ABSTRACT
Although there are many ethical issues related to amyotrophic lateral sclerosis, one of the most controversial issue is the withdrawal of ventilator support. This problem has a significant impact not only on the decision to "remove", but also on the decision to "wear" it. In particular, if the withdrawal of ventilator support was to be legalized, there is a concern that its legislation may exert a 'silent pressure.' Therefore, rather than explicitly defining the withdrawal of ventilator support, as a "legal right," we prefer the installation of a policy in which the details of individual cases are carefully scrutinized, allowing for justifiable non-compliance with the law in special cases.
Subject(s)
Amyotrophic Lateral Sclerosis , Ethics, Clinical , Euthanasia, Passive , Amyotrophic Lateral Sclerosis/therapy , Euthanasia, Passive/ethics , Humans , Respiration, ArtificialABSTRACT
OBJECTIVE: To delineate the critical decision-making processes that paediatricians apply when treating children with life-threatening conditions and the psychosocial experience of paediatricians involved in such care. DESIGN: We conducted semistructured, individual face-to-face interviews for each participant from 2014 to 2015. The content of each interview was subjected to a comprehensive qualitative analysis. The categories of dilemma were extracted from a second-round content analysis. PARTICIPANTS: Participants were board-certified paediatricians with sufficient experience in making decisions in relation to children with severe illnesses or disabilities. We repeated purposive sampling and analyses until we reached saturation of the category data. RESULTS: We performed interviews with 15 paediatricians. They each reported both unique and overlapping categories of dilemmas that they encountered when making critical decisions. The dilemmas included five types of causal elements: (1) paediatricians' convictions; (2) the quest for the best interests of patients; (3) the quest for medically appropriate plans; (4) confronting parents and families and (5) socioenvironmental issues. Dilemmas occurred and developed as conflicting interactions among these five elements. We further categorised these five elements into three principal domains: the decision-maker (decider); consensus making among families, colleagues and society (process) and the consequential output of the decision (consequence). CONCLUSIONS: This is the first qualitative study to demonstrate the framework of paediatricians' decision-making processes and the complex structures of dilemmas they face. Our data indicate the necessity of establishing and implementing an effective support system for paediatricians, such as structured professional education and arguments for creating social consensus that assist them to reach the best plan for the management of severely ill children.
Subject(s)
Clinical Decision-Making , Critical Care , Critical Illness/therapy , Pediatricians , Adult , Clinical Competence , Clinical Decision-Making/ethics , Clinical Decision-Making/methods , Critical Care/ethics , Critical Care/psychology , Emotional Intelligence , Female , Humans , Japan , Male , Middle Aged , Pediatricians/education , Pediatricians/ethics , Pediatricians/psychology , Pediatrics/methods , Qualitative ResearchABSTRACT
We explored a principle of advance directives. Advanced directives are a tool to help execute a broader concept of advance care planning, which is included in advance life planning. Advance directives should be formed by consent with inter- and multi-disciplinary care teams on the basis of patient's intension, passing process such as medical treatment, patient care and mental supports. The contents can update according to patient's health condition and environment. A definition of advance directives is, "oral or written statement in which people declare their treatment preferences in the event that they lose decision-making capacity". Under the present conditions in Japan, we show two problems that the process which reaches to the consent formation is neglected, and the document preparation is excessively considered. Advance directives are of two principle types: instructional directives and proxy consent. There are advantages and disadvantages to each type, and people often used a combination of both types. We conclude an interpretation process of instructional directive with proxy (key person), which assumes the patient's intention, is important for advance directives.
