Do Caregivers of Asian Patients with Advanced Cancer Help or Hinder Patient Understanding of Illness and Involvement in Decision Making?

Abstract

Purpose

It is unclear whether caregivers help or hinder patients’ involvement in decision making and understanding of illness. We thus investigated the extent to which caregivers’ preferred level of patient involvement in decision making and understanding of treatment goals are associated with those of patients.

Methods

We used survey data from 229 patients with metastatic cancer and their family caregivers living in Singapore spanning 2 y prior to the patient’s death. We used mixed-effects regressions to investigate the associations between 1) caregiver-preferred level of patient involvement (t_-1) and patient preferred and perceived level of involvement in decision making at subsequent assessments (t₁) and 2) patient and caregiver understanding of treatment goals at the same assessments (t₁).

Results

Caregivers who preferred higher levels of patient involvement in decision making at t₋₁ were more likely to have patients who also preferred higher levels of involvement (odds ratio [OR] = 1.19; P = 0.03) and who perceived experiencing higher levels of involvement in decision making (OR = 1.24; P < 0.01) at t₁. Compared with an uncertain understanding of treatment goals, caregivers who had an inaccurate understanding at t₁ were more likely to have patients who had an inaccurate understanding (relative risk ratio [RRR] = 8.56; P = 0.03), and caregivers who had an accurate understanding at t₁ were more likely to have patients with an accurate understanding (RRR = 3.02; P = 0.01) at t₁.

Conclusion

Our findings suggest that caregiver preferences for patient involvement in decision making and understanding of treatment goals are significantly associated with those of patients. Enhancing caregiver education and involvement may be pivotal in improving patient participation and comprehension in the context of metastatic cancer care.

Highlights

• Patients of caregivers who preferred higher levels of patient involvement in decision making at earlier time points were more likely to prefer and experience higher levels of involvement in decision making at subsequent assessments.

• Patients of caregivers with an inaccurate understanding of treatment goals were more likely to have an inaccurate understanding, while patients of caregivers with an accurate understanding were also more likely to have an accurate understanding.