Disabled patients’ wishes ignored

Advocates find disturbing trend

The wishes of individuals declared mentally incompetent often go unheeded in family court, lawyers and social workers say, costing them control over the most personal decisions.

In light of this month’s stunning family court ruling that a woman diagnosed with schizophrenia should undergo an abortion and be sterilized, mental health specialists say the case, while an extreme example, casts light on an often unsettling reality for those deemed unable to make decisions for themselves.

Even when individuals voice opposition to a course of treatment, from antipsychotic medication to hospitalization, the courts often rule otherwise, lawyers say.

“It happens regularly,’’ said Robert Fleischner, an attorney at the Center for Public Representation in Northampton who specializes in mental health and disability law.

Those who work in the family court system generally praise Massachusetts for its progressive attitudes toward incapacitated individuals, saying their voices typically are allowed greater force here than in other states.

Yet many worry that the recent ruling, which only came to light when it was reversed on appeal, suggests there could be broader a problem at play, and it prompted concern that the courts are not consistently honoring the rights of those declared incompetent.

“To think a ruling like this could even happen once is extremely disturbing,’’ said Rick Glassman, litigation director of the Disability Law Center of Massachusetts.

No figures are kept on the number of court-ordered abortions and sterilizations in Massachusetts, but specialists say they are likely more common than typically assumed.

The case, which gained national attention last week, also opened a window on the wrenching decisions relatives and courts are forced to make on behalf of people suffering from mental illness, and the difficulty in determining their will, or what their will would be if they were of sound mind.

“It’s relatively infrequent that there’s some clear indication of what the person would have opted for if competent,’’ said Stan Goldman, who directs mental health litigation for the Committee for Public Counsel Services, the state’s public defenders’ office. “It often boils down to what the judge thinks is in the person’s best interest.’’

But in this case, specialists said, the woman seemed capable of making her wishes known. She described herself to court officials as “very Catholic,’’ and said she would never have an abortion. A court-appointed specialist determined the 32-year-old, who has a son, would decide against an abortion if she were competent.

Yet Norfolk Judge Christina Harms ordered the woman to undergo an abortion, stating she could be “coaxed, bribed, or even enticed’’ into the hospital for the procedure. She further directed the woman be sterilized “to avoid this painful situation’’ from happening again.

The woman’s parents, who have custody of her son, were seeking guardianship, and according to court records, believe that terminating the pregnancy is in their daughter’s best interests.

But in Massachusetts, courts have the final say in such cases, unlike many other states where courts delegate decision-making authority to guardians.

The woman, identified in court records by the pseudonym Mary Moe, has a long history of mental illness. She denies she is pregnant and has refused obstetric testing and care. When discussing a previous abortion, she becomes “agitated and emotional,’’ the appeals ruling stated.

Citing “substantial delusional beliefs,’’ Harms ruled that the woman was not competent to make a decision about an abortion, but if she were, she would choose to terminate her pregnancy.

That line of reasoning, known as “substituted judgment,’’ is required under Massachusetts law in guardianship cases involving “extraordinary treatment,’’ such as abortion, removing life support, and administering antipsychotic medication.

It applies to people who are deemed incapacitated for reasons that include mental illness, developmental disabilities, and dementia.

The standard took hold in Massachusetts after a landmark case in the late 1970s involving a profoundly mentally retarded man who was diagnosed with leukemia. The state Supreme Court ruled that incompetent patients have the right to refuse treatment, and that the court must act as a surrogate to determine what the patient would choose.

Massachusetts remains one of a minority of states to follow the substituted judgment standard, Fleischner said. Advocates for the mentally ill say the standard is crucial to protecting their welfare and rights.

“There’s an argument to be made that we can never know what someone would decide if they were competent,’’ said Gary Zalkin, a mental health lawyer in Wellesley. “But I think that’s the most respectful way to start.’’

In practice, however, many courts wind up basing decisions on what they believe would be in the person’s best interests, lawyers said. In a common scenario, patients who resist medication are often ordered to take it.

“It’s a hard row to hoe,’’ Fleischner said. “Once the patient is found to be incompetent, it’s tough to overcome that hurdle. In most cases, there’s no real evidence to what the client would have done, so it’s assumed they would want to take medication.’’

In the Moe case, for instance, the judge ruled that the woman “would not choose to be delusional’’ and would opt for an abortion so she could take medication for her mental illness that could not otherwise be administered because of its effect on the fetus.

In a scathing reversal Tuesday, the appeals court struck down both orders and remanded the case to family court. The court said the woman had consistently expressed her opposition to abortion, and the judge had improperly determined that she was unable to make the decision.

On the sterilization, the court ruled that the “judge appears to have simply produced the requirement out of thin air.’’

The case has been sealed at the request of the woman’s court-appointed lawyer, and future hearings will be closed.

In fiscal year 2011, there were more than 3,800 petitions in Massachusetts for guardianship of incapacitated individuals, according to court statistics. Traditionally, most petitions involve people with mental illness.

In the woman’s case, the state Mental Health Department petitioned the court at the request of her medical provider and her parents “in the interest of protecting her health and safety.’’

“The department conveyed the request of health care providers and the parents’ wishes in order to ensure the safety of a patient with severe mental illness,’’ Barbara Leadholm, the commissioner of the department, said in a statement.

Jennifer Kritz, a spokeswoman for the department, said state officials “made it clear’’ at the appeal hearing they were not “seeking or encouraging sterilization.’’ The department has informed the family court that it is not taking a position on whether an abortion should be authorized, she said.

The Moe ruling aside, some lawyers say they believe the Massachusetts system is generally working well.

They believe judges are doing their best to take time to make a sound decision about what the person would want, even when parents and health care providers are pleading for immediate action.

“It isn’t about what they want, it’s about what the incapacitated person wants,’’ said Joanne Erickson, a guardianship lawyer in Abington. “And it should be. But it’s a really tough balance between the person’s autonomy and their safety.’’