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13 - Talking about Dying

“Do Not Resuscitate” Orders and Goodbyes

Published online by Cambridge University Press:  05 April 2024

Robert M. Arnold
Affiliation:
The University of Pittsburgh School of Medicine, Pittsburgh
Anthony L. Back
Affiliation:
University of Washington Medical Center
Elise C. Carey
Affiliation:
Mayo Clinic, Minnesota
James A. Tulsky
Affiliation:
Dana-Farber Cancer Institute, Boston
Gordon J. Wood
Affiliation:
Northwestern Memorial Hospital, Chicago
Holly B. Yang
Affiliation:
Scripps Health, San Diego, California
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Summary

While most clinicians have experience discussing resuscitation, talking about dying requires the patient and family be willing to think about the medical treatment not working. Clinicians hesitate to bring up dying because they worry it will raise strong emotions, and they’re not sure what to do. Like REMAP, discussing code status requires a shared understanding of the “big picture”, responding to emotions, eliciting values, and making a recommendation about code status based on the medical reality and the individual patient’s values even if they differ from our own. The frame of “hope for the best, prepare for the worst” may help with the discussion. As people near the end of life, there are often questions that are hard for patients and families to ask, like what dying looks like, issues brought up by trauma or stigma, spiritual or existential concerns, or when the dying process is longer than anticipated. When clinicians create space for these sorts of concerns, we can address uncertainty and suffering that would have otherwise gone unspoken. Finally, being able to say goodbye to a patient requires insight and skill, but can be deeply meaningful for all involved.

Type
Chapter
Information
Navigating Communication with Seriously Ill Patients
Balancing Honesty with Empathy and Hope
, pp. 196 - 215
Publisher: Cambridge University Press
Print publication year: 2024

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References

Further Reading

Back, A. L. Arnold, R. M., Tulsky, J. A., Baile, W. F., and Fryer-Edwards, K. A., On saying goodbye: Acknowledging the end of the patient–physician relationship with patients who are near death. Ann Intern Med, 2005, 142(8): 682–5.CrossRefGoogle ScholarPubMed
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Gawande, Atul, Being Mortal: Medicine and What Matters in the End. New York, Metropolitan Books, 2014.Google Scholar
Hebert, R. S., Schultz, R., Copeland, V., and Arnold, R. M., What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. J Palliat Med, 2008, 11(3): 476–83.CrossRefGoogle ScholarPubMed
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Quill, T. E. and Cassel, C. K., Nonabandonment: A central obligation for physicians. Ann Intern Med, 1995, 122(5): 368–74.CrossRefGoogle ScholarPubMed
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Steinhauser, K. E., Clipp, E., and McNeilly, M., In search of a good death: Observations of patients, families, and providers. Ann Intern Med, 2000, 132(10): 825–32.CrossRefGoogle ScholarPubMed
Steinhauser, K. E., Voils, C. I., and Clipp, E. C., “Are you at peace?” One item to probe spiritual concerns at end of life. Arch Intern Med, 2006, 166(1): 101–05.CrossRefGoogle ScholarPubMed
von Gunten, C. F., Fast Facts and Concepts #149: Teaching the family what to expect when the patient is dying. www.mypcnow.org/fast-fact/teaching-the-family-what-to-expect-when-the-patient-is-dying/, 2015.Google Scholar

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