Last week, ten major southern California health providers endorsed a new set of guidelines to help doctors and nurses handle end-of-life planning with their patients. A major goal of the recommendations is to encourage doctors to talk with patients and their families about the end of life – while they’re still healthy.
These conversations are critical but they’re not occurring often enough, said Dr. James Leo, medical director of best practice and clinical outcomes at Memorial Care Health System.
"I think it’s very clear from the fact that 80 percent of people in California say they would like to have a conversation with their physicians about advance care planning, but in fact, only 7 percent have - that there’s a huge gap," Leo told me.
Why are so few people talking about death?
"We’re very much of a death-avoidant society," explained Paula Goodman-Crews, Southern California Medical Bioethics Director for Kaiser Permanente. "When you talk about advance care planning, you have to think about what might happen – what will happen – and I think that, culturally, that’s one reason for the gap."
So how do you begin to have this conversation?
Harriet Warshaw is the executive director of The Conversation Project, which helps people talk about their wishes for end-of-life care.
When adult children are broaching the subject with their parents, she recommends starting the conversation by saying, "I've been thinking about something, and I really need your help in understanding."
This is an easy and effective way to start the conversation, she said, because, "no matter how old people are, when their children ask them for help or guidance, they always want to help."
When parents are bringing up the topic with their adult children, she recommends saying, "I want to give you a gift. I want you to know exactly what kind of care I want at the end of my life."
Framing it as a "gift," she said, relieves children of the anxiety that could accompany this topic.
What should you talk about?
"Whatever it is that’s important to you, it's important to express those wishes to a loved one and to your health care provider," Warshaw said.
That conversation, she said, should occur "early and often, and around the dinner table, and not in the ICU when there's a medical crisis."
More great resources
The website Death Over Dinner helps people discuss this topic over dinner, just as Warshaw suggests. You pick who to invite, and decide what your goal is. The site provides a library of selected articles, videos, and audio stories to share with your guests; then, it helps you invite your guests via e-mail.
My Health Care Wishes, a new mobile app from the American Bar Association’s Commission on Law and Aging, lets you store and distribute health care advance directives - like its living will and health care proxy - on your smartphone.
Cedars-Sinai, which hosted an event on the issue last Thursday, also has detailed information about advance directives on its website.
Have you and your loved ones had a conversation like this? Are you faced with having this conversation, and having a hard time doing it? Has your doctor played a role? What would you tell people who still haven’t talked about their wishes and preferences for the end of life?