With an estimated 15,000 to 25,000 adult patients in persistent vegetative states in U.S. hospitals, according to a 1990 study cited in the Journal of the American Medical Association, a significant number of families are confronting these sorts of emotionally wrenching decisions every day. Health-care advocates urge all adults to try to spell out their wishes beforehand to reduce the burden on their families and physicians.
Some of the main options for documenting your wishes for end-of-life care are:
Living Will. A living will is a written legal document in which you can outline your preferences for future medical care should you not be able to make decisions on your own.
Durable Power of Attorney for Health Care. Also called a health-care proxy, this is a written form designating an individual who will have legal authority to make medical decisions for you if you are incapacitated.
Advance Directive. An advance directive can refer to living wills, do-not-resuscitate orders and documents appointing health-care proxies.
Noting that Schiavo suffered debilitating brain damage at age 26, Linda Whitten, a law professor at Valparaiso University, says it's important for young adults to consider these issues. Whitten says living wills can be helpful, but says appointing a health-care proxy is preferable. "If you could do just one thing, I'd say appoint a surrogate through a power of attorney or medical proxy, who -- knowing your values -- would make a decision you would have made yourself, if you were able."
Malley agrees. Because of the myriad medical scenarios possible, most living wills don't touch on the specific types of decisions families confront when a loved one faces death.
What's as important as the legal documents, Malley said, are the conversations we need to have with our loved ones. "Dying is more than just a medical moment," he said. "We need to give loved ones as much information as we can about the quality of life that we could accept at the end of our lives."
Aging With Dignity has developed a template called "Five Wishes" that walks individuals through a series of questions about the types of medical care they may or may not want, the level of comfort they would want in their final days and who they would like to appoint to make decisions for them. The group is working with the American Bar Association to develop a template for living wills or advance directives that meet individual states' legal requirements. Its template now meets all legal requirements in 36 states.
Perhaps the most effective tool is appointing a health-care proxy who will make medical decisions on your behalf, Malley said. And who you choose is important. Sometimes loved ones find the thought of letting go of a terminally ill loved one unbearable, and find themselves unable to carry out wishes that may have expressed to them.
"Pick a person who is going to have some backbone -- who will stand up for you and your wishes when your family is dealing with emotionally difficult decisions about your care," he said.
Charlie Sabatino of the ABA's Commission on Law and Aging says the most important step families can take is to have the conversation about death and dying. "It's a tough conversation and people don't like to do it," he said.
And we should revisit it at different stages in our lives. "It's a developmental process, it's not a one-step process," he said.