Perspectives on Dying Well
Exploring Clergy Perspectives on a ‘Good Death’ vs ‘Bad Death’ When Ministering to Terminally Ill Congregants
Virginia LeBaron, PhD, Dana-Farber Cancer Institute
Amanda Cooke, MD, Beth Israel Deaconess Medical Center
Jonathan Resmini, MDiv, Boston University School of Theology
Alex Garinther, MA, Boston College
Sarah Noveroske, BA, Dana-Farber Cancer Institute
Patrick T. Smith, PhD, Harvard Medical School Center for Bioethics
Rebecca Quiñones, MTS, Dana-Farber Cancer Institute
Michael Balboni, PhD, Dana-Farber Cancer Institute
Background: Clergy commonly provide spiritual counsel to terminally-ill congregants, and may be important sources of information and guidance for patients and family members making medical decisions at the end-of-life (EOL). An intriguing finding from previous research is that spiritual support by clergy and religious communities led unintentionally to more aggressive care at the end-of-life (EOL), particularly for Black and Latino patients. However, the reasons for this are unclear. A better understanding of this phenomenon is critical as greater medical care intensity at EOL results in poorer patient and caregiver quality of life, and can significantly impact the death experience.
Purpose: To explore and describe clergy perspectives regarding a ‘good’ versus ‘bad’ death within the participant’s spiritual tradition, with the long-term goal to improve communication and understanding between clergy and their congregants regarding EOL care.
Methods: This was a qualitative, descriptive study. Clergy from varying spiritual backgrounds, geographical locations in the U.S., race/ethnicities, and genders were recruited using chain-referral sampling. Semi-structured interview guides were developed by an interdisciplinary panel of medical educators and religious experts. All participants provided informed consent and were asked to complete a demographic survey. Interviews were organized around a core set of open-ended questions designed to explore the experiences of clergy in providing spiritual care to terminally-ill congregants. Interviews were audio-taped, transcribed verbatim, and de-identified. Transcripts were independently coded by two researchers and compiled into preliminary coding schemes. Following principles of grounded theory, a final set of themes and sub-themes inductively emerged through an iterative process of constant comparison. Transcripts were then re-coded using NVivo and checked for inter-rater reliability.
Results: A total of 35 clergy participated in one-on-one interviews (N=14) and two focus groups. Interviews occurred across the U.S. (31% Northeast, 29% Midwest, 31% Southwest, 9% West). 43% of clergy were Black/African-American, 50% Caucasian and 7% Asian. 7% self-identified as Latino/Hispanic. Most clergy surveyed held a Master’s degree (50%) or PhD (36.67%) and reported affiliation with a Christian denomination (96%). Preliminary analysis revealed clergy perspectives of a ‘good death’ involved the overarching theme of ‘wholeness and certainty’ with subthemes of preservation of patient dignity and autonomy, preparedness in spiritual, emotional and practical domains, minimal physical suffering, opportunity for reconciliation, and presence of a loving community. Many viewed a good death in terms of being in relationship with God, whereas other material factors, such as location of death (home, hospital, hospice), were considered secondary and contingent. Conversely, a primary theme of ‘separation and doubt’ characterized ‘bad deaths,’ with subthemes related to abrupt or untimely deaths and those with unrelieved spiritual anguish and physical pain. A few described the interesting concept of a ‘middle death,’ or a more nuanced death experience that integrates both positive and negative elements.
Conclusion: Understanding how clergy perceive a ‘good death’ is crucial to improving EOL care, especially for patient populations highly engaged with faith communities. Importantly, this study can help inform the design of educational EOL care initiatives for clergy and foster productive relationships and dialogue between clergy, healthcare providers and patients.
Hinduism and Death with Dignity
Rajan Dewar, MD, PhD, Harvard Medical School
Hinduism is an abstract religion with incorporated principles of 'karma' and 'dharma' in day to day living. Suffering at the end of life is directly & indirectly addressed in ancient scriptures. A few episodes in Hindu epics capture the emotions and caregiving at the end of life. In this presentation, we will address 4 examples of end of life care spanning from the epic ages to contemporary Hindu patients.
Case example 1
Acharya Bhishma's death in the Mahabharata presents the story of a man, who despite a boon to choose the time, place and manner of death ("Iccha-mrityu"), will experience just the opposite (untimely, painful and amidst the chaos of a battle field in a bed of arrows, suffering of thirst). He will suffer his end of life in a bed of arrows, for a long duration. The purported reasons for his end of life sufferings illustrate his mis-deeds in this life time, being a passive observer (negligent) in the shameful disrobing of Draupadi, the wife of the Pandavas. In addition, his prolongation of time of death also exemplifies the Hindu concept and culture of choosing favorable and unfavorable times of death.
Case example 2
The second case example, is of Kasturba, wife of Mahatma Gandhi, who suffers from lung ailments. Penicillin, prescribed by the imperial doctor, is viewed as painful prolongation of life by Gandhi, who feels that the 'time has come for Kasturba to pass’. This is vehemently opposed by the eldest son who wishes the medicine to be administered to his mother. ‘Ahimsa’ had been the basis for Gandhi’s passive and non-violent struggle against colonial rule. This tradition is based on regligious principles of Hinduism, Buddhism and Jainism.
Contemporary case example 3
A 65 year old Hindu woman and her husband, well educated with doctoral degrees from Ivy-league schools, had recently traveled to the U.S. from India to visit their son’s family. Upon arrival, the woman was diagnosed with a poorly differentiated, widely metastatic cancer. Although she was given rapid and aggressive treatment, she developed renal failure and required ventilator support from which weaning was unsuccessful. In consultations with religious advisers, the husband and family requested that Mrs. X be kept alive until the 11th for religious/astrologic reasons. These additional days created stress among caregivers. Several days later, the patient developed unresponsive hypotension and died.
Case example 4
A 67 year old Hindu gentleman from India, traveled to visit their son. He suffered a massive stroke. He was transferred to our medical center on ventilatory support with poor performance. At a family meeting, the family did not agree for withdrawal of life-sustaining measures. The family prayed daily in the hospital. As several weeks passed, the patient started to show some involuntary movements which the family interpreted as improvement. His family attributed his gain of functions to his religiosity and physician staff felt this was unacceptable prolongation of end of life. Thus there was a conflict of ideologies, with certainly cultural and religious differences in goals of care.
What Can Siddhartha Teach Us About Dying Well?
Gregory Pence, PhD, University of Alabama at Birmingham
Siddhartha's Noble Truths teach that all existence is dukkha (suffering0; that tanha (craving) causes suffering, and that the cure for craving-suffering is nirodha (cessation). He says that if we master these Noble Truths, we can achieve enlightenment, tranquility and acceptance of our own death.
Modern medicine deals daily with suffering and death, so it seems that Siddhartha's message would enlighten doctors and patients. Yet his Truths are rarely taught to students and rarely discussed in hospitals. Why is that?
This session explores whether Siddhartha was correct, whether his views contradict those of Western religions, and whether his views contradict the tendencies in modern medicine.
Virginia LeBaron, PhD, Dana-Farber Cancer Institute
Amanda Cooke, MD, Beth Israel Deaconess Medical Center
Jonathan Resmini, MDiv, Boston University School of Theology
Alex Garinther, MA, Boston College
Sarah Noveroske, BA, Dana-Farber Cancer Institute
Patrick T. Smith, PhD, Harvard Medical School Center for Bioethics
Rebecca Quiñones, MTS, Dana-Farber Cancer Institute
Michael Balboni, PhD, Dana-Farber Cancer Institute
Background: Clergy commonly provide spiritual counsel to terminally-ill congregants, and may be important sources of information and guidance for patients and family members making medical decisions at the end-of-life (EOL). An intriguing finding from previous research is that spiritual support by clergy and religious communities led unintentionally to more aggressive care at the end-of-life (EOL), particularly for Black and Latino patients. However, the reasons for this are unclear. A better understanding of this phenomenon is critical as greater medical care intensity at EOL results in poorer patient and caregiver quality of life, and can significantly impact the death experience.
Purpose: To explore and describe clergy perspectives regarding a ‘good’ versus ‘bad’ death within the participant’s spiritual tradition, with the long-term goal to improve communication and understanding between clergy and their congregants regarding EOL care.
Methods: This was a qualitative, descriptive study. Clergy from varying spiritual backgrounds, geographical locations in the U.S., race/ethnicities, and genders were recruited using chain-referral sampling. Semi-structured interview guides were developed by an interdisciplinary panel of medical educators and religious experts. All participants provided informed consent and were asked to complete a demographic survey. Interviews were organized around a core set of open-ended questions designed to explore the experiences of clergy in providing spiritual care to terminally-ill congregants. Interviews were audio-taped, transcribed verbatim, and de-identified. Transcripts were independently coded by two researchers and compiled into preliminary coding schemes. Following principles of grounded theory, a final set of themes and sub-themes inductively emerged through an iterative process of constant comparison. Transcripts were then re-coded using NVivo and checked for inter-rater reliability.
Results: A total of 35 clergy participated in one-on-one interviews (N=14) and two focus groups. Interviews occurred across the U.S. (31% Northeast, 29% Midwest, 31% Southwest, 9% West). 43% of clergy were Black/African-American, 50% Caucasian and 7% Asian. 7% self-identified as Latino/Hispanic. Most clergy surveyed held a Master’s degree (50%) or PhD (36.67%) and reported affiliation with a Christian denomination (96%). Preliminary analysis revealed clergy perspectives of a ‘good death’ involved the overarching theme of ‘wholeness and certainty’ with subthemes of preservation of patient dignity and autonomy, preparedness in spiritual, emotional and practical domains, minimal physical suffering, opportunity for reconciliation, and presence of a loving community. Many viewed a good death in terms of being in relationship with God, whereas other material factors, such as location of death (home, hospital, hospice), were considered secondary and contingent. Conversely, a primary theme of ‘separation and doubt’ characterized ‘bad deaths,’ with subthemes related to abrupt or untimely deaths and those with unrelieved spiritual anguish and physical pain. A few described the interesting concept of a ‘middle death,’ or a more nuanced death experience that integrates both positive and negative elements.
Conclusion: Understanding how clergy perceive a ‘good death’ is crucial to improving EOL care, especially for patient populations highly engaged with faith communities. Importantly, this study can help inform the design of educational EOL care initiatives for clergy and foster productive relationships and dialogue between clergy, healthcare providers and patients.
Hinduism and Death with Dignity
Rajan Dewar, MD, PhD, Harvard Medical School
Hinduism is an abstract religion with incorporated principles of 'karma' and 'dharma' in day to day living. Suffering at the end of life is directly & indirectly addressed in ancient scriptures. A few episodes in Hindu epics capture the emotions and caregiving at the end of life. In this presentation, we will address 4 examples of end of life care spanning from the epic ages to contemporary Hindu patients.
Case example 1
Acharya Bhishma's death in the Mahabharata presents the story of a man, who despite a boon to choose the time, place and manner of death ("Iccha-mrityu"), will experience just the opposite (untimely, painful and amidst the chaos of a battle field in a bed of arrows, suffering of thirst). He will suffer his end of life in a bed of arrows, for a long duration. The purported reasons for his end of life sufferings illustrate his mis-deeds in this life time, being a passive observer (negligent) in the shameful disrobing of Draupadi, the wife of the Pandavas. In addition, his prolongation of time of death also exemplifies the Hindu concept and culture of choosing favorable and unfavorable times of death.
Case example 2
The second case example, is of Kasturba, wife of Mahatma Gandhi, who suffers from lung ailments. Penicillin, prescribed by the imperial doctor, is viewed as painful prolongation of life by Gandhi, who feels that the 'time has come for Kasturba to pass’. This is vehemently opposed by the eldest son who wishes the medicine to be administered to his mother. ‘Ahimsa’ had been the basis for Gandhi’s passive and non-violent struggle against colonial rule. This tradition is based on regligious principles of Hinduism, Buddhism and Jainism.
Contemporary case example 3
A 65 year old Hindu woman and her husband, well educated with doctoral degrees from Ivy-league schools, had recently traveled to the U.S. from India to visit their son’s family. Upon arrival, the woman was diagnosed with a poorly differentiated, widely metastatic cancer. Although she was given rapid and aggressive treatment, she developed renal failure and required ventilator support from which weaning was unsuccessful. In consultations with religious advisers, the husband and family requested that Mrs. X be kept alive until the 11th for religious/astrologic reasons. These additional days created stress among caregivers. Several days later, the patient developed unresponsive hypotension and died.
Case example 4
A 67 year old Hindu gentleman from India, traveled to visit their son. He suffered a massive stroke. He was transferred to our medical center on ventilatory support with poor performance. At a family meeting, the family did not agree for withdrawal of life-sustaining measures. The family prayed daily in the hospital. As several weeks passed, the patient started to show some involuntary movements which the family interpreted as improvement. His family attributed his gain of functions to his religiosity and physician staff felt this was unacceptable prolongation of end of life. Thus there was a conflict of ideologies, with certainly cultural and religious differences in goals of care.
What Can Siddhartha Teach Us About Dying Well?
Gregory Pence, PhD, University of Alabama at Birmingham
Siddhartha's Noble Truths teach that all existence is dukkha (suffering0; that tanha (craving) causes suffering, and that the cure for craving-suffering is nirodha (cessation). He says that if we master these Noble Truths, we can achieve enlightenment, tranquility and acceptance of our own death.
Modern medicine deals daily with suffering and death, so it seems that Siddhartha's message would enlighten doctors and patients. Yet his Truths are rarely taught to students and rarely discussed in hospitals. Why is that?
This session explores whether Siddhartha was correct, whether his views contradict those of Western religions, and whether his views contradict the tendencies in modern medicine.