Patient–Caregiver Treatment Preference Discordance and Its Association With Caregiving Burden and Esteem

Abstract

Background and Objectives Many patient-caregiver dyads report conflicting treatment decisions regarding preferences for life extension treatments and symptom management. It is possible that this discordance will lead to negative psychological outcomes including lowered caregiving esteem and increased caregiver burden. However, the relationships between treatment discordance among dyads and caregiver psychological outcomes are not well studied among advanced cancer patients – a gap this study aims to fill. Research Design and Methods Outcome variables included caregiver burden and caregiving esteem, measured via a modified 4-domain Caregiver Reaction Assessment Scale (CRAS). The main independent variable was patient-caregiver treatment preference discordance, examined using questions adapted from an existing protocol. Analyses were conducted using multivariable regressions. Results A convenience sample of 285 patient-caregiver dyads were recruited from outpatient clinics at two tertiary hospitals in Singapore. The majority (60%) of patient-caregiver dyads reported discordant treatment preferences. Discordance in this study arose because caregivers wanted a balance between life extension and symptom management while patients preferred life-extending treatment. In multivariable analyses, discordance predicted caregiver burden arising from impact on caregiver schedule and health (β = 0.16, p = 0.07) and lack of family support (β = 0.13, p = 0.04). Discussion and Implications Theoretically, this study provided a more nuanced understanding of how dyad discordance may worsen the burdens felt by caregivers, and which aspects of their lives (i.e., burden due to impact of caregiver schedule and health and lack of family support) are most affected. Our findings can aid in establishing therapeutic interventions targeted towards improving communication skills and encouraging end-of-life discussions among patients, caregivers, and their healthcare providers. The importance of establishing and improving therapy programs specifically targeted towards caregivers was also underlined.

What is a Good Death? A Choice Experiment on Care Indicators for Patients at End of Life

“…We surveyed caregivers as proxies for those who were terminally ill, and within two years after the death of the care recipient. The perspective of caregivers is likely to differ from those of patients at EOL, 17 , 18 and surveying caregivers after they had time to reflect on the EOL experience, may generate biases in unknown directions. We also fielded the survey during the Covid-19 pandemic, which affected the death and dying experience for many people and perhaps also the bereavement experience.…”

Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey

“…A number of factors may explain these differences, such as (but not limited to) differences in perceived stakes of the decision including the severity of the patient's illness condition, patient preferences, family and cultural values, the perceived impact of the decisions on the caregiver's health, patientcaregiver discordance on decisions, unique challenges of the sociodemographic context (e.g., access to care, insurance) and the treatment decision-making conversation practices and communication skills of clinicians. 3,10,13 A study of the decision-making roles of 281 caregivers of patients with stage IV solid tumour cancers in Singapore by Ozdemir et al 10 reported that caregivers were more likely to be involved in decision-making if those decisions had a higher impact on the caregiver's finances, schedule and health. This underscores how caregiver roles may vary based on the perceived impact of patient treatment decisions on family members and their financial circumstances and health.…”

“…In most cases, patients consult with family members and close friends who know them well and are often greatly impacted by these decisions themselves. [1][2][3] These family and friend caregivers assume a variety of decision support roles in cancer treatment decision-making such as gathering information, providing emotional and psychosocial support, helping patients understand and process information, assisting with clarifying the patients' values and identifying decision points. 1,2,4,5 While identifying the various kinds of decision support roles (e.g., information gatherer, values and illness understanding discussant, option clarifier) that caregivers assume is becoming clearer, less is known proportions of how caregivers are partnering with their patients to make different treatment decisions.…”

“…When patients receive a cancer diagnosis, a number of decisions about treatment have to be navigated. In most cases, patients consult with family members and close friends who know them well and are often greatly impacted by these decisions themselves 1–3 . These family and friend caregivers assume a variety of decision support roles in cancer treatment decision‐making such as gathering information, providing emotional and psychosocial support, helping patients understand and process information, assisting with clarifying the patients' values and identifying decision points 1,2,4,5 …”

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life

“…[6][7][8][9] In this decision-making process, family caregivers often play integral roles. 10 However, caregivers often have different treatment goals than patients, 11,12 with some cross-sectional evidence indicating that caregivers typically prioritize life extension, while patients prioritize symptom management. [13][14][15][16] This discrepancy is concerning because it can result in patients receiving care incongruent with their own goals, particularly if they lack decision-making capacity.…”