Justin J Sanders1,2, Vinca Chow3, Andrea C Enzinger4, Tai-Chung Lam5, Patrick T Smith6,7, Rebecca Quiñones1, Andrew Baccari8, Sarah Philbrick9, Gloria White-Hammond10, John Peteet1, Tracy A Balboni11,2,12, Michael J Balboni1,12. 1. 1 Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute , Boston, Massachusetts. 2. 11 Brigham and Women's Hospital , Boston, Massachusetts. 3. 2 Department of Anesthesia, Duke University , Durham, North Carolina. 4. 3 Departments of Medical Oncology and Palliative Care, Dana-Farber Cancer Institute , Boston, Massachusetts. 5. 4 Department of Clinical Oncology, Li Ka Shing Faculty of Medicine, University of Hong Kong , Hong Kong, China . 6. 5 Harvard Medical School Center for Bioethics , Boston, Massachusetts. 7. 6 Gordon-Conwell Theological Seminary , South Hamilton, Massachusetts. 8. 7 Harvard Divinity School , Boston, Massachusetts. 9. 8 Kirksville College of Osteopathic Medicine, A.T. Still University , Kirksville, Missouri. 10. 9 Harvard Divinity School , Cambridge, Massachusetts. 11. 10 Department of Radiation Oncology, Dana-Farber Cancer Institute , Boston, Massachusetts. 12. 12 Initiative on Health, Religion, and Spirituality within Harvard, Boston, Massachusetts.
Abstract
BACKGROUND: People with serious illness frequently rely on religion/spirituality to cope with their diagnosis, with potentially positive and negative consequences. Clergy are uniquely positioned to help patients consider medical decisions at or near the end of life within a religious/spiritual framework. OBJECTIVE: We aimed to examine clergy knowledge of end-of-life (EOL) care and beliefs about the role of faith in EOL decision making for patients with serious illness. DESIGN: Key informant interviews, focus groups, and survey. SETTING/ SUBJECTS: A purposive sample of 35 active clergy in five U.S. states as part of the National Clergy End-of-Life Project. MEASUREMENT: We assessed participant knowledge of and desire for further education about EOL care. We transcribed interviews and focus groups for the purpose of qualitative analysis. RESULTS: Clergy had poor knowledge of EOL care; 75% desired more EOL training. Qualitative analysis revealed a theological framework for decision making in serious illness that balances seeking life and accepting death. Clergy viewed comfort-focused treatments as consistent with their faith traditions' views of a good death. They employed a moral framework to determine the appropriateness of EOL decisions, which weighs the impact of multiple factors and upholds the importance of God-given free will. They viewed EOL care choices to be the primary prerogative of patients and families. Clergy described ambivalence about and a passive approach to counseling congregants about decision making despite having defined beliefs regarding EOL care. CONCLUSIONS: Poor knowledge of EOL care may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.
BACKGROUND:People with serious illness frequently rely on religion/spirituality to cope with their diagnosis, with potentially positive and negative consequences. Clergy are uniquely positioned to help patients consider medical decisions at or near the end of life within a religious/spiritual framework. OBJECTIVE: We aimed to examine clergy knowledge of end-of-life (EOL) care and beliefs about the role of faith in EOL decision making for patients with serious illness. DESIGN: Key informant interviews, focus groups, and survey. SETTING/ SUBJECTS: A purposive sample of 35 active clergy in five U.S. states as part of the National Clergy End-of-Life Project. MEASUREMENT: We assessed participant knowledge of and desire for further education about EOL care. We transcribed interviews and focus groups for the purpose of qualitative analysis. RESULTS: Clergy had poor knowledge of EOL care; 75% desired more EOL training. Qualitative analysis revealed a theological framework for decision making in serious illness that balances seeking life and accepting death. Clergy viewed comfort-focused treatments as consistent with their faith traditions' views of a good death. They employed a moral framework to determine the appropriateness of EOL decisions, which weighs the impact of multiple factors and upholds the importance of God-given free will. They viewed EOL care choices to be the primary prerogative of patients and families. Clergy described ambivalence about and a passive approach to counseling congregants about decision making despite having defined beliefs regarding EOL care. CONCLUSIONS: Poor knowledge of EOL care may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.
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