When brain trauma patients are discharged from hospital intensive care, a rehabilitation facility is the next step. At the rehab facility, a case manager will work closely with a team that helps patients regain functional ability.
But often, the family wants to take a patient home too soon in the rehab process, says Mark Evans, MA, CCM, CRC, CBIS, who has worked with brain injury patients for 30 years at Rainbow Rehabilitation in Detroit.
The patient has survived a horrific accident, and the family is grateful the patient is alive. Naturally, the family members want to take the patient home, Evans explains “But they take him home unprepared, without a lot of education, without a lot of support.”
Following a traumatic brain injury, recovery and rehabilitation may be a long-term process. However, research has shown that the greatest likelihood of functional improvement will occur within the first 24-36 months. This is the time when rehabilitation services are critical.
“Hospital case managers are in the perfect position to be the patient’s advocate in this regard,” says Evans. In talking with patients’ families, the importance of “staying the course” with rehabilitation is imperative, he explains.
“Families need to know the long-term benefits of early intervention — how this could have long-term benefits for the rest of the patient’s life. We will reinforce this message on our end, but it helps so much to start the conversation right away. Families need to advocate for their loved ones early and often.”
The family typically does not understand the trauma and how it has affected that person’s brain, says Evans. If the patient is a child, “they don’t know why the kid is different now. And that child will struggle through life, struggle with school, friends, family. There will come a point where the family can’t do it anymore.”
Very often, that patient will need further care five, 10, or 15 years later. “The parents can take care of the child,” says Evans. “Or perhaps mom has passed away, and there’s no one else who can take care of him. Every story is different.”
The patient may stay at the rehab facility until the end of life, says Evans. “People come to us at different stages of their recovery,” he explains.
Working with patients for 10, 15, or 25 years is a challenge for the team, says Evans. “We see the ebb and flow of people in the life cycle. As case managers, we become almost like their personal historians. We see that the injury tends to speed up the aging process. We see significant comorbidities along with the traumatic injury. This means the patient must get plugged into different parts of the healthcare system with a new set of providers, new set of diagnostics, new medications, new treatments.”
The case manager interacts with every medical provider, he says. “We make sure the provider has a complete medical history of this client so they will have a full picture of the person they will be meeting.” This is a critical role for the case manager in preventing any confusion including contraindications.
The case manager acts as the patient’s advocate — and nearly as a “pseudo family member,” says Evans. Legal issues also require the case manager’s interaction, including guardianship, conservatorship, and probate issues.
“A judge must make their determinations knowing the client and understanding they may have a cognitive deficit,” he explains. “We want to protect our client/patient from inappropriate decisions that have negative legal ramifications.”
Therapy for the patient involves access to community resources, including jobs, recreation, and events. The goal is to help the patient achieve the highest possible level of productivity.
Physical therapy, speech therapy, and mental health support will be structured to “meet the patient where they are” to help them gain function. However, after the first 18 months to two years, the benefits of those therapies taper off, Evans explains. At that point, the focus switches to a supportive environment where the goal is to retain function.
Therapy might evolve into a group format or a community activity. The case manager tracks this progress, using a variety of assessment tools, and provides progress reports to keep all physicians, family members, insurance companies, and attorneys informed.
Frequently, the case manager is more involved with the patient than any family member. In some cases, family members make few or no visits. “It’s tough for some of these families; they have to get on with their own lives, their jobs,” says Evens. “We see them every day; we become their family.”
One patient came to the facility nearly 30 years ago, and despite her traumatic brain injury, she was able to live in an apartment, drive her own car, held a job. She was living her life, Evans says. “She had a lot of deficits and needed a lot of hand-holding from our staff, but she was able to do all these things. It was a tremendous success for her.”
But as she got older, her injury and comorbidities started taking a toll. She lost her freedom in stages, and eventually needed full-time nursing care. “We saw her through her circle of life,” says Evans. “We were the support system she needed.”
In that setting, a case manager works closely with the treatment team to identify solutions for each patient’s unique needs. Their team is an “incredibly dedicated group,” says Evans. “No two days are the same. We have this unusually long-term relationship with our patients and their families. It brings a lot of meaning to our work. We feel good at the end of the day.”
Also critical is the emphasis on therapeutic boundaries, he adds. “It would be easy to fall into a ‘friend’ relationship where we are asked to Christmas dinner or travel with the family. We make sure we have good, strong, but therapeutic relationships,” Evans explains.
“We have to remind some families that we can’t accept gifts or tips. We are professionals here to do a job. We care about you and your loved one, but we go home to our own families. We have to maintain that boundary.”