We plan for weddings, birthdays, vacations, retirement. But few of us plan for the one event that awaits all of us -- death. And our failure to plan for what level of medical care we'd like to receive at the end of our lives can leave family members and loved ones burdened with emotionally excruciating decisions that should be our own.
The case of Terri Schiavo points to just how difficult these decisions can be for family members. In 1990, the Florida woman suffered severe brain damage that left her in a persistent vegetative state. Physicians removed her feeding tube on Friday after a seven-year battle between her husband, who said she would not have wanted to remain alive in such a state, and her parents, who insisted there was still hope for their daughter.
Before the action was taken, religious leaders, courts, Congress, President Bush, even Pope John Paul II and Mel Gibson had weighed in on the case. While physicians and health-care advocates say the Schiavo case is extraordinary, they say there's an important message for the rest of us: plan now.
"The main message here, for everyone, is end-of-life decisions are rightfully ours to make and it's up to us to make sure our decisions are documented and discussed ahead of time to make our wishes a reality," said Paul Malley, president of Aging With Dignity, a nonprofit organization that provides resources to help individuals prepare documents such as a living will or a health-care proxy designation, outlining their wishes for end-of-life medical care.
Like Schiavo, most Americans lack such documents. Fifty-seven percent say they don't have a living will or health-care proxy, according to an ABC News/ Washington Post poll released earlier this month. Senior citizens are far more likely to have living wills -- 70 percent -- according to the poll. But families are often finding that living wills fall short when they face health-care decisions for incapacitated loved ones.
That was the case for Maurita Jasper, whose mother died Dec. 26, 2004, in an Appleton, Wis., hospital nine days after suffering a major stroke.
"We had to clarify her wishes and make unbearably painful decisions while we were in a terrible state of grief and pain ourselves," Jasper said. "What we found is that not every member of our family had the same ideas of what various decisions actually meant."
As her mother's condition worsened, doctors told Jasper's family they should begin to consider the possible removal of her mother's feeding tube.
There were moments along the way, Jasper said, in which she and her father and siblings felt hopeful that her mother would regain consciousness and recover. These glimpses of hope made contemplating withdrawing life-support unthinkable, she said. Jasper's mother passed away before they were forced to make the decision, but merely contemplating it was heartbreaking for the family. "The guilt associated with taking a feeding tube away would have been numbing for us," she said.
Jasper is still struggling with the recent loss of her mother, but in retrospect, she feels her family did the best to fulfill what would have been her mother's wishes. "Even if you know what that person wants, it doesn't make it easy. It just makes it less difficult. The grief is just crushing," she said.
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.
Talk With Your Family, Friends
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.
What a 25-year-old may consider unbearable may change when he's 35 or 40. "The bull looks different once you step into the ring," Sabatino said."
He suggests reviewing your living will or advance directive -- or simply having another conversation with your loved ones -- when one of what he calls "the Five Ds" occur: a decade goes by, or there is a death in the family, a divorce, a diagnosis of a serious illness or a decline in your health.
Efforts to Keep Individual in Control of Care
Sabatino said there's been a trend toward simplifying legal requirements for living wills and developing a procedure or form that would be valid from state to state.
"Legislators can help by getting the legal barriers out of the way. States have a lot variability about witness requirements, and 11 or 12 states require mandatory phraseology specific to their state," he said.
He also pointed to successful efforts by physicians in Oregon and Washington state to standardize a process for health-care providers dealing with terminally ill patients who may require life-sustaining treatment. Through the initiative, Physicians Orders for Life Sustaining Treatment, or POLST, physicians would ask patients questions about resuscitation, nutrition and hydration, antibiotics, and palliative care, and attach the questionnaire to a patient's medical file.
The questionnaire would travel with the patient, so future physicians who may treat the patient would have access to the information. West Virginia has adopted a similar program to help standardize the process for health-care providers.
All of these efforts are aimed at keeping the individual in control of his or her care at the end of life.
Individuals need to consider end-of-life care while they're able and share their wishes and their values with their families, said Dr. Sean Morrison, a geriatrician at New York's Mount Sinai Medical School. What makes life worth living? What would be a fate worse than death for me? "These are questions we need to answer for ourselves, and we need to communicate the answers to our families," he said.
Morrison finds the external intervention in the Schiavo case deeply troubling. "We have a right to say what is done to our bodies, whether we are able to voice our decisions or not. And courts have consistently upheld that we do. It terrifies me as a physician that outside bodies could come into these terribly intimate decisions that families and physicians face and influence the care a patient receives -- or does not receive. It disturbs me greatly," he said.
In cases like Schiavo's, Morrison said, "We're really talking about medical intervention to prolong death. We're not talking about prolonging life."