What Influences Parents' Decisions To Limit or Withdraw Life Support?
ABSTRACT Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the use of closed-ended questionnaires. We prospectively identified and described parents' self-reported influences on decisions to forgo life support from their children. Deeper understanding of parents' views will allow physicians to focus end-of-life discussions on factors important to parents and help resolve conflicts.
Prospective, qualitative pilot study.
Pediatric intensive care unit of a university-affiliated children's hospital.
A total of 14 parents of ten children whose pediatric intensive care unit physician had made a recommendation to limit or withdraw life support.
: In-depth, semistructured interviews were conducted with parents during their decision-making process.
Factors influencing the parents in this study in their decision to forgo life support included their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care. Parents in this study expressed the desire to do what is best for their child but struggled with feelings of selfishness, guilt, and the need to avoid agony and sorrow. Physician recommendations, review of options, and joint formulation of a plan helped parents gain a sense of control over their situation. Parents of eight children agreed to forgo life support and parents of two did not.
Prospective interviews with open-ended questions identified factors influencing parents' decision making not previously described in the critical care literature such as parents' past experiences with end-of-life decisions and their anticipated emotional adjustments and future resources. Inclusion of these factors into discussions is important to parents and may facilitate decisions regarding the limitation or withdrawal of life support.
Full-textDOI: · Available from: Ashok Sarnaik, Feb 11, 2015
- SourceAvailable from: journals.publishing.monash.edu
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- "Nonetheless, as in other analyses that focus on parents of older children, Kirschbaum's parents 'came to the conclusion that life was not to be sought at all costs', i.e., they were sensitive to their children's quality of life, degree of pain and suffering, and likelihood of improvement, as well as to the physicians' recommendations (Kirschbaum 1996; Meert et al. 2000; Meyer et al. 2002). Sharman et al. (2005) interviewed the parents of 10 children in the US whose pediatric intensive care unit physicians had recommended limiting or withdrawing life support. They found that additional influences on parents' decision to forgo life support included 'their previous experience with death and end-of-life decision making for others, their personal observations of their child's suffering, their perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care'. "
ABSTRACT: Euthanasia is performed on occasion, even on newborns, but is highly controversial, and it is prohibited by law and condemned by medical ethics in most countries. To characterise and compare the judgments of lay persons, nurses, and physicians of the acceptability of actively ending the life of a damaged newborn. Convenience samples of 237 lay persons, 214 nurses, and 76 physicians in the south of France rated the acceptability on a scale of 0-10 of giving a lethal injection in 54 scenarios composed of all combinations of 4 within-subject factors: gestational age of 6, 7, or 9 months; 3 levels of severity of either perinatal asphyxia or of genetic disease; attitude of the parents about prolonging care unknown, favourable, or unfavourable; and decision made individually by the physician or collectively by the medical team. Overall ratings were subjected to cluster analysis and each cluster to analysis of variance and graphic representation. Lay persons (mean acceptability rating 4.29) were significantly more favourable to euthanasia than nurses (2.84), p < .005, or physicians (2.12), p < .005. Five clusters were found with different judgment rules, i.e., how the information was integrated. More physicians (30 per cent) than nurses (14 per cent), p < .01, or lay persons (11 per cent), p < .01, rated euthanasia as never, under any condition, acceptable. Most, however, asserted that it was increasingly acceptable as the factors combined to favour it, especially when the parents desired to stop treatment. More physicians (45 per cent) and nurses (46 per cent) than lay persons (21 per cent), p < .01, used a complex conjunctive rule (level of parent's attitude x level of severity of damage x consultation with team or not) rather than a simple additive rule. Unlike law and medical ethics, most of the lay persons, nurses, and physicians judged the acceptability of euthanasia as a function of the circumstances. Most health professionals combined the factors in a conjunctive (multiplicative), rather than additive, fashion in accordance with legislation for adults in The Netherlands and elsewhere that requires a set of criteria to be fulfilled before it is legitimate to end a patient's life.Monash bioethics review 09/2010; 20(2):14.1-24. DOI:10.1007/BF03351524
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- "Factors that influence parents' decisions are their possible previous experiences with death and end-of-life decision making for others, personal observations of their child's suffering, perceptions of their child's will to survive, their need to protect and advocate for their child, and the family's financial resources and concerns regarding life-long care . Meyer and colleagues  showed that parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. "
ABSTRACT: Most deaths in the pediatric intensive care unit occur after a decision to withhold or withdraw life-sustaining treatments. The management of children at the end of life can be divided into three steps. The first concerns the decision-making process. The second concerns the actions taken once a decision has been made to forego life-sustaining treatments. The third regards the evaluation of the decision and its implementation. The mission of pediatric intensive care has expanded to provide the best possible care to dying children and their families. Improving the quality of care received by dying children remains an ongoing challenge for every pediatric intensive care unit team member.Pediatric Clinics of North America 07/2008; 55(3):791-804, xiii. DOI:10.1016/j.pcl.2008.02.008 · 2.20 Impact Factor
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ABSTRACT: Tesis doctoral inédita leída en la Universidad Autónoma de Madrid, Facultad de Medicina. Departamento de Pediatría. Fecha de lectura: 17-Mayo-2007