Advance care planning: It is time to rethink our goals

Malhotra, Chetna

doi:10.1111/jgs.18511

Cited by 11 publications

(3 citation statements)

References 21 publications

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“…Findings from other studies suggest that patients in general have difficulty imagining preferences for EOL care and engaging in ACP if they do not have past EOL care experiences [ 46 , 63 ]. This is an obstacle intrinsic to patients, yet clinicians are responsible to educate patients about illness and what to expect as part of ACP preparing them for future decision-making [ 64 ]. What makes a lack of EOL care experiences a unique challenge for marginalized groups is that clinicians tend to stereotype and assume these communities do not engage in ACP due to religious, cultural, and/or personal beliefs, not because they do not know what to expect in EOL care.…”

Section: Discussionmentioning

confidence: 99%

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

Izumi,

Garcia,

Kualaau

et al. 2024

PLoS ONE

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Background Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations. Aim To describe how patients from marginalized populations experience and perceive ACP. Methods We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews. Results The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians’ biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP. Conclusion Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations.

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Section: Discussionmentioning

confidence: 99%

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

Izumi,

Garcia,

Kualaau

et al. 2024

PLoS ONE

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“…Alethea Yee 1,3 Chandrika Ramakrishnan 1 Sanam Naraindas Kaurani 1 Ivy Chua 1 Joshua Lakin 4 David Sim 5 Iswaree Balakrishnan 6 Vera Goh Jin Ling 7 Huang Weiliang 8 Ling Lee Fong 9 Kathryn I. Pollak 10 1 Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore 2 Program in Health Services and Systems Research, Duke-NUS Medical School, Singapore 3 National Cancer Centre Singapore, Singapore 4 Dana-Faber Cancer Institute, Boston, USA failure, incorporating mechanisms to revisit patients' care goals, and rarely involve caregivers. To develop and assess the usability and acceptability of a web-based advance care planning (ACP) decision aid named "My Voice", tailored for patients with heart failure and their caregivers.…”

Section: Table Of Contentsmentioning

confidence: 99%

“…3,4 This, in turn, equips patients, caregivers, and healthcare providers to be better prepared for making in-the-moment healthcare decisions, emphasizing "preparation" rather than "planning" as an objective for ACP. 5 This emphasis on preparation is crucial, considering that most patients and caregivers are often unprepared for making these decisions. 6 Despite these acknowledged benefits, ACP completion rates remain low globally.…”

Section: Introductionmentioning

confidence: 99%

Empowering patients with heart failure and their caregivers: Development and usability of the “My Voice” advance care planning website (Preprint)

Malhotra,

Yee,

Ramakrishnan

et al. 2024

Preprint

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BACKGROUND Web-based advance care (ACP) interventions offer a promising solution to improve ACP engagement. However, there is lack of web-based ACP decision aids tailored for patients with heart failure, incorporating mechanisms to revisit patients’ care goals, and rarely involve caregivers. OBJECTIVE To develop and assess the usability and acceptability of a web-based advance care planning (ACP) decision aid named “My Voice”, tailored for patients with heart failure and their caregivers. METHODS The study team and advisory board co-developed the content for both patient and caregiver modules in “My Voice”. Employing a mixed methods approach, we iteratively tested usability and acceptability, incorporating feedback from patients, caregivers, and healthcare providers. RESULTS We interviewed 30 participants (11 patients, 9 caregivers, and 10 healthcare providers). Participants found the website easy to navigate, with simple and clear content facilitating communication of patients’ values and goals. They also appreciated that it allowed them to revisit their care goals periodically. Feedback prompted revisions to enhance user-friendliness for older patients, reduce wordiness, and increase empathy. The website met usability thresholds for all participant groups. Patients and caregivers’ ratings met acceptability thresholds for all items; healthcare providers’ ratings met acceptability thresholds for 11 of the 15 items. CONCLUSIONS “My Voice” shows promise as a tool for patients with heart failure to initiate and revisit ACP conversations with providers and caregivers. We will evaluate its efficacy in improving patient and caregiver outcomes in a randomized controlled trial. CLINICALTRIAL Not applicable

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