Advance Care Planning in Serious Illness: A Narrative Review

doi:10.1016/j.jpainsymman.2022.08.012

Review

. 2023 Jan;65(1):e63-e78.

doi: 10.1016/j.jpainsymman.2022.08.012. Epub 2022 Aug 24.

Advance Care Planning in Serious Illness: A Narrative Review

William E Rosa¹, Shigeko Izumi², Donald R Sullivan³, Joshua Lakin⁴, Abby R Rosenberg⁵, Claire J Creutzfeldt⁶, Debbie Lafond⁷, Jennifer Tjia⁸, Valerie Cotter⁹, Cara Wallace¹⁰, Danetta E Sloan¹¹, Dulce Maria Cruz-Oliver¹², Susan DeSanto-Madeya¹³, Rachelle Bernacki⁴, Thomas W Leblanc¹⁴, Andrew S Epstein¹⁵

Affiliations

¹ Department of Psychiatry and Behavioral Sciences (W.E.R.), Memorial Sloan Kettering Cancer Center, New York, New York. Electronic address: rosaw@mskcc.org.
² School of Nursing (S.I.), Oregon Health and Science University, Portland, Oregon.
³ Division of Pulmonary and Critical Care Medicine (D.R.S.), School of Medicine, Oregon Health and Science University, Portland, Oregon.
⁴ Department of Psychosocial Oncology and Palliative Care (J.L., R.B.), Dana-Farber Cancer Institute, Boston, Massachusetts.
⁵ Division of Hematology-Oncology, Department of Pediatrics (A.R.R.), University of Washington School of Medicine, Seattle, Washington; Palliative Care and Resilience Lab (A.R.R.), Seattle Children's Research Institute, Seattle, Washington.
⁶ Department of Neurology (C.J.C.), University of Washington, Seattle, Washington.
⁷ Pediatric and Neonatal Needs Advanced (PANDA) Education Consultants (D.L.).
⁸ Chan Medical School, University of Massachusetts (J.T.), Worcester, Massachusetts.
⁹ School of Nursing, Johns Hopkins University (V.C.), Baltimore, Maryland; School of Medicine, Johns Hopkins University (V.C.), Baltimore, Maryland.
¹⁰ College for Public Health and Social Justice (C.W.), Saint Louis University, St. Louis, Missouri.
¹¹ Department of Health (D.E.S.), Behavior and Society, Johns Hopkins University, Baltimore, Maryland.
¹² Geriatric Medicine and Gerontology (D.M.C.O.), Beacham Center for Geriatric Medicine, Johns Hopkins Medicine, Baltimore, Maryland.
¹³ Connell School of Nursing (S.D.M.), Boston College, Boston, Massachusetts.
¹⁴ Department of Medicine (T.W.L.), Duke University School of Medicine, Durham, North Carolina.
¹⁵ Department of Medicine (A.S.E.), Memorial Sloan Kettering Cancer Center, New York, New York.

PMID: 36028176
PMCID: PMC9884468
DOI: 10.1016/j.jpainsymman.2022.08.012

Review

Advance Care Planning in Serious Illness: A Narrative Review

William E Rosa et al. J Pain Symptom Manage. 2023 Jan.

. 2023 Jan;65(1):e63-e78.

doi: 10.1016/j.jpainsymman.2022.08.012. Epub 2022 Aug 24.

Authors

Affiliations

¹ Department of Psychiatry and Behavioral Sciences (W.E.R.), Memorial Sloan Kettering Cancer Center, New York, New York. Electronic address: rosaw@mskcc.org.
² School of Nursing (S.I.), Oregon Health and Science University, Portland, Oregon.
³ Division of Pulmonary and Critical Care Medicine (D.R.S.), School of Medicine, Oregon Health and Science University, Portland, Oregon.
⁴ Department of Psychosocial Oncology and Palliative Care (J.L., R.B.), Dana-Farber Cancer Institute, Boston, Massachusetts.
⁵ Division of Hematology-Oncology, Department of Pediatrics (A.R.R.), University of Washington School of Medicine, Seattle, Washington; Palliative Care and Resilience Lab (A.R.R.), Seattle Children's Research Institute, Seattle, Washington.
⁶ Department of Neurology (C.J.C.), University of Washington, Seattle, Washington.
⁷ Pediatric and Neonatal Needs Advanced (PANDA) Education Consultants (D.L.).
⁸ Chan Medical School, University of Massachusetts (J.T.), Worcester, Massachusetts.
⁹ School of Nursing, Johns Hopkins University (V.C.), Baltimore, Maryland; School of Medicine, Johns Hopkins University (V.C.), Baltimore, Maryland.
¹⁰ College for Public Health and Social Justice (C.W.), Saint Louis University, St. Louis, Missouri.
¹¹ Department of Health (D.E.S.), Behavior and Society, Johns Hopkins University, Baltimore, Maryland.
¹² Geriatric Medicine and Gerontology (D.M.C.O.), Beacham Center for Geriatric Medicine, Johns Hopkins Medicine, Baltimore, Maryland.
¹³ Connell School of Nursing (S.D.M.), Boston College, Boston, Massachusetts.
¹⁴ Department of Medicine (T.W.L.), Duke University School of Medicine, Durham, North Carolina.
¹⁵ Department of Medicine (A.S.E.), Memorial Sloan Kettering Cancer Center, New York, New York.

PMID: 36028176
PMCID: PMC9884468
DOI: 10.1016/j.jpainsymman.2022.08.012

Abstract

Context: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility.

Objective: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness.

Methods: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care.

Results: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations.

Conclusions: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

Keywords: Advance care planning; advance directives; communication; end-of-life; goal-concordant care; palliative care; patient-centered care; serious illness.

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Conflict of interest statement

Disclosure/Conflict of Interest Statement:

All authors are members of the Cambia Health Foundation Sojourns Scholars Leadership Development Program Advance Care Planning Special Interest Group. The views expressed in this manuscript rest solely with the authors and do not reflect the views, opinions, position, or endorsement of Cambia Health Foundation. These authors have no other conflicts of interest to disclose.

Figures

**Figure 1.**
‘Building Block’ Approach to Advance Care Planning Throughout the Serious Illness Continuum.

See this image and copyright information in PMC

Comment in

Response to Advance Care Planning in Serious Illness: A Narrative Review.
Harris D, Neuendorf K. Harris D, et al. J Pain Symptom Manage. 2023 Jun;65(6):e767-e768. doi: 10.1016/j.jpainsymman.2023.02.318. J Pain Symptom Manage. 2023. PMID: 37179102 No abstract available.

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References

1. Ahluwalia SC, Levin JR, Lorenz KA, Gordon HS. Missed opportunities for advance care planning communication during outpatient clinic visits. J Gen Intern Med. 2012;27(4):445–451. doi:10.1007/s11606-011-1917-0 - DOI - PMC - PubMed
1. Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients: A Qualitative Study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193 - DOI - PMC - PubMed
1. Bernacki RE, Block SD. Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994. doi:10.1001/jamainternmed.2014.5271 - DOI - PubMed
1. Back AL, Fromme EK, Meier DE. Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values. J Am Geriatr Soc. 2019;67(S2):S435–S441. doi:10.1111/jgs.15709 - DOI - PubMed
1. Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. Journal of Pain and Symptom Management. 2017;53(5):821–832.e1. doi:10.1016/j.jpainsymman.2016.12.331 - DOI - PMC - PubMed

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[1] Ahluwalia SC, Levin JR, Lorenz KA, Gordon HS. Missed opportunities for advance care planning communication during outpatient clinic visits. J Gen Intern Med. 2012;27(4):445–451. doi:10.1007/s11606-011-1917-0 - DOI - PMC - PubMed

[2] Ahluwalia SC, Levin JR, Lorenz KA, Gordon HS. Missed opportunities for advance care planning communication during outpatient clinic visits. J Gen Intern Med. 2012;27(4):445–451. doi:10.1007/s11606-011-1917-0 - DOI - PMC - PubMed

[3] Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients: A Qualitative Study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193 - DOI - PMC - PubMed

[4] Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients: A Qualitative Study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193 - DOI - PMC - PubMed

[5] Bernacki RE, Block SD. Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994. doi:10.1001/jamainternmed.2014.5271 - DOI - PubMed

[6] Bernacki RE, Block SD. Communication About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994. doi:10.1001/jamainternmed.2014.5271 - DOI - PubMed

[7] Back AL, Fromme EK, Meier DE. Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values. J Am Geriatr Soc. 2019;67(S2):S435–S441. doi:10.1111/jgs.15709 - DOI - PubMed

[8] Back AL, Fromme EK, Meier DE. Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values. J Am Geriatr Soc. 2019;67(S2):S435–S441. doi:10.1111/jgs.15709 - DOI - PubMed

[9] Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. Journal of Pain and Symptom Management. 2017;53(5):821–832.e1. doi:10.1016/j.jpainsymman.2016.12.331 - DOI - PMC - PubMed

[10] Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. Journal of Pain and Symptom Management. 2017;53(5):821–832.e1. doi:10.1016/j.jpainsymman.2016.12.331 - DOI - PMC - PubMed

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Advance Care Planning in Serious Illness: A Narrative Review

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Advance Care Planning in Serious Illness: A Narrative Review

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