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Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial

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Abstract

Trial tested effect of advance care planning on family/surrogates’ understanding of patients’ end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)—(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)—(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients’ treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (high→high transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, χ2 = 11·52, p = 0·01)], even as patients’ preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients’ treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3). Conversations matter.

Resumen

Este ensayo evaluó la comprensión de la familia/sustituto de las preferencias de tratamiento relacionado al final de la vida del paciente a lo largo del tiempo usando el FAmily CEntered (FACE) advance care planning (ACP) intervención. Un ensayo controlado aleatorio, multicentrico, con cegamiento de acceso con intención de tratar, de grupo paralelo, en clínicas de VIH ambulatorios basados en el hospital inscribrió a 449 participantes de 22 a 77 años durante Octubre de 2013 a Marzo de 2017. Pacientes viviendo con VIH/sustituto tomador de decisiones diadas fueron asignados aleatoriamente en una 2:1 proporción a dos semanales ~ 60 minuto sesiones ya sea FACE ACP (n = 155 diadas)-objetivos de cuidado conversaciones y finalización del directiva anticipada; o “Control” (n = 68 diadas) historia del desarrollo y consejos nutricionales. Familias/sustitutos del grupo de ACP fueron mas propensos a informar con precisión las preferencias de tratamiento de los pacientes a Tiempo 1 y 12 meses después de la intervención en comparación con los controles [“High””High” transiciones: 63·6% vs. 37·7% (diferencia = 25·9%, 95% CI: 11·3%, 40·4%, χ2 = 11·52, p = 0·01)], incluyendo cuando las preferencias de los pacientes cambiaron con el tiempo. En general, FACE ACP tuvo una influencia positiva en la compresión de los sustitutos de los deseos que los pacientes tenían para sus tratamientos al final de la vida, en comparación con los controles, al inicio del estudio y un año después de la intervención (64% vs. 38%, p = 0.01).

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Acknowledgements

We are deeply grateful to the patients and their surrogates who participated in this trial. We also thank our funders, the National Institute of Nursing Research (NINR)/National Institutes of Health (NIH) Award Number R01NR014-052–06 (no cost extension); NIH National Center for Advancing Translational Sciences CTSI-CN UL1RR031988; and our study sites and staff from: Children’s National Health System, MedStar Georgetown University Hospital, The George Washington Medical Faculty Associates, MedStar Washington Hospital Center, and the Washington DC Veterans Affairs Medical Center, all of which are members of District of Columbia-Center For AIDS Research (DC-CFAR). This research has been facilitated by the services and resources provided by the District of Columbia Center for AIDS Research, an NIH funded program (AI117970), which is supported by the following NIH Co-Funding and Participating Institutes and Centers: NIAID, NCI, NICHD, NHLBI, NIDA, NIMH, NIA, FIC, NIGMS, NIDDK, and OAR. These institutions were not involved in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript. This content is solely the responsibility of the authors and does not necessarily represent the official views of the NINR or the NIH or CTSI-CN. We thank the FACE Palliative Care Consortium, including David Parenti, Fred Gordon, Connie Trexler, as well as our consultants Bruce Rapkin, Bea Krauss and Linda Koenig, for their dedicated efforts toward the completion of this study. Special thanks also to our clinical coordinators: Brittney Lee, Jessica Gaines, Allison Kimmel from the Coordinating Center at Children's National; Ginny Levin formerly of George Washington University Medical Faculty Associates; and Chelsea Tanous formerly of Georgetown University Hospital.

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Authors and Affiliations

  1. Division of Adolescent and Young Adult Medicine, Children’s National, Center for Translational Research/Children’s Research Institute, Washington, DC, USA

    Maureen E. Lyon & Lawrence J. D’Angelo

  2. George Washington University School of Medicine and Health Sciences, Washington, DC, USA

    Maureen E. Lyon, Debra Benator, Lawrence J. D’Angelo & Jichuan Wang

  3. Washington DC Veterans Affairs Medical Center, Washington, DC, USA

    Leah Squires & Debra Benator

  4. MedStar: Health Research Institute and Washington Hospital Center, Washington, DC, USA

    Rachel K. Scott

  5. Respecting Choices, Coalition to Transform Advance Care Innovations, Washington, DC, USA

    Linda Briggs

  6. Medical Education, Children’s National, Washington, DC, USA

    Isabella Greenberg

  7. Division of Biostatistics & Study Methodology, Center for Translational Research/Children’s Research Institute, Washington, DC, USA

    Yao Iris Cheng & Jichuan Wang

  8. Division of Adolescent and Young Adult Medicine at Children’s National Health System, Center for Translational Research/Children’s Research Institute, 111 Michigan Avenue, N.W., Room M7658, Washington, DC, 20010-2970, USA

    Maureen E. Lyon

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  1. Maureen E. Lyon
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Correspondence to Maureen E. Lyon.

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The authors report no conflicts of interest.

Ethical Approval

The trial was approved by the ethics committees of all study sites (Institutional Review Boards). A Safety Monitoring Committee monitored the protocol yearly. All participants gave written informed consent. After written informed consent, participants received secondary eligibility screening. All procedures performed in this study were in accordance with the ethical standards of the institutional review boards and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Lyon, M.E., Squires, L., Scott, R.K. et al. Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial. AIDS Behav 24, 3359–3375 (2020). https://doi.org/10.1007/s10461-020-02909-y

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  • DOI: https://doi.org/10.1007/s10461-020-02909-y

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