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5 - Planning for the Future: Discussing What’s Important, Well Before a Crisis

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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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Most clinicians prefer that patients plan for their future illness care before things become urgent or they lose the ability to make decisions. Completing an advance directive form by itself does not always impact future care decisions. Rather than focusing on hypothetical specific treatment decisions in the future or the completion of forms, conversations early in serious illness focusing on what matters most to patients may help guide care decisions over time and prepare patients and families for future conversations about specifics in real time when things do progress. The key is to plan on multiple small conversations over time. A roadmap for having these early goals of care discussion is PAUSE (Pause to make time for the conversation, Ask permission to discuss the topic and explain why, Uncover values first (don’t lead with code status), Suggest selecting a surrogate, Expect emotion/End). Some patients shy away from considering a future state when their disease has worsened, and are not interested in talking about what matters to them. Exploring why using a motivational approach and focusing on your relationship may help plant the seed and make future conversations easier.

Navigating Communication with Seriously Ill Patients
Balancing Honesty with Empathy and Hope
, pp. 76 - 88
Publisher: Cambridge University Press
Print publication year: 2024

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Further Reading

Back, A. L., Arnold, R. M., Baile, W. F., Edwards, K. A., and Tulsky, J. A., The art of medicine: When praise is worth considering in a difficult conversation. Lancet, 2010, 11(97444): 866–7.Google Scholar
Chochinov, H. M., McClement, S., Hack, T., Thompson, G., Dufault, B., and Harlos, M., Eliciting personhood within clinical practice: Effects of patients, families, and health care providers. J Pain Symptom Manage, 2015, 49(6): 974–80.e2.CrossRefGoogle ScholarPubMed
Epstein, R.M., Hadee, T., Carroll, J., Meldrum, S. C., Lardner, J., and Shields, C. G., “Could this be something serious?” Reassurance, uncertainty, and empathy in response to patients’ expressions of worry. J Gen Intern Med, 2007, 22(12): 1731–9.Google ScholarPubMed
Hooper, S., Sabatino, C. P., and Sudore, R. L., Improving medical-legal advance care planning. J Pain Symptom Manage, 60(2): 487–94.Google Scholar
Jackson, V. A., Jacobsen, J., Greer, J. A., Pirl, W. F., Temel, J. S., and Back, A. L., The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. J Palliat Med, 2013, 16(8): 894900.CrossRefGoogle ScholarPubMed
Kowalski, C. P., McQuillan, D. B., Chawla, N., Lyles, C., Altschuler, A., Uratsu, C. S. 1, et al., “The hand on the doorknob”: Visit agenda setting by complex patients and their primary care physicians. J Am Board Fam Med, 2018, 31(1): 2937.CrossRefGoogle ScholarPubMed
Parry, R., Land, V., and Seymour, J., How to communicate with patients about future illness progression and end of life: A systematic review. BMJ Support Palliat Care, 2014, 4(4): 331–41.CrossRefGoogle ScholarPubMed
Pollack, K. I., Childers, J. W., and Arnold, R. M., Applying motivational interviewing techniques to palliative care communication. J Palliat Med, 2011, 14(5): 587–92.Google Scholar
Rodriguez, H. P., Anastario, M. P., Frankel, R. M., Odigie, E. G., Rogers, W. H., von Glahn, T., et al., Can teaching agenda-setting skills to physicians improve clinical interaction quality? A controlled intervention. BMC Medical Education, 2008, 8(3).CrossRefGoogle ScholarPubMed
Sudore, R. L. and Fried, T. R., Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Ann Intern Med, 2010, 153(4): 256–61.CrossRefGoogle ScholarPubMed
White, D. B. and Arnold, R. M., The evolution of advance directives. JAMA, 306(13): 1485–6.Google Scholar
Physicians’ Views Toward Advance Care Planning and End-of-life Care Conversations, PerryUndem Research/Communication. April 2016 (John A. Hartford, Cambia Health, California Health Care Foundations) Scholar

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