Genetically Targeted Therapy, Moral Injury and the Role of Faith
Jaime Twanow, MD, Assistant Professor of Clinical Pediatrics, Section Chief of the Division of Child Neurology, and Director Epilepsy Transition Clinic, Nationwide Children's Hospital, Columbus, OH; Anne Connolly, MD, Division Chief, Professor of Pediatrics and Neurology, Nationwide Children's Hospital and The Ohio State University College of Medicine; and Mary Lynn Dell, MD, Professor of Psychiatry and Neurobehavioral Sciences; Division Chief, Child & Adolescent Psychiatry, University of Virginia
Genetically targeted therapies for previously fatal diagnoses have led new hope, but also to deep disappointment when outcomes fall short of perfect. Groundbreaking advances have markedly changed the management of diseases including Spinal Muscular Atrophy (SMA), Duchenne Muscular Dystrophy (DMD) and Cystic Fibrosis (CF), permanently altering the disease course for these children. Despite improving both quantity and quality of life, these therapies may not be curative, and may have long term impacts that cannot presently be fully understood. These cutting-edge interventions introduce prognostic uncertainty, creating an ethically complicated course that is challenging for the patients, their families and their medical and spiritual caregivers to navigate.
Physicians and nurses who care for medically and ethically complex patients often struggle to meet the medical and psychological/emotional needs of their patients. These struggles may have a profound effect on both the work and home lives of these providers. In this piece, we will discuss the concept, triggers and symptoms of moral injury, an idea that is resonating through medicine. There is a growing understanding of the fact that physicians are significantly and permanently psychologically impacted by their patients’ diagnoses and outcomes, particularly when they are providing care in a state of ongoing uncertainty. Research and efforts in this field with recommendations for prevention and management of moral injury will be reviewed, with a focus on the spiritual disruption associated with moral injury, and the role that faith can play in recovery.
References:
Day P, Lawson J, Mantri S, Jain A, Rabago D, Lennon R. Physician moral injury in the context of moral, ethical and legal codes. J Med Ethics. Jul 21 2021;doi:10.1136/medethics-2021-107225
Fleming WH. Complex Moral Injury: Shattered Moral Assumptions. J Relig Health. Apr 2022;61(2):1022-1050. doi:10.1007/s10943-022-01542-4
Nieuwsma JA, Smigelsky MA, Grossoehme DH. Introduction to the special issue "Moral injury care: Practices and collaboration". J Health Care Chaplain. 2022;28(sup1):S3-S8. doi:10.1080/08854726.2022.2047564
Physicians and nurses who care for medically and ethically complex patients often struggle to meet the medical and psychological/emotional needs of their patients. These struggles may have a profound effect on both the work and home lives of these providers. In this piece, we will discuss the concept, triggers and symptoms of moral injury, an idea that is resonating through medicine. There is a growing understanding of the fact that physicians are significantly and permanently psychologically impacted by their patients’ diagnoses and outcomes, particularly when they are providing care in a state of ongoing uncertainty. Research and efforts in this field with recommendations for prevention and management of moral injury will be reviewed, with a focus on the spiritual disruption associated with moral injury, and the role that faith can play in recovery.
References:
Day P, Lawson J, Mantri S, Jain A, Rabago D, Lennon R. Physician moral injury in the context of moral, ethical and legal codes. J Med Ethics. Jul 21 2021;doi:10.1136/medethics-2021-107225
Fleming WH. Complex Moral Injury: Shattered Moral Assumptions. J Relig Health. Apr 2022;61(2):1022-1050. doi:10.1007/s10943-022-01542-4
Nieuwsma JA, Smigelsky MA, Grossoehme DH. Introduction to the special issue "Moral injury care: Practices and collaboration". J Health Care Chaplain. 2022;28(sup1):S3-S8. doi:10.1080/08854726.2022.2047564