Reflections on Hope at the End-of-Life
By: Erin McKenzie
Our team is currently making progress on the Insight Grant-funded project investigating the complexities of intending to accelerate the end-of-life (EOL) through MAID from the perspective of those delivering MAID and, to a smaller extent, those who request it. There is significant debate as to whether it is acceptable for physicians to carry out MAID as it seemingly violates the principle of non-maleficence. However, a review of interview studies with physicians has revealed that physicians’ intentions when performing MAID are nuanced. Despite discomfort associated with being the agent of someone else’s death, some physicians determine that the net benefit of the relief of suffering and maintenance of patient autonomy and dignity outweigh the negative effects. Patients often cite significant distress at the EOL and desire MAID as a last resort, identifying it as the only way to relieve their immense suffering.
Accessing MAID at the EOL can be seen as the ultimate act of giving up hope. There is no longer an expectation or desire to continue living and ceasing to live means giving up any future opportunities to encounter positive experiences. However, there are many who would argue that even in the most unimaginable, unprecedented circumstances, reasons to live can still be found. For example, those working in palliative care maintain that actions can be taken to ensure patients live as actively and meaningfully as possible until the end. Founded on Judeo-Christian principles such as the sanctity of life and the belief that the realms of life and death should be in the hands of the divine, palliative care practitioners commit to neither hastening nor prolonging death. Additionally, a Jewish-Austrian psychiatrist, Viktor Frankl, founded the concept of logotherapy after surviving a Nazi concentration camp. In this theory, one must instill meaning into the events in one's life, and work and suffering can lead to finding meaning, ultimately leading to fulfillment and happiness (Frankl, 1967). Frankl maintained that even in the face of senseless, cruel suffering, meaning can be found through moments of connection big and small, such as imparting wisdom on others or experiencing the beauty of nature (Frankl, 1967).
However, as an interview study of Dutch older adults ideating on a self-chosen death revealed, for many older adults, human suffering has no positive moral significance and there was no hope for further derivation of meaning from life (van Wijngaarden, Leget, & Goossensen, 2016). For these participants, the view on the horizon was one of declining physical and cognitive capacity, a lack of independence, and intractable suffering (van Wijngaarden, 2016). Death was associated with a release of distress and humiliation, a state of rest and peace, an endless sleep, and in some cases, reunification with beloved ones (van Wijngaarden, 2016). One lady suffering from several intense physical discomforts said: “You know, what kind of life is this? I don’t want to die, but my life is simply unliveable”, “death is just most preferable!” (van Wijngaarden, 2016). For these patients, there is no hope of experiencing more positive outcomes in the future. Therefore, hastening death is not a removal of opportunities for positive outcomes, but rather, the object of hope that can help one avoid a slow and uncomfortable decline. Is it irrational to hope for death, which is often considered an absence of everything, including the ability to perceive the culmination of that hopeful wish? One definition of hope provided by Snyder states there are two components of hope: (1) a belief in, or a perceived capability to produce, workable routes (pathways) to desired goals and (2) the motivation (agency) to use those routes (Snyder, 1994). Those at the EOL often do express hope according to this definition. They hope for a death without an excess of suffering, and they hope to plan well for their death in order to make the experience easier on their families. In other words, they hope for a “good death” and see MAID as a way in which they are capable of producing a path to this desired goal.
Sometimes I think of decisions made at the EOL as stumbling through the dark. Physicians make treatment plans based off prognoses that are notoriously inconsistent and hard to predict. Likewise, older adults at the EOL try to live out the rest of their days as best as they can, while faced with the great unknowability of what lies beyond death. It’s hard to understand what living in the shadow of death feels like when you haven’t experienced it. As a young, healthy person, death is seen as a thief. One that robs you of time and opportunities to continue to experience life. But death is viewed differently at the EOL, when there are few remaining days left to attach hopeful experiences to. Even my Nana, a remarkably healthy 93-year-old, has told me that life has become tiresome, and death is not a scary thought, but an accepted fate that she is ready to welcome when the time comes. Even after studying this topic in depth, I have no firm opinion on the absolute moral acceptability or impermissibility of MAID. Although it is incredibly necessary to thoroughly examine this topic and produce informed guidelines for care at the EOL, I think it is likewise essential to acknowledge how many unknowns exist when working in the realm of death and dying. It is crucial to study and practice with humility, leaving room for the experience of individuals, as we will all undoubtedly appreciate this tolerance and understanding when it is our own turn to confront death.
References
Frankl. (1967). Logotherapy and existentialism. Psychotherapy (Chicago, Ill.), 4(3), 138–142. https://doi.org/10.1037/h0087982
Snyder. (1994). The psychology of hope: you can get there from here. Free Press.
van Wijngaarden, Leget, C., & Goossensen, A. (2016). Caught between intending and doing: older people ideating on a self-chosen death. BMJ Open, 6(1), e009895–e009895. https://doi.org/10.1136/bmjopen-2015-009895
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