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December 2020; 10 (6) Research

Neurology clinicians' views on palliative care communication

“How do you frame this?”

April Zehm, Amanda M. Hazeltine, Joseph A. Greer, Lara Traeger, Margaret Nelson-Lowe, Kate Brizzi, Juliet Jacobsen
First published December 12, 2019, DOI: https://doi.org/10.1212/CPJ.0000000000000794
April Zehm
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Amanda M. Hazeltine
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Joseph A. Greer
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Lara Traeger
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Margaret Nelson-Lowe
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Kate Brizzi
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Juliet Jacobsen
Division of Palliative Care and Geriatric Medicine (AZ, AMH, KB, JJ), Department of Medicine, Massachusetts General Hospital; Harvard Medical School (AZ, JAG, LT, KB, JJ); Department of Psychiatry (JAG, LT, MN-L), Massachusetts General Hospital, Boston.
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Citation
Neurology clinicians' views on palliative care communication
“How do you frame this?”
April Zehm, Amanda M. Hazeltine, Joseph A. Greer, Lara Traeger, Margaret Nelson-Lowe, Kate Brizzi, Juliet Jacobsen
Neurol Clin Pract Dec 2020, 10 (6) 527-534; DOI: 10.1212/CPJ.0000000000000794

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Abstract

Background The communication process of preparing patients and families facing progressive neurodegenerative diseases for future illness has not been empirically elucidated; the goal of this qualitative study was to explore neurology interdisciplinary health professionals' communication experiences, including current approaches, facilitators, and challenges.

Methods Three focus groups were conducted with 22 clinicians representing a range of health professions from several multidisciplinary neurology outpatient clinics at a large academic medical center. A thematic analysis approach was used to develop a coding structure and identify overarching themes.

Results Neurology clinicians highlighted that in their practice, (1) conversations are triggered by acute events and practical needs; (2) conversations occur routinely but are rarely documented; (3) loss of patient capacity and resultant surrogate decision-making can be ethically fraught, especially in times of family conflict; (4) prognostic uncertainty, unfamiliarity with disease trajectories, and patient or surrogate avoidance pose communication challenges; and (5) generalist- and specialty-level palliative care roles should be better defined.

Conclusions There is a need for a systematic, structured approach to communication that can be applied early in the disease trajectory and considered when developing integrated neuro-palliative care programs.

Footnotes

  • Funding information and disclosures are provided at the end of the article. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

  • Received September 5, 2019.
  • Accepted November 6, 2019.
  • © 2019 American Academy of Neurology
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