Several weeks ago I posted about my aunt, who suffered a hemorrhagic stroke mid-July, leaving her with a right sided paralysis, along with some mild speech and swallowing problems. Although she was said to have had a large stroke, and she is in her 80's, when I visited with her in ICU shortly after the onset, I was pleasantly surprised to see that she was already eating and speaking, both good prognostic indicators so soon after acute stroke.
Following her one week stay in the hospital she was transferred to a subacute rehabilitation setting in a suburb of Cleveland, where she lives.
My cousin has emailed periodic updates, and although she expresses the expected "overwhelm" of a family member suddenly thrust into this new world of rehabilitation, she has sounded cautiously optimistic, that is, until this week. In an email she states: "the nursing home told us that they evaluated Mom today and they feel she has hit a plateau, so as of Friday 9/9, her therapy will come to an end. We were told originally, she would have 100 days paid thru Medicare if she showed improvement. She is doing way more than I ever expected she would be able to do...but apparently it isn't enough in their evaluation."
Plateau, I have always hated that word. What does it mean?How is it being determined, and Who is making that determination?
"The patient has hit a plateau" is often used by therapists to refer to a period in treatment when an individual fails to continue to make any measurable progress, and hence, used as justification to discharge from therapy. I am quite certain that 6 weeks following an acute stroke my aunt has NOT hit a plateau as she is barely out of the acute phase of recovery. In fact, studies looking at motor recovery following stroke have found that the most dramatic improvements occur in the first 30 days, and with more severe deficits, 90 days. (Stroke, 1994) It is also known that various other factors such as post stroke fatigue, anxiety and depression can also influence how a patient performs in the early or even later weeks of treatment, and yet these are frequently overlooked, perhaps because they or more difficult to assess, in particular if there is a communication problem.
So, what can you do, if you, as a family member, feel that your loved one is still benefiting from rehabilitation, despite a plan to discharge from treatment? An appeal is an option. This may sound scary to many family members, but it may represent the best opportunity to determine if in fact further therapy will be of benefit. Measuring progress or improvement in response to treatment should be conducted using some standardized measures. Ask to review all of the therapy chart notes, and then request a meeting with one or several of the therapists and rehabilitation director. If the therapy team is not willing to extend treatment, a written Notice of Medicare Provider Non-Coverage (NOMPNC) form must be provided at least two days before the anticipated discharge , and you, as a family member should be given further guidance as to how to proceed.
"This is all so overwhelming. I consider myself a petty bright person, but this make me feel so inadequate," my cousin stated. I tried to re-assure her. It was not her, rather, the system , which sadly is designed to make us ALL feel that way. It is a daunting task for most people to navigate their way through the health care system , where care is now largely guided by payment. But, your insights, your intimate knowledge abut your family member and your observations about their response to therapy is all important.
I am not disregarding the fact that some times, an injury to the brain is so significant that further recovery of a specific motor or language function will never be anywhere near normal level. Nor am I disputing the fact that there is always a time when formal therapy must come to an end and strategies for stimulating further improvement in function,taught and transferred to family members or care personnel. But, it is the word, "plateau" I reject. A word I have often thought had more to do with an individual therapist's own lack of creativity or skill set than the patient's abilities.
I am not sure that it is entirely possible for any of us as living and breathing human beings to "plateau" in life. The very word implies that life becomes flat. For my cousin, the word and this week represents the anxiety and fear that most family members must feel and face when they truly realize that recovery is a long process and that they are now the advocates for continued care.
A resource for families is the Stroke Connection. It is a free publication of the American Heart Association, and its stories and information provide encouragement and hope. You can find them on Facebook, visit their website, or call: 1-888-4-STROKE
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