Reflection of a research assistant as part of Émilie Cormier's doctoral project

By Marianne Bordeleau, Doctoral Research Assistant

Read in French.

    As part of my job as a research assistant, I had to listen to and transcribe four interviews conducted with two women residing in care centers. They described receiving care that seemed to be based on a palliative approach, but they also described receiving care that was sometimes similar to curative care. They have both requested medical assistance in dying. However, their participation in the research was based on the fact that they recognized that they were receiving palliative care as part of an end-of-life trajectory. Why does the concept of palliative care seem so confusing?

The diffuse boundary between curative and palliative care

According to Rossi (2010), palliative care seeks to

    ensure the dignity of the dying person by working to enable them to die with dignity, [to] fight against the pain and suffering often caused by end-of-life situations, [to] refuse "therapeutic obstinacy" [and to] rethink the limits and relevance of curative medicine. [...] Palliative care [...] aims to […] improve the quality of life of seriously ill persons and to support their loved ones. (p. 37-38, loose translation)

Thus, palliative care is a response to, among other things, the use of “therapeutic obstinacy” by ensuring that people with incurable diseases are given the dignity they deserve (Rossi, 2010). In other words, palliative care honors the agency of the ill person (Rossi, 2010). When the prognosis for life becomes fragile, the goal of palliative care is to accompany the ill person to death, so in the end-of-life context, the outcome of this care is known to those who agree to receive it. How is it decided, then, that it is now time to receive palliative care? Moving from "diagnosis [to] prognosis" (Rossi, 2010, p. 39) can be nuanced. According to Rossi (2010), the line between curative and palliative care is not entirely clear. Thus, this decision making process requires close communication between the patient and all the professional actors involved in their care (Rossi, 2010) and depends on "dynamics that are not a matter of reasoning but of individual and collective action" (Rossi, 2010, p. 42). Thus, appropriate care — that which is appropriate for the person at the end of life but also for the agents of the environment in which they are embedded — does not depend on a distanced analysis of the people involved or their experience. According to Rossi (2010), what is appropriate is articulated in relation to particular life circumstances and contexts that are themselves embedded in a collective situation: what is appropriate would also be variable. The decision to receive curative or palliative care would therefore also be variable. While this may seem utopian in a medical context, Rossi (2010) states that "in caregiving, scientific knowledge is subordinated to human intentions and actions" (p. 42). Thus, the path to decision making is not predetermined. Here, caregivers and care receivers must necessarily work together to determine what should or should not be done. But it doesn't always work that way. In the two interviews I was given to transcribe, the palliative care received by both individuals seemed totally different. On the one hand, the decisions were indeed the result of a community approach. On the other hand, scientific knowledge and institutional norms likely prevailed over "human" intentions. What was different about the experiences of the two women?

The first participant resides in a place that she had been previously familiar with and in which she reports being able to discuss, share and make decisions collaboratively with those who provide her care. The second participant resides in an institution that she is entering for the first time in her life and where she reports not always understanding the intent behind the actions of the caregivers. Notwithstanding the care environment itself, the main distinction seemed to be related to the posture adopted by the caregivers: a posture of openness, exchange and collaboration versus a posture of subordination.

The reversal of Caregiver/Care receiver

What emerges when we exchange and collaborate with the cared-for? When asked about their experience with palliative care, the participants' answers were largely comprised of their life stories. It was noted that they had two things in common: they had lived part of their lives experiencing homelessness — which gave them the experience of having lived on the margins of institutions — and they themselves had taken on the role of caregiver in a previous job. Thus, they now find themselves in the role of care recipients while having to adapt to the philosophy of an institution that may no longer be the same as the one in which they themselves had the experience of caring in. This reversal of caregiving can be particularly difficult to integrate depending on the posture embodied by the caregiver. In other words, the caregiver may have no idea of the realities of the person in front of them, hence the relevance of the palliative culture, which leads us to think of care as an ideal of dialogue and respect, in which we consider the expertise of each person. Châtel (2010) leads us to reflect on care as an offering that requires a "counter-offering" (2010, p. 87), here conceived as the reciprocal and community aspect of palliative care. Without reciprocity, therefore, without communication, the care provided has the potential to become hurtful (Châtel, 2010). Thus, Rossi (2010) and Châtel (2010) remind us that palliative care is first and foremost a culture of reciprocity in which the person receiving care is not reduced to the role of "recipient of care", but rather has a crucial role to play in the decisions that will determine the end of their life.

It seems to me that it is essential that caregivers take an interest in the current situation of the person at the end of life in relation to their past situation and, even more so, in the way the person at the end of life perceives the care provided in light of their own life history. The relevance of such an approach seems to me to be even more salient in the context where the reality of life of the person being cared for is very distant from the reality of the caregiver. My reflection leads me to assume that the end of life has no meaning without the life that precedes it, and that it is most of the time this lived life that will determine its course and inclinations. Thus, by being consistent with the experience of the person who requests it, palliative care may no longer refer to a confused notion that opposes the curative, but rather to a malleable and flexible approach that places the person who is ill at the heart of their own life until the very end.

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References:

Châtel, T. (2010). Éthique du « prendre soin » : sollicitude, care, accompagnement. Dans Emmanuel Hirsch (éd.), Traité de bioéthique: I - Fondements, principes, repères (p. 84-94). Érès.

Rossi, I. (2010). Culture palliative : pour anticiper et accueillir la mort. Revue internationale de soins palliatifs, 25(1), 37-43.