In 1998, Margaret Lazarz sat down with trusted relatives to orchestrate a critical stage in her life her final medical care. With two surgeries and a pacemaker behind her and congestive heart failure a near certainty, the then-80-year-old knew there would come a time, not so far in the future, when she would need her loved ones to act on her behalf.
What Margaret Lazarz needed was an advance directive.
Advance directives spell out wishes for health care should a patient become too ill to speak. Doctors agree directives can make things clear, even in a complicated and emotional time. Without them, family members are left guessing about critical medical decisions and when they disagree, physicians typically continue life support, often extending suffering for all involved.
"We all fall into a trap of continuing treatment if we don't know the patient's views," said Dr. Wayne Bottner, a hematologist at Gundersen Lutheran Hospital in La Crosse, Wis. "We end up providing more and more treatment even though it may not help or be of any value to the patient."
Nearly 80 percent of Americans die in a hospital or nursing home and half are unable to make informed choices near the end of their lives. Fewer than 25 percent of Americans have written advance directives before they become ill.
Casual platitudes about future medical care "Don't keep me alive if I am a vegetable," "Don't keep me alive on machines," or "No heroics" are not enough. Legally, advance care planning has to be explicit to guide doctors and families.
Which is what Margaret Lazarz did.
She created a power of attorney for health care, designating her sister-in-law, Rosella Lazarz, and her niece, Janet Aide, as her representatives in making decisions. She didn't want doctors to attempt cardio-pulmonary resuscitation (CPR) if her breathing and heart stopped unless she had a good chance of survival. Her wishes were put in writing.
Margaret did two things right. First, she was specific in her instructions.
"Wishy-washy statements like, 'Do everything if I am going to pull through (but do less if it does not look so good)' are of little help," said Dr. Jack Udell, an internist at Gundersen Lutheran.
Second, she picked close relatives whom she trusted to advocate for her and to make difficult decisions under stressful situations.
"Picking a surrogate who is unable to make complex medical decisions" can complicate an already emotional time, Bottner said. They "often make decisions because of pressure from others rather than the patient's values."
This year, Margaret's relatives were put to the test.
Margaret moved from a hospital to a nursing home in Madison, Wis., this spring after she was unable to breathe and her lungs filled with fluid. It was then that she changed her mind about her advance directive. When asked, "Do you want to be resuscitated?" she said, "Yes."
But, her niece later said, "I think she was scared and sick when she made this decision."
Back in the hospital, Margaret's personal doctor was met with a list of questions from the family: How bad was her heart? What could she expect for the future? If her breathing and heart stopped, would CPR be successful? Would her treatment be top-quality if she did not choose CPR? Could a plan be made to assure that she was comfortable no matter what happened?
Gently, the doctor explained to Margaret that CPR would not help extend her life with any quality, if it worked at all. She then agreed to let her written directive stand.
In just a few weeks her breathing and heart began to fail again. To make her more comfortable, she was transferred to a hospice facility, where she died the next day. Her advance directive, well understood by her family, had been respected.
Despite the compassionate outcomes for many patients with directives, the challenge is to encourage Americans to tackle two subjects they're uncomfortable talking about: illness and death.
A popular version of advance directives is Five Wishes, which has been used by 1 million Americans, according to Jim Towey, president of the senior advocacy group Aging with Dignity. He calls Five Wishes "a discussion tool."
It asks five simple questions: Whom do you want to make health-care decisions for you when you can't make them? What kind of medical treatment do you want? How comfortable do you want to be? How do you want people to treat you? And what are your wishes for your loved ones?
"I helped my Mom as she filled out her Five Wishes," said Towey. "She is 83. She laughed, she got tears in her eyes it wasn't easy for her, but she was relieved when she finished. And I was glad to know exactly what her wishes are not only her medical care choices, but also about pain control, comfort, forgiveness and dignity."
Nationwide, Partnership for Caring Inc. has been at the forefront, distributing advance directives tailored to each state's legal requirements. "Living wills and/or medical power of attorney forms are packaged with clear instructions for completing them and they can be downloaded free from our web site," said Garey Eakes, chief operating officer for the organization.
In La Crosse, Wis., a community education effort has increased the number of people writing advance directives. Nearly 85 percent of patients who died over 11 months in 1995 and 1996 had them. Similar programs are under way in Massachusetts, New Hampshire, North Carolina and South Carolina.
And the American Association of Retired Persons has put its considerable weight behind promoting the use of directives among its formidable membership.
"We at AARP encourage people to plan ahead and talk openly with their loved ones about eldercare, about becoming incapacitated and about preferences for end-of-life care," said Bill Novelli, AARP's executive director.
Advance directives became popular in 1977, when the family of 22-year-old Karen Ann Quinlan sparked a controversy by asking the New Jersey Supreme Court to withdraw life-support from their comatose daughter. In a highly publicized, emotionally charged court battle, the court allowed for withdrawal of life-support by appointing the father legal guardian and permitting him to make the decision on his daughter's behalf. This landmark decision paved the way for the legitimization of living wills in most states, California being the first in 1976.
Since 1991, federal law has required hospitals and nursing homes to ask all adult patients if they have written plans and to help them write them if they don't.
Unfortunately, moments of crisis are not the best time to be asked. Planning for living at the end of life is much more than simply signing a document. These discussions need to start long before a medical crisis.
The discussions may be the hardest part of the process. Advance directives can be completed alone or with assistance from a health professional or an attorney. Depending on the state, they involve one or both of two documents: a living will, which states wishes regarding medical care and a durable power of attorney for health care, which designates another person to make medical decisions on a patient's behalf.
But the best time to tackle the discussions is before a crisis comes up, especially if you are over age 70 or have a serious, progressive illness.
"It (was) a big relief to have this plan," said Rosella Lazarz, who feels comfortable that she abided by her relative's last wishes. And at the age of 80, Rosella fully intends to make an advance directive for herself.