MELISSA BLOCK, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Melissa Block.
Right now, nearly 69,000 Americans are waiting for a kidney transplant. Only about 16,000 will get one this year and that means doctors have to make decisions, choices that can mean life or death. Often, people with mental retardation are left off the transplant lists. Their advocates say they're excluded unfairly.
NPR's Joseph Shapiro has the story of one young woman with such a case from Oklahoma.
(Soundbite of bowling)
JOSEPH SHAPIRO: It's league night at this bowling alley in Duncan, Oklahoma. Misty Cargill's working on a spare. She's five foot two and tiny. She lets the heavy ball go but at the last moment it drifts and leaves the pins standing.
Ms. MISTY CARGILL: That close and I would have gotten a spare.
SHAPIRO: Misty Cargill's 25, a young woman with mild mental retardation. She saves money from her factory job to go bowling with friends and women in her group home. Tonight she shows off her bowling shoes. They're black and hot pink. She saved up to buy them, and her bowling ball too.
Ms. CARGILL: It's an eight-pounder, orange, pink and yellow.
SHAPIRO: Misty's boyfriend, Mike Bishop, is on the next lane. His team is competing against people who aren't disabled.
(Soundbite of clapping)
Mr. MIKE BISHOP: They kicked our butts. We lost.
SHAPIRO: Misty and Mike walked in tonight holding hands. Misty likes to talk about how she and Mike go on dates to the old movie theater downtown and how he recently bought her sparkly earrings for her birthday.
There's one thing Misty Cargill doesn't like to talk about, the fact that she's sick. Her doctors say she needs a kidney transplant. She was born with abnormally small kidneys. Now those kidneys are failing.
Ms. CARGILL: One kidney's just really small and I just need a new one.
SHAPIRO: So what do you think would happen, though, if you don't get it?
Ms. CARGILL: I don't know. I'm going to be sick and stay sick and stuff, and not be healthy.
SHAPIRO: Misty's caseworker at Duncan Group Homes is Christine Serviss. She's known Misty since she was a little girl. Now Serviss sees Misty at a group home cooking dinner, at her job making money, in church on Sunday and the other night, at the bowling alley.
Ms. CHRISTINE SERVISS (Duncan Group Homes): And she was out there, you know, measuring and deciding 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.
SHAPIRO: To get Misty on a transplant list, Serviss drove her the 80 miles to Oklahoma City. There, they met members of the transplant team at Oklahoma University Medical Center. One nurse explained to Misty and Serviss that a donated kidney is a precious thing.
Ms. SERVISS: And she emphasized how important it was to take care of it and had a little bit of concern 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.
SHAPIRO: Christine Serviss said that wouldn't be a problem because at the group home, they're staffed to support Misty. They drove home feeling hopeful. Four weeks went by, then a thin envelope arrived in the mail. The text was just 39 words long.
Ms. SERVISS: And it says, "Dear Ms. 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."
SHAPIRO: Serviss was confused, so she called the nurse at the transplant center.
Ms. SERVISS: And that's when she brought this up, that the team had discussed it and decided that Misty probably wasn't able to give informed consent.
SHAPIRO: The transplant team questioned whether Misty had the mental capacity to make her own decision to have the operation, even though the State of Oklahoma already considers Misty Cargill competent to make all her own decisions.
Ms. SERVISS: I thought that was discriminatory and the more I thought about it, the more upset I got.
SHAPIRO: I wanted to hear the OU Medical Center's side of the story so Misty signed, in her neat printing, the hospital's form that gives doctor's 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.
Dr. LARRY PENNINGTON (University of Oklahoma Medical Center): 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.
SHAPIRO: An official at the hospital said it was Misty's own doctor who said she was mentally incompetent, but her personal physician and her kidney doctor deny ever saying that. They say Misty'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.
SHAPIRO: Doctors make complex decisions when they pick who gets on a transplant list. As Dr. Pennington noted, there aren't enough donated kidneys for everyone who needs one.
Dr. PENNINGTON: All potential kidney transplant patients are referred to the program. Only about 25 percent meet the criteria to be put on the transplant list.
SHAPIRO: The dispute over mental competence is taking a toll on Misty.
(Soundbite of doorbell)
SHAPIRO: Back at Misty's group home, Jeff Carter arrives. He's Misty's therapist and he's come for a counseling session. Misty and the therapist sit around the dining room table.
Mr. JEFF CARTER (Therapist): So Misty, would you say that since you found out about the fact that you might not be on the list for a kidney transplant, how's that affected you on a daily basis?
Ms. CARGILL: (Unintelligible)
Mr. CARTER: I can't hear you.
Ms. CARGILL: I can't remember now.
SHAPIRO: Lately, Misty's been crying a lot and arguing with her housemates over small things, like what to eat for dinner. Meredith Hogue joins the session. She helps run the group home, so she knows Misty pretty well.
Ms. MEREDITH HOGUE (Duncan Group Homes): She seems to think it's kind of her fault, you know, 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.
SHAPIRO: Misty's silent. She bends her forehead to her hands, which are pressed together as if in prayer. She stares down at the table as she listens to Hogue.
Ms. HOGUE: She'll talk to me and then we get in here and she won't say anything. I mean, you get embarrassed, huh? She's like thinking that if she was normal, you know, the way they say normal, that she could get a new kidney and then she wouldn't be sick anymore. And 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 than they'd give me a kidney.
Ms. MARY ELLEN OLBRISCH (Virginia Commonwealth University Medical Center): This is our inpatient transplant unit on the 9th Floor of Main Hospital.
SHAPIRO: Mary Ellen Olbrisch is a clinical psychologist at Virginia Commonwealth University Medical Center in Richmond. When she 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. She says transplant teams have a moral obligation to try to figure out who's got the ability to be a successful patient.
Ms. OLBRISCH: Transplant is an amazing technology 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.
SHAPIRO: 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 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. He's alive today thanks to a liver transplant he got.
Reiss's conclusion: when people with retardation do get transplants, they have results just as good, or better, than anyone else's.
Dr. STEVEN REISS (Ohio State University): We had a 100-percent survival rate after one year and 90 percent after three years.
SHAPIRO: One reason for the good outcomes. People like Misty Cargill 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.
Dr. REISS: There's thinking out there that some people's lives are more valuable than others. You know, it's very hard to keep that thinking out of -totally out of the transplant process. I believe that there is some discrimination, yes.
SHAPIRO: In Oklahoma, Misty Cargill is no closer to getting a transplant. After Christine Serviss, her advocate complained, officials at OU Medical Center said they might reconsider if a legal guardian was appointed to make medical decisions for Misty.
Christine Serviss wasn't sure about that.
Ms. SERVISS: 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, and it follows you for the rest of your life, that somehow you are incompetent to make a decision about your well being.
SHAPIRO: But Misty was getting more worried. So they asked the county department of Adult Protective Services to be Misty's legal guardian. Officials there reviewed her case, and said no, Misty is competent to make her own decisions.
Now the hospital wants to do its own testing, even though earlier tests say Misty is competent. Christine Serviss doesn't trust the hospital's motives.
On a recent morning, Misty was at work in a corner of a factory floor. She assembles meters used in oil fields, then she boxes them. On this day, she's proud of her productivity.
Roy Throneberry is her job coach.
Mr. ROY THRONEBERRY (Job Coach): Yesterday, her and the other guy that usually works with her with the boxes, they put 102 of these together before lunch, yesterday. So I mean they were kicking pretty good.
Ms. CARGILL: You said a 130, you know, before lunch.
SHAPIRO: What's the best part of being here at (unintelligible)?
Ms. CARGILL: Just working. Making the money and stuff.
SHAPIRO: Misty 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 Misty Cargill wants the chance to get a kidney transplant, so she can be healthy and continue to live her life.
Joseph Shapiro, NPR News.
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