Dispute over Mental Competency Blocks Transplant

Dispute over Mental Competency Blocks Transplant

by Joseph Shapiro, NPR

All Things Considered

It's league night at a noisy bowling alley in Duncan, Okla. On Thursdays, teams of people with mental retardation compete against people who don't have disabilities. Misty Cargill's working on a spare. She lets the heavy ball go and it's headed right at the four pin. But at the last moment, it drifts and leaves the pin standing.

"That close, and I would have gotten a spare," Cargill says with a shy smile.

Cargill's blonde and tiny and wears stylish rectangular glasses that frame her small face. She's a young woman with mild mental retardation. Cargill saves $20 a week from her factory job to go bowling with her friends. She saved up for her black and hot pink bowling shoes, and her bowling ball.

"It's an 8-pounder," she says holding it up. "Orange, pink and yellow."

For tonight's game, Cargill walked into the alley holding hands with her boyfriend, Mike Bishop. Cargill likes to talk about how she and Bishop go on dates to the old movie theater downtown, and how he recently bought her sparkly earrings for her birthday.

But there's one thing Cargill doesn't like to talk about: The fact that she's sick. She was born with abnormally small kidneys. Her doctors say she needs a kidney transplant.

She understands what will happen if she doesn't get a transplant.

"I'm going to stay sick," she says. "I'm going to be and stay sick and stuff and not be healthy."

A Question of Access

Right now, Cargill can't get the kidney she needs. There are nearly 69,000 Americans on a waiting list for a kidney transplant. Only about 16,000 will get one this year. Cargill can't even get on the waiting list.

Christine Serviss is Cargill's caseworker at Duncan Group Homes. Serviss has known Misty since she was a little girl. It was Serviss who drove Cargill the 80 miles to Oklahoma City, where they met members of the transplant team at Oklahoma University Medical Center.

One nurse explained to Cargill that a donated kidney is a precious thing.

"She emphasized how important it was to take care of it," Serviss recalls. "And had a little concern about whether Misty would understand that she would need to do that. And told us a couple of stories including one about a person who had had a kidney transplant and then apparently felt better and decided she didn't need to take her meds after all and quit taking her medications and lost the kidney."

Serviss said that wouldn't be a problem for Cargill, because she lives in a group home with staff to support her.

They drove home feeling hopeful.

Four weeks went by. Then a thin envelope arrived in the mail. The text was just 39 words long.

Serviss reads it, "It says, 'Dear Miss Cargill: You were referred to the OU Medical Center for evaluation for kidney transplant. Your referral was reviewed at the transplant patient-care conference, and it was determined that you are not a candidate for transplant at the present time."

Competing Views on Cargill's Competency

Serviss was confused, so she called the nurse at the transplant center. She was told that the transplant team had decided Cargill probably wasn't able to give informed consent.

They had questioned whether Misty had the mental capacity to make her own decision to have the operation, even though the state of Oklahoma already considers Cargill competent to make all her own decisions.

"I thought that was discriminatory," says Serviss. "And the more I thought about it, the more upset I got."

Serviss sees Cargill at her group home cooking dinner, at her job making money and in church on Sunday. Serviss was also with Cargill at the recent league night.

"[Cargill] was out there, you know, measuring and deciding," Serviss recalls. "And then she rolled the ball, and she had her little dance thing that she did when it went down in the gutter. And she came back and she high-fived somebody. And I thought, this is really great. Misty's just having a great time. And she has a life. She's a person. She's a human being. She deserves to have as good a quality life as possible. And she deserves to have a kidney."

NPR wanted to get the Oklahoma University Medical Center's side of the story. Cargill signed the hospital's form that gives doctors permission to talk about her case. But the hospital refused to accept it.

Instead, Dr. Larry Pennington, the head of the transplant team, read a prepared statement: "Due to patient confidentiality issues, OU physicians and the OU Medical Center will not comment on any individual person who has been deemed by his or her own physicians to not have the mental capacity to give informed consent."

An official at the hospital said it was Cargill's own doctor who said she was mentally incompetent. But her personal physician and her kidney doctor deny ever saying that. They say Cargill's a good candidate for a transplant. The kidney doctor says she'll need to go on dialysis soon.

If she doesn't get a transplant, she could die.

Doctors make complex decisions when they pick who gets on a transplant list. And there are good reasons for doctors to be careful about who they choose to put on a transplant list.

As Dr. Pennington noted, there aren't enough donated kidneys for everyone who needs one. Of all the people who come to the OU Medical Center seeking a transplant, he said, "only about 25 percent meet the criteria to be put on the transplant list."

Pennington listed the criteria. Cargill's the right age and the right weight. She'll need a kidney soon, but otherwise she's in good health. Pennington said someone with both Medicare and Medicaid -- Cargill's insurance -- is able to pay for the operation and the follow-up medications. A patient must be able to tell doctors how they're feeling and to take medications for life that prevent the body from rejecting the organ.

In Cargill's case, doctors raised the issue of mental competence.

The dispute is taking a toll on Cargill.

Jeff Carter is Cargill's therapist and he's come to her group home for a counseling session. Cargill and the therapist sit around the dining room table.

"So Misty," Carter asks, "Would you say that since you found out about the fact that you might not be on the list for a kidney transplant, has that affected you on a daily basis?"

Cargill mumbles.

"I can't hear you," Carter prods gently.

"I can't remember now," Cargill says.

Lately, Cargill's been crying a lot, and arguing with her housemates over small things, like what to eat for dinner. Meredith Hogue, who helps run the group home, joins the session

"[Cargill] seems to think it's kind of her fault, you know," Hogue tells Carter. "Because that's what they said, was that she couldn't have it because she wasn't mentally competent. And that made her feel bad."

Cargill's silent. She bends her forehead to her hands, which are pressed together, as if in prayer.

"She'll talk to me, then we get in here and she won't say anything," Hogue says. She looks at Hogue continues. "You get embarrassed huh?" Cargill stares down at the table; she doesn't answer.

Hogue says Cargill is thinking that if she were "normal", she could get a new kidney and then she wouldn't be sick anymore.

"She feels sick every single day and she's tired every single day and that just makes her think, 'Gee, you know, if I was just a little bit better, then they'd give me a kidney,'" Hogue says.

Mental Retardation and Transplants

When Mary Ellen Olbrisch, a clinical psychologist at Virginia Commonwealth University Medical Center in Richmond, surveyed nearly 100 transplant centers, about 60 percent said they'd have serious reservations about giving a kidney to someone with mild to moderate mental retardation. Olbrisch says that's probably not discrimination. It's being careful.

Olbrisch says transplant teams have a moral obligation to try to figure out who has the ability to be a successful patient.

"Transplant is an amazing technology," she explains. "But it doesn't always make a person's life better. You do not go from being sick to being cured. You go from one state of illness to another state of illness. You're always going to be a patient. You have to do a lot to take care of yourself. You have to take drugs that cause other problems for you. You have to take very, very expensive medications. Life as a transplant recipient is not easy. It's not for everybody."

As a psychologist, Olbrisch has helped surgeons decide who's a good candidate -- and who's not. In 21 years, and thousands of patients, she can remember only one or two who had mild retardation.

Recently, Steven Reiss published a study on 42 known cases of people with mental retardation who got kidney transplants. Reiss is an expert on developmental disabilities at Ohio State University. It's his conclusion that when people with retardation do get transplants, they have results that are just as good, or better, than anyone else's.

"We had a 100-percent survival rate after one year, and 90 percent after three years," Reiss says.

One reason for the good outcomes: People with mental retardation often live in group homes, where staff drive them to the doctor and make sure they take all the medications to keep from rejecting the organ.

Reiss says he sees a lot of discrimination, in general, against people with mental retardation. And as hard as transplant centers try to stay neutral, biases do creep in.

"There's thinking out there that some people's lives are more valuable than others," Reiss says. "It's very hard to keep that thinking totally out of the transplant process."

In Oklahoma, Cargill is no closer to getting a transplant. After Christine Serviss, complained, officials at OU Medical Center said they might reconsider if a legal guardian was appointed to make medical decisions for Cargill.

Serviss wasn't sure about that.

"I thought it seemed a little unfair because medical guardianship would take away her legal right to be able to give consent and someone else would have to do it for her," Serviss said. "And it follows you for the rest of your life, that somehow you are incompetent to make a decision about your well being."

But Cargill was getting more worried. So they asked the county department of Adult Protective Services to be her legal guardian. Officials there reviewed her case and declined, saying she's competent to make her own decisions.

Now the hospital wants to do its own testing, despite earlier tests that say Cargill is competent. Christine Serviss doesn't trust the hospital's motives. Cargill is scheduled to be tested by the hospital at the end of January.

On a recent morning, Cargill was at work in a corner of a factory floor. She assembles and boxes meters used in oil fields.

Roy Throneberry is her job coach.

"Yesterday, she and the other guy that usually works with her on the boxes, they put 102 of these together before lunch," Throneberry says. "They were kicking pretty good."

Cargill is proud of her productivity, and that she can work here and make money.

Cargill can work in this factory with people who aren't disabled. She can live in a nice house in a quiet neighborhood. She can go to the movies with her boyfriend. And join the Thursday bowling league. Now she wants the chance to get a kidney transplant, so she can be healthy and continue to live her life.

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