Method: A discrete choice experiment was administered to 138 patients with advanced cancers and their caregivers in which they were asked to choose between two EOL care scenarios. Each scenario was described through 7 attributes with between 2 and 4 levels for each: severity of pain, amount of care required from family-members or friends, expected length of survival, quality of health care experience, expected cost of treatment from diagnosis to death, source of payment, and place of death. Ten scenarios were presented to each respondent. Annual willingness to pay (WTP) for specific EOL improvements was estimated for patients and their caregivers. Attribute importance was assessed for each respondent and proportion of dyads in which patients and caregivers matched on their top and bottom ranked attributes was calculated.
Result: Caregivers had a greater WTP for specific EOL improvements compared to patients. Only 28% of the patient-caregiver dyads matched on their topmost EOL attribute, which was most commonly place of death. Similarly, 27% of the dyads matched on their bottom ranked attribute, which was most commonly care required from family-members or friends.
Conclusion: Patient’s priorities for EOL treatments systematically differ from those of their caregivers. As a result, caregivers are likely to make decisions that are not consistent with the patient’s wishes. To the extent possible, physicians should work to ensure that patient’s preferences are elicited as opposed to relying on the recommendations of caregivers when it comes to EOL treatment.