Patient participation in palliative care decisions: an ethnographic discourse analysis

The participation of patients in making decisions about their care has become paramount given the emphasis on person-centred care. It is deemed especially appropriate in the context of palliative care, where decisions involve a lot of uncertainty and are heavily influenced by personal values. Yet, the literature observing the process of making decisions with patients remains scarce in palliative care. The concept of shared decision-making has been defined in different ways. In this thesis, shared decision-making is conceptualized as the process of constructing patient participation in decision-making through discourse during clinical interactions. The research question guiding this study is: How do patients and health care providers discursively construct patient participation in palliative care decisions in a hospital-based palliative care team? This qualitative study combines discursive psychology with ethnographic methods from organizational ethnography. The field research lasted one year, and the interactions between six family physicians, two pivot nurses, and 18 patients were observed longitudinally. Data generation included observations, and audio-recordings of consultations where decisions were being made.Palliative care providers possess communication skills that can help reverse the documented tendency to delay decision-making conversations about palliative care options, which constitutes a barrier to involving terminally-ill patients in decisions about their care. Data analysis first consisted of identifying the discourses that initiated decision-making exchanges, and the arguments used to justify broaching difficult palliative care decisions. The timing and nature of referral to palliative care influenced whether the only remaining decisions concerned symptom management before an imminent death, and whether patients were still able to participate in decision-making. Participating health care providers introduced decision-making needing immediate attention, such as symptom control, with a straightforward discourse directly addressing and eliciting patients' presenting complaints. When decisions entailed discussing an impending death, initiating the decision-making process required a different discourse. This was accomplished indirectly by palliative care providers by probing the patients' understanding of the disease process, or directly when providing a justification for initiating a difficult discussion, such as expressing concern about the likelihood of complications. While approaching decisions about symptom management was a routine part of palliative care providers' work, patients implicitly retained control over whether they would engage in preparation for their death.The analysis then consisted of looking for the interpretive repertoires constructing patient participation in decision-making; interpretive repertoires are familiar lines of argument used to justify actions or opinions. Patients and their healthcare providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were identified as constructing patient participation in this organizational context, namely (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The analysis addressed how patients and health care providers could use these repertoires to negotiate their respective roles in decision-making and exert power over this process during the clinical encounter. Involving patients in the decision-making process gave legitimacy to decisions that profoundly shaped the timing and cause of death of patients. Reflecting on the discourse of decision-making promotes awareness of the clinical and ethical stances that are taken everyday when approaching decisions about end-of-life care.

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