Most people have strong feelings about how they want family, friends and medical providers to handle their final days of life. The time to make those wishes explicit is now – when you’re calm, and clear-eyed and able to communicate exactly what you want, and don’t want, to happen.
There’s a lot to consider. It’s one thing to make it clear you don’t want artificial means used to keep you alive (if that is, indeed, your wish). It’s another to decide food and hydration should be withheld from you if you can no longer swallow.
There’s a lot doctors can do to keep people alive after the body attempts to shut down. “But at some point, you’re no longer prolonging life,” argues Christine Davis, professor of communication studies at UNC Charlotte. “You’re preventing death in a body that wants to be done.”
Davis’ subspecialty is aging, and she’s written a book, “Death: The Beginning of a Relationship,” about her hospice research and her experience dealing with her father’s illness and death.
Her father, who had cancer, didn’t want artificial nutrition or to be hydrated when he could no longer swallow. The family and hospice staff kept her dad comfortable during his final days. Davis said the family was secure in knowing they were carrying out his wishes because his family knew what he wanted.
Joyce Conway of Hospice and Palliative Care of Cabarrus County said we should ask ourselves, “Who will speak for me?”
A health care power of attorney – someone who acts as your proxy – serves that role. So, it’s imperative for that person to know your precise wishes. Many say they don’t want “extraordinary means used” to keep you alive. But what do you actually consider extraordinary?
For instance, some people say they wouldn’t want to be on a ventilator indefinitely.
“We can’t predict every medical situation we might find ourselves in – or our response to it,” Davis said.
Your health care power of attorney should be someone who “can almost read your mind,” Davis said. That person can make life-or-death decisions for you.
In North Carolina, that person can make decisions for you that supersede your spouse’s wishes, said Conway. “The health care power of attorney is first in line, and the spouse is second.”
Confusing? Yes. Having two separate documents – a living will and health care power of attorney – adds to the confusion, said Jessica Hardin, an estate planning attorney at Robinson Bradshaw. At her firm (and some others), the two are combined into one document.
Two different governing documents may contain contradictions. If there are conflicting instructions, the living will overrides the health care power of attorney unless a health care agent is specifically granted permission to override the living will, Hardin said.
The Terri Schiavo drama is Exhibit A in the case to make your wishes known, Davis said. Schiavo lived for 15 years (1990-2005) in a persistent vegetative state. Her husband and her parents disagreed about her end-of-life care. And plenty of people – including Congress and President George W. Bush – weighed in on what ought to have been a private decision.
If you’re healthy, of course you want someone to use life-saving measures. But if you have a terminal illness or condition, what then?
These are weighty questions. And, experts warn, too weighty to leave up to someone else with no input from you.
Preparing for the inevitable
The most important thing you can do, said Christine Davis of UNC Charlotte, is designate a health care power of attorney.
And make sure to tell that person. Joyce Conway, agency director for Cabarrus County Hospice and Palliative Care, said she often encounters people who had no idea a friend had entrusted them with that authority.
Having a living will or advanced directive is critical, said Davis. Generic forms are available online for N.C. residents at secretary.state.nc.us.
And have someone knowledgeable about wills and estate plans review the documents, said lawyer Jessica Hardin. Ideally that person is an attorney, but there are people at senior advocacy agencies who can help.
Having one document – either a living will or health care power of attorney – is better than having none. But ideally, you should have both.