Better Communication Needed on End-of-Life Directives

By Jane Farrell

Increasing numbers of people have advanced care planning, but a survey found that almost 40 percent of them didn’t discuss their preferences with the people they designated as their representatives.

A study led by Johns Hopkins researchers reviewed nearly 2,000 surveys with people whose loved ones died of cancer. They found a 40 percent increase over a 12-year period in the number of patients with cancer who participated in one form of advance care planning — designating durable power of attorney privileges to a loved one — but no corresponding impact on their rates of aggressive medical care received in the last weeks of life.

Additionally, nearly 40 percent of the survey respondents also said their loved ones did not discuss end-of-life care preferences with them, the researchers said.

“Although more cancer patients are assigning power of attorney privileges to someone they know and trust to make their medical decisions when they can’t, this practice may be the least helpful among advance care planning tactics because it may be least associated with treatment intensity at the end of life,” said Amol Narang, M.D., a resident in the Department of Radiation Oncology and Molecular Radiation Sciences at The Johns Hopkins Hospital.

“We know that it can be incredibly stressful for family members to make end-of-life decisions when they don’t know what care their loved ones prefer.  Our study shows that even in oncology, a field which has been focused on the importance of advance care planning, there is considerable room for improvement,” said Lauren Hersch Nicholas, Ph.D., M.P.P., assistant professor of health policy and management, surgery, and oncology at the Johns Hopkins Bloomberg School of Public Health and School of Medicine.

And the study found that patients who created living wills or had end-of-life discussions were twice as likely to limit or withhold certain treatments at the end of life.

The study was published in JAMA Oncology.