September 12, 2013
To: Reporters, editors, broadcasters and producers
Johns Hopkins nurse-bioethicist discloses rising concerns about the toll of “moral distress” among nurses and physicians caring for seriously and terminally ill people in the era of health care reform.
As health care reform takes shape in the U.S., vast amounts of attention have been given to the fact that more and more people with pre-existing illnesses will have access to professional care to relieve their physical and emotional suffering. Far less public attention has been given to the nurses and physicians who provide that care, and the authors of a recent study say there is evidence that many already experience serious “moral distress” that may interfere with their own health and their efforts on behalf of seriously ill and dying patients.
“Studies and case histories suggest that clinicians may experience feelings such as empathy, tenderness, sadness, remorse, shame or anger in response to perceived conflicts in values, interpersonal disagreements and institutional constraints,” says Cynda Rushton, PhD, RN, FAAN, a nurse ethicist specializing in palliative and end-of-life care. Rushton is the Anne and George L. Bunting Professor of Clinical Ethics, a joint faculty position at Johns Hopkins’ School of Nursing and Berman Institute of Bioethics.
In a pair of articles published in the Journal of Palliative Medicine, Rushton and her colleagues explain how a clinician’s physical and emotional experience of moral distress can be detrimental to the patient and themselves, and how by learning to stabilize their own nervous system and emotional reaction, they can respond in a more principled, compassionate manner. The authors propose a framework for “creating a healthy work environment supporting clinicians to practice with integrity” and reducing the toll on caregivers and patients alike.
“Conflicts of conscience are common among clinicians, particularly involving the care of patients at the end of life,” they write. For example, “some… may have concluded it was unconscionable to participate in [care] that caused disproportionate suffering and pursue goals perceived as unattainable.”
The authors add, “Clinicians struggling to address the dissonance between what they are doing and their professional roles often express this conflict as a lament of ‘why are we doing this?’ Coupled with an experience of injustice on behalf of the patient and/or broader society, this conflict can lead to unhealthy emotional arousal and moral distress. Acting against informed moral judgment creates a conflict of conscience by abandoning, consciously or unconsciously, convictions, ethical values or norms, and/or personal integrity.”
Rushton is available to discuss the proposed framework, which, the team writes, “offers a promising approach to designing interventions that help clinicians mitigate the detrimental consequences of unregulated moral distress and to build the resilience necessary to sustain themselves in clinical service.”
“Like their patients,” the team adds, “clinicians suffer as they attempt to fulfill their ethical obligations and maintain their integrity as individuals and professionals,” and there are “instances when the balance of benefit and burden that patients must tolerate to live longer becomes untenable.”
Rushton also can put the issue in the context of an aging population, a health care system confronted with serious change and cost issues, and ever-increasing attention to end-of-life decision-making and the limits of life-sustaining treatments.
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So much effort, angst, and money is expended in the fight against cancer, it is a terrible irony that effective treatments – many of which are critical components in life-saving regimens for pediatric cancer—have become so affordable as to be uneconomical to produce, creating a supply shortage. Consequently, physicians are faced with grim ethical choices of how to apportion these drugs among equally deserving patients.
A team from the Johns Hopkins Berman Institute of Bioethics, led by Yoram Unguru, MD, MS, MA, also a pediatric hematologist / oncologist at the Herman and Walter Samuelson Children’s Hospital at Sinai, will gather a distinguished group of experts for the working group meeting, to be held January 30, 2013 at the Berman Institute in Baltimore, MD. The group will work to develop ethical frameworks for decision-making both within and between healthcare institutions related to drug shortages.
“This is a real and significant problem with far-reaching impact on clinical care and research. Children’s lives are at stake,” says Unguru. “Physicians are in an untenable position; imagine having to decide which child will receive a necessary treatment and which will not, knowing that this decision will have a negative impact on a child’s life. Our hope is that this meeting will offer clinicians substantive guidance as they grapple with these and related tragic choices.”
Unguru will be joined by a team from the Berman Institute, including director Ruth R. Faden, as well as an impressive list of experts that includes:
- Conrad Fernandez, Professor and head of the division of pediatric hematology/oncology in the Department of Pediatrics, IWK Health Centre, Canada
- Steven Joffe, Associate Professor of Pediatrics and of Global Health and Social Medicine, Dana-Farber Cancer Institute, Boston Children’s Hospital, and Harvard Medical School
- Peter C. Adamson, Chair of the Children’s Oncology Group (COG); Professor of Pediatrics and Pharmacology, University of Pennsylvania School of Medicine; Chief of the Division of Clinical Pharmacology and Therapeutics, Children’s Hospital of Philadelphia
- Lisa Bomgaars, Director of Clinical Research Operations, Texas Children’s Cancer and Hematology Centers
- Eduvigis Cruz-Arrieta, Assistant Clinical Professor of Medical Psychology in Psychiatry and Pediatrics, Columbia University
- Eric Kodish, Director of Cleveland Clinic’s Center for Ethics, Humanities, and Spiritual Care
- Robert “Skip” Nelson, Deputy Director and Senior Pediatric Ethicist in the Office of Pediatric Therapeutics, Office of the Commissioner, U.S. Food and Drug Administration
- A. Kim Ritchey, President, American Society of Pediatric Hematology/Oncology; Board of Directors, American Board of Pediatrics; Professor of Pediatrics, University of Pittsburgh School of Medicine
- Christine Grady, Chief, NIH Clinical Center Department of Bioethics
- I. Glenn Cohen, Assistant Professor, Harvard Law School and Co-Director, Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics
- Carol Taylor, Senior research scholar and professor of nursing, Kennedy Institute of Ethics at Georgetown University
Johns Hopkins Berman Institute of Bioethics
Working group contact:
Yoram Unguru, firstname.lastname@example.org