HEALTH Many critically ill seek better end-of-life care

By ROBERT MILCHand J. DONALD SCHUMACHER
KNIGHT RIDDER NEWSPAPERS
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, N.Y., 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."
When she tried to talk to her medical team, they had no problem discussing the physical effects of her disease, but were reluctant to talk about its emotional impact.
"They seemed uncomfortable about it, and I didn't push it," she said. But Wein wanted to live the rest of her life with hope and desperately needed guidance.
Condition worsened: 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?
National study: Wein's experience is mirrored in a June report from the National Cancer Policy Board, a committee of the Institute of Medicine and National Research Council, that found half of the 550,000 Americans who die of cancer each year suffer needlessly from pain, nausea, depression, fatigue and other symptoms. Yet only 1 percent of the National Cancer Institute's $2.9 billion budget went to research and training related to palliative care, which focuses on pain management and comfort for the critically ill in a hospital setting.
Because of American medicine's "single-minded focus on finding a cure for cancer, many cancer patients and their families are receiving inadequate pain and symptom control, as well as poor psychological, social and spiritual support," the report found.
Lawsuit: This year, in a landmark decision, a California jury awarded $1.5 million to the family of a deceased California man after finding a doctor negligent in treating his pain. The decision is the first in which a jury determined that inadequate treatment of pain translates into abuse of an elderly person and could affect how medical licensing boards and the legal system view complaints about people in pain.
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.
The report, known as the SUPPORT study, alarmed the health care profession by putting a very public spotlight on the pervasiveness of inadequacies in care planning and delivery, the lack of communication among those charged to care for the dying and the resistance of hospital culture to change.
There are signs of both great longing and great promise ahead. This is America's other budding crisis in health care -- while research for cures of life-threatening diseases barrels ahead, more and more Americans are also looking for better ways to die.
Goals: 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.
The path toward more compassionate end-of-life care is well lit. Kathleen Foley is one of the American pioneers in pain management and palliative care and attending neurologist at Memorial Sloan-Kettering Cancer Center in New York. She said the SUPPORT study pointed out "the critical need to apply the knowledge we have now to prevent needless suffering."
"We have made extraordinary advances in pain management and palliative care," said Foley, "and we need to ensure that all Americans have access and availability to state-of-the-art symptom control and supportive therapies."
What Foley is referring to is medical care that can be as simple as pain medication offered by a primary doctor to entire teams offering treatment and counseling to dying patients and their families, even while still searching for a cure.
Industry response: In the six years since the SUPPORT study was released, America's health care system slowly has started to respond. Hospice care, mainly for dying patients at home, has become more familiar to Americans, and according to a 1999 survey by the American Hospital Association, 20 percent of hospitals now have some type of palliative services.
Influential medical groups such as the American Board of Internal Medicine, the American College of Surgeons and the American Cancer Society are redefining their roles in end-of-life care. Insurers throughout the country -- including Blue Cross-Blue Shield, Kaiser-Permanente and the National V.A. Healthcare system -- are looking at expanding coverage of end-of-life care.
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, N.Y., 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."
Preparing: 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.