Theology and Belief at the End of Life
Brittany and Maggie: Two Perspectives of Terminal Brain Cancer and Physician-Assisted Death
Kevin Voss, PhD, Concordia University Wisconsin
In the fall of 2014, an internet video went viral featuring Brittany Maynard who was diagnosed with a stage-four glioblastoma multiforme brain tumor. The video described Brittany’s unsuccessful battle with cancer and her move to Oregon where her wish was to end her life two days after her husband’s birthday in November 2014. In contrast, Maggie Karner published an article on The Federalist entitled, “Brain Cancer Will Likely Kill Me, But There’s No Way I’ll Kill Myself.” Maggie had been diagnosed with the same type of cancer as Brittany. In this paper, excerpts of Brittany’s video and of Maggie’s paper will be presented. An ethical analysis of each side will be given. A normative argument will be made that Maggie’s position reflects the traditional, biblical position that death is not an isolated, physical event. Rather, emphasis on the love of family and friends and the integration into a spiritual community offset the felt need for physician-assisted death.
White, Black, and Latino Religious Beliefs About End-Of-Life Medical Care: A Preliminary Analysis of the Coping with Cancer 2 Study
Tracy Balboni, MD, MPH, Dana-Farber Cancer Center
Paul Maciejewski, PhD, Weill Cornell Medical College
Michael Balboni, PhD, Dana-Farber Cancer Institute
Andrea Enzinger, MD, Dana-Farber Cancer Institute
Tyler J. VanderWeele, PhD, Harvard School of Public Health
Holly G. Prigerson, PhD, Weill Cornell Medical College
Background: Patients reporting high religious coping and those well-supported by religious communities have been found to receive more aggressive interventions at the end-of-life, particularly among racial/ethnic minorities. Religious beliefs about end-of-life care are considered possible mediators of these relationships. Few data are available describing religious beliefs about end-of-life (EoL) care, including types of beliefs, their frequency of endorsement, and differences in endorsement across racial/ethnic groups.
Methods: Coping with Cancer is an ongoing, multi-site, NCI-funded study examining factors influencing racial/ethnic EoL disparities. From 11/2010-09/2014, 268 advanced cancer patients underwent baseline interviews, including 7 items assessing religious beliefs about EoL care. Response options were on a 5-point scale of agreement, from ‘not at all’ to ‘a great deal’. The top two response options (‘quite a bit’ and ‘a great deal’) were considered item endorsement. Differences in endorsement by race and ethnicity were examined with chi-square statistics.
Results: Among 268 patients (79% White, 21% Black; 88% Non-Latino, 12% Latino), 81% endorsed one or more religious beliefs about EoL care, with greater endorsement of any item by Black as compared to White patients (96% vs. 76%, p<0.001) and by latino as compared to non-latino patients (94% vs. 79%, p=.04). endorsements of each type of religious belief about eol care in the total sample and by patient race/ethnicity are as follows:
(1) “my belief in god relieves me of needing to think about future medical decisions (e.g., do-not-resuscitate order or healthcare proxy) especially near the end of life”: total sample 39%; black 75% vs. white 29%, p<0.001; latino 42% vs. non-latino 38%, p=.65.
(2) “i will accept every possible medical treatment because my faith tells me to do everything i can to stay alive longer”: total sample 59%; black 86% vs. white 51%, p<0.001; latino 67% vs. non-latino 57%, p=0.31.
(3) “i think agreeing to a do-not-resuscitate order is immoral because of my religious beliefs”: total sample 7%; black 25% vs. white 3%, p<0.001; latino 6% vs. non-latino 7%, p=.74.
(4) “i would be giving up on my faith if i stopped pursuing cancer treatment”: total sample 21%; black 45% vs. white 15%, p<0.001; latino 18% vs. non-latino 21%, p=0.68.
(5) “i believe that god could perform a miracle in curing me of cancer”: total sample 59%; black 88% vs. white 52%, p<0.001; latino 85% vs. non-latino 56%, p=0.001.
(6) “i must faithfully endure painful medical procedures because suffering is part of gods way of testing me”: total sample 22%; black 52% vs. white 14%, p<0.001; latino 33% vs. non-latino 20%, p=.09.
(7) “faith helps me endure suffering from medical treatments”: total sample 56%; black 71% vs. white 51%, p=0.007; latino 64% vs. non-latino 54%, p=0.32.
Conclusions: Religious beliefs about EOL medical care are common and significantly more so among racial/ethnic minorities. these findings raise the importance of considering the role of religious community theological approaches to dying and to eol spiritual care.
Spirituality and Truth Telling in Indian Palliative Care: Stories of a Complex Relationship
Joris Gielen, PhD, Duquesne University
In India patients’ spirituality is strongly shaped by religion. If illness is also a spiritual experience, Indian palliative care providers need to give heed to the diverse religiosity of their patients. Although it is often argued that spirituality is very prominent in India, not much data regarding Indian palliative care patients’ spirituality are available. In 2012, we undertook an ethnographic study on acceptance of death and dying in North-Indian palliative care with a focus on the role of spirituality in this process. Early in our research, we observed a complex relationship between spirituality and truth telling regarding diagnosis and prognosis. Since the issue of truth telling has far reaching consequences on patient involvement in the medical decision making process, it is an important ethical issue. Therefore, we decided to study this relationship.
We opted for an ethnographic approach (participant observation). Fieldwork was undertaken from February until October 2012 at a palliative-care unit of a tertiary cancer hospital in North India. 31 patients formally consented to participate in the study. Research notes were made on the basis of repeated interactions with the patients, their relatives and the treating physicians and nurses, and observations on the ward. The researchers had access to the patients’ medical files. The notes were analyzed using conventional content analysis.
Spirituality was found to exert a large influence on how patients emotionally responded to their disease. The influence of spirituality was not one-directional. For some patients, spirituality was a source of support on their way to acceptance of their disease by providing answers to their existential questions. The fact that some Hindu patients derived consolation from the karma-theory illustrates this. Yet, spiritual views made many other patients to move in the opposite direction away from acceptance. Spirituality strongly supported hope for a cure and in that context interacted with denial. This was the case among many Hindu, Christian, Muslim and Sikh patients, who focused on a loving God who will grant them cure. This faith in a loving curing God was often actively nurtured by relatives who fearing that loss of hope for a cure would hasten the patient’s death attempted to prevent the patient from considering death as an imminent possibility. In this way, there was indeed a clear but complex relationship between spirituality and truth telling whereby spirituality was one of the factors which enabled patients to become oblivious of their true medical condition, while the fact that information regarding their disease was withheld by relatives simultaneously strengthened their belief that God would finally cure them. This condition had a huge impact on patient wellbeing in the last days of their lives when they realized that the hoped-for cure would not materialize. This caused a spiritual crisis making them wonder in despair whether God had forsaken them or did not exist. This raises the ethical question what palliative care providers should do when they are confronted with such patients. In our presentation we illustrate our findings with references to the life stories of the studied patients.
Asclepius against the Crucified: Medical Nihilism and Incarnational Life in Death
Kimbell Kornu, MD, MAR, Vanderbilt University
In The Anticipatory Corpse, Jeffrey Bishop diagnoses the metaphysical malaise of modern medicine with the claim that “death is medicine’s transcendental.” Assuming that this diagnosis is right, I further develop this provocative claim. Drawing heavily on Heidegger’s critique of technology as ontotheology and his analysis of Dasein as being-towards-death, I argue that modern medicine is intrinsically nihilistic. This medical nihilism does not mean that medicine is meaningless per se (although metaphysically this becomes the conclusion). Rather, medicine is nihilistic for two reasons: (1) the ontotheological constitution of medical technology attempts to overcome death through the exaltation of health, and (2) when death cannot be overcome, death itself becomes an eschatology of the nothing. In this sense, medicine is doubly nihilistic and cannot escape death. Instead, modern medicine needs death for its life. In response to the double nihilism of medicine, I will then draw on Maximus the Confessor to sketch an alternative Christian theological metaphysics of the Incarnation that overcomes the nihilism of medicine by transforming nothing and death as the very means unto life, the life of Christ.
Implications of Karl Barth’s Christology for Physician-Assisted Suicide
Lydia Dugdale, MD, Yale School of Medicine
The medicalization of dying grounds the experience of sickness and death firmly within the domain of biomedicine. No longer is the deathbed a place for the chaplain or priest; rather, the decision to die is but another task for the autonomous patient. But what might a Christocentric approach to life mean for decisions to die? This paper takes up Swiss theologian Karl Barth’s Christology, which emphasizes Jesus as the “Real Man” who gives substance to, and indeed determines, humanity’s ontology. According to Barth the being of man: first, rests upon the election of God, and second, consists in the hearing of the Word of God. I will explore the implications of these two statements for physician-assisted suicide (PAS).
First, Barth describes election as “a special decision with a special intention in relation to a special object.” Jesus was a creature whose existence did not depend on his own choice; He had a special relation to God. Similarly, for all of humanity, election depends not on personal choice. Human beings can forsake this election and special relationship to God, Barth says, but to do so would be to affirm “the nothingness which God as Creator has negated.” In contrast, the higher aim of a God who wills to preserve is “directed against the nothingness affirmed in sin,” hastening to “help being against non-being in order to destroy the power of the latter.” Thus, we might say that Barth’s account of election – in contrast to current dominant notions of autonomy – does not want to permit creation to reject its special relation to its Creator. Rather, pointing higher, Barth’s account affirms being over non-being and goes so far as to want to destroy the power of non-being. On these grounds, there is no room for PAS.
What does his second statement – that the being of man consists in the hearing of the Word of God – have to do with PAS? Here, Barth’s Christology again comes to the fore. Jesus, he says, speaks by the very fact of his existence. And, Barth says, the content of this Word matters. What does the Word say? Barth notes that Jesus speaks of the saving activity of God. He declares that the Creator has not abandoned his creature to the evil of nothingness and “that the yawning abyss of non-being will not be allowed to engulf its being.” As with the Father’s election, the Word assures us that we are not alone nor will be consumed by non-being. Our being rests upon the election of God and consists in hearing the Word of God, neither of which leaves room for PAS and its invitation to non-being.
Kevin Voss, PhD, Concordia University Wisconsin
In the fall of 2014, an internet video went viral featuring Brittany Maynard who was diagnosed with a stage-four glioblastoma multiforme brain tumor. The video described Brittany’s unsuccessful battle with cancer and her move to Oregon where her wish was to end her life two days after her husband’s birthday in November 2014. In contrast, Maggie Karner published an article on The Federalist entitled, “Brain Cancer Will Likely Kill Me, But There’s No Way I’ll Kill Myself.” Maggie had been diagnosed with the same type of cancer as Brittany. In this paper, excerpts of Brittany’s video and of Maggie’s paper will be presented. An ethical analysis of each side will be given. A normative argument will be made that Maggie’s position reflects the traditional, biblical position that death is not an isolated, physical event. Rather, emphasis on the love of family and friends and the integration into a spiritual community offset the felt need for physician-assisted death.
White, Black, and Latino Religious Beliefs About End-Of-Life Medical Care: A Preliminary Analysis of the Coping with Cancer 2 Study
Tracy Balboni, MD, MPH, Dana-Farber Cancer Center
Paul Maciejewski, PhD, Weill Cornell Medical College
Michael Balboni, PhD, Dana-Farber Cancer Institute
Andrea Enzinger, MD, Dana-Farber Cancer Institute
Tyler J. VanderWeele, PhD, Harvard School of Public Health
Holly G. Prigerson, PhD, Weill Cornell Medical College
Background: Patients reporting high religious coping and those well-supported by religious communities have been found to receive more aggressive interventions at the end-of-life, particularly among racial/ethnic minorities. Religious beliefs about end-of-life care are considered possible mediators of these relationships. Few data are available describing religious beliefs about end-of-life (EoL) care, including types of beliefs, their frequency of endorsement, and differences in endorsement across racial/ethnic groups.
Methods: Coping with Cancer is an ongoing, multi-site, NCI-funded study examining factors influencing racial/ethnic EoL disparities. From 11/2010-09/2014, 268 advanced cancer patients underwent baseline interviews, including 7 items assessing religious beliefs about EoL care. Response options were on a 5-point scale of agreement, from ‘not at all’ to ‘a great deal’. The top two response options (‘quite a bit’ and ‘a great deal’) were considered item endorsement. Differences in endorsement by race and ethnicity were examined with chi-square statistics.
Results: Among 268 patients (79% White, 21% Black; 88% Non-Latino, 12% Latino), 81% endorsed one or more religious beliefs about EoL care, with greater endorsement of any item by Black as compared to White patients (96% vs. 76%, p<0.001) and by latino as compared to non-latino patients (94% vs. 79%, p=.04). endorsements of each type of religious belief about eol care in the total sample and by patient race/ethnicity are as follows:
(1) “my belief in god relieves me of needing to think about future medical decisions (e.g., do-not-resuscitate order or healthcare proxy) especially near the end of life”: total sample 39%; black 75% vs. white 29%, p<0.001; latino 42% vs. non-latino 38%, p=.65.
(2) “i will accept every possible medical treatment because my faith tells me to do everything i can to stay alive longer”: total sample 59%; black 86% vs. white 51%, p<0.001; latino 67% vs. non-latino 57%, p=0.31.
(3) “i think agreeing to a do-not-resuscitate order is immoral because of my religious beliefs”: total sample 7%; black 25% vs. white 3%, p<0.001; latino 6% vs. non-latino 7%, p=.74.
(4) “i would be giving up on my faith if i stopped pursuing cancer treatment”: total sample 21%; black 45% vs. white 15%, p<0.001; latino 18% vs. non-latino 21%, p=0.68.
(5) “i believe that god could perform a miracle in curing me of cancer”: total sample 59%; black 88% vs. white 52%, p<0.001; latino 85% vs. non-latino 56%, p=0.001.
(6) “i must faithfully endure painful medical procedures because suffering is part of gods way of testing me”: total sample 22%; black 52% vs. white 14%, p<0.001; latino 33% vs. non-latino 20%, p=.09.
(7) “faith helps me endure suffering from medical treatments”: total sample 56%; black 71% vs. white 51%, p=0.007; latino 64% vs. non-latino 54%, p=0.32.
Conclusions: Religious beliefs about EOL medical care are common and significantly more so among racial/ethnic minorities. these findings raise the importance of considering the role of religious community theological approaches to dying and to eol spiritual care.
Spirituality and Truth Telling in Indian Palliative Care: Stories of a Complex Relationship
Joris Gielen, PhD, Duquesne University
In India patients’ spirituality is strongly shaped by religion. If illness is also a spiritual experience, Indian palliative care providers need to give heed to the diverse religiosity of their patients. Although it is often argued that spirituality is very prominent in India, not much data regarding Indian palliative care patients’ spirituality are available. In 2012, we undertook an ethnographic study on acceptance of death and dying in North-Indian palliative care with a focus on the role of spirituality in this process. Early in our research, we observed a complex relationship between spirituality and truth telling regarding diagnosis and prognosis. Since the issue of truth telling has far reaching consequences on patient involvement in the medical decision making process, it is an important ethical issue. Therefore, we decided to study this relationship.
We opted for an ethnographic approach (participant observation). Fieldwork was undertaken from February until October 2012 at a palliative-care unit of a tertiary cancer hospital in North India. 31 patients formally consented to participate in the study. Research notes were made on the basis of repeated interactions with the patients, their relatives and the treating physicians and nurses, and observations on the ward. The researchers had access to the patients’ medical files. The notes were analyzed using conventional content analysis.
Spirituality was found to exert a large influence on how patients emotionally responded to their disease. The influence of spirituality was not one-directional. For some patients, spirituality was a source of support on their way to acceptance of their disease by providing answers to their existential questions. The fact that some Hindu patients derived consolation from the karma-theory illustrates this. Yet, spiritual views made many other patients to move in the opposite direction away from acceptance. Spirituality strongly supported hope for a cure and in that context interacted with denial. This was the case among many Hindu, Christian, Muslim and Sikh patients, who focused on a loving God who will grant them cure. This faith in a loving curing God was often actively nurtured by relatives who fearing that loss of hope for a cure would hasten the patient’s death attempted to prevent the patient from considering death as an imminent possibility. In this way, there was indeed a clear but complex relationship between spirituality and truth telling whereby spirituality was one of the factors which enabled patients to become oblivious of their true medical condition, while the fact that information regarding their disease was withheld by relatives simultaneously strengthened their belief that God would finally cure them. This condition had a huge impact on patient wellbeing in the last days of their lives when they realized that the hoped-for cure would not materialize. This caused a spiritual crisis making them wonder in despair whether God had forsaken them or did not exist. This raises the ethical question what palliative care providers should do when they are confronted with such patients. In our presentation we illustrate our findings with references to the life stories of the studied patients.
Asclepius against the Crucified: Medical Nihilism and Incarnational Life in Death
Kimbell Kornu, MD, MAR, Vanderbilt University
In The Anticipatory Corpse, Jeffrey Bishop diagnoses the metaphysical malaise of modern medicine with the claim that “death is medicine’s transcendental.” Assuming that this diagnosis is right, I further develop this provocative claim. Drawing heavily on Heidegger’s critique of technology as ontotheology and his analysis of Dasein as being-towards-death, I argue that modern medicine is intrinsically nihilistic. This medical nihilism does not mean that medicine is meaningless per se (although metaphysically this becomes the conclusion). Rather, medicine is nihilistic for two reasons: (1) the ontotheological constitution of medical technology attempts to overcome death through the exaltation of health, and (2) when death cannot be overcome, death itself becomes an eschatology of the nothing. In this sense, medicine is doubly nihilistic and cannot escape death. Instead, modern medicine needs death for its life. In response to the double nihilism of medicine, I will then draw on Maximus the Confessor to sketch an alternative Christian theological metaphysics of the Incarnation that overcomes the nihilism of medicine by transforming nothing and death as the very means unto life, the life of Christ.
Implications of Karl Barth’s Christology for Physician-Assisted Suicide
Lydia Dugdale, MD, Yale School of Medicine
The medicalization of dying grounds the experience of sickness and death firmly within the domain of biomedicine. No longer is the deathbed a place for the chaplain or priest; rather, the decision to die is but another task for the autonomous patient. But what might a Christocentric approach to life mean for decisions to die? This paper takes up Swiss theologian Karl Barth’s Christology, which emphasizes Jesus as the “Real Man” who gives substance to, and indeed determines, humanity’s ontology. According to Barth the being of man: first, rests upon the election of God, and second, consists in the hearing of the Word of God. I will explore the implications of these two statements for physician-assisted suicide (PAS).
First, Barth describes election as “a special decision with a special intention in relation to a special object.” Jesus was a creature whose existence did not depend on his own choice; He had a special relation to God. Similarly, for all of humanity, election depends not on personal choice. Human beings can forsake this election and special relationship to God, Barth says, but to do so would be to affirm “the nothingness which God as Creator has negated.” In contrast, the higher aim of a God who wills to preserve is “directed against the nothingness affirmed in sin,” hastening to “help being against non-being in order to destroy the power of the latter.” Thus, we might say that Barth’s account of election – in contrast to current dominant notions of autonomy – does not want to permit creation to reject its special relation to its Creator. Rather, pointing higher, Barth’s account affirms being over non-being and goes so far as to want to destroy the power of non-being. On these grounds, there is no room for PAS.
What does his second statement – that the being of man consists in the hearing of the Word of God – have to do with PAS? Here, Barth’s Christology again comes to the fore. Jesus, he says, speaks by the very fact of his existence. And, Barth says, the content of this Word matters. What does the Word say? Barth notes that Jesus speaks of the saving activity of God. He declares that the Creator has not abandoned his creature to the evil of nothingness and “that the yawning abyss of non-being will not be allowed to engulf its being.” As with the Father’s election, the Word assures us that we are not alone nor will be consumed by non-being. Our being rests upon the election of God and consists in hearing the Word of God, neither of which leaves room for PAS and its invitation to non-being.