Article

Genetics in Medicine (2010) 12, 289–297; doi:10.1097/GIM.0b013e3181db82d9

What keeps you up at night? Genetics professionals' distressing experiences in patient care

Barbara A Bernhardt1,2, Rachel Silver3, Cynda Hylton Rushton4,5,6,7, Ellyn Micco8 and Gail Geller4,5,9,10

  1. 1Department of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
  2. 2Penn Center for the Integration of Genetic Healthcare Technologies, University of Pennsylvania, Philadelphia, Pennsylvania
  3. 3The Prenatal Diagnosis and Medical Genetics Program, Mount Sinai Hospital, Toronto, Canada
  4. 4Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland
  5. 5Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland
  6. 6School of Nursing, Johns Hopkins University, Baltimore, Maryland
  7. 7Harriet Lane Compassionate Care, Johns Hopkins Children Center, Baltimore, Maryland
  8. 8Department of Population Science, Fox Chase Cancer Center, Philadelphia, Pennsylvania
  9. 9Department of Health, Behavior and Society, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland
  10. 10Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland

Correspondence: Barbara Bernhardt, MS, CGC, Hospital of the University of Pennsylvania, Penn Tower, Suite 1115, 3400 Spruce Street, Philadelphia, PA 19104. E-mail: Barbara.bernhardt@uphs.upenn.edu.

Received 17 December 2009; Accepted 1 March 2010; Published online 8 April 2010.

Disclosure: The authors declare no conflicts of interest.

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Abstract

Purpose: To explore specific patient care experiences that genetics professionals associate with distress and the emotions engendered by those experiences.

Methods: We conducted semistructured telephone interviews with clinical geneticists, genetic counselors, and genetic nurses that focused on a single distressing experience.

Results: Fourteen clinical geneticists, 25 genetic counselors, and 14 nurses were interviewed. We categorized the situations that interviewees associated with distressing patient care experiences into seven major types: patient/family decisions (27% of total situations), giving bad news (17%), colleague behavior (15%), end-of-life issues (12%), unintended outcomes (12%), difficult patients (8%), and injustice/inhumanity (8%). Interviewees reported experiencing a variety of negative emotions during these situations, including anger, guilt, helplessness, and inadequacy.

Conclusions: The distress and resulting emotions experienced by genetic service providers must be acknowledged. Interventions are needed to assist the clinician in becoming self-aware by reflecting on experienced emotions, examining belief systems and values, and understanding the connection between their emotions and behavior. Involvement in mindfulness meditation, reflective writing, peer support groups or additional communication skill-based training could address this need. In addition, clinicians should seek ways to increase personal meaning derived from providing patient care.

Keywords:

burnout; genetic service providers; distress; countertransference; training