When a guardian decides on life or death

Personal care home protests decision to end mentally ill woman's dialysis

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In May, Garry McGrath said, he and the staff of his Washington County personal-care home pleaded with 47-year-old Bonita Carter to continue having life-sustaining dialysis.

But Carter, who had a mental illness in addition to renal disease and frequently believed dialysis was a ploy, refused.

Carter died June 1, but a disagreement over her care continues. Mr. McGrath demanded that the state review Carter's death, saying her court-appointed guardian, Distinctive Human Services of Cambria County, agreed to let her cease treatment when it should have worked harder to keep her alive.

"This is about a human life that was terminated prematurely," he said in a Dec. 20 email to Mark Knouse, special adviser to Public Welfare Secretary Beverly Mackereth. When Carter consented to dialysis, Mr. McGrath said, she was energetic enough to walk into town a mile away.

Carter's story is a window on the complex interplay of physical- and mental-health care and on the challenges of guardianship, which can involve making life-or-death decisions for people unable to look after themselves. Kim Grier, president of the Centre County-based National Guardianship Association, said guardians can do only so much when clients refuse care.

"Guardianship does not give the guardian the authority to force somebody to do something they don't want to do," she said. "Guardianship does not remove free will from a person."

Ms. Grier said guardianship is an important issue because people are living longer, sometimes with serious impairments. Besides mental illness, a person's decision-making can be affected by dementia, stroke and brain injury, among other conditions.

Ellen Hamilton, executive director of Distinctive Human Services, said Carter lived a roller coaster life.

"It was pretty sad because she would go to dialysis and rip everything out and scare other patients in dialysis and tell us she didn't want dialysis any more," Ms. Hamilton said. She did not respond to additional requests for comment. Susan Key, a Washington, Pa., attorney who worked with Distinctive Human Services to arrange the guardianship, declined to discuss Carter or the agency.

The agency has been criticized before.

A Cambria County woman and her daughter sued Distinctive Human Services in 2011, saying the agency should have notified them when a relative -- their mother and grandmother, respectively -- died. They said they found out about the death by accident months later. The agency, which had been handling the woman's affairs for five years, said it did nothing wrong. The suit, which also named as a defendant the nursing home where the woman lived, is pending.

Relatives often make decisions for incapacitated loved ones. If they aren't able or willing, a court may appoint a guardian.

Carter's two sons and other family couldn't be reached for comment. Vinson House of Mortuary, a Steubenbille, Ohio, funeral home which handled Carter's arrangements and where one of her relatives works, said family did not want to comment.

Carter repeatedly refused to accept psychiatric care or undergo dialysis over the years, and her psychosis left her unable to make rational health-care decisions, according to court records.

"She has no idea she is going to die if she continues refusing dialysis," said an undated Monongahela Valley Hospital report in Carter's file. "She is paranoid about the procedure and claims that the only reason it is being done is to draw blood from her."

In January 2011, Washington County Common Pleas Judge Katherine B. Emery appointed Distinctive Human Services as Carter's guardian, giving the agency authority over her care and financial affairs.

The agency told the court that the guardianship was necessary to prevent further deterioration of Carter's physical and mental health. A doctor's report, dated December 2010, said she was in end-stage renal failure and described her prognosis as "fair, with antipsychotic meds and continuing dialysis."

It is unclear how the agency came to be involved in her case. Janice Taper, Washington County administrator for behavioral-health and developmental services, said her office doesn't promote guardianship because other supports are available.

In spring 2012, Carter moved to Anna's Home, Mr. McGrath's now-closed personal care home in Monongahela.

"After missing several treatments, Bonita would get very sick, and staff would have to talk her into returning to dialysis. After treatment, Bonita would be back to being her normal self," Mr. McGrath said in a June 10 email to the state.

In May, Mr. McGrath said, the situation got worse. Carter, who steadfastly refused dialysis and grew increasingly ill, believed that she had had a stroke and would feel better in time. Instead of working with the care home to get her to dialysis, he said, Distinctive Human Services agreed to cease treatment, even if Carter changed her mind.

Mr. McGrath said he was upset that the agency sought guardianship to help Carter's health and, 2 1/2 years later, agreed to let her die. He asked the state to review the way the agency and county officials, who oversee mental-health services, handled her care.

Mr. McGrath said he heard no more until December, when Mr. Knouse, the Public Welfare special adviser, provided him with a brief report about Carter's death. It said Carter was working with hospice, "had a terminal illness, spoke with her guardian and made the decision to stop dialysis." The statement angered Mr. McGrath, who said Carter neither wanted to die nor understood the need for treatment.

Welfare Department spokeswoman Kathaleen Gillis declined to discuss Carter but said in an email that "the department does not conduct death investigations when an individual has terminal illness and is under the care of an outside hospice or agency."

In a report filed with the court, Distinctive Human Services said Carter "refused to comply with dialysis in her final months."

If clients are unwilling to have dialysis, the guardian should attempt to find out why and determine whether there's a way to overcome their reluctance, said Ms. Grier and Carol Horowitz, a Downtown-based managing attorney with the Disability Rights Network of Pennsylvania. If that fails, Ms. Grier said, the guardian has few options.

Extreme behavior at the dialysis unit can be a complicating factor. Beth Piraino, president of the National Kidney Foundation and a professor at the University of Pittsburgh School of Medicine, said patients who threaten others may be turned away and likely denied admission to other units, too.

Curtis Decker, executive director of the National Disability Rights Network, said Carter's case points to the need for a mental health system that's better able to help patients manage their conditions. He said it also shows the usefulness of advanced-care directives, which enable people in possession of their faculties to specify the care they want if they're ever incapacitated.

If guardians don't know what decision a clear-headed client would have made, they're required to act in the person's "best interest." Depending on medical condition and other factors, the guardian may decide to let the client die, according to National Guardianship Association standards and a Disability Rights Network analysis of state law.

"But it's a pretty tough standard to meet," without knowing the patient's wishes about end-of-life care, said Arthur L. Caplan, director of the Division of Medical Ethics at New York University's Langone Medical Center. Before deciding to let someone die, he said, the guardian should discuss the person's case with caregivers and other people in the patient's life and also consider presenting the matter to an ethics committee or a judge for review.

Carter's file contains no record of a request for judicial review, and Mr. McGrath said he knew of no such effort.

Ms. Taper, the Washington County administrator for behavioral-health, declined to discuss Carter but said mental illness does not preclude a person -- perhaps during periods of wellness -- from communicating preferences about health care. She said a person who's long struggled may decide to forgo additional treatment.

"At what point do you wave the flag?" she said.

Dr. Piraino said withdrawal from dialysis is a common cause of death for kidney patients with a very poor prognosis.

Joe Smydo: jsmydo@post-gazette.com or 412-263-1548.


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