Do medical oncology patients and their support persons agree about end of life issues?

Background: The perceptions of those called on to make decisions on behalf of patients who lack capacity at the end of life must accurately reflect patient preferences. Aims: To establish the extent to which the views of medical oncology outpatients are understood by their support persons, specifically with regard to (i) preferred type and location of EOL care; (ii) preferred level of involvement in EOL decision making; and (iii) whether the patient has completed an advance care plan or appointed an enduring guardian. Methods: Adults with a confirmed cancer diagnosis and their nominated support persons were approached between September 2015 and January 2016 in the waiting room of an Australian tertiary referral clinic. Consenting participants completed a pen-and-paper survey. Nominated support persons answered the same questions from the patient’s perspective. Results: A total of 208 participants (39% of eligible dyads) participated. Observed agreement across the five outcomes ranged from 54% to 84%. Kappa values for concordance between patient-support person responses were fair to moderate (0.24 to 0.47) for enduring guardian, decision-making, advance care plan and care location outcomes. A slight level of concordance (k=0.15; 95% CI: -0.02, 0.32) was found for the type of care outcome. Conclusion: Relying on support persons’ views does not guarantee that patients’ actual preferences will be followed. Strategies that make patient preferences known to health care providers and support persons while they still have the capacity to do so is a critical next step in improving quality cancer care.