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8 - Goals of Care in Late-Stage Disease

Uncovering the Big Picture Amidst Fear and Failure

Published online by Cambridge University Press:  05 April 2024

Robert M. Arnold
The University of Pittsburgh School of Medicine, Pittsburgh
Anthony L. Back
University of Washington Medical Center
Elise C. Carey
Mayo Clinic, Minnesota
James A. Tulsky
Dana-Farber Cancer Institute, Boston
Gordon J. Wood
Northwestern Memorial Hospital, Chicago
Holly B. Yang
Scripps Health, San Diego, California
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When prolonging life with acceptable quality of life becomes difficult, goals of care discussion are necessary. For clinicians and patients, the discontinuation of disease-modifying therapy can feel like a failure. This can lead clinicians to offer treatments we don’t believe are good options or offering treatment on the condition that our patients make an improbable recovery. The roadmap for late stage goals of care discussions is REMAP. Reframe why the status quo isn’t working, expect emotion and respond with empathy, map big picture values, align with the patient’s values, and finally plan medical treatments based on what’s important to your patient. Some things to note: Mapping thoroughly will help you make sure you don’t miss something important. A useful shift in thinking for many clinicians is first talking about what you will do before talking about what should be stopped or you won’t offer. And, clearly linking your recommendations to the patient’s values will help your proposed plan be more acceptable. By grounding ourselves in what is medically possible and using the patient’s values to guide our next steps, we can cocreate a plan that is both possible and meaningful.

Navigating Communication with Seriously Ill Patients
Balancing Honesty with Empathy and Hope
, pp. 116 - 135
Publisher: Cambridge University Press
Print publication year: 2024

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Further Reading

Back, A. L. and Arnold, R. M., “Isn’t there anything more you can do?”: When empathic statements work, and when they don’t. J Palliat Med, 2013, 16(11): 1429–32.CrossRefGoogle ScholarPubMed
Back, A. L., Trinidad, S. B., Hopley, E. K., and Edwards, K. A., Reframing the goals of care conversation: “We’re in a different place.” J Palliat Med, 2014, 17 (9): 1019–24.CrossRefGoogle Scholar
Back, A. L, Bauer-Wu, S. M., Rushton, C. H., and Halifax, J., Compassionate silence in the patient-clinician encounter: A contemplative approach. J Palliat Med, 2009, 12(12): 1113–17.CrossRefGoogle ScholarPubMed
Childers, J. W., Back, A. L., Tulsky, J. A., and Arnold, R. M., REMAP: A framework for goals of care conversations. J Oncol Pract, 2017, 13(10): 844–50.CrossRefGoogle ScholarPubMed
Deep, K. S., Griffith, C. H., and Wilson, J. F., Communication and decision making about life-sustaining treatment: Examining experiences of resident physicians and seriously ill hospitalized patients. J Gen Intern Med, 23(11): 1177–82.Google Scholar
Flint, L. A., David, D. J., and Smith, A. K., Rehabbed to death. New Engl J Med, 2019, 380: 408–09.CrossRefGoogle ScholarPubMed
Leiter, R. and Tulsky, J. A., Willing to wait for it: Time-limited trials in the ICU. JAMA Intern Med, 2021, 181(6): 795–6.CrossRefGoogle ScholarPubMed
Meier, D. E., Back, A. L., and Morrison, R. S., The inner life of physicians and care of the seriously ill. JAMA, 2001, 286(23): 3007–14.CrossRefGoogle ScholarPubMed
October, T. W., Dizon, Z. B., Arnold, R. M., and Rosenberg, A. R., Characteristics of physician empathetic statements during pediatric intensive care conferences with family members: A qualitative study. JAMA Netw, 2018; 1(3): e180351.CrossRefGoogle ScholarPubMed
Pollak, K. I., Arnold, R. M., Jeffries, A., et al., Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol, 2007, 25(36): 5748–52.CrossRefGoogle ScholarPubMed
Quill, T. E., Arnold, R. M., and Platt, F., “I wish things were different”: Expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med, 2001, 135(7): 551–5.CrossRefGoogle ScholarPubMed
Quill, T. E. and Holloway, R., Time-limited trials near end of life. JAMA, 2011, 306(13): 1483–4.CrossRefGoogle Scholar
Rabinowitz, T. and Peirson, R., “Nothing is wrong, doctor”: Understanding and managing denial in patients with cancer. Cancer Invest, 24(1): 6876.CrossRefGoogle Scholar
Reinke, L. F., et al., Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: Themes identified by patients, families, and clinicians. J Palliat Med, 2008, 11(4): 601–09.CrossRefGoogle ScholarPubMed
Schofield, P., et al., “Would you like to talk about your future treatment options?” Discussing the transition from curative cancer treatment to palliative care. Palliat Med, 2006, 20(4): 397406.CrossRefGoogle ScholarPubMed
Tulsky, J. A., Arnold, R. M., Alexander, S. C., et al., Enhancing communication between oncologists and patients with a computer-based training program: A randomized trial. Ann Intern Med, 2010, 155(9): 593601.CrossRefGoogle Scholar

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