Collective decision-making dominates end-of-life care in Singapore

Singapore families navigate end-of-life (EOL) decisions through collective effort, which highlights the crucial role of family support and communication.

In a qualitative study, three themes emerged from interviews with 14 adult and spousal caregivers. These were understanding and accepting patient’s condition and options, achieving family consensus alongside ongoing reflection of patient and/or family’s wishes, and having a lead facilitator whose role is to enable communication and collaborative decision-making. [BMJ Public Health 2024;2:e000646]

Understanding and accepting

Many caregivers expressed that the opportunity to engage in EOL discussions with family members and doctors was essential for reaching a satisfactory decision. Positive decision-making experiences commonly featured attending doctors or medical teams who provided clear prognoses and offered informed recommendations.

Without a clear prognosis, or when it was delayed or unexpected, families struggled to reach consensus, resulting in uncertainty and prolonged decision-making. One respondent said, “I felt that maybe if I was able to go and talk to the doctor, it might have been slightly better like we could have changed to another drug quicker.”

Achieving family consensus

Caregivers also expressed satisfaction with EOL decisions when they achieved a sense of consensus and harmony within the family.

None of the caregivers reported a unilateral decision made by a single family member. Ongoing reflection and discussion of the values and preferences within a tight-knit family unit positively affected the eventual EOL decision-making process. These discussions allowed for the consideration of crucial factors such as financial implications and the caregiving burden associated with different options.

“Lead facilitator” rising up

Finally, caregivers highlighted the presence of a “lead facilitator,” a key individual who significantly shaped the EOL decision-making process. This person acted as a central point of contact, facilitating discussions between the patient and the broader caregiving network. They were responsible for coordinating information sharing and decision-making within the family, ensuring that a satisfactory EOL decision was reached.

Typically, the spouse assumed the role, especially when children were young. But when children were adults or in the absence of a spouse, adult children or siblings often stepped in. The reasons for assuming the role varied, including being the oldest, being male, being the most trusted by patient, being single with no other family commitments, and having an assertive and logical personality.

Hear, share, apply

“Our findings underscore the factors that significantly impact caregivers’ EOL decision-making experiences,” the authors said. They pointed out that these experiences could be negatively affected by (1) a lack of prior experience or domain knowledge, particularly for those new to EOL care; (2) unclear communication regarding prognosis, treatment, and care options; and (3) insufficient family reflection and communication, hindering the pursuit of consensus.

Meanwhile, the presence of a lead facilitator challenges the conventional use of terms such as “proxy” or “surrogate” decision-maker in literature on advance care planning. “These terms imply that there is just one other party involved, which is not reflective of a context where multilateral decision-making in the family is preferred,” they noted.

In supporting family caregivers who participate in making EOL decisions, the authors recommended interventions focusing on developing and improving skills in three key facilitation areas: hearing, sharing, and applying.

“Hear: caregivers should be supported in eliciting patients values where possible, and in centring them in their process of EOL decision-making; share: caregivers should be supported in sharing these values and subsequent patent choices with other caregivers and providers; apply: caregivers need adequate domain knowledge of the implications of various care choices so that they can appropriately apply the values in making EOL decisions,” they said.