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 There's light at the end of the tunnel for America's end-of-life care By Robert Milch and J. Donald Schumacher An excerpt. For the full article, click here When 53-year-old Barbara Wein was diagnosed with ovarian cancer three years ago, she faced what has become the end-of-life dilemma for most critically ill Americans. Like many baby boomers, Wein was used to being in control of her life. She was a National Ski Patrol member, physically active and independent. She and her husband of 26 years traveled widely. She had no children but enjoyed an extensive family circle - both her parents were alive, and she had two sisters and several nieces and nephews. She read extensively about her disease, harbored no illusions about its seriousness and decided to fight it. She tried surgery, then months of chemotherapy, followed by another operation and continuing rounds of other therapies. "Early in my struggle with ovarian cancer," the Buffalo, NY, homemaker told friends this year, "my goal was to beat it, despite the odds. Probably six months into my diagnosis, I realized I might not." Last winter, she got sicker, and she had to lean more heavily on others for her care, something she never expected nor wanted. Her husband's work frequently kept him away from home, and she finally moved in with her mother. Abdominal pain from a recurrent tumor kept her indoors much of the time. Doctors predicted her death within a year, but the only treatment they offered was a course of "salvage" chemotherapy. But the chemotherapy caused weeks of nausea and vomiting. Wein had a tube in her stomach to vent a bowel obstruction. She was in continual pain. She couldn't sleep. Anxiety and depression took hold until she couldn't think straight. After 10 days in the hospital, she was sent home, where she was kept going by an intravenous feeding tube. As death drew closer, Wein nearly lost her will. "My symptoms had taken over my life," she later said. "I wanted to die. Death had to be better than feeling sick." Wein knew only one thing - this was not how she wanted her life to end. The questions Wein faced in the months before her death now hang before 76 million baby boomers who are approaching old age and caring for ailing parents: How can the critically ill make the most of their time? How can we gracefully prepare for death? And how as a nation can we start to rethink the way we live with dying? The medical and legal professions are just now recognizing serious deficiencies in care of the dying first identified in a pivotal 1995 study funded by the Robert Wood Johnson Foundation. Of 9,000 critically ill people in the study, half had poorly controlled pain. Many of their doctors were unaware their patients had expressly asked not to be resuscitated or simply disregarded their wishes. In a 2000 survey of seriously ill patients, bereaved families and health-care practitioners published in the Journal of the American Medical Association, Americans listed the goals for the end of their lives this way: Control of their care, time to build stronger relationships with loved ones, relief of care-giving burdens on others, and most of all, the choice to avoid a prolonged, painful death. Many Americans got a first glimpse of the new possibilities in 2000, when PBS broke a major cultural taboo with its critically lauded four-part series, "On Our Own Terms - Moyers on Dying." The series, which examined alternative ways to approach death, pulled in 60 percent more viewers than any show ever aired on the public network. As the end draws near, Americans are saying, give us the time, information and guidance to move to the final reprieve of palliative and hospice care. Allow us in our last days to live smart, to embrace the life we have left and to make our deaths our own. Which, finally, is what Barbara Wein did. After doing her own research, Wein called her local hospice, asked her physician for a referral and was admitted to its inpatient unit. At the Center for Hospice and Palliative Care in Buffalo, NY, Wein found solace. First, medications promptly controlled her pain, nausea, vomiting and depression. She was able to sleep and rest, and over the next days, she had rich discussions with family, friends and staff, exploring what her goals were for the rest of her life. From these were derived a plan of care to maximize her stamina while maintaining her comfort. She still had "a few things to tie up, a few things I want to do." Barbara elected to resume getting her nutrition intravenously. She took a number of brief road trips - a last time to her home, a visit to a lighthouse on the lake. She had a "hen party" and numerous visits with friends. She and her mother discussed her experiences with a group of medical students who came to the hospice as part of their Family Medicine rotation. They kept her for more than an hour, questioning, talking and listening. A few days later, she decided it was time to stop the intravenous fluids that had tided her over as she took control of her life. Five days later, Barbara Wein did beat the odds. She died the way she chose. Dr. Christopher Kerr also contributed to this article. © 2001, Partnership for Caring, Inc. Distributed by Knight Ridder/Tribune Information Services  |
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