Even as Doctors Say Enough, Families Fight to Prolong Life

The New York Times
March 27, 2005
Even as Doctors Say Enough, Families Fight to Prolong Life
By PAM BELLUCK

BOSTON, March 26 - For years, when families and hospitals fought over how to treat critically ill patients, families often pressed to let their loved ones die, while hospitals tried to keep them alive.

But in the last decade or so, things have changed.

Now, doctors and ethicists say that when hospitals and families clash, conflicts often pit families who want to continue life support and aggressive medical care against doctors who believe it is time to stop.

"The most common case that comes before the ethics committees," said Dr. John J. Paris, a bioethicist at Boston College, "are families now insisting on treatment that the doctors believe is unwarranted."

Extraordinary medical advances have stoked the hopes of families. Also, more patients and families feel empowered to make medical decisions, and some are skeptical of doctors' interpretations or intentions.

When asked in polls about Terri Schiavo, the brain-damaged Florida woman, 60 percent to 70 percent of respondents said they would remove Ms. Schiavo's feeding tube and, in similar circumstances, would choose not to keep themselves or a spouse alive.

Many right-to-die requests would not cause conflict with a hospital these days because they are more likely to be in sync with doctors' assessments. When there is a conflict, it typically involves families who feel their loved one would not want to endure surgery or treatment that might not succeed.

But even families who say they believe in removing life support may find that position untenable when their own relatives are involved.

"About 15 years ago, at least 80 percent of the cases were right-to-die kinds of cases," said Dr. Lachlan Forrow, the director of ethics programs at Beth Israel Deaconess Medical Center in Boston, who handles 50 to 100 end-of-life conflicts a year. "Today, it's more like at least 80 percent of the cases are the other direction: family members who are pushing for continued or more aggressive life support and doctors and nurses who think that that's wrong."

Dr. Lisa Anderson-Shaw, co-chairwoman of the ethics committee at University of Illinois at Chicago hospital, said that in 1998 she consulted on 2 such cases, while last year, she fielded 11.

Chuck Ceronsky, a co-chairman of the ethics committee of Fairview University Medical Center in Minneapolis, said, "The right-to-die families find a more receptive audience in the hospital, as opposed to years ago when a doctor might say, My job is not to end life."

Mr. Ceronsky added, "We have a disproportionate number of cases where people come in with something they think ought to be tried, or that they've read on the Internet ought to be tried."

Ethics committees resolve most cases, often through repeated family discussions over weeks or months.

But at least three states, Texas, Virginia and California, have laws that let doctors refuse treatment against the wishes of a family, or even a patient's advanced directive in certain circumstances. In other states, like Wisconsin, doctors are seeking such laws.

"When they're asking for things that become absolutely nonsensical, then you don't have to do it anymore," said Dr. Kay Heggestad, who is the chairwoman of the ethics committee of the Wisconsin Medical Society and is helping draft a "futile care" bill in her state. "If someone marches into my office with normal kidney function and demands dialysis, I am not required to offer that."

Recently, several life-support requests have landed in court.

In October, when doctors at a hospital in Salt Lake City declared 6-year-old Jesse Koochin brain dead and planned to remove life support, Jesse's parents, Steve and Gayle Koochin, went to court. A judge ruled against the hospital and granted the Koochins the right to take Jesse home, where they kept him on a ventilator and said they were convinced that he could get better with alternative medical treatments. A month later, Jesse died.

In Boston, doctors considered it so inhumane to keep alive Barbara Howe, a 79-year-old woman with Lou Gehrig's disease, that the chairman of the ethics committee wrote in June 2003, "this is Massachusetts General Hospital, not Auschwitz."

When Ms. Howe's daughter, Carol Carvitt, said her mother would not want to disconnect life support, the hospital sued. A judge said it was Ms. Carvitt's decision, but urged her to think about her mother's best interests. This month, Ms. Carvitt agreed to terminate life support by June 30.

And last November in Orlando, Fla., Alice Pinette insisted that her husband, Hanford, stay on life support even though his living will said he would not want to. A judge sided with the hospital, which removed the ventilator, and Mr. Pinette, 73, died.

"Medical advances give people greater expectations, and they're not willing to accept that death is inevitable; somebody somewhere can save Mom," said Dr. Forrow, of Beth Israel in Boston. "They have way more belief that the decision about that is partly up to them: my business, my body, my mom's body. Fifteen years ago, it was the doctor's purview alone."

Some are wary that doctors may be truncating treatment because of soaring medical costs, and Dr. Dianne Bartels, associate director of the Center for Bioethics at the University of Minnesota, said: "Sometimes there's also mistrust of the medical system. A doctor might have said, 'Your husband's never going to make it,' and he's already survived two or three times, so why should they believe the doctor?"

Thomas W. Mayo, an associate professor at Southern Methodist University law school and an author of the Texas law, cited another reason.

"There are more specialists with less contact with the family," Mr. Mayo said. "As patient volumes have increased and reimbursement rates cut to the bone, there's less incentive for everyone in the system to provide that. When a stranger says, 'Well, there's nothing we can do other than turn things off,' you're hearing that from someone you have no reason to believe other than he's wearing a white coat."

The Texas law, signed in 1999 by Gov. George W. Bush, allows doctors to remove life-sustaining treatment over the objections of families, provided an ethics committee agrees and the hospital gives the family 10 days to see if another facility will accept the patient.

Dr. Robert L. Fine, an author of the law and the chairman of the clinical ethics committee at Baylor University Medical Center in Dallas, said that life support could be withdrawn even if a patient's living will specified otherwise, but that ethics committees would give great weight to such a document.

Virginia's law is similar; California's is much vaguer, saying physicians cannot be required to provide health care contrary to generally accepted health care standards.

Now, in most disputes in Texas, "families look for an alternative willing to provide care and if none is available they say, 'O.K., it's time to stop,' " Dr. Fine said.

There have been two recent exceptions. Last week, Sun Hudson, a 5-month-old, died after a judge gave Texas Children's Hospital in Houston permission to disconnect his ventilator over the objections of his mother.

And last Sunday, the case of Spiro Nikolouzos, 68, was resolved when his family, who fought a Houston hospital's plan to remove his ventilator, found a nursing home to accept him.

In the absence of laws like Texas's, hospitals often accede to a family's wishes because they fear being sued. They are reluctant to go to court because judges often rule that even if the hospital's assessment is correct, families' claims of what patients would have wanted take precedence. And doctors and ethicists in many states have not lobbied for a Texas-style law because of expected opposition from right-to-life advocates.

There is also discomfort with determining when health care is futile.

"It is controversial even within the bioethics community," Mr. Mayo said. "There are times when medicine has nothing more to offer and we're not obligated to offer it, but when you go to implement that, it gives people the heebie-jeebies."