As the healthcare decision maker for her aging mom who had dementia, Ellen Goodman struggled because they had never had a conversation about her wishes for end-of-life care. “I was repeatedly faced with decisions for which I felt unprepared and pretty much blindsided,” says Goodman, who now runs The Conversation Project, which guides people through these difficult conversations. “Often, the difference between a good death and a hard death for survivors was whether they had a conversation with their loved ones about their wishes, and whether they were respected,” she says.
There are two basic documents you need. With a healthcare proxy (also known as a “durable power of attorney for healthcare), you appoint someone (a “proxy” or “agent”) to make healthcare decisions on your behalf if you’re unable to. With an advanced directive (also known as a “living will”), you state your wishes regarding end-of-life medical care. Every state has its own version of these forms, and sometimes they’re bundled in one document (see caringinfo.org for links to state forms). You can get standard forms at your health care provider, your local Area Agency on Aging, your state health department, or a lawyer who can customize them.
How to start? Have a conversation with potential agents—and any family members who may feel left out--about whom to designate to act on your behalf in a medical crisis, and what care you want, before you’re handed forms to fill out at the hospital or in a lawyer’s office. The danger many people face: “They go to an estate planner or a doctor, and a piece of paper is shoved across the table: ‘Who’s your healthcare proxy?’ It becomes this instant decision,” Goodman says. You don’t have to pick a spouse or your oldest child. It can be a close friend, someone you do volunteer work with, for example. “If you haven’t chosen a healthcare proxy, you may be setting your family up for a real conflict,” she warns.
Another problem area: designating an agent but not having had the conversation. “People often don’t know [they’re an agent] until they get ‘the call;’ someone is in a state of medical crisis and can’t make decisions for themselves,” Goodman says. Being an agent means speaking for the person who can't speak for himself. If you’ve talked ahead of time, there’s a better chance of things going the way you intended.
Who needs these forms? Everyone over 18. Don’t worry about locking in an agent. You can review and change these at any time.
The Conversation Project has a general guide here on talking about end-of-life care issues. It covers ways to break the ice and what to talk about. Nine out of 10 people say that talking with their loved ones about end-of-life care is important but only 27% have actually done so, a Project survey found.
Here are links to some of the Project's targeted guides:
How To Choose A Health Care Proxy & How To Be A Health Care Proxy
Having The Conversation With Your Seriously Ill Child
