DAVID GREENE, host:
This is MORNING EDITION from NPR News. I'm David Greene.
RENEE MONTAGNE, host:
And I'm Renee Montagne. Today in Your Health, helping patients with serious or complicated medical problems navigate the medical system. It's a common problem even for those who would seem to be sophisticated about medical care, like families of doctors. Now, some patients are turning to advocates to help get proper care. NPR's Richard Knox knows from his own experience how lucky these patients are. He has this story.
RICHARD KNOX: I began thinking about the need for patient advocates, really, a while ago. It was during my father's final three weeks of life. The story began when my stepmother called out of the blue one day and she said your father's in the hospital and they want to know if we want heroic measures.
So I flew to Florida and we went through this really stormy three-week period in which we had to make a whole lot of decisions. And we had a lot of trouble getting information that we needed about what was going on and what he was suffering from and what the implications were of our choices.
And I began thinking during this period, this is really hard. And it must be even harder for a lot of people, because my stepmother was trained as a nurse and I'd been a medical writer for a while at that point. I was telling this story recently to somebody I've known for a long time. He's a Boston doctor, and he had this response.
Dr. JONATHAN FINE (Bedside Advocates): The story you just told me is universal.
KNOX: That's Dr. Jonathan Fine. He's a retired physician, and he says that practically everybody at some point needs an advocate.
Dr. FINE: Having an advocate who knows you, who knows your medical history and can be articulate for you with a nurse, with a doctor, or even with a secretary can make a substantial difference.
KNOX: He came to that understanding because he had a friend who was 85 years old and who got terribly sick. And he says he gravitated to this guy's bedside as a friend. And he realized during the course of this guy's hospitalization and repeated hospitalizations that there were a lot of things that were missed - bad communications and things like that.
And out of that, he decided that there's a real need for this kind of service. And he decided with some colleagues to found an organization of volunteers called Bedside Advocates that would offer this kind of help for people in need.
Dr. FINE: We don't practice medicine. We're the advocates. Some of us are physicians, some of us are nurses, others are laypeople. The bottom line is we're accessible and try to relieve unnecessary anxiety and see that their needs are taken care of adequately, promptly.
KNOX: I said, gee, that sounds really interesting. I'd like to see how it works. So Dr. Fine introduced me to one of his fellow volunteers. He's a semi-retired physician in Boston.
Dr. DOUG FIERO (Bedside Advocates): I'm Doug Fiero. I practice part-time. I work at several community health centers here in Boston, and I also fill in for Boston Health Care for the Homeless.
KNOX: Dr. Fiero suggests that we meet at the apartment of one of his clients. Her name is Betsaida Gutierrez. She's 56 years old. She has a lovely, warm, sunny disposition and a lot of medical problems.
We sit around her kitchen table and discuss her medical history. Around 18 months ago, she had sharp stomach pains in her stomach. She stopped eating and began to lose weight at a dramatic rate.
Dr. FIERO: She was very ill at that point. She was weak. She could barely get up and walk.
KNOX: Her weight went down from her usual 125 pounds all the way down to 77. Dr. Fiero says it was getting pretty alarming.
Dr. FIERO: The doctors didn't really have a good idea what was going on with you. The reason they weren't direct in communicating is they didn't really know.
Ms. BETSAIDA GUTIERREZ: I didn't understand it at all. I just had a sense that I was just wasting. I was wasting, and there's nothing that can be done.
KNOX: She didn't lack for doctors. But the problem was the doctors weren't communicating very well with each other about what they were thinking and they weren't telling Gutierrez what they were thinking. Eventually, the doctors decided that what she really needed was to have a good part of her colon removed. And so the surgeons did that. And they thought, well, that solves the problem. But Dr. Fiero knew that they really hadn't.
Dr. FIERO: We were quite sure there was more to this, because you were continuing to fail.
KNOX: Finally, antibiotics and some nutritional counseling and support got her over the hump, and she began to gain weight and feel better. Looking back on it now, Gutierrez says there's no way she could have done this on her own.
Ms. GUTIERREZ: I've been able to tough the illness, the pain, the suffering. And because I have someone I have someone I trust, somebody who understands who I am, somebody who basically explains it to me 10 times if he has to, together we've been able to do the work.
KNOX: So it's plain that this group called Bedside Advocates does important work, but the problem is there are not many of them and this work is really intensive. Over the last three years of its existence, this group has only been able to help about 20 patients.
So I began scouting around, looking for somebody who does this kind of work on a paid basis.
Ms. DIANNE SAVASTANO (Nurse, Patient Advocate): Hi, Bob.
(Soundbite of laughter)
Mr. BOB ECKHOFF: How are you?
Ms. SAVASTANO: How are you? I haven't seen you in awhile.
KNOX: Dianne Savastano is a nurse who, three years ago, decided to set up a patient advocacy service north of Boston. Today, she's visiting a client. Bob Eckhoff is 92, and he's had a complicated medical history. Savastano's job is to keep on top of the care that Mr. Eckhoff is getting from his doctor and from others.
Ms. SAVASTANO: A little birdie told me that you had an issue with your toe last week.
Mr. ECKHOFF: I did.
Ms. SAVASTANO: Yeah. How is it?
KNOX: For somebody who's diabetic, a toe infection can quickly become life threatening.
Ms. SAVASTANO: He had an open area that was about that big. When I first met him, it was huge. That was what precipitated his hospitalization and then my involvement.
Ms. BARBARA PORTER: Dad, you got resurrected. You literally could - did get resurrected. He would be either dead or in a nursing home right now if it wasn't for Dianne.
KNOX: That's Barbara Porter. She is Eckhoff's daughter. She recruited Savastano because she was feeling just really desperate.
Ms. PORTER: He has moderate-to-severe dementia, diabetes, congestive heart failure, Foley catheter, renal failure. I just felt like we were spiraling into this abyss.
KNOX: Porter says that Eckhoff's primary doctor didn't really want to work with Savastano, so she recruited a new team of caregivers. And Eckhoff says he's feeling really well cared for.
Mr. ECKHOFF: It's just been great. Having somebody else to help like this was just... it's wonderful.
KNOX: Now the main goal is to keep Eckhoff out of the hospital when he gets the next infection or congestive heart failure or whatever the problem.
Ms. PORTER: We're not doing heroic measures here. We're trying to keep him out of the hospital. We're trying to keep him safe, keep him happy so that he has good quality of life.
KNOX: This kind of care doesn't happen all by itself. It requires a lot of communication. It requires advocacy. It requires diplomacy. Typically, what happens if somebody in an assisted living situation becomes really sick, he gets transferred automatically to the hospital. Savastano is trying to make sure that doesn't happen in Mr. Eckhoff's case. But the bottom line is Savastano's help is relatively expensive.
Ms. PORTER: I think we paid you about $15,000 last year, more than worth every penny of it.
(Soundbite of laughter)
Ms. SAVASTANO: I'm expensive. I recognize that I am expensive. I would say that if anyone were going to reimburse such services, you'd have to prove that you were saving a whole lot of money.
KNOX: That really shouldn't be that difficult to do. Even avoiding one hospitalization can save tens of thousands of dollars. But Savastano doesn't expect Medicare and other insurers to pay for her services anytime soon.
Ms. SAVASTANO: It's going to take a long time. So we've to deal with it as it is. We can't just wait for all that to change.
KNOX: There are some other people around the country like Dianne Savastano who are doing this kind of work for a fee, and Bedside Advocates is trying to grow. Betsaida Gutierrez is so happy with what Bedside Advocates has done for her that she's decided to volunteer herself.
Ms. GUTIERREZ: I have seen the change. My client now is going through pulmonary therapy. He is getting the bigger doctor coming into the appointments than before, and we get health care done.
KNOX: Bedside Advocates is training more people like Betsaida Gutierrez to do this work, but the jury's still out on how many volunteers will come forward and how many other groups like this will spring up.
Richard Knox, NPR News, Boston.
MONTAGNE: And Richard wrote about the last weeks of his father's life back in 1989 in Boston Globe. You can read that article about a problem that is still with us at npr.org.