An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD

Background Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP. Study Design Qualitative study. Setting & Participants Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP (“not commenced,” “in progress,” or “completed”) from 3 renal services. Methodology Semistructured interviews. Analytical Approach Transcripts were analyzed using thematic analysis. Results 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers’ capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest). Limitations Only English-speaking patients/caregivers participated in the interview. Conclusions ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient’s illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions. Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP. Qualitative study. Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP (“not commenced,” “in progress,” or “completed”) from 3 renal services. Semistructured interviews. Transcripts were analyzed using thematic analysis. 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers’ capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest). Only English-speaking patients/caregivers participated in the interview. ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient’s illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.