Remembering, and respecting, the most vulnerable

Hospitals seek to improve care for patients with intellectual, developmental disabilities.


Improving the patient experience is more important than ever, but one subgroup of inpatients can often be left behind: people with intellectual and developmental disabilities (IDD).

“I think sometimes people think that taking the extra steps and time required to coordinate care better simply costs too much,” said Yona Lunsky, PhD, director of Health Care Access Research and Developmental Disabilities (H-CARDD), a Canadian research program to enhance the health and well-being of individuals with IDD.

Photo by Thinkstock
Photo by Thinkstock.

Adults with IDD comprise about 1% of the general adult population, so paying special attention to their needs—which can be great—may not seem like the best use of resources. Yet not meeting these needs initially can take a bigger toll on hospitals than they may realize, experts said.

Patients with IDD are more likely to visit the emergency department, to be hospitalized, and to have preventable hospitalizations than adults of the same age without IDD, a 2013 H-CARRD study found (see sidebar) .

“So, if you don't make the effort up front, you will just pay for it when the patient [with IDD] comes back and gets readmitted through the [ED]—and is even more difficult to discharge than the first time,” said Dr. Lunsky, an associate professor of psychiatry at the University of Toronto.

Also, the population with IDD is rapidly increasing, which means hospitalists can expect to see more of these patients in their facilities, said Robyn Hart, M. Ed, CCLS, co-creator of a comprehensive program to improve care of patients with IDD at Rush University Medical Center (RUMC) in Chicago, and director of Child Life Services at RUMC. “Rates of autism diagnosis are going up; there are more multiple births, with more children born impaired. People with Down syndrome are living longer, so you have people with Down's and Alzheimer's, which didn't used to happen,” Ms. Hart said.

Few hospitals have made wide-scale changes to systematically improve quality of care for the population with IDD in the way that RUMC has, though several have made changes in certain areas, like the emergency department. But even a few small tweaks can go a long way and reap both ethical and practical rewards, experts said.

The gold standard

Since launching its program in 2007, RUMC has integrated a number of strategies to improve care for patients with IDD. For starters, when a patient is identified as having IDD, clinicians are prompted through the electronic medical record (EMR) to collect specific information on the admission form, including the patient's preferred means of communication, physical and behavioral challenges, eating habits, and environmental needs and preferences. Because the information is in the medical record, all necessary staff can access it.

“Not everyone knows what to ask in terms of communication, or triggers, or special fears, so this is a great way to do a comprehensive intake on a patient with unique challenges,” said Sarah Ailey, PhD, RNC, co-creator of the RUMC program with Ms. Hart.

RUMC also has a multidisciplinary committee—comprising physicians, nurses, child life specialists, social workers, educators, occupational therapists, and others—whose members are knowledgeable about IDD and are “on call” for questions from treating clinicians.

If a patient is having a behavior problem or not coping well with her hospitalization, for example, committee members can offer ideas for how to soothe her. They may also arrange for a “special needs buddy”—typically a medical, nursing, or occupational therapy student—to spend time with the patient and help with tasks like filling out forms. The buddy program serves 2 goals: helping patients and educating future clinicians on working with patients with IDD, Dr. Ailey said.

RUMC also has developed procedure-specific patient education materials that use simple language and photos to explain common procedures and tests like blood draws and CT scans. In addition, the hospital has many multisensory materials, including bubble columns, lights, and tactile objects, to help relax and distract patients.

“Our goal is to help patients understand what's happening to them and to provide some coping mechanisms. We use developmentally appropriate strategies; we don't bring in coloring books as we might with a child. The goal is to make sure the care is respectful and preserves the dignity of the patient,” Ms. Hart said.

Typically, in medical school and residency, internists get no formal instruction in caring for patients with IDD, so a big part of the RUMC program is providing ongoing training for all hospital staff in a variety of formats, Dr. Ailey said. Subjects range from effective implementation of the hospital's resources for patients with IDD to primers on specific disabilities. “It's important to keep the training initiatives going, so staff members remain aware of the services we have for this patient population,” she noted.

Parts of the whole

Not all hospitals are able to undertake a comprehensive program for patients with IDD, but some implement certain elements. At Einstein Medical Center's Elkins Park, Pa., facility, a designated nurse works with patients with IDD referred to the hospital from the nearby outpatient Center for Adults with Disabilities.

The nurse is the known point person within the hospital, gathering information from physicians, nurses, and others about patients with IDD, then calling the Center regularly to exchange information and answer and relay questions, said Richard Grant, MD, MPH, the Center's chairman.

“Typically, if I [as the outpatient physician] were to call the unit, they would tell me the doctor's name on the chart, but that often isn't really the doctor I should be talking with. So it's good to have a person in the hospital to sort this out,” Dr. Grant said. “Patients [with IDD] have more particular abnormalities that it benefits doctors in the hospital to know about” during an admission.

A point person can also be helpful in gathering information to create good discharge plans. If a patient will need help to follow discharge instructions, the point person can discern how much help will be available.

“About a third of those with developmental disabilities live with family members, but two-thirds do not, and that latter group live in very different environments with different levels of support. It may be an apartment where a person drops by once a week or a group home where there is a person on staff all the time,” said Carl Tyler, MD, associate professor and director of the Developmental Disabilities Practice-Based Research Network at the Cleveland Clinic in Ohio.

While procedures in the hospital are very controlled, care after discharge can be a big deal, Dr. Grant said, so knowing the patient's capabilities and support situation is key.

“If you are deciding whether or not to do eye surgery, for example, you need to consider if the person will be able to keep from touching or scratching his or her eye for a few days, or if he or she can tolerate an eye patch,” Dr. Grant said.

Sussing out support systems

Hospitalists can find out about a patient's home environment and support system by themselves, of course. Indeed, several experts said this is the single most important piece of information to gather from a patient with IDD or his or her caregiver.

“The factors that lead a person to be hospitalized and that need to be considered in crafting discharge plans really relate to the services and environment of the person [with IDD],” Dr. Tyler said. Getting good information may mean calling a patient's residential service provider, which Dr. Tyler emphasized is not a violation of the Health Insurance Portability and Accountability Act (HIPAA).

“An individual, to receive residential services, signs an agreement that the residential service is responsible for ensuring the resident's optimum health and safety. That includes having conversations with hospitalists and care managers,” he said. “I've seen disasters occur because nurses and hospitalists thought they couldn't talk to the residential service provider.”

If patients with IDD have a support person with them at the hospital, whether a professional or a relative, it's important to communicate early and often with that person. First, find out how well he or she knows the patient, advised Rick Rader, MD, director of the Morton J. Kent Habilitation Center at Orange Grove in Chattanooga, Tenn., and vice president of external relations for the American Academy of Developmental Medicine and Dentistry (AADMD).

“This person may have been through a dozen hospitalizations with the patient, or he or she may have been called in as a substitute that day and not know anything,” Dr. Rader said. “You need to be able to verify the reliability of the information you get.”

Assuming the caregiver is familiar with a patient, he or she can be very helpful in, for example, discerning how to make the patient comfortable in the hospital and the best way to communicate.

People with IDD may communicate their discomfort through behavior instead of words or be able to write even if they can't speak, and a caregiver is apt to know that, noted Christina Nicolaidis, MD, a professor at Portland State University in Oregon and co-director of Academic Autism Spectrum Partnership in Research and Education (AASPIRE).

“I was precepting a resident who was seeing a patient with minimal speech…and the resident was struggling with how to get the patient to participate enough to do the exam,” said Dr. Nicolaidis. “But no one had asked the patient's group home workers how she communicates at home. It turns out she could read and write a bit. Just having her read some basic words we wrote—’we'll do this first, then this next’—made the exam go so much better. More importantly it opened the door for finding ways to more effectively include the patient in her own care.”

At the same time, it's important not to rely too excessively on support staff, at the expense of communicating with the patient himself or herself, Dr. Nicolaidis added. She and her colleagues developed a tool, the Autism Healthcare Accommodations Tool (see sidebar) to help autistic patients express their needs, but the tool works with all kinds of patients, she said.

“In our research studies, we heard countless examples of providers relying too excessively on supporters [to communicate autistic patient needs], which both limited patient autonomy and at times led to important miscommunications and poor care,” she said. “Knowing how your patient communicates and things to make it easier for them to participate in shared decision making and follow your recommendations, is what we aim for with everyone.”

Altering the environment

Small changes in the hospital environment can make the stay easier for IDD inpatients, which in turn will make it easier for clinicians to care for them, Dr. Nicolaidis said.

People on the autism spectrum, for example, are often extremely sensitive to noise and light and don't do well with unpredictability or changes to routine, she said.

“It's important to be aware of the things you can control. Do you need those 5 beeping things in the room? Do people need to come at random times?” Dr. Nicolaidis said. “The more you can create structure and predictability for the patient, the better it will be for the patient and the care team.”

Dr. Nicolaidis recalled a patient who was on the autism spectrum and who did well during the hospitalization, until he was discharged in the morning without having received all the meals for which he'd filled out menu cards.

“It turned into quite the disaster because he had expected those meals—had been told he would have them—and was upset about not getting them,” she said. “Consistency is so important, and I just hadn't thought of this. Of course, you can't think of everything, but trying to fix and control what you can does go a long way.”

It's important to ensure that all staff interacting with the patient with IDD—from nurses to food service employees—are aware of the patient's needs and abilities and the strategies that work with him or her. Include this information in the EMR, Dr. Nicolaidis said.

Hospitalists and other staff should also be respectful with their language and avoid using terms like “mentally retarded,” noted Seth Keller, MD, a neurologist in New Jersey and past president of AADMD. “I still hear ER staff and hospitalists use the term ‘mental retardation’ although there actually has been a legal change to this language in the U.S.,” he said.

Making an effort to understand the unique needs of patients with IDD, to reduce environmental stress, and to be respectful can go a long way, experts agreed.

“When patients' needs are met and they are supported, they are more cooperative and spend less time in the hospital because their treatment is going smoothly. They are less likely to come back because they have received appropriate education,” Dr. Ailey said. “And there are a number of goals beyond the humane for improving treatment—it's financially helpful to the hospital; it's even good for marketing.”