Daughter battles UPMC for guardianship of mother

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A dispute over guardianship and medical power of attorney between UPMC and the daughter of an 85-year-old UPMC Shadyside patient has brought into sharp relief the complexities and sensitivities about who gets to make medical decisions for an incapacitated patient.

Enisa Begovic, 85, of South Oakland has been a patient since Oct. 22 at UPMC Presbyterian and then UPMC Shadyside, and is in fragile health, with ventilator support and compromised kidney function among other medical problems. She now spends most of the day sleeping.

Mrs. Begovic was initially admitted for pneumonia, but a series of setbacks and disagreements about her care has led to ongoing hospitalization and a legal standoff in which a court granted power of medical attorney for her to Ursuline Senior Services.

In the past two months, UPMC restricted the daughter's access to her mother and required her to be escorted to her mother's room by security, after the hospital accused her of interfering with her mother's medical care.

The daughter, Mirsada Begovic, is a physician trained in Bosnia who once was part of the University of Pittsburgh Medical School staff. Her offense, she says, has been advocating forcefully for her mother.

"I didn't consent, after consulting Mayo Clinic, to some risky, questionable, no-evidence-based medical procedures and experimental treatments for my mom that UPMC's doctors recommended," she said recently. "This made them angry."

Dr. Begovic has had limited visitation with her mother following what a UPMC official told her in a letter were "multiple incidents" in which she vociferously disagreed with their treatment plan.

Dr. Begovic does not dispute that she is a vocal advocate for her mother, and she shared a copy of a Jan. 2 letter from Richard Kidwell in UPMC's legal department.

"Yesterday morning during your visit, your behavior, including loud insulting demands and verbally threatening behavior toward nursing staff, again disrupted patient care for your mother and other patients on the unit," he wrote, adding that the loss of guardianship meant she no longer had authority to make decisions on her mother's behalf.

"As a result of your continued inappropriate and disruptive behavior, you are no longer permitted on UPMC property for any reason, except as necessary for your own medical care or when specifically invited by UPMC staff for scheduled family meetings."

She has been directed to report to hospital security for each of the 30-minute visits she is allowed three times a week, where she undergoes screening by a metal detector before being escorted to her mother's room.

She is not allowed to ask UPMC physicians about her mother's care.

Last week, the court-appointed guardian authorized a "do not resuscitate" order for Mrs. Begovic on the recommendation of both UPMC doctors and a physician not on UPMC's staff. That order blocks aggressive resuscitative efforts such as CPR to revive Mrs. Begovic if she stops breathing, which Dr. Begovic said goes against her mother's expressed wishes.

Last Wednesday, Dr. Begovic unsuccessfully petitioned Orphan's Court to block the move. "In her living will, she wants life-prolonging procedures including cardiopulmonary resuscitation," the daughter said. "My understanding is that is considered 'full code,' that she does want aggressive resuscitative treatments."

On Thursday, she filed a petition to end the third-party guardianship for her mother.

"It is very unusual for a hospital to push family aside and seek guardianship, and it is very unusual for a court to grant it unless there is clear malicious intent or obvious harm," said Arthur Caplan, director of the Division of Medical Ethics at NYU Langone Medical Center in New York City.

In fact, Mr. Caplan -- one of the nation's premier bioethicists -- said he cannot remember a single case in the past 30 years where a hospital challenged guardianship because a family member was deemed too zealous in their advocacy.

"For that to happen, there must have been some serious back and forth going on," he said.

Hospitals and courts, he said, will generally let family members make medical decisions "as long as they are seen as both loving and caring toward their relative, and as long as they are seen as effective advocates. And you can lose your effectiveness if you are very difficult to deal with."

Ultimately, though, Mr. Caplan believes the hospital still has an obligation to continue to reach out to Dr. Begovic, given her mother's frail health.

Mrs. Begovic's extended hospitalization is unusual. Typically, acute care patients are hospitalized for a matter of days until they are stable, then they are discharged to home or transferred to a long-term care facility.

Dr. Begovic believes that with proper treatment her mother, too, might recover enough strength to move to a long-term facility. She said the estimated $71,000 in medical costs to date have been covered by her mother's UPMC For You Advantage insurance and medical assistance.

"They are trying to say she's terminal. She's not terminal," she said. Adding to her distress is that fact that her mother, who came to the U.S. from Bosnia in 1996 to live with her daughter, does not speak English.

"She cries when I leave. She is lonely and isolated," said Dr. Begovic. "She is fearful, bewildered at my absence from her bedside."

While hospitals rarely seek a change in guardianship when a family member is willing and available to take on that responsibility, they usually prevail when they do.

Hospitals have a clear advantage when such disputes land in court, said Elaine Renoire, president of the Illinois-based National Association to Stop Guardian Abuse, since a hospital can simply argue the relative is not acting in the patient's best interest. "In every case we've dealt with, the hospital wins."

In November 2010, for example, Northwestern Memorial Hospital in Chicago threatened to seek court approval to remove medical power of attorney from a patient's daughter following a dispute about whether the mother, 86, should be discharged.

The daughter, Janet Bedin, had argued her mother was not strong enough to go home after nearly two months in the hospital. But she eventually relented, telling the Chicago Tribune that the possibility of losing power of attorney for her mother's care prompted her decision.

"I don't like to be beaten down, but I am," Ms. Bedin told the Tribune. "They wore us down, and it's not right that it happened." Her mother died of pancreatic cancer the following August.

In Dr. Begovic's situation, Ms. Renoire said, her medical credentials give her position added credence.

"As a doctor, doesn't she have even more right to disagree with what the doctors are telling her?" she asked. "Everyone knows you're supposed to get a second or third opinion, so what's wrong with that? And what's that got to do with mom's right to see her daughter?"

Dr. Begovic said she worries that her mother's condition will continue to deteriorate. But she was heartened Thursday when, during her visit, "my mother asked me today, for the first time, whispering, 'Daj mi vode' -- Give me water -- and I gave her a few drops of water."

Steve Twedt: stwedt@post-gazette.com or 412-263-1963.

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