What Happens Next?
Making the Best Decisions at Discharge After Stroke
Here are words you are unlikely to ever hear from a stroke survivor: “I had too much rehab.” Quality rehab is something nearly all stroke survivors are extremely interested in. That is because, as one of the first survivors we interviewed for Stroke Connection said, “Rehab is life.”
Because the time and money spent on formal rehab are precious, selecting the right facility is essential. In this, the first part of a two-part series on stroke rehab, we hope to help support the decision-making process required when it’s time to leave the hospital.
Selecting the Right Rehabilitation Facility
Having a stroke can be an overwhelming event — certainly life changing. But the type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. With that in mind last year, stroke experts from the American Stroke Association published its first-ever Guidelines for Stroke Rehabilitation and Recovery for Adults.
“There is increasing evidence that rehabilitation can have a big impact on the survivors’ quality of life, so the time is right to review the evidence in this complex field and highlight effective and important aspects of rehabilitation,” said Carolee J. Winstein, Ph.D., P.T., lead author of the scientific statement published in the May 2016 issue of the American Heart Association journal Stroke.
Stroke affects so many different functions — paralysis and weakness; gross motor skills; fine motor skills; speech and language; cognition; vision; and emotions — stroke rehab typically involves healthcare professionals from several disciplines — occupational, physical and speech therapists, physiatrist, dietitian, social worker and psychologist.
The average hospital stay in acute care for stroke patients is between four days (ischemic) and seven days (hemorrhagic). Survivors are generally transferred from acute care to an inpatient rehabilitation facility (IRF), a skilled nursing facility (SNF) or a long-term acute care (LTAC) hospital. About 45 percent of patients are discharged home, and their options for post-acute care at home include home health care or hospice care.
Time is a consideration at this point for two reasons. First, since survivors are typically discharged within a week, there is a need to quickly find a facility for the survivor to go for continued care. Second, the brain seems most able to improve in the first months after the stroke, so getting survivors into rehab quickly allows them to take advantage of that recovery window.
The difference between IRF and SNF
In IRFs, there is typically a team approach to rehabilitation, and all the therapists meet and discuss the people in their care and their treatment plans. This approach, Winstein suggests, needs to be one of the first questions a family should ask when evaluating any facility.
Finding such a place may require some investigation. Medicare.gov posts public quality ratings for SNFs within their “Nursing Home Compare” feature. You can search for a specific facility or can enter a ZIP code for a list and can create a side-by-side comparison of up to three facilities at a time. You’ll see an overview of rating categories and can click on the facility for detailed data that include staffing, quality measures, and health and fire safety inspections. The feature doesn’t indicate which facilities are specifically SNFs, but looking for “rehabilitation” in the facility name should help in narrowing down the options you’ll want to evaluate.
Medicare.gov also has a directory of IRFs. This directory provides some detailed data on the number of times annually a given facility treats certain conditions as well as statistical data for some quality measures and how those compare to the national average. This is an excellent tool for helping families assess the quality of a facility using specific quality measures on an apples-to-apples basis. Medicare.gov also has a helpful, general checklist to use when evaluating a SNF. For checklists of questions more specific to the needs of stroke families, download the American Stroke Association’s free “Making Rehabilitation Decisions” PDF.
For 50 years, the Commission on the Accreditation of Rehabilitation Facilities (CARF) has been accrediting IRFs and outpatient rehab programs. Hospitals that are accredited have been evaluated based on standard criteria and guidelines that provide the best outcomes. The website has a searchable list of accredited providers. When searching the site for stroke rehab programs, be sure to click the ‘advanced search’ link on the “Find an Accredited Provider” page. Once you’ve entered your location information, selecting “Stroke Specialty Program” in the Program Focus field will help yield the results you need. And while accreditation does not guarantee they are the best facilities, it provides assurance that they follow approved standards. CARF also accredits stroke rehabilitation programs in some SNFs.
“If the facility has only two stroke patients that are actively getting rehab, that’s probably not where I would send my loved one,” Winstein said. “But if they have programs that are focused on rehabilitation and at the same time have patients there that are only receiving skilled nursing care, that’s fine.” The crucial question is how does the facility see its role — as a care facility or a rehabilitation provider?
The rehabilitation team approach is crucial, but the patient and family also need to be at the center of the rehab equation. “What we emphasize at the end of the rehabilitation guidelines is that patients and caregivers need to be included as a viable, active member of that team,” Winstein said. “That’s something patients and families should ask. They need to verify:
- ‘Are we involved in patient-care plan discussions?’
- ‘Are you going to ask my father what he wants?’
- ‘Are you going to consider my mother’s wishes and goals in putting together the rehab program?’
So ultimately, the question is: ‘Is your program patient-centered and if so, what are the ways in which it is?’”
Despite the inherent complexity of the subject and the stroke recovery process, families are likely to see some improvement as the patient recovers and orients to a new self. Winstein remains optimistic for the stroke survivor in rehabilitation: “I think it’s important for family members to expect some recovery. It may not be full recovery, back to the way the person was before, but it is not a death sentence. I think we have to say there is definitely hope. If you made it through the acute phase, there is definitely hope.”
The American Stroke Association has created some helpful tools for stroke families. Our free, downloadable PDF Making Rehabilitation Decisions is an easy-to-understand guide to support you and your loved ones with the information you need to make the best decisions for the survivor’s next steps in recovery. Coming soon, access our quick reference sheet of questions to ask your healthcare team before leaving the hospital, as well as questions to help evaluate potential rehabilitation facilities.
In an IRF, the patient must be capable of participating in three hours of therapy every day. Those who need inpatient rehabilitation or further skilled care but cannot tolerate three hours of daily therapy will need to go to a SNF (many insurers will not cover IRF if the survivor does not have the tolerance). The rehabilitation resources, facility and programs vary from SNF to SNF and span the spectrum from those that offer many rehabilitation services to those that offer very few.
In the inpatient setting, Medicare will cover up to 100 days in a SNF; up to 90 days in an IRF (or longer in some instances, although cost-sharing is very high); and up to 60 days of services in the home health setting. There are limits on outpatient therapy services, particularly by private insurers, that can be as short as two to three weeks for physical, occupational and speech therapy.
Because of these limits on coverage, rehabilitation dollars are dear and should be used wisely.
“Our recommendation is that, if at all possible, patients should receive their rehabilitation at an inpatient rehabilitation facility,” Winstein said. If that is not possible, because of logistics or the survivor’s condition, then stroke families should consider SNFs “that have a coordinated rehab program, maybe at a lower intensity, but they use a team approach and have team meetings and communicate regularly with the family.”
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.