Claire A Richards1,2, Helene Starks3,4, M Rebecca O'Connor5, Erica Bourget6, Ross M Hays3,7,8,9,10, Ardith Z Doorenbos3,4,11,12. 1. 1 Health Services Research and Development, Veterans Affairs Puget Sound Health Care System, Seattle, WA, USA. 2. 2 Department of Health Services, School of Public Health, University of Washington, Seattle, WA, USA. 3. 3 Department of Bioethics and Humanities, School of Medicine, University of Washington, Seattle, WA, USA. 4. 4 Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA, USA. 5. 5 Department of Family and Child Nursing, School of Nursing, University of Washington, Seattle, WA, USA. 6. 6 Department of Immunology, Fred Hutchinson's Cancer Research Center, Seattle, WA, USA. 7. 7 Department of Rehabilitative Medicine, School of Medicine, University of Washington, Seattle, WA, USA. 8. 8 Department of Pediatrics, School of Medicine, University of Washington, Seattle, WA, USA. 9. 9 Palliative Care Program, Seattle Children's Hospital, Seattle, WA, USA. 10. 10 The Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA. 11. 11 Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, Seattle, WA, USA. 12. 12 Department of Anesthesiology and Pain Medicine, School of Medicine, University of Washington, Seattle, WA, USA.
Abstract
BACKGROUND: Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family. OBJECTIVE: To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments. METHODS: Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis. RESULTS: We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child's best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent. CONCLUSIONS: Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.
BACKGROUND: Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family. OBJECTIVE: To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments. METHODS: Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis. RESULTS: We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child's best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent. CONCLUSIONS: Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.
Entities:
Keywords:
ICU/critical care issues in palliative care; family-centered care; pediatric bioethics; pediatric communication issues; pediatric palliative care; physician–patient communication; shared decision-making
Authors: Claire A Richards; Helene Starks; M Rebecca O'Connor; Erica Bourget; Taryn Lindhorst; Ross Hays; Ardith Z Doorenbos Journal: Am J Hosp Palliat Care Date: 2017-11-27 Impact factor: 2.500
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