Editor's Note: Commentary based on Sudore RL, Schillinger D, Katen MT, et al. Engaging diverse English- and Spanish-speaking older adults in advance care planning: the PREPARE randomized clinical trial. JAMA Intern Med 2018;178:1616-25.

Background: Advance care planning (ACP) is the process that supports adults at any stage of health in understanding and sharing their personal values and preferences for future medical care.¹ When completed, ACP increases the likelihood of receiving medical care aligned with patient values,² yet ACP documentation rates and engagement remain low.³ This is especially true for racially and ethnically diverse patient populations and non-English speakers.⁴ Therefore, an easy-to-read advance directive (AD) and a patient-directed, online ACP program called PREPARE For Your Care (PREPARE) were created in English and Spanish to address common barriers to quality ACP.⁵

Study Question: Can a free, patient-facing online program called PREPARE For Your Care (www.PrepareForYourCare.org) and an easy-to-read advance directive increase advance care planning documentation and engagement compared to an advance directive alone?

Funding: National Institutes of Health (NIH) National Institute on Aging (NIA) grant (R01AG045043) and a Patient-Centered Outcomes Research Institute (PCORI) award (CDR-1306-01500). Development of the PREPARE website was supported by the S.D. Becktel Jr. Foundation, the California Healthcare Foundation, and the National Palliative Care Research Center.

Methods:

Design: This was a comparative effectiveness randomized clinical trial. Staff were blinded for all follow-up measurements. Participants could not be blinded but were told they "had a 50-50 chance" of getting one of two ACP interventions and the alternative intervention was not described.

Inclusion Criteria: Participants were eligible if they were 55 years of age or older, spoke English or Spanish, had two or more chronic medical conditions, two or more primary care visits (i.e., established care), and two or more additional outpatient, inpatient or emergency department visits in the past year (i.e., a marker of illness severity).

Exclusion Criteria: Participants were excluded if they had dementia, moderate-to-severe cognitive impairment, blindness, deafness, delirium, psychosis, or active drug or alcohol abuse, lack of a telephone or were unable to answer informed consent teach-back questions within three attempts.

Exposure: Participants were randomized to the online program PREPARE plus an easy-to-read advance directive (PREPARE arm) or to an advance directive alone (AD-only).

Primary outcome(s): Documentation of new advance care planning (i.e. legal forms or documented discussions) at 15 months. Patient reported outcomes included advance care planning engagement at baseline, 1 week, 3 months, 6 months and 12 months using validated surveys.

Statistical Analysis: Intention-to-treat analyses were performed using mixed-effects logistic and linear regressions, controlling for time, health literacy, and baseline advance care planning, clustering by physician and stratifying by language.

Results: 986 participants (603 women and 383 men) were enrolled with a mean (SD) age of 63 (6.4) years. Nearly 40% had limited health literacy, 45% were Spanish-speaking, and participant retention was 86%. Compared to the AD-only arm, PREPARE resulted in higher ACP documentation in the medical record by chart review (43% vs. 33%; p < 0.001) and higher proportion of participants with ACP engagement improvement from baseline (98.1% vs. 89.5%; p < 0.001). Results remained significant among English speakers and Spanish speakers.

Conclusion: Both the easy-to-read advance directive and the patient-facing PREPARE program increased ACP documentation and engagement, with higher gains seen in the PREPARE arm. These novel tools may reduce barriers to advance care planning and may improve access to the ACP process for diverse English and Spanish speaking populations.

Limitations of Study: Despite the racially and ethnically diverse sample, participants were recruited from one integrated public-health delivery system in San Francisco, so generalizability may be limited. Although the intention of these tools is to be used at home, participants viewed materials in research offices with minimal staff assistance. Additional studies are needed to determine whether similar results may be obtained if materials are viewed at home.

Perspective:

As patients with cardiovascular disease grow older and more medically complex, a critical component of their chronic disease management is advance care planning. Yet, we know this important process is often neglected as physicians face resource and time constraints and patients face literacy, cultural and linguistic barriers. The development of decision-making tools to facilitate the ACP process needs to address these barriers and be designed for patients to use outside of the clinical encounter, at their own pace, and in a manner and language that they can understand.

The easy-to-read advance directive and PREPARE online program meet these challenges and are freely available in English and Spanish (www.PrepareForYourCare.org). Furthermore, the advance directives have been recently updated and legally validated in most US states. The PREPARE online program uses video stories and a step-by step guide through five important ACP steps: 1) choose a medical decision maker; 2) decide what matters most in life; 3) choose how much flexibility a medical decision maker will have for you; 4) tell others about your wishes; and 5) ask your medical providers the right questions. PREPARE tailors the content to the user through a series of guided questions and provides videos that model ACP behavior and communication.

For the aging cardiovascular patient population, declining physical and cognitive function pose unique challenges to treatment decisions that highlight the importance of early engagement in advance care planning. For example, discussions regarding continuation or deactivation of ICDs, de-prescribing to reduce the burden of polypharmacy, and life-sustaining treatment preferences are complex and often difficult for physicians, patients, and families.⁶ Furthermore, patient preferences may change over time and should be reassessed with changing clinical conditions.⁷ This study of diverse older adults showed that the novel PREPARE program and the easy-to-read advance directives can increase ACP documentation and engagement, even without clinician or system level input. The next steps for these novel patient resources are to promote their wide-spread dissemination and adoption, and implementation studies are currently underway.

References

1. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 2017;53:821-32.
2. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345.
3. Heyland DK, Barwich D, Pichora D, et al. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med 2013;173:778-87.
4. Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc 2002;50:182-90.
5. Sudore RL, Knight SJ, McMahan RD, et al. A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study. J Pain Symptom Manage 2014;47:674-86.
6. Schwartz JB, Schmader KE, Hanlon JT, et al. Pharmacotherapy in older adults with cardiovascular disease: report from an American College of Cardiology, American Geriatrics Society, and National Institute on Aging Workshop. J Am Geriatr Soc 2018. [Epub ahead of print]
7. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010;153:256-61.

Clinical Topics: Cardiovascular Care Team, Geriatric Cardiology, Sleep Apnea

Keywords: Geriatrics, Patient Preference, Palliative Care, Cognition, Intention to Treat Analysis, Advance Care Planning, Advance Directives, Physician-Patient Relations, Decision Making, Informed Consent, Chronic Disease, Dementia, Medical Records, Aging, Polypharmacy, Primary Health Care, Emergency Service, Hospital, Cardiovascular Diseases

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