How Do Patients and Caregivers in Advanced Illness Support One Another in Decision-Making for Patient Care? A Qualitative Interview Study of Patient and Caregiver Dyads in Specialist Palliative Care.

Abstract

Background: Caregivers in palliative care are tasked with supporting the patient in decision-making about treatment and care. However, how patients and their caregivers in palliative care support one another in the decision-making process is not fully understood.

Aim: To decipher how patients and caregivers in specialist palliative care support one another in decision-making about patient treatment and care.

Design: A qualitative study comprising semi-structured interviews. Data were thematically analyzed.

Setting/participants: Eleven patient-caregiver dyads (n = 22) were recruited from a large regional hospice service in Ireland providing specialist palliative care.

Results: Patients and caregivers felt they supported one another in decision-making by providing emotional support and coping as a unit. Open communication coupled with an understanding of each other's preferences helped patient-caregiver dyads navigate decision-making about the patient's treatment and care. Patients who made decisions independent of their caregiver did so to alleviate the burden for the caregiver and because they valued having control in decision-making about their care. Trust between the patient and caregiver made patients feel able to make decisions without counsel from their caregiver. Caregivers who advocated on behalf of the patient tended to make decisions with the patient. Shared decision-making comprised patient and caregiver making decisions together as a team with the opportunity to collectively re-examine and adjust their preferences for treatment and care.

Conclusions: This study identified that patients and caregivers in specialist palliative care can be emotionally supportive of one another in situations where they make decisions together about care and in situations where the patient makes decisions about care independent of their caregiver. These findings are relevant for health care professionals in palliative care who seek to promote emotional support between the patient and caregiver in discussions about treatment and care.