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Responses to Not Dead Yet? (see below for article)
Both cases are excellent teaching moments for chaplains to demonstrate the importance of spiritual care for family members in the midst of tragedy. Medical care is about treating the body, soul, and spirit. All work together. The importance of ritual and cultural practices being respected by those in the medical fields is as important to the overall care of people as any other practice of medicine.
Amy Jones
Hospice Chaplain
Providence Hospice
Beaverton, OR
The story told in “Not Dead Yet” makes me glad that there are many chaplains serving on their institutions’ ethics committees. Such situations must be discussed from a spiritual as well as physical perspective, and chaplains are skilled at “building bridges” between the two.
Rita Kaufman, CAE
Marketing and Public Relations Manager
Association of Professional Chaplains
Schaumburg, IL
In Nancy Berlinger's fine and thought-provoking Bioethics Walk discussion, "Not Dead Yet," a 19 year brain-dead patient is kept alive on life support until family can arrive (a common practice) at which point the patient's father asks that traditional Chinese medicine be administered. In a JAMA article reviewing the case, the action of administering the traditional substance is criticized as being clinically inappropriate and as medically futile, which, strictly speaking, it is. But playing the 'futility' card loads the deck with presumptions of how we often attempt to 'over-determine' the goals of our caring for one another through medicine. The case begs the question regarding the meaning of the care we give to one another. Medicine is one way we care for one another, human presence and compassion another. Should these two be bifurcated as if exclusive ways of caring?
The JAMA article perhaps with irony affirms that to have administered the herbal substance "confuses the delivery of health care with cultural, religious, and/or psychological needs of grieving families. Such confusions are not harmless." Maybe the 'confusion' noted in JAMA is implicit in the caring we call 'healthcare.' I find myself wondering the sense in which administering herbal substances to a brain-dead patient could be construed as "harmful." Certainly not to the deceased, nor to her family requesting it. Harmful to hospital operations if a bed is needed for a critical patient? Perhaps. But harmful to a caring professional at bedside? I can't imagine it. As a chaplain on the ethics committee I would affirm the beneficence of administering the substance, and say that it did no harm, except perhaps to operations.
Jeffrey F. Krauss, D.Min.
Home care chaplain
Vitas Innovative Hospice of Northern Virginia
Vienna, VA
As a hospice chaplain I recognize that life and death are not two different states that can be definitively separated one from the other, but rather a continuum. JAMA's argument against treating a "dead body" seems to be motivated more by finances than a consideration of the ethics of the situation. I applaud the compassion shown by the hospital in treating a human being whose passage was complicated and confusing, even though that "treatment" was highly unlikely to benefit the patient medically. Perhaps the hospice philosophy of treating the family and not just the patient colors my perception of this story, but the reality is that medical staff frequently find themselves tailoring treatment to the needs and desires of the patient's family. Science is a tremendous blessing, but medical providers treat human beings, not just their bodies. I think JAMA missed the mark in their assessment.
Chaplain Dale Mead
FirstHealth Hospice and Palliative Care
Pinehurst, NC
Not Dead Yet?
I once heard a CPE resident tell this story about her residency in a large urban hospital:
A teenager was brought into the ER of the hospital after being hit by a car. By the time his parents arrived, physicians had concluded that his catastrophic head injuries had resulted in brain death. While his heart was beating and his chest was rising and falling due to the ventilator, he was clinically dead.
His parents were devout Orthodox Christians, who arrived at the hospital with their pastor. When physicians suggested that it was time to remove their son from life support, the parents asked their pastor for guidance: should they accept that their son had died, or pray for a miracle? After all, he was still breathing, his heart was still beating. Their pastor told them that their church did not recognize brain death, only cardiac death: therefore, their son was still alive. As the mother prayed for her son’s recovery, the medical team asked the CPE resident, who had been paged to the ER, for help in what they termed “clearing the bed.” From their perspective, this was a body that belonged in the morgue, not in their ER. The CPE resident took the father aside, and asked if she could help. The father told her that what was needed was an Orthodox priest who could explain to his wife that their son was dead, and that it was appropriate to withdraw life support. Without this assurance, his wife would be unable to give consent, and there would be no peace in their family concerning this decision if it was made by the father alone. The CPE resident, with the help of her supervisor, found a priest with experience in chaplaincy who was able to come to the hospital and talk with the parents and their pastor. The parents gave consent to withdraw life support.
I remembered this story when I read a case study in a recent issue of JAMA, which described this scenario:[1]
A 19-year-old woman, admitted to a hospital for cranial surgery, was declared brain dead following a post-surgical brain hemorrhage. Her parents lived overseas, and the medical team decided to keep the patient on mechanical ventilator so her parents could “say good-bye.” When the patient’s father arrived the day after the patient was declared dead, he asked the team to keep his daughter on the ventilator, and “to administer a purported traditional Chinese medicinal substance to the patient,” so that she could receive, in his words, “‘the best of Western and Eastern medicine.’” The team, perplexed by this unusual request, wishing to “respect the family’s cultural values,” and aware that no harm could be done to a dead person, called for an ethics consultation to discuss this question: would it be acceptable to administer the substance, with the goal of helping the family come to terms with the patient’s death? The consultation team agreed that this was acceptable, the substance was administered and the patient kept on the ventilator for two more days. There was no change in her condition. After the team denied the family’s request for a second dose of the substance, the family made plans for a religious ritual at the bedside, and the ventilator was withdrawn.
The authors of the JAMA commentary – which I urge PlainViews readers to find and read in full, as it is beautifully written and of likely interest to any chaplain – disagreed with both the clinical and the ethics teams in this case. Why? Two reasons: Because keeping a brain dead patient on a ventilator is confusing to professionals and family alike, by “perpetuating the view that brain death is not real death.” And because using medical personnel and equipment to administer a “traditional remedy” after a patient has died confuses the delivery of health care with the cultural, religious, and/or psychological needs of a grieving family. Such confusions are not harmless. They may be distressing to personnel who must tend to a dead body as if they were caring for a living person. And they inevitably direct resources away from living patients.
The commentators concluded:
“From the physician’s perspective, there is little choice but to view compliance with such a request as the medically futile treatment of a dead body. On this reading of the case, the traditional remedy should not have been administered at all.”
In my reading of the JAMA article, I did not spot any reference to a chaplain. I wondered whether this case might have had a different outcome if – as in the first case – a chaplain had been on the scene when the patient was declared dead and the clinicians were breaking the news to the patient’s family.
What do you think? This is an interactive column, and I welcome your perspectives on the ethics of either or both of these cases. If you had been on the scene in the first case, would you have handled this situation differently? Why? If you had been on the scene in the second case, whether as a chaplain or as a member of the ethics consultation team, what might you have said or done, and how might your actions have affected the outcome of this case?
Footnote
[1] Applbaum AI, Tilburt JC, Collins MT, and Wendler D, A family’s request for complementary medicine after patient brain death. JAMA 299 (18): 2188-2193.
Nancy Berlinger is Deputy Director and Research Associate at The Hastings Center. Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; conscientious objection and moral distress in health care; and patient safety and the resolution of medical harm. Her broader interests include bioethics issues in cancer care, narrative ethics, and medical humanities.
As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation.
Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness
(Johns Hopkins, 2005), which will be released in paperback in fall 2007. She serves on the ethics research group of the Joint Commission, the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM), the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, and the editorial board of Medical Ethics Advisor
. She is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.
She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.
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