Woman dies at MGH after battle over care

Quietly ending one of the state's most prominent right-to-die cases, a woman paralyzed with Lou Gehrig's disease has died at Massachusetts General Hospital after a two-year legal battle between the hospital and her family about whether to remove her life support.

Barbara Howe, 80, died at 11:24 p.m. Saturday, 26 days before a court settlement would have allowed the hospital to turn off her ventilator, Gary Zalkin, the lawyer for Howe's daughter, Carol Carvitt, said yesterday. Carvitt, who was her mother's healthcare proxy, had fought the recommendations of doctors at Mass. General to end her mother's life support.

In March, Carvitt and the hospital reached an agreement to withdraw Howe's life support by June 30. But Zalkin said that Howe died Saturday ''as a function of her illness" while still on her ventilator. He said the family is relieved.

''My mother died late Saturday night after a long battle with her illness," Carvitt said in a statement read by Zalkin. ''In her health she was a wonderful wife, mother, grandmother, and neighbor, and in her illness she was a wonderful fighter. It was very important to her that she die when God was ready to take her, and my family and I are pleased that her medical wishes were respected in life, as well as in death."

Carvitt could not be reached yesterday. Mass. General executives declined to comment, except to confirm Howe's time of death.

Howe died more than five years after she was first admitted to Mass. General with a desire for the most aggressive care.

That was an unusual wish for a patient with Lou Gehrig's disease, which typically paralyzes people's bodies while leaving their minds intact, and became the heart of a rare and lengthy legal battle. She had not left Mass. General since she was admitted on Nov. 15, 1999.

The case highlighted the debate about how much care is appropriate for terminally ill patients and who ultimately decides. In one article in the Journal of the American Medical Association five years ago, 48 percent of patients surveyed wanted all available treatments, no matter what the chance of recovery, while only 7 percent of physicians rated that as important.

Charles Baron, a law professor at Boston College who pushed for passage of the state's healthcare proxy law, called Howe's situation unusual and said he knew of just seven cases in which a US hospital tried to overturn a family member as healthcare proxy, a person the patient chooses to make healthcare decisions if he or she becomes unable to do so.

Since she was diagnosed with Lou Gehrig's disease in 1991, Howe, from Dorchester, gradually lost her ability to speak, gesture, and even blink her eyes, leaving her unable to communicate her wishes. Howe's room on the 21st floor of the hospital's Phillips House became her world. Her husband, a Boston police officer, died in 2001.

Carvitt visited four days a week, while another daughter, Maureen Howe, came every night from 7 to 11:30 p.m., tending to their mother's needs, from helping take her blood pressure to suctioning mucus from her lungs. Carvitt maintained that her mother wanted aggressive treatment as long as she could enjoy her family, and she believed up until the end that her mother still did.

In court documents and testimony, nurses referred to Howe as a ''war horse" and said she ''wanted everything done to maintain her, including CPR, antibiotics, and ICU." But after Howe's bones broke during routine turning and doctors had to remove her right eye because of corneal damage, her caregivers grew increasingly opposed to keeping her on a ventilator. Many believed she was in terrible pain, but had no way of communicating it.

Carvitt, however, said she felt obligated to carry out her mother's wishes and did not believe that she was suffering.

Unable to reach an agreement, Mass. General doctors took the rare step of going to court to try to overturn Carvitt's wishes as her mother's healthcare proxy, first in 2003. Probate and Family Court Judge John M. Smoot ruled that there was not enough evidence to warrant taking away Carvitt's power to determine her mother's treatment.

But earlier this year, Howe's doctors said her condition was deteriorating and asked the hospital's end-of-life committee to again order removal of her life support. Carvitt went back to court to block the move.

In March, after meetings with lawyers from Mass. General and the judge, Carvitt said she believed that Smoot was going to rule against her and decided to enter into the agreement with the hospital.

In a statement at the time, the two sides tried to mend fences after two years of sometimes angry disagreement over Howe's care. The hospital ''acknowledges that the family has acted out of love and concern for their mother, and the family acknowledges that the hospital acted with similar concern for their patient and that Barbara would not have received better care anywhere else."