Stroke Recovery Doesn't Have to End When You Are Discharged

As a speech language pathologist, I have noticed a huge problem. In my opinion, most people give up on stroke recovery far too soon. I have witnessed significant improvements in patients even years after a stroke. 

"Many stroke survivors continue to improve over a long time, sometimes over a number of years." (National Stroke Association) 

"Although some stroke survivors recover quickly, most need some form of stroke rehabilitation long term, possibly months or years after their stroke." (The Mayo Clinic)

"A massive stroke can be fatal, but for many patients experiencing a stroke, recovery is long, but possible." (Healthline)

So, if we know that recovery can take a number of years in some cases, why are patients discharged and told they have reached "maximum potential" after only weeks or a few months of rehabilitation therapy? Unfortunately, this has a lot more to do with company policy and insurance reimbursement than it does with true potential for further rehabilitation.

It is common practice for therapists to discharge patients from inpatient rehabilitation, home health care, and outpatient rehabilitation long before they would really like to and when they know the patient could benefit from additional therapy. In a perfect world, they would keep patients in therapy until they truly could not make any further progress, but in the real world, therapists have to consider whether or not they (or their company) will get reimbursed for further therapy.

If progress has slowed, or if treatments have exceeded a certain dollar amount, insurances, including Medicare, may refuse to pay for services, or may audit the company, or may even come back long after services were provided and demand repayment for services they deem "excessive". Rather than explain all of that to patients and tell them they have to discharge them even though they could continue to recover for years with additional therapy, it is common practice to say "Patient has reached maximum potential at this time." or "Patient has reached a plateau."

Discharging patients and telling them they have met maximum potential keeps most patients from challenging or appealing the discharge. They simply give up on further recovery and sadly go home. That is the problem with our system. There are usually further treatment options available to the patient, but they are frequently not explained to them. Patients who are discharged from the hospital may be able to go to rehab after the hospital, home health care after rehab, and outpatient therapy after home health care. 

Some outpatient therapy companies can provide outpatient therapy in the patient's home whether patients are home bound or not. Home bound patients can get home health care over and over again, starting it all over anytime there is a change such as a fall, a new skin tear or sore, increased weakness, dizziness, coughing, etc. Even just starting a new medication or having increased memory problems is enough to begin home health care all over again in some cases. Once it is started for any reason, the patient can receive all types of therapy they need, such as PT, OT, and Speech/Swallowing/Memory Therapy, with no out of pocket expense. The patient only needs to ask their physician or healthcare provider for these services and inform them of the change which justifies the new enrollment in home health care.

Most Medicare patients don't realize they can go to outpatient therapy, or even have outpatient therapy in their home starting again with each new year. Medicare allows a certain amount per year. When that is used up patients are discharged and often they are told they have reached maximum potential instead of that the Medicare money has run out for this year, but you can come back in January! It is more acceptable and professional to say that the patient has reached maximum potential or has reached a plateau, but that can be extremely discouraging for the patient. 

There are also many exercises patients can do on their own after discharge from therapy. Simply by asking the therapist for a Home Exercise Program upon discharge, patients can receive customized, written descriptions of exercises to continue independently at home. Therapists are happy to do this for patients and often do it without being asked, because they know patients can continue to recover and they want them to recover more. Unfortunately patients are frequently too discouraged by the "maximum potential/plateau" statement to continue further exercises on their own.  However, they can definitely recover much more in most cases, if they will continue to work hard on these exercises.

I am currently seeing a patient who has really touched my heart and illuminated this problem for me. I will refer to him as Mr. X, to protect his privacy. He is a stroke survivor with severe expressive aphasia (difficulty talking) who had been to rehab and had home health care. He was referred to me upon discharge from home health care so that I could provide outpatient therapy in his home because his wife was very outspoken and upset about him being discharged from home health care.

When I arrived for the first visit, Mr. X and his wife were both in a very bad mood. He was lying on a hospital bed in the living room and didn't even sit up to greet me. She was sitting on the sofa. They both looked exhausted, frustrated, and very depressed. Mrs. X began telling me about how all the therapists had all given up on him and discharged him. As I explained that I could see him for several months for outpatient therapy and that it renews every year and that I could help him with his physical therapy and occupational therapy home exercise programs as part of my cognitive therapy with him, they both just lit up before my eyes. They had hope again.

Mr. X is a very hard working, determined patient. All he needed was a little encouragement and more therapy! He has made wonderful progress in the few months I have been seeing him. He can eat and swallow pills now without coughing or choking. He has improved his speech from barely being able to say a few words when I first met him to being able to say many, many words and some phrases and sentences. We also do exercises for his legs, arms, and hands as practice for following directions and short term memory, so he has made many physical improvements now also. His strength, balance, and handwriting has improved significantly. 

Mr. X and his wife tell me "Thank you so much!" very often and I can see in their eyes how much they truly appreciate him getting the therapy he needs, and we're still a long way from being done. He has a small open wound currently, which was enough to get him qualified for home health care again. He will be able to receive PT, OT, ST and nursing care while he is on home health care. Then, when he is discharged I will be able to start outpatient therapy with him again if needed. I think the prognosis is very good for Mr. X, because he is not one to give up easily... and neither am I.  

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About the Author: Jolie Parker, M.S.CCC-SLP is a speech language pathologist who specializes in the treatment of dysphagia. She is a co-inventor of the PhagiaFlex Device for dysphagia, which has been clinically shown to strengthen the swallow, improve esophageal opening and laryngeal elevation, and widen the UES during the swallow.

References:

The National Stroke Association, Stroke Recovery: http://www.stroke.org/we-can-help/survivors/stroke-recovery

The Mayo Clinic, Stroke Rehabilitation: What to expect as you recover:  http://www.mayoclinic.org/stroke-rehabilitation/art-20045172

Healthline: Massive Stroke: Symptoms, Treatment, and Long-Term Outlook
Written by Mary Ellen Ellis | Published on February 10, 2014
Medically Reviewed by George T. Krucik, MD, MBA on February 10, 2014: http://www.healthline.com/health/stroke/massive-stroke#Overview1