We Must Express Our Faith! The Spiritual Calling of Medicine in End-of-Life Care
Phylliss Chappell, MD, MS, FAAHPM, Houston Methodist Hospital; Assistant Professor of Clinical Medicine, Weill Cornell Medicine; Assistant Professor of Clinical Medicine, Houston Methodist Academic Institute; Assistant Clinical Member, Houston Methodist Research Institute; Adjunct Assistant Professor, Texas A&M College of Medicine
The families and caregivers of critically ill and incapacitated patients must face the fear and anticipatory grief of impending loss and the often-daunting responsibility of surrogate decision-making. For many families, religion and spirituality are crucial to their pursual of direction, meaning, and connection as death approaches. The terminally ill are more deeply engaged in their religion and spirituality than non-terminally ill or healthy patients. (Daaleman, 2000). Their surrogate decision-makers, committed to honoring their dying loved one's wishes, are also often profoundly influenced by religion and spirituality. Despite the profound influence of religion and spirituality on surrogate medical decision-making for seriously ill and dying patients, healthcare teams frequently fail to address religion and spirituality in discussions of goals of care. (Gordon, 2018) The practice of holistic, compassionate medical care will require us to address both the body and the soul, the secular and the sacred.
A 65-year-old Hindu husband and father with severe acute on chronic lung disease, invasive colon cancer, and acute renal failure had suffered a cardiac arrest and was no longer felt to be a candidate for oncologic treatment or lung transplant. His grieving family, honoring the patient's previously expressed wishes, made the heartbreaking decision to request the compassionate withdrawal of life-sustaining treatments. The family gathered at his bedside; a chant of peace played continuously, interrupted only by the sounds of grief. The patient's sister delicately offered liquid from a small copper bottle to the patient's wife, who, with solemnity, placed it on the patient's lips. The intensive care physician, clearly moved by the expressions of grief and faith in her language and tradition, softly explained that this was water from the River Ganges, Hinduism's most sacred river. Being unable to bathe in the river Ganges, this act would allow his soul to be transported to heaven. The patient's family had only encountered the intensive care physician in the final days of his hospitalization. Yet, they had entreatingly requested that she be present for the moment of death. Their request seemed to have less to do with her scientific skills as a physician and more with her spirit's warmth.
A critically ill 69-year-old wife and mother of 7 was dying despite all available intensive care. Even as her clinical condition rapidly worsened and death was felt to be imminent, her husband, a Pentecostal pastor, and her children rejected the medical team's grim prognosis. Instead, they expressed their belief that God would miraculously heal her and this healing depended on their faith. As a child, I had been well taught that God acted on our behalf "according to our faith." The morning of her death, as the patient's youngest son stood alone, trembling and weeping at her bedside, someone by speakerphone, not there to witness her impending death, commanded relentlessly and aggressively that he "speak the word of faith." Even as resuscitative efforts were ongoing, the family tried desperately to hold to their faith. The medical team finally terminated their futile efforts to resuscitate. A young chaplain later commented that he wished he had known how to suggest to them, "Perhaps surrendering her to God is also a full expression of faith."
Months after the death of his wife, the Pentecostal pastor spoke of his deep, persistent, aching grief. He expressed concern for his youngest son, who seemed "in a depressive state," often going to his mother's gravesite alone, sitting with her, and weeping. Nevertheless, the pastor no longer seemed to view his wife's death as a failure of faith. "No man knows the mind of God," he said. "There is a purpose in everything God allows, even when we do not understand it. And I am still holding on to faith."
A young woman with severe chronic lung disease who had been listed for a double lung transplant had suffered a cardiac arrest and anoxic brain injury complicated by multi-organ failure. During a family conference to discuss the patient's condition and prognosis, the patient's mother wept, with her face buried in the chest of a family member who tried unsuccessfully to comfort her. The patient's father, facing the impending death of his beloved daughter, held back tears and expressed, despite overwhelming grief, his acceptance of the patient's prognosis and the family's decision to transition to comfort-centered care with the compassionate withdrawal of life-sustaining measures. "We are hurt beyond belief," but "we must express our faith!" he stated. In the face of unspeakable grief, the full expression of his faith was surrender. On the morning that compassionate withdrawal of life-sustaining measures was planned, with her family at her bedside, the patient's signs of life began to decline. She died before any life-sustaining treatments were withdrawn. The patient's father believed this was yet another of his daughter's characteristically generous acts. "She did not want us to bear this terrible decision, so she took it out of our hands."
Though the manifestations of faith differed in each of these cases, in each case, the healthcare team created a sacred space through compassionate listening with cultural and spiritual humility. The families felt their religious faith and deeply held beliefs were acknowledged, considered, and respected. Faith, according to physicist Alan Lightman, "is the willingness to give ourselves over, at times, to things we do not fully understand" and "to disregard scientific evidence." (Lightman, 2013; Page 51) Practicing the art of medicine requires us to understand, to the extent that we can, the science of the human body and to respectfully embrace the human spirit, which we cannot understand.
Spirituality has been defined as the "aspect of humanity through which individuals seek meaning, purpose, and transcendence" and through which we experience connection to ourselves, to others, and to "the significant or sacred." (NCP, 2018; Page 32) At the limits of medicine, we are called to more than science. We are called to reverence for life and death, to companion our patients and their families through the daunting responsibilities of surrogate decision-making and caring for their loved ones, and the fear and anticipatory grief of impending loss. If we ignore or delegitimize the deeply held beliefs, which are, for many, a source of strength and meaning, we risk diminishing their confidence in our care and increasing their decisional distress at a time when life seems most desperate and fragile. We are called to create and hold a sacred space for expressions of religion, faith, and spirit and to compassionately offer care for both the body and the soul.
References
1.Daaleman T, VandeCreek L. Placing Religion and Spirituality in End-of-Life Care. JAMA, November 15, 2000—Vol 284, No. 19. 2514-2517
2.Gordon BS, Koegh M, Davidson Z, et al. Journal of Critical Care. 2018. 45;79: 76–81 https://doi.org/10.1016/j.jcrc.2018.01.015
3.Lightman A. The Accidental Universe the World You Thought You Knew. Vintage Books; 2014.
4.National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp.
A 65-year-old Hindu husband and father with severe acute on chronic lung disease, invasive colon cancer, and acute renal failure had suffered a cardiac arrest and was no longer felt to be a candidate for oncologic treatment or lung transplant. His grieving family, honoring the patient's previously expressed wishes, made the heartbreaking decision to request the compassionate withdrawal of life-sustaining treatments. The family gathered at his bedside; a chant of peace played continuously, interrupted only by the sounds of grief. The patient's sister delicately offered liquid from a small copper bottle to the patient's wife, who, with solemnity, placed it on the patient's lips. The intensive care physician, clearly moved by the expressions of grief and faith in her language and tradition, softly explained that this was water from the River Ganges, Hinduism's most sacred river. Being unable to bathe in the river Ganges, this act would allow his soul to be transported to heaven. The patient's family had only encountered the intensive care physician in the final days of his hospitalization. Yet, they had entreatingly requested that she be present for the moment of death. Their request seemed to have less to do with her scientific skills as a physician and more with her spirit's warmth.
A critically ill 69-year-old wife and mother of 7 was dying despite all available intensive care. Even as her clinical condition rapidly worsened and death was felt to be imminent, her husband, a Pentecostal pastor, and her children rejected the medical team's grim prognosis. Instead, they expressed their belief that God would miraculously heal her and this healing depended on their faith. As a child, I had been well taught that God acted on our behalf "according to our faith." The morning of her death, as the patient's youngest son stood alone, trembling and weeping at her bedside, someone by speakerphone, not there to witness her impending death, commanded relentlessly and aggressively that he "speak the word of faith." Even as resuscitative efforts were ongoing, the family tried desperately to hold to their faith. The medical team finally terminated their futile efforts to resuscitate. A young chaplain later commented that he wished he had known how to suggest to them, "Perhaps surrendering her to God is also a full expression of faith."
Months after the death of his wife, the Pentecostal pastor spoke of his deep, persistent, aching grief. He expressed concern for his youngest son, who seemed "in a depressive state," often going to his mother's gravesite alone, sitting with her, and weeping. Nevertheless, the pastor no longer seemed to view his wife's death as a failure of faith. "No man knows the mind of God," he said. "There is a purpose in everything God allows, even when we do not understand it. And I am still holding on to faith."
A young woman with severe chronic lung disease who had been listed for a double lung transplant had suffered a cardiac arrest and anoxic brain injury complicated by multi-organ failure. During a family conference to discuss the patient's condition and prognosis, the patient's mother wept, with her face buried in the chest of a family member who tried unsuccessfully to comfort her. The patient's father, facing the impending death of his beloved daughter, held back tears and expressed, despite overwhelming grief, his acceptance of the patient's prognosis and the family's decision to transition to comfort-centered care with the compassionate withdrawal of life-sustaining measures. "We are hurt beyond belief," but "we must express our faith!" he stated. In the face of unspeakable grief, the full expression of his faith was surrender. On the morning that compassionate withdrawal of life-sustaining measures was planned, with her family at her bedside, the patient's signs of life began to decline. She died before any life-sustaining treatments were withdrawn. The patient's father believed this was yet another of his daughter's characteristically generous acts. "She did not want us to bear this terrible decision, so she took it out of our hands."
Though the manifestations of faith differed in each of these cases, in each case, the healthcare team created a sacred space through compassionate listening with cultural and spiritual humility. The families felt their religious faith and deeply held beliefs were acknowledged, considered, and respected. Faith, according to physicist Alan Lightman, "is the willingness to give ourselves over, at times, to things we do not fully understand" and "to disregard scientific evidence." (Lightman, 2013; Page 51) Practicing the art of medicine requires us to understand, to the extent that we can, the science of the human body and to respectfully embrace the human spirit, which we cannot understand.
Spirituality has been defined as the "aspect of humanity through which individuals seek meaning, purpose, and transcendence" and through which we experience connection to ourselves, to others, and to "the significant or sacred." (NCP, 2018; Page 32) At the limits of medicine, we are called to more than science. We are called to reverence for life and death, to companion our patients and their families through the daunting responsibilities of surrogate decision-making and caring for their loved ones, and the fear and anticipatory grief of impending loss. If we ignore or delegitimize the deeply held beliefs, which are, for many, a source of strength and meaning, we risk diminishing their confidence in our care and increasing their decisional distress at a time when life seems most desperate and fragile. We are called to create and hold a sacred space for expressions of religion, faith, and spirit and to compassionately offer care for both the body and the soul.
References
1.Daaleman T, VandeCreek L. Placing Religion and Spirituality in End-of-Life Care. JAMA, November 15, 2000—Vol 284, No. 19. 2514-2517
2.Gordon BS, Koegh M, Davidson Z, et al. Journal of Critical Care. 2018. 45;79: 76–81 https://doi.org/10.1016/j.jcrc.2018.01.015
3.Lightman A. The Accidental Universe the World You Thought You Knew. Vintage Books; 2014.
4.National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp.