Dying patients' choices not always aligned to caregivers'

Patients with advanced cancer or other life limiting illnesses often have to consider how much money they are willing to spend on high cost treatments that result in only moderate improvements in length or quality of life. These decisions are very difficult for patients to make, and in some cases the decision is entirely deferred to a family caregiver.

Past research has shown that in addition to extending life, being free of pain and dying at home are important considerations for people nearing the end of their lives. However, the value that patients place on these considerations or their willingness to pay for either was not previously known.

A team led by Professor Eric Finkelstein and Assistant Professor Chetna Malhotra from the LCPC in Duke-NUS Graduate Medical School (Duke-NUS) administered surveys to 211 patients with stage IV cancer and their informal caregivers to find out more about their end-of-life preferences.

Participants were asked to choose their most-preferred end-of-life scenarios out of a series of options that varied along key dimensions, including years of life remaining, degree of pain experienced, place of death, level of burden on caregivers, quality of healthcare experience, cost, and source of payment (cash, Medisave, or family members' cash or Medisave). Using the results, the authors quantified patients and caregivers willingness to pay to improve their end of life experience.

They found that patients' willingness to pay to extend their life by one year was valued at S$18,570, which is lower than their willingness to pay to avoid severe pain (S$22,199), or to die at home (S$31,256), and only slightly more than their willingness to pay to receive a high-quality health-care experience (S$16,191). Caregivers had a three-fold greater willingness to pay than patients to extend life by one year and for most of the other features considered.

Dr. Finkelstein believes these results suggest that health insurers and physicians may be putting too much emphasis on life extending treatments for these patients. He notes, "Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life."

Dr. Malhotra added that the differences in patients' and caregivers' willingness to pay suggest the need for eliciting patient preferences directly during treatment decision making as opposed to relying on caregiver input, "We hope this research helps foster greater communication between patients, caregivers, and doctors."

The team is planning to extend this research to test patient decision aids that can help ensure that patients' end-of-life experience is most consistent with their preferences.