Jump start hard end-of-life conversations

Kaiser Health News
Friday, July 28, 2017

Frederick Bannon Jr. was by his mother’s side in intensive care as she fought a rare form of muscle cancer in late 2014. She was sedated, but he felt confident making medical decisions, thanks to advance care planning.

Bannon had difficult end-of-life-care conversations with his parents, both in their mid-80s, before his mother’s diagnosis. During those discussions, held at Bannon’s urging, his parents decided how far they wanted doctors to go to keep them alive should they become too sick to communicate. Bannon then documented their wishes.

Most Americans avoid end-of-life decisions, although some people may be more likely to make them if a doctor or social worker starts the discussion. In California, the state’s attorney general’s office offers an end-of-life planning checklist on its website. In the past few years, other websites have encouraged those conversations, with their own suggestions on how to get started.

Rebecca Sudore, a geriatrician, created prepareforyourcare.org, which provides step-by-step instructions and video stories to help people navigate the care they want at the end of their lives.

The website is free, and Sudore makes no money from it. She said she created it as a public service with the idea of studying its effectiveness.

The site guides patients in drafting a “summary of wishes” to help families and other caregivers decide whether their loved ones should undergo life-sustaining medical interventions such as feeding tubes and ventilators.

The website appears to be a useful tool, according to Dr. VJ Periyakoil, associate professor of medicine and director of Stanford University’s Palliative Care Education and Training Program.

Seventy percent of Americans lack an advance care plan, according to the U.S. Centers for Disease Control and Prevention, and lack of preparation can have undesirable effects, Periyakoil said.