How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study.

J Nicholas Dionne-Odom,Gabrielle B Rocque,Nataliya V Ivankova,Amber E Barnato,Michelle Y Martin,Rachel Wells,Yasemin E Turkman,Richard A Taylor,Deborah Ejem,Marie A Bakitas,Matthew Kenny,Mojtaba Vaismoradi

doi:10.1371/journal.pone.0212967

Abstract

AimsNumerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.MethodsQualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach.FindingsCaregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers.ConclusionsThese findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

Highlights

In 2018 alone, there were over 600,000 U.S individuals who were in their last year of life due to an advanced stage cancer [1]
Understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making
In a national sample of over 5,200 newly-diagnosed cancer patients, 49.4% reported that they shared decisions with family members and 22.1% reported having elicited at least some input on decisions

Summary

Aims

Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. Data Availability Statement: In order to protect interviewee privacy, data cannot be shared publicly. Data are available by request to the corresponding author or by contacting the University of Alabama at Birmingham Institutional Review Board for researchers who meet the criteria for access to confidential data. Interested researchers can contact the UAB IRB at 205-934-3789.

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