is that we must also articulate a clear and positive vision of a natural death. As far as I can tell, the argument made by many in palliative care when MAID was being considered was that we did not need it because we have palliative sedation. This is only an argument about how we can avoid suffering, not one grounded in the promise of palliative care that a serious illness and dying present opportunities for integrity, wholeness, and growth.
As usual for these letters, these are incompletely polished thoughts. I鈥檓 interested in how you think about this.
In other news, we are on the cusp of opening our registration for the. With your attendance, this promises to be an extraordinary event and celebration of the first 50 years of this momentous meeting. I鈥檓 so thrilled to share with you the Plenary speakers and program highlights in the weeks and months to come. Please do not miss the opportunity to register early with a special Palliative Care 海角社区 affiliate rate.
聽Wishing you a joyous April.
Justin