Train staff to handle difficult patients
Therapists, nurses, and others who work with rehabilitation patients sometimes need to give as much consideration to the patient’s psychosocial and neuropsychological problems as they do to the physical issues, particularly in the case of patients who’ve suffered a traumatic brain injury (TBI), experts advise.
"When we talk about psychosocial rehab issues, we’re really talking about a balance between issues that confront individuals and social and environmental issues that contribute to disability," says Kurt L. Johnson, PhD, associate professor and head of the division of rehabilitation counseling and department of rehabilitation medicine at the University of Washington, School of Medicine in Seattle. Johnson also is the director of the University of Washington Center for Technology and Disability Studies.
"So when we’re working with patients, it’s easy to look at the changes in physical function, measuring changes as people progress," he notes. "It’s difficult to know what impact that really has on someone’s day to day life when they get out of rehab care."
Likewise, it’s challenging for staff to modify their treatment approach based on a patient’s cognitive deficits, says Mary Pepping, PhD, associate professor and neuropsychologist and clinical director of the outpatient neuro-rehabilitation program at the University of Washington.
"All of the members of the team, whether they are occupational therapists, physical therapists, speech therapists, vocational rehabilitation, or respiratory therapists, have to know what are the two or three primary deficits in thinking and behavior this person has," she explains. "Know where a person does well because you need to draw upon those strengths to help the patient compensate."
For example, suppose a patient has difficulty with complex attention and memory retrieval skills. Therapists who understand these deficits may want to move that patient to a quieter part of the gym before beginning therapy, or they may want to schedule the patient at times when the gym wouldn’t be so busy, Pepping says.
Another strategy would be to have a small white board with the steps listed so the patient could see this and refer to it as he or she goes through exercise steps, she adds. "This is so the patient doesn’t have to remember 10 or 12 repetitions," Pepping explains. "Cueing the patient makes it easier for the person to stay on track and remember what he’s doing." Also, therapists need to check in with these patients more often and repeatedly say, "Tell me what I just said to you," she advises. "Keep instructions to two or three things at one time," Pepping says. "Don’t overwhelm the patient with instructions; keep them short and sweet and straightforward."
Johnson and Pepping also offer these suggestions for dealing with patients’ psychosocial issues and cognitive deficits:
• Consider patient’s psychosocial barriers. Rehabilitation staff need to look at patients’ experiences from an insider perspective, considering the barriers patients will experience in their daily lives, Johnson says. "An example of social barriers, and we see this among health care workers all the time, is a presumption that somehow the person’s disability is the salient or defining characteristic of who they are," he explains. "So the disability becomes the most important characteristic, and people with disabilities are presumed to have more in common with each other than they do with people who don’t have disabilities."
In a rehab setting, this attitude is reflected in how staff talk about patients, such as calling patients quads or paras or "those guys with TBI," Johnson notes. "By doing that, we lose the opportunity to understand more clearly who the individual is.
"We also see this in everyday life when someone talking to a person who has a vision impairment speaks loudly or uses expanded speech," he adds. "I have traveled extensively with a colleague who uses a power chair, and when we go out to dinner, often the server — without thinking about it — would ask me what she wanted for dinner."
Another colleague of Johnson’s is blind and a grants writer. She enjoyed getting a cup of latte on her way to work, but she had to stop this habit because as she’d wait at the bus stop, people would toss coins into her latte cup, Johnson says. "Those attitudes are never malevolent, just misinformed. But they can be destructive over the long run."
• Keep messages positive and affirming. "Rehab has to be focused on what’s wrong to help people get back on their feet," Pepping points out. "But that’s very demoralizing." She emphasizes that it’s important for rehab staff to deliver information in such a way that a patient is reminded of his or her skills and assets and whatever it is that makes that person proud. "The person who has been hurt usually compares himself to what he was before the injury," Pepping adds. "The therapist takes him from the point of the devastating accident to where the person is much better." The idea is to help patients find and accept a middle ground where they can maintain hope and pride in their accomplishments, she explains. "Everybody needs a breather from that kind of intense focus on what’s wrong."
• Be aware of patients’ poor control and lack of awareness. Rehab therapists face several hurdles in coping with patients who have cognitive impairments as a result of their illness or injury. Among these is a lack of awareness on the part of the patient about the actual injuries, Pepping explains. "If the brain is hurt, the person’s ability to size up damage is an issue; because if they’re not aware of the problem, it’s difficult to work on it," she says.
Another hurdle is the inability to accept the cognitive problem. "If they can’t accept that there’s a problem and that they need help, then they may not be very interested in treatment," Pepping adds.
The last major hurdle involves emotional and behavioral control, which, in some patients, can be so poor it’s difficult for therapists to work with them, she explains. "If they can’t control themselves well enough not to hurt staff, then they won’t be in rehab, but other patients have the potential of rage reactions when they encounter a deficit," Pepping adds. "They may cry or run from the room or yell, and that’s a tough person to manage; and that requires a lot of individual therapy, group therapy, and behavioral plans, and taking it very slowly." Those types of patients are on the brink of being overwhelmed all the time, she adds.
• Assist patients with advocacy skills. "In my experience, the rehab staff are more likely to treat people as whole people, and I think, generally, they are pretty good advocates for their patients," Johnson says. "But the trick, I think, is to think not only about physical rehabilitation, but also about what kinds of psychological and what kinds of advocacy skills patients will need once they are out of the hospital." For example, here are some questions therapists might consider:
- How well-versed are the patient’s family members in what their legal rights are?
- How much do they know about some of the huge barriers they’ll encounter in the health care benefits systems and elsewhere?
- How much continuity is there between inpatient and outpatient care and life in the community for people with disabilities?
"One of our patients was talking to our staff not too long ago, and she said that the key issue is to use people-first language," Johnson says. "Among disability advocates, the idea is people-first language reminds you to consider the individual, and it’s important not just when talking to the patient, but also when talking with each other because the feeling is those shorthand terms, like quad,’ end up stereotyping people unintentionally."
• Assign therapists according to patients’ needs. It’s best to assign therapists to patients with psychosocial difficulties according to the patient’s particular needs, Pepping says. It may not always be an easy strategy with regard to scheduling, but it makes a lot of sense from a psychosocial standpoint. For example, a patient who tends to view women as a source of nurturing and support might be assigned a woman therapist, she explains. "Other patients might find companionship with male therapists is more comfortable, so assign them male therapists," Pepping says. "It’s a matter of who’s going to be most compatible with that patient." Another strategy is to have a psychologist or physician participate in a physical therapy session to give the patient additional support, she says.
• Listen without assumptions. "The idea is to learn to listen carefully and from different perspectives because we have to assume that a lot of expertise about disability resides with the person who’s disabled," says Johnson. "Early on in rehab, we’re teaching them to become experts in their own disability, and we want to reinforce that expertise and listen to their experience and trust the validity of their experience."
It’s difficult for rehab staff to trust patients’ understanding of their experiences when patients have communication impairments or brain injuries, he notes. Likewise, patients themselves and their families have trouble coping without assumptions because they perceive the patient has changed, Johnson explains. "Especially when there are communication challenges, you have to slow down, and communication may take more time," he says. "In medical settings, we’re all under increasing pressure to generate billing, and so it may be hard to slow down, but give the person a chance to explore his feelings about what is going on and to understand them."