The Ethics of Transition: Human, Ethical and Legal Perspectives on Responsibility in the Move to Pediatric Home Care.

摘要

In this dissertation, I examined the human, legal and ethical perspectives on the process of transition from hospital to home care for young, ventilator-dependent children in Alberta. I used case study methodology to mobilize the research objectives in exploring two cases of transition.;I examined the legal perspective primarily through critical analysis of jurisprudence. I analyzed three legal judgments delving into the balance of public versus parental responsibility for care when offspring require, and desire, complex home care. I demonstrated (a) the factors pushing families to expensive and alienating litigation; (b) the divergent values underlying the opposing arguments of parent-child dyads and government; and (c) the legal entitlements around the balance of parental and public responsibilities for care. I applied these findings to the cases of transition to determine legal appropriateness and possibility of litigation. These families' low likelihood of suing offered protective factors for professionals to promote and seek out in future transitions.;Finally, I elaborated the ethical perspective using feminist ethics to reveal the implications of the meaning, nature and challenges of the case transitions. I emphasized the turbulence according to the river analogy. The goal of maternal extraordinariness particularly combined with the recognized challenges to localize responsibility on mothers, promote the ramifications of grief, mire the sustainability of caregiving, and disconnect the parties. I concluded by connecting this turbulence to its policy implications as well as to gaps in trust. I argued that by promoting trust, professionals and programs (and families) could mitigate the turbulence so as to avoid interference, insecurity or delay.;The human perspective was illuminated primarily through interviews with 26 adults involved in the cases. They represented the family, hospital team, home care team, and government programs. My analysis revealed the meaning of transition: the goals of this process were to shift responsibilities and to aim for excellence. For professionals, excellence was 'best' practices and attempts; for mothers, excellence was actually extraordinariness. I also discovered the major challenges of transition: loss, lack of human resources, and hierarchies of knowledge. The nature of transition became apparent through analogy: the features of transition paralleled the facets of a rowboat journey down a river.