Dying Patients' Priorities Differ from Those of Their Caregivers'

The value people nearing the end place on various aspects of dying suggest their end-of-life preferences should be elicited directly, as opposed to relying on caregiver input, claims a new study.

Researchers at Duke-NUS Graduate Medical School (Duke-NUS, Singapore) and Duke University (Durham, NC, USA) administered surveys to 211 patients with stage IV cancer and their informal caregivers to examine 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.

The researchers found that patients' willingness to pay to extend their life by one year was valued at USD 13,700, which was lower than their willingness to pay to avoid severe pain (USD 16,390), or to die at home (USD 23,070), and only slightly more than they were willing to pay for a high-quality health-care experience (USD 11,950). Conversely, caregivers had a three-fold greater willingness to pay to extend life by one year and for most of the other features considered than the actual patients themselves. The study was published on March 24, 2015, in Palliative Medicine.

“These results suggest that health insurers and physicians may be putting too much emphasis on life extending treatments for these patients,” concluded senior author Prof. Eric Finkelstein, MD, director of the Lien Centre for Palliative Care at Duke-NUS Graduate Medical School. “Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life.”

Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and caregivers place on various aspects of end-of-life care can help clinicians tailor treatments to best meet the preferences of their patients.

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