When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a "think list" of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution.
Background: Assisted dying (AD) is currently of wide interest due to legislative change. Its relationship to other end-of-life practices such as palliative sedation (PS) is the subject of ongoing debate. The aim of this article is to describe the perspectives of a group of New Zealanders with life-limiting illness, who want or would consider AD, on the provision of end of life services, including assisted death, withdrawal of lifeprolonging treatment and symptom management with opioids or PS.Methods: We recruited 14 people with life-limiting illness and life expectancy of less than a year. Their mean age was 61 (range, 34-82) years and half were enrolled in Hospice. An additional six family members were also interviewed and included in analysis. We asked them about why they would consider AD if it was available. Interview transcripts were inductively analyzed consistent with thematic analysis. We compared the findings to prevailing ethical frameworks.Results: Most of the participants viewed current palliative care practices, such as pain relief with opioids and symptom management with PS, as hastening death, in contrast to some medical research which concludes that proportional therapeutic doses do not hasten death. Some participants did not agree with the 'doctrine of double effect' ('DDE') and saw such practices as 'slow euthanasia' and 'covert euthanasia'.They implied such practices were performed without patient consent, though they did not conceive of this as murder. Participants asserted that active and passive practices for ending life were morally equivalent, and preferred to choose the time of death over other legal means for death. Conclusions: This article contributes to what is known about how patients perceive end-of-life practices that potentially hasten death. There is a divide in what medical ethics and most health professionals and what some patients consider active hastening death. Participants' perspective was consistent with a consequentialist framework whereas deontology often guides medical ethics at the end of life. Participants' challenge to the interpretation of legal end-of-life practices as AD represents an epistemic contest to the foundation of medical knowledge, authority and ethics and therefore carries implications for preferences in care, communication and palliative care practice.
Background: Medical Assistance in Dying (MAID) was legalized in Canada without a designated period for implementation. Providers did not have access to customary alternatives for training and mentorship during the first 1–3 years after legalization. Objective: To report on how doctors prepared for their first provision of MAID in the early period after legalization in Canada. Design: Qualitative research design within an interpretive phenomenological theoretical framework. We asked participants to describe their experiences preparing for first MAID provision. Analysis of transcripts elicited themes regarding training and information desired by early adopters for provision of newly legalized MAID. Participants: Twenty-one early adopting physician-providers in five Canadian provinces were interviewed. Results: Few formal training opportunities were available. Many early-adopting providers learned about the procedure from novel sources using innovative methods. They employed a variety of strategies to meet their needs, including self-training and organizing provider education groups. They acknowledged and reflected on uncertainty and knowledge gained from unexpected experiences and missteps. Key phrases from participants indicated a desire for early training and mentorship. Limitations: This study included only the perspective of physicians who were providers of MAID. It does not address the training needs for all health practitioners who receive requests for assisted death nor report the patient/family experience. Conclusion: The Canadian experience demonstrates the importance of establishing accessible guidance and training opportunities for providers at the outset of implementation of newly legalized assisted dying.
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