Patients with Disabilities as Teachers (P-DAT)


Family physicians are faced with the often difficult task of treating each patient as an individual instead of a collection of symptoms. What’s more, “[m]edical schools and residencies lack training in communication skills with patients with disabilities, thereby creating potential barriers to care,” according to Sweety Jain, MD, of the Lehigh Valley Health Network[1]. She and her family medicine department developed the Patients with Disabilities as Teachers (P-DAT) program to combat this exact issue, and the PAFP was pleased to partner with Dr. Jain on a grant from the Schwartz Center for Compassionate Healthcare to expand the program to Pennsylvania medical schools.

Simple but profound, the P-DAT program teaches future doctors to always put the patient before the condition or disability. P-DAT comprises several components, including an online resource portal, pre- and post-tests, reflective exercises, and in-person presentations by patients with special health care needs who share their stories and struggles with how they’re treated in doctor’s offices and elsewhere.

The Commonwealth Medical College (TCMC) in Scranton and Jefferson Medical College in Philadelphia were eager to integrate the program into their curricula. The Pennsylvania Academy of Family Physicians caught up with TCMC on its last day of P-DAT training in January to provide members with a close-up look at this innovative program and the people behind its success.

LIVING WITH A DISABILITY

Robert Fox and Keith Williams work for the Center for Independent Living (CIL) in Northeastern Pennsylvania, which provides services that increase the independence of people with disabilities. The organization also performs in-house aid and community advocacy. They were eager to serve as presenters for the P-DAT program when asked if they would provide valuable perspective to the college’s first-year medical students.

“We’re working with the Center for Independent Living on another projects, and I thought, ‘These are the people who are living with disabilities, they’ll know exactly from our community who should be involved’” said Jennifer Joyce, MD, TCMC’s Vice President of the family, community and rural health department. “They bought into it from the start and even added some of their own ideas to give it a northeastern Pennsylvania flair, and really bought into the project from the beginning.”

Williams has served local residents with special needs as a CIL employee for 27 years, and he is intimately familiar with the importance of the services his organization provides.

“My disability is called arthrogryposis,” said Williams. “It’s a neuromuscular, congenital disability. Probably the most comparable disability that’s well-known, that you could compare it to, would be muscular dystrophy, of which there are 30 types. But it’s not. A lot of people will often mistake it for that.

“It means ‘stiff joints,’” he said. “So my arms and legs will only — if you try to straighten them out or flex them, they’ll only reach a certain point. And the secondary disability is amyotonia, which is lack of muscle control — I have the same amount of muscles as anyone else, they’re just weaker.”

Williams, who isn’t old by any means, is a testament to how far treatment of people with disabilities has come over the last few years.

“It was kind of an interesting experience for me, because at the time, years ago, in going to school, it was before a lot of the integration laws changed — and mainstreaming and inclusion and all that,” said Williams. “So I was in totally segregated classes until the age of 15, and then mainstreamed from there [to] go to college.”

Furthermore, Williams’ disability hasn’t prevented him from living a full life.

“In adapting with the disability, I have attendants who come into my home, help me out with all my activities of daily living throughout the morning and the evening, mealtimes,” he said. Someone comes into the office at the Center for Independent Living at noontime weekdays and helps me with my lunch. It’s a daily occurrence — a guy’s got to eat!”

As for Fox — he wasn’t born with his disability. It happened suddenly when he was in his bedroom
at home.

“In lay terms, I had a massive stroke in 1995. It was a week before my 27th birthday, and it came as a shock to me,” he said. “I didn’t see that coming, obviously.

“I just had an earache, and then, of course, all the other warning signs I had, pretty much — the blurred vision, everything like that,” Fox said. “But at the time, there was nothing I could do. Just wait and see.”

Much like Williams, Fox has been active in helping others with disabilities for years.

“Really early on, I was approached by a representative from the [Pennsylvania] Office of Vocational Rehabilitation. The idea with that state agency is to get people back to work who are disabled, people that have some kind of barrier to getting back to work,” he said. “I worked for them for over 10 years. I went back to school, got my bachelor’s degree, Penn State, and I’m working at the Center for Independent Living now.”

TREATING PATIENTS WITH DISABILITIES

This expanded iteration of the P-DAT program began in 2013 with training sessions for program faculty at the two medical schools. By the time Fox and Williams became involved, the schools had developed plans for the program that would fit in easily with an existing curriculum.

“I thought the program fit so well with TCMC’s mission, and I started to look for different places we could fit it into the curriculum,” Joyce said.

It didn’t take long before the P-DAT program found its home at the school.

“I’m the course director for human structure and function, so we teach basically all the anatomy — microscopic anatomy, gross anatomy, embryology, radiology, things like that,” said Kathy Doane, Ph.D., associate professor of anatomy at TCMC. “Our course really covers a lot of the functioning of the human body. And we talk a lot about things that could go wrong. So we talk a lot about ‘If you cut this nerve, what happens?’ We talk a lot about congenital issues that can happen.

“Dr. Joyce came to me and suggested maybe [the students] should see actual patients that have some of these disabilities and see how they have to deal with it on an everyday basis,” she said. “And also, I think one thing that really helps a lot … the person-first language that they’re hearing about. That, I think, is really new to them. I think it’s going to help them a lot when they go out into the community, because I think it’s something they just have never thought about.”

“One of the parts of this whole program that Bob and I were drawn to — talking with students and educating the medical community — kind of stems from our own experiences and what we’ve seen in doing advocacy in the medical community,” said Williams. “And that is, there are times — a lot of times, actually — when someone with a disability will go to the doctor or be admitted or need some kind of treatment, whatever the case, for an issue or a concern that anybody else can have. A member of the public. Not everything is about the disability. A lot of it is, true, but a lot
of it is not.”

“What sometimes happens — I have to stress, sometimes, because I think people are becoming more and more aware — sometimes someone in the medical community will [only] see the disability,” he said. “My case [is obvious]. Someone in a chair. They might see Bob [Fox], they might know or not know that you had a stroke, but they see the affected gait, and they’re curious. They might see someone who’s blind or deaf. That becomes the overwhelming factor. That becomes the predominant issue in treating this person.”

When physicians aren’t able to look past the disability, Williams said, it can be difficult to make a diagnosis independent of that factor.

“I’ve been in and out of the hospital a few times over the last few years with cellulitis that I get just a couple inches above my left foot,” said Williams. “Checked it out — nothing to do with the disability; it’s just for whatever reason, I get this crazy infection, and they put me on antibiotics through
an IV drip, and I keep my fingers crossed that it goes away.

“[It has] nothing to do with the disability,” he said. “But sometimes, that reaction is there. They see the wheelchair, then all the concerns start coming in. ‘Oh, cellulitis? Is this just the tip of the iceberg?’”

And that’s not the only issue patients with special health care needs have to face when visiting a health professional.

“Then there are secondary issues. Especially for someone with a mobility disability. Sometimes people tend to tie the disability — add more to it than is really needed,” Williams said. “And we can understand that. It’s not that it’s a, you know, inherently bad thing. You change that through education, awareness, and attitudinal changes. But it takes time.”

Doane says that’s why it’s so critical to teach these skills early through P-DAT.

“I don’t think that [medical students] really have any idea what it’s like to be out there and practice,” said Doane. “They’ve had some experience out in the community, but not much. I think it’s a great opportunity for them.”

DEALING WITH FAMILY PHYSICIANS

Fortunately, both Fox and Williams say the majority of their interactions with health care workers, especially family physicians, are positive.

“I have a very good relationship with my family physician!” said Fox. “I’ve been with him for over 20 years. My wife has met with him in the appointments I’ve had, and she just couldn’t believe how he’s so thorough in that 14 minutes that you get, you know? Always asking questions about different things, definitely the kind of person you want.”

“We always come back to the attitudinal barriers,” said Williams. “It’s not so much been about the arthrogryposis, the disability. Working with doctors around that has been fine. It’s more of, when
we talk about the patient skills, or sometimes
lack thereof.

“A classic example, and Bob and I have done it in roleplaying when we go to speak … What often happens with someone with a disability, and it’s happened to me many times, especially in the past, is in the hospital room,” he said. “The person who’s with you — family member, spouse, attendant or whatever — if not the doctor, then at the very least the medical receptionist asks all their questions to the one who they’re with.”

It’s not on purpose, Williams stressed, but it’s uncomfortable feeling like an invisible patient.

“’Oh, I see that he was here six months ago.’ Or ‘What was he here for? Oh! Here it is, it’s in the records.’ ‘What’s wrong with him now?’ ‘Has his insurance changed or anything?’” Williams said those are questions with which he’s’ familiar. “Even in the hospital, what I was referencing earlier with the cellulitis, when someone would be visiting me — even just a friend who’s not involved in doing all the activities of daily living with me, like a family member or an attendant — they’re looking at that person!”

Williams has developed a subtle method to redirect the attention.

“But then, the reaction to that, the way to combat that, is just to jump in. When it happened last, I didn’t say ‘Oh, doctor, I’m over here.’ I know some people who have,” he said. “But [the doctor] would say something to the person who was in the room with me, and I’d say ‘Oh really? But what about…’ or ‘What do you mean
by that?’”

“Then it’s like, ‘Oh!’” he continued. “And I honestly think, at least in a couple cases, they just did not realize what they were doing. Then they spun around and faced me. I think it was more or less accidental or unintentional, but there’s still
a lot of awareness that needs to be done.”

“The best take-home message,” Joyce said, “is that the students are now aware of disabilities as one of the aspects of diversity and inclusion. They think about race, they think about religion, they think about ethnicity — [now they think about] diversity and inclusion particularly related to disabilities and person-first language.”

OVERCOMING THE BARRIERS

Fox told the medical students he talked to in the P-DAT lecture that having a disability places one into a minority group: “It’s the only minority that anyone can become a part of, at any time, for any reason.” It adds a certain gravity to the lessons the P-DAT program teaches: the golden rule certainly applies here, but it’s not an easy or obvious application.

Some of these lessons might seem simple, like always offering to shake hands. Others are easily forgotten: if a person uses a wheelchair or crutches, speak to them at eye-level. Small habits can be changed to reap great benefits — and that’s often the difference between a good family physician and a fantastic one.

For more information about the P-DAT program, please visit the PAFP’s Pa. Patients with Disabilities as Teachers Program page. You’ll find plenty of helpful resources that you can begin using immediately to better serve your patients with special health care needs.

[1] Jain S, Foster E, Biery N, Boyle V. Patients with disabilities as teachers. Fam Med. 2013 Jan;45(1):37-9.

This article was originally featured in Keystone Physician Magazine Winter 2014.