The doctors finally let Rosaria Vandenberg go home.
For the first time in months, she was able to touch her 2-year-old daughter, who had been afraid of the tubes and machines in the hospital. They shared one last tender moment together before Vandenberg slipped back into unconsciousness.
Vandenberg, 32, died the next day.
That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg's sister-in-law, Alexandra Drane.
Instead, Vandenberg, a pharmacist in Franklin, Mass., endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004.
"We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her - not just torture her" in the hospital, Drane said.
Americans increasingly are treated to death, spending more time in hospitals in their final days, trying last-ditch treatments that often buy only weeks of time, and racking up bills that have made medical care a leading cause of bankruptcies.
More than 80 percent of people who die in the United States have a long, progressive illness such as cancer, heart failure or Alzheimer's disease.
More than 80 percent of such patients say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas Project, which tracks health care trends.
Yet the numbers show that's not what is happening:
- The average time spent in hospice and palliative care, which stresses comfort and quality of life once an illness is incurable, is falling because people are starting it too late. In 2008, one-third of people who received hospice care had it for a week or less, says the National Hospice and Palliative Care Organization.
- Hospitalizations during the last six months of life rose nearly 11 percent from 1996 to 2005, Dartmouth reports. Treating chronic illness in the last two years of life gobbles up nearly one-third of all Medicare dollars.
"People are actually now sicker as they die," and some find that treatments become a greater burden than the illness was, said Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center. Families may push for treatment, but "there are worse things than having someone you love die," he said.
Gail Sheehy, author of the Passages books, learned that as her husband, New York magazine founder Clay Felker, spent 17 years fighting various cancers. On New Year's Day 2007, they waited eight hours in an emergency room for yet another CT scan until Felker looked at her and said, "No more hospitals."
Then she called Dr. R. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine and a doctor at Mount Sinai School of Medicine in New York.
"Nobody had really sat down with them about what his choices are and what the options were," said Morrison, who became his doctor.
About a year later, Felker withdrew his own feeding tube, and "it enabled us to go out and have a wonderful evening at a jazz club two nights before he died" in July 2008, Sheehy said.
Doctors can't predict how soon a patient will die, but they usually know when an illness has become incurable. Even then, many of them practice "exhaustion medicine" - treating until there are no more options left to try, said Dr. Martha Twaddle, chief medical officer of Midwest Palliative & Hospice Care Center in suburban Chicago.
A stunning number of cancer patients get aggressive care in the last days of their lives, she noted. One large study of Medicare records found that nearly 12 percent of cancer patients who died in 1999 received chemo in the last two weeks of life, up from nearly 10 percent in 1993.
Often, overtreating fatal illnesses happens because patients don't want to give up.
The American way is "never giving up, hoping for a miracle," said Dr. Porter Storey, a former hospice medical director who is executive vice president of the hospice group that Morrison heads.
"We use sports metaphors and war metaphors all the time. We talk about never giving up and it's not over till the fat lady sings . . . glorifying people who fought to their very last breath," when instead we should be helping them accept death as an inevitable part of life, he said.
This is especially true when deciding whether to try one of the newer, extremely expensive cancer drugs such as Avastin, Erbitux and Tarceva. Some are touted as "improving survival by 30 or 50 percent" when that actually might mean living three weeks or months longer instead of two.
Advance directives: www.caringinfo.org/PlanningAhead.htm
Physician's orders: www.ohsu.edu/polst