Talking about serious illness and death is hard. That's why so few people do it. But it's important. That's why there's a growing movement to get more of these conversations going among families and friends, to help more people get control over the kind of medical care they want at the end of their lives — and that is why we are sharing this with you.
The latest effort, launched Friday, is a website called Prepare (www.prepareforyourcare.org). It features large type, voice-overs and how-to-videos with closed captioning — to better reach a wider audience and help simplify what can seem like a daunting process, says project leader Rebecca Sudore, a geriatrician at the San Francisco Veterans Affairs Medical Center and associate professor at the University of California-San Francisco. Several foundations provided funding for the project.
Prepare joins the Conversation Project, an effort led by veteran Boston journalist Ellen Goodman and launched in August with backing from the Institute for Healthcare Improvement. Goodman says 60,000 people have visited www.theconversationproject.org, and 40% of them have downloaded a conversation-starter kit. Meanwhile, other projects are reaching out to specific groups, including African Americans, seriously ill teens, people with developmental disabilities and families facing Alzheimer's disease.
The shared aim: to get all sorts of people thinking and talking about the medical care they would want if a time comes when they can't speak for themselves — something that frequently happens near the end of life or when people are seriously injured or ill. At those times, other people must make choices that can extend or shorten lives, ease or heighten suffering. It's much easier, experts say, when decision-makers know what patients might choose for themselves. But that can't happen if people don't talk before the crisis happens.
The Prepare site breaks it down into five steps:
• Choose a medical decision-maker. Many people will quickly name a spouse, child or best friend. But 10% to 15% have no one they feel comfortable naming. The site suggests such folks give the matter some thought — and reassures them that they are not alone in this problem.
• Decide what matters most in life. Is living as long as possible the most important thing? Is comfort more important? Would you want to live if you couldn't talk to people? Videos show how people might discuss these issues.
• Flexibility for your decision-maker? Do you want them to always do exactly what you said — or would you want them to have flexibility in some situations?
• Tell others about your wishes. The list may include a decision-maker, doctors, family members and friends.
• Ask doctors the right questions. When medical choices arise, ask about risks, benefits and other options. Some people also want to ask how sick they are or how long they have to live.
Many people who have these conversations will end up filling out advance care directives, formal statements that name medical decision-makers and future preferences. People who already are very sick may, in many states, sign a form called Physician Orders for Life-Sustaining Treatment, which says whether they ever want cardiopulmonary resuscitation, feeding tubes or other interventions.
Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University, agrees: "Advance care planning is not an event, it's a process." While paperwork helps, she says, conversations are more important. Research shows that decision-makers who have had these conversations feel less distress about their decisions, whatever they are, she says.