BackgroundLittle is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians’ and the patients’ perspectives.Methods(1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews.ResultsIn conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the “no choice” models: 1) trying to resolve the dilemma via a technical answer or a “wait-and-see” posture, instead of involving the patients in the questioning and the thinking; and 2), giving a “last minute” choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients’ attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients.ConclusionsThis study indicate to what extent these difficult decisions are related to physicians’ and patients’ respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.
Context: Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient. Objectives: The aim of this study is to understand the purpose of euthanasia requests from the patient’s viewpoint and their personal and practical impact. Methods: We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed. Results: In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself. Conclusions: A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients’ sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.
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