By Rachel Zimmerman
Kevin Fitzgerald is parked in a wheelchair near a set of elevators at Boston Medical Center, tense with fear.
He’s a big guy, nearly six feet and about 280 pounds. But because of his severe autism, Kevin can’t verbalize his thoughts. He can only moan.
Dressed in her scrubs, Dr. Susannah Rowe, Kevin’s eye surgeon, sits on the floor next to him. While waiting for a heavy dose of anti-anxiety meds to calm her patient, Rowe practices what she calls “verbal anesthesia.” “It’s OK to be afraid,” she tells Kevin. “Want to hold my hand?”
Institutionalized since childhood, Kevin, now 56, has been losing his sight for the past two years to the point that doctors said he can see little more than shadows. He’s here at BMC awaiting cataract surgery, a fairly simple procedure that generally takes about 30 minutes in the operating room. But for Kevin, who has long feared doctors and has a history of aggressive, unpredictable behavior — like hitting himself or inadvertently hurting others or running away when he’s in distress — the procedure isn’t simple at all.
It’s not simple for the doctors, either. They’re practicing a special art: medical care for the disabled and mentally ill. It often breaks the rules of traditional care, loses money for their practices and can even put them at physical risk if a frightened patient spins out of control.
But there’s a huge need for such specialized care. As many as 50 percent of people with intellectual disability (defined as an individual with an IQ of 70 or less and difficulty functioning in daily life, among other criteria) have vision problems, according to state experts. And a far higher proportion of these disabled patients have severe vision problems compared to the general population.
With delayed or limited access to treatment, these men and women can begin to lose their already-tenuous connection with the physical world; and their behavior, driven by fear and the inability to understand why things are growing darker, can deteriorate further toward what looks like aggression. Rowe, the surgeon, says anyone with a disability or severe mental illness whose mood, anxiety or behavior gets worse should immediately have their vision checked.
Join doctors in the operating room for Kevin’s surgery. Warning: It gets graphic.
Kevin’s situation may seem exceptional but he’s not alone. According to the state Department of Developmental Services, there are about 32,000 adults and children with intellectual disability (what used to be called mental retardation) eligible for services in Massachusetts. About 9,000 of these adults live in group homes.
But not everyone with an intellectual or developmental disability is getting the care they need, experts say. Consider:
- A recent Massachusetts study found that people with autism still face significant barriers in accessing medical care, and it’s worse for patients like Kevin, who can’t fully communicate.
- A 2009 survey of eye specialists from around the state found that while most providers believe patients with intellectual disabilities require 30-60 minutes longer for a medical appointment, the vast majority of the specialists didn’t allot that extra time.
- According to a 2004 Public Health Reports article: “Research indicates that most individuals with developmental disabilities do not receive the services that their health conditions require…[and] individuals with mental retardation face more barriers to health care than the general population.
Research has also demonstrated that many primary care providers are unprepared or otherwise reluctant to provide routine or emergency medical and dental care to people with developmental disabilities.”
Andrew Lenhardt, a primary care doctor in Hamilton, Mass., who treats many disabled patients, including Kevin, says: “The level of dignity and respect and basic medical care that’s given to people with disabilities is often meager…These people can’t advocate for themselves, they’re an easy target to be treated inadequately or poorly.”
It’s an attitude, he says, that pervades the culture.
“I think there is an assumption that if somebody has a lower cognitive ability or is non-verbal that their life is not as rich and complete,” Lenhardt said. “And therefore their life is not as important and therefore … not as worth living.”
Even as a student at UMass Medical School in the late ’90s, Lenhardt encountered this attitude toward disabled patients. “And I do remember very well being on the rounds, and the person taking care of them making the comment that taking care of people like this was like veterinary medicine.”
Sharon Oxx, director of health services at the state Department of Developmental Services, and a registered nurse, points to the lack of experience and training many doctors have in treating developmentally disabled people. The problem became acute in the wake of deinstitutionalization, she says, when the big state facilities began to close and many patients moved into the community.
“So, we have people that have moved from the institution, they’re now living in the community, and it’s no longer these specialists that work in the institution that have a lot of expertise and experience in dealing with these people,” she said. “Now it’s going to be the general practitioner that’s going to have to take care of this individual.”
These days, Oxx says, the state is trying to help decrease the barriers to care in many ways. For instance, it’s promoting training for doctors while they’re still in medical school so they get some exposure to patients with disabilities. It’s created a “health review checklist” so caregivers can easily communicate a patient’s symptoms to the doctor. Most important, says Oxx, is that doctors already skilled at caring for disabled patients share their expertise with other practitioners.
Susannah Rowe, 49, established BMC’s Exceptional Vision Service to offer a more compassionate and personalized approach to caring for such patients — people with schizophrenia and psychosis, homeless people, patients who can not speak or communicate — people who haven’t been able to get critical medical care through normal channels.
To do this requires a team approach, more time for each patient and a diminished income.
“We all do this for less money because we believe in the work,” Rowe says. “I think this is most simply why I became a doctor… it fulfills me professionally the way that nothing else I do does. I feel so fortunate to be able to take a skill that I have and use it to dramatically improve people’s lives.”
Her chief, Dr. Stephen P. Christiansen, who heads BMC’s Department of Ophthalmology, estimates that the cost of treating a patient like Kevin is about two to four times higher than an average cataract patient without significant disability.
“From a physician’s standpoint it’s very rewarding,” he says, “from a hospital’s standpoint…it’s not rewarding.”
He says BMC, as a safety-net hospital, is willing to incur financial losses like this, but that may not be the case elsewhere. “I would say that there would be institutions…who would strongly discourage this kind of care, because they simply can’t afford it,” he said.
But, he adds, the short-term costs may be offset by longer-term benefits: with Kevin’s eyesight restored, he’s more independent, requiring fewer caretakers. He’s much less likely to fall or injure himself. And he’s able to return to his job packing boxes and doing other piecework.
An Institutionalized Childhood
With his round face and belly, big blue eyes and general heft, Kevin gives off a gentle giant vibe. But as a child growing up in Lowell, he didn’t speak or act like his five other siblings. He was diagnosed as “severely mentally retarded” back when “there was no such thing as autism” his sister and legal guardian, Pam Blanchette, said. “An aunt suggested that my mother couldn’t handle having such a child as Kevin,” and he was placed in a state mental institution, Belchertown, before he turned 6. Pam says the facility “was like a prison. It was a scary place for a kid.”
Kevin’s lifelong fear of doctors, Blanchette believes, comes from years of equating medical care with pain. As a young adult, Kevin moved to a group home, and for over 20 years, has lived in Lynnfield with four other men in a state-operated residential home for the developmentally disabled. There, he built a life for himself. He worked for pay doing various types of piecework; he loved horses and did some riding, took walks and listened to his music, mostly classic rock. “He seemed very happy,” Blanchette said.
It’s unclear exactly what or how much Kevin understands. A few things are certain: he bonds with some of the kind, compassionate caregivers who are able to calm him when his anxiety spikes; he can respond with a smile or high five when things are going well, and he loves, loves loves his coffee (and may plow you down if you’re between him and a steaming cup). “I think he understands much more than people give him credit for,” says Peter Scully, one of Kevin’s caregivers at the group home.
But nearly two years ago, Kevin’s temperament began to change. It took months before his caregivers began to suspect that his eyesight was declining, and even longer to learn that cataracts were growing in both eyes. (Even Lenhardt, Kevin’s doctor, didn’t consider that deteriorating sight might be driving Kevin’s increased anxiety.) “He was blowing up and having outbursts when he hadn’t before,” Blanchette said. “He was getting angrier.” At a Christmas party in 2011, she said, Kevin “was so agitated…he was screaming, banging on a table to the point he scared me. I was scared. I’d never seen him like that before. I now really believe it was his eyesight. He was afraid.”
Lisa DiBonaventura, the statewide director for Vision & Vision Loss Services with the Department of Developmental Services, estimates that about 25-50 percent of people with intellectual disability have vision problems; about 12 percent of them severe. In the general U.S. population, she says, only 1-2 percent face such severe problems.
The reasons aren’t always clear. Some conditions, like Down syndrome, are associated with early onset of vision loss. In other cases, as with fetal alcohol syndrome, the optic nerve can be underdeveloped. And some medications themselves compromise vision.
Whatever the cause, she said, the impact of vision loss on intellectually disabled people who also have trouble communicating can be devastating. Imagine losing your eyesight when it’s one of the few solid connections you have with the world. “You can feel quite anxious,” DiBonaventura said, “if you can hear things around you but are uncertain of the source and no one is explaining to you what’s going on…and you don’t have the language or communication skill to ask, ‘What is happening?’ or [say] ‘That scares me’ or ‘What is that sound?’ ”
For Kevin, his deteriorating sight (along with diminished hearing due to massive wax buildup in his ears) made him much more anxious and agitated, his caregivers said. With this mounting stress, and his world darkening to shadows, Kevin’s self-abuse worsened and he’d use his fist to hit himself in the head, where he has a large scar as a result. Staff at the group home began putting him in a special protective helmet more often, caregivers said.
Sometimes Kevin got so scared he’d simply storm out of doctors’ offices, said Mark Poitras, a licensed practical nurse who has worked with Kevin for eight years. This kind of disruption made some medical providers nervous — worried about their own safety and the well-being of other patients.
Lenhardt, Kevin’s primary care doctor, said: “The nurses became more and more uncomfortable with having him in the office. There was a concern that someone could get hurt.”
To avoid this type of out-of-control scene, Lenhardt started examining Kevin in a parked van on the street. Clearly, not every doctor is willing to make these kind of concessions. “Some providers have an interest and some do not,” Lenhardt said. “I can tell you many stories of group home patients going to the ER and being treated very poorly. A lot of doctors will say very frankly, ‘Why do you care so much? Why are you taking all this time and care of these people?’ ”
Meanwhile, Kevin’s sister was getting desperate; she believed her brother was going blind. She said one surgeon who was scheduled to operate on Kevin told her that Kevin would have to be physically restrained, heavily drugged and sent home with an eye patch for the cataract surgery. She was skeptical. “I knew that anything on his face, he’d rip off,” she said. “I felt helpless though, it sounded like this surgery would be a disaster.”
In the run-up to the surgery, one situation stood out. At an appointment for blood work in June of last year, a nurse approached Kevin while adjusting his exam table, which spooked him, according to Poitras. Kevin jumped up and tried to escape, which startled the nurse who rushed out of the room leaving Kevin, and his caregivers, Poitras and Scully, alone. Lurching to break free, Kevin tried to jump over the two men, who got hurt. Ultimately, Poitras and Scully — both incredibly devoted professionals who care for Kevin with tenderness and skill — were able to get Kevin back in the van, but both of them sustained back injuries and had to take a few days off work.
Shortly after that, Poitras said he got a message that Kevin’s eye surgery was cancelled.
Ultimately, Blanchette found Dr. Rowe. (Pam’s daughter, a special-ed teacher, learned of Rowe’s work during a seminar at the Perkins Institute for the Blind.)
“I was nervous about getting Kevin into Boston to see her,” Blanchette said. “After what had happened I was definitely nervous. But when I met Dr. Rowe I had such a good feeling right off the bat. I got teary-eyed in her office.”
From Nigeria To Harvard
Susannah Rowe was born in Nigeria and came to the U.S. when she was around 3. The second of five children in an academic household, she says the family traveled extensively and early on, “I became fascinated by spending time with people very different from me.”
Rowe spent her junior year of college in Bogota, Colombia, studying and volunteering in a big inner-city hospital. After graduating, she returned to work with the Colombian Department of Public Health in Medellin on a quality improvement project with lay midwives. After two more years working in a lab studying vision science at Harvard Medical School, she decided to become a doctor. She earned a degree in medicine at Johns Hopkins School of Medicine with a masters in Public Health.
At Boston Medical, Rowe has treated more than 50 “special needs” patients. The key, she says, is figuring out each person’s unique obstacles and working with a team of providers to establish a plan. For Kevin, that meant small details, like not having to undress for surgery, or wear a hospital wristband. It also involved larger medical decisions: for instance, the anesthesiologist would not hook Kevin up to an IV (which gives doctors easy access to fast-acting medication if there’s an emergency) in the pre-op room as usual. The medical team would also refrain from using various other monitors until Kevin was deeply sedated in the OR because he’d likely rip them off; no EKG on his chest to monitor his heart rate or a clamp on his finger to track his oxygen saturation. Rowe equates all this to “flying without instruments.”
Also, there would be no eye patch after surgery. Instead Rowe would tightly stitch up Kevin’s wound (an older type of procedure, that has fallen out of favor because it’s more complex and time consuming). There would be no local anesthesia — a numb eye might be vulnerable to intense scratching and rubbing.
Because of all the extra care required to treat Kevin, including performing a full eye exam for each of his two surgeries, and taking technical measurements under anesthesia, the overall process would be long: four hours or so total time for each eye compared to the usual 30 minutes in the OR for regular cataract surgery. Kevin’s caregivers weren’t sure he’d make it through.
Back at the hospital, the anti-anxiety drugs are beginning to calm Kevin down — but not quite enough. Normal cataract surgery only requires a few numbing eyedrops, and some Tylenol after the procedure. Kevin will need more: general anesthesia as well as inhaled sedation.
The procedure begins with Kevin wailing intermittently while five adults hold him and a doctor administers a “dart,” a large injection, of ketamine to sedate him almost to the point of unconsciousness. It’s the only moment during the course of his surgery that comes across as harsh in any way. But, as the nurse anesthetist explains later: “Sometimes the quickest knife cuts the best.” It’s true, once the dart ordeal is over, things run fairly smoothly: Kevin is able to remain fully dressed, with his shoes on and with no IV as he’s wheeled into the OR.
Rowe explains a bit about the surgery: she’ll remove the natural lens of the eye, which in Kevin’s case had grown cloudy, with a loss of transparency — that’s the cataract. After removing the lens through an incision, she’ll replace it with a synthetic, transparent lens which will also correct his vision. (Also under anesthesia, Dr. Rowe called in ENT Dr. Anand Devaiah to clean out Kevin’s ears: it turns out they were packed with large rocks of Coca-Cola-colored wax.)
Another Hospital ‘Would Shut Us Down’
In the time it takes to operate on Kevin (who is covered by MassHealth and Medicare) Rowe could have done three routine cataract surgeries, she says, earning three times the money for her own practice and for the hospital. “I’m afraid to ask how much we lose on these cases but I suspect it’s several thousand per eye,” she said. “The chiefs are all supportive — it’s not like it’s guerrilla eye service. But if the finance people at any other hospital tried to analyze our losses, they would have already shut us down.”
With at least six medical professionals in the OR, including the anesthesiologist and nurse anesthetist, a resident and several nurses, the surgery begins. Rowe teaches the technique as she goes along, working away with a scalpel and ultrasound. There’s a slight delay when she finds Kevin’s iris loose and floppy, requiring her to stabilize it. “I’m having some challenges,” she says.
Eventually, she implants a tiny acrylic lens through a small incision. She stitches it up as tightly as possible and then pushes and prods the eye to be sure that the wound is secure; she wants to be certain that when Kevin rubs his eye, he won’t cause damage to the wound or dislodge the lens. She intentionally leaves the eye anesthesia-free. “If he’s going to knuckle his eye, he’s going to feel it,” she says. (He might get a pain pill later if he appears uncomfortable, but his eye will never be “asleep.”)
Rowe wasn’t always this confident. Her “aha” moment came about 12 years ago, when she was treating a patient with Down syndrome whose sight was deteriorating fast. He could no longer recognize family members, or see to feed himself. He was scared, and would no doubt be tough to care for. Still, Rowe and her colleagues decided to take the risk and operate.
Rowe says that while in residency at the Massachusetts Eye and Ear Infirmary, a Harvard teaching hospital, she learned cataract surgery for this type of population in a specific way: “You put somebody under general anesthesia, anesthetize their eye while they’re asleep, do the surgery and then do everything you can and hope they don’t touch their eye for at least a week or more.”
But that approach didn’t work well with this particular patient: he woke up from surgery, hated the patch and immediately wanted to grab his eye.
“He was very agitated and wanted to touch his eye and we couldn’t let him,” Rowe said. “So what we had to do is tie his arms down, and admit him to the hospital where we actually restrained him for the better part of a week with physical restraints and with a lot of sedation. He was very frightened, very angry and he didn’t know what was going on. It was terrible for him and for the family and for me.
“I felt after that…there has to be a better way…It wasn’t clear we’d done the best possible thing for this man and I decided I couldn’t keep doing that — I couldn’t see doing that kind of surgery again.”
She began investigating different options. She revisited an older type of procedure, called scleral tunnel surgery, which involves a more extensive surgery but yields a much sturdier wound. It’s a technique “that has fallen out of favor,” she said. “It’s not the kind of surgery you see as often in 2012, 2013.”
“I won’t say it’s not scary to send someone home without a patch,” she says. “It flies against everything I’ve been taught and everyone else has been taught around here. It takes a certain ability to live with risk.”
Many doctors are unwilling to take on that kind of risk. “I can tell you that many of the people who come to me have been looking [for a willing doctor] for years,” Rowe said. “They’ve either been told they’re not a candidate for this surgery or they’ve been given options for surgery that are too invasive or scary…by the time they come to me, their function is so impaired.”
Jean Ramsey, associate professor for ophthalmology and pediatrics at Boston University School of Medicine and a program director at BMC’s Department of Ophthalmology, says, “Dr. Rowe’s commitment to this population has made it possible for many patients to receive surgical care who otherwise may not have been able to receive it.”
Rowe acknowledges that she couldn’t do this kind of work without a team of committed medical providers. “We do a lot of strategizing before the surgery,” Rowe says. Not only does this approach require doctors willing to work collaboratively and outside standard procedures, it also relies on nurses willing to take extra time and tenderness if a patient is kicking or screaming or unwilling to wear a wrist band, Rowe says. The team also depends on schedulers who can remain calm when patients repeatedly cancel and reschedule appointments.
One surgical tech nurse, Ellen Gallery, who works with Rowe, likens the complex dance of getting such challenging patients into the OR to a “seduction.”
“To get it all right the way she does and get the patient in here, it’s not an induction, it’s seduction,” Gallery said.
But, Rowe says, this type of team effort is not easy to sustain. “Under our current health care system, there is a financial penalty for this kind of collaboration. Each aspect of care gets paid significantly less than if we did everything separately. One change that I would love to see as we reform health care would be to financially incentivize teamwork and collaborative care over individual episodes of care.”
‘It’s A Miracle’
After the surgery, Rowe holds Kevin’s hand and urges him awake.
When he opens his eyes, his sister and caregivers are ready, plying him with coffee and chocolate pudding. “Whatever you like today, Kevin, it’s your day,” Blanchette says.
Kevin’s caregivers notice the improvement almost immediately.
“This has changed his life,” Peter Scully says. “It’s amazing he made it through both surgeries. Here’s a guy who couldn’t see, and now he can see. It’s a miracle.”
Poitras and Scully decided that if Kevin did make it through the surgeries they’d reward him with a trip to the aquarium where he could enjoy his new vision: see the fluorescent fish and crazy-patterned eels, touch the sharks and rays and hang out with the seals.
On a raw morning earlier this year we meet at the New England Aquarium in Boston where Kevin smiles for pictures in front of the jellyfish and allows an aquarium worker to help him navigate the touch tank. “If his eyes weren’t fixed, he’d never be able to do this,” Poitras says.
The caregivers tick off all the post-surgical improvements in Kevin’s life: his anxiety, aggression and overall agitation are way down. He’s working again (bringing home $30-40 a week, far more than when he could barely see). He’s much more social, playing his music and greeting visitors when they come to the group home. “He’ll go into the day room and turn his music on — all around he feels more comfortable, he can tolerate crowds a lot more than he used to,” Poitras says.
Blanchette adds that after the surgery: “His whole demeanor completely changed; he’d calmed and gone back to his old self. He could see and he could see me, I was so grateful.”
Kevin’s coffee addiction goes back to childhood (Pam suspects coffee was used as a reward at the mental institution). So as another special treat, Kevin got his own coffee maker after the surgeries. Now, for the first time, he makes his own morning coffee. “That’s huge,” Poitras says. “He’s never been able to do it before without hurting himself.”
And this is just the beginning. “We’re slowly going to introduce him to more activities, horseback riding, swimming, we’re hoping he’ll lose some of that weight,” Poitras says. “He’s always had problems with medical treatment, but now we’re going to take him for a few more appointments.”
Scully’s planning to buy Kevin a treadmill now that he can see again and says he hopes Kevin’s success inspires others: “It may pave the way for other developmentally disabled individuals and their staff to approach Boston Medical. If they see we were able to do it they might think, ‘We can do it too.’ ”
At the fur seal tank, Kevin stares transfixed as Lou, a blind seal, flops around, while another seal called Isaac squirms away when the trainer tries to get a blood sample. “He’s just like you Kevin,” Scully says. As the seals dive and play, Kevin leans over the railing, and begins rocking back and forth — a characteristic trait of autism. Poitras, the nurse, snaps a photo. “It may not look like it, but that,” he says gesturing, “is Kevin happy.”
(Note: This special CommonHealth report was produced by Rachel Zimmerman, George Hicks and Jesse Costa. All photos, video and reporting for the story were gathered with consent from Kevin’s legal guardian.)