Traditional Advance Directives Undermine Advance Care Planning (2024)

Download PDF

Select Your Interests

Research Letter

Catherine L.Auriemma,MD, MS1,2,3; HelenO’Donnell,BS4; TamarKlaiman,PhD, MPH1; et al JuliaJones5; ZoeBarbati,BA6; EdaAkpek,MPH6; Scott D.Halpern,MD, PhD1,2,3

Author Affiliations Article Information

Advance directives (ADs) are typically construed as legal documents in which individuals may identify a health care proxy and denote future care preferences. Some scholars view ADs as an important component of advance care planning (ACP), a process by which patients come to understand and share values, life goals, and preferences for future care.¹ Advance directives and ACP are even viewed as interchangeable constructs, such as in literature reviews that suggest these approaches are not associated with improved delivery of goal-concordant care, reduced aggressive end-of-life care, or higher quality of life for patients and families.² By contrast, it has been suggested that traditional ADs might actually undermine robust ACP. Because clinicians and researchers have recently called for complete abandonment of efforts to promote or even improve on ACP,³ it is essential to better define the relationship between AD completion and the elicitation, clarification, and documentation of the patient’s goals and values. Therefore, we explored the perspectives of seriously ill patients on ADs and ACP.

We conducted a qualitative study using semistructured interviews with community-dwelling adults after being discharged to home from 1 of 2 urban, academic hospitals from July 31, 2020, to September 30, 2020. Participants were English-speaking, 65 years of age or older, and had been admitted for a chronic medical illness, such as cancer, heart failure, or pulmonary disease. A multidisciplinary team developed and piloted the interview guide. Telephone interviews were recorded and transcribed. Participants self-reported demographic information. An initial codebook was developed inductively, and transcripts were analyzed using content analysis with constant comparison techniques.⁴ Two coders established strong interrater reliability (κ = 0.83), with 6 (21%) interviews double-coded. The institutional review board at the University of Pennsylvania approved this research, and participants provided verbal informed consent. Additional details are available in the eMethods in the Supplement).

Thematic saturation was achieved after 29 interviews. Participants’ median (interquartile range) age was 72 (69-75) years. Approximately half (52%) of the participants were women; almost half (48%) did not identify as White; and 20 (69%) reported having completed an AD.

From among the 20 participants who had completed ADs, several key themes emerged. First, participants described completing generic forms that captured few details, often with the assistance of a lawyer rather than a clinician or family member. Second, participants were unable to recall the details of their completed ADs and did not describe revisiting the content of their ADs after the original completion (Box 1). Third, the existence of an AD, regardless of the setting in which it was completed or its content, was commonly cited as a reason not to have or need a goals-of-care conversation with clinicians or family (Box 2).

The findings of this study suggest that AD completion should not be viewed as the equivalent to engaging in ACP; indeed, the former may obstruct the goals of the latter. The participants’ statements suggest that the content of an AD is typically not based on deeply held values or nuanced beliefs. Furthermore, participants demonstrated a “set it and forget it” mentality toward ADs, revealing that AD completion often lessened the patient’s willingness to engage in more nuanced conversations about their current clinical status. These findings help to explain why structured interventions, including written ADs⁵ and videos,⁶ have conferred no benefits in carefully designed randomized clinical trials. These findings also demonstrate the importance of distinguishing between AD completion and robust goals-of-care conversations when interpreting calls to “end ACP.”³

By enrolling older English-speaking patients from a single health system, these study findings may not be generalizable to younger populations or different cultural backgrounds and geographic areas. Although we used data saturation to define the sample size in this study, the relatively small sample may be another limitation.

This study provides important evidence to help reconcile differing perspectives on the value of ACP. Specifically, the perspectives of these 20 patients suggest that research sponsors and policy makers should continue to support efforts to improve the quality and frequency of goals-of-care conversations. Conversely, efforts to promote AD completion or to facilitate the AD process without prioritizing goals-of-care conversations should be halted.

Accepted for Publication: March 2, 2022.

Published Online: April 25, 2022. doi:10.1001/jamainternmed.2022.1180

Corresponding Author: Catherine L. Auriemma, MD, MS, PAIR Center, University of Pennsylvania, 300 Blockley Hall, 423 Guardian Dr, Philadelphia, PA 19104-6021 (catherine.auriemma@pennmedicine.upenn.edu).

Author Contributions: Dr Auriemma had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Auriemma, O’Donnell, Klaiman, Halpern.

Acquisition, analysis, or interpretation of data: Auriemma, O’Donnell, Klaiman, Jones, Barbati, Akpek.

Drafting of the manuscript: Auriemma, O’Donnell, Klaiman, Jones, Barbati, Halpern.

Critical revision of the manuscript for important intellectual content: Auriemma, O’Donnell, Klaiman, Jones, Barbati, Akpek.

Statistical analysis: O’Donnell.

Obtained funding: Auriemma.

Administrative, technical, or material support: O’Donnell, Klaiman, Barbati, Halpern.

Supervision: Auriemma, Klaiman, Akpek.

Other—transcribing data and offering feedback during focus groups: Jones.

Conflict of Interest Disclosures: None reported.

Funding: Financial support for this study was provided through a Quartet Pilot Research Award funded by the Center for Health Incentives and Behavioral Economics and the PAIR Center at the University of Pennsylvania. Dr Auriemma is supported by a US National Institutes of Health’s (NIH) National Heart, Lung, and Blood Institute training grant (No. T32HL098054) and an NIH Loan Repayment Program Award (No. L30HL154185).

Role of the Funder: The PAIR Center, NIH, and University of Pennsylvania had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the University of Pennsylvania or the NIH.