Parkinson’s and your voice: discharge day, and now what?

Providing therapy to patients whether speech, physical, or occupational, is challenging in today’s health care climate. Being in private practice is an even more  interesting enterprise. CMS ( Medicare) and private insurers are already setting limits on visits, whether by cost or frequency.  And, so, unlike many businesses, where customer satisfaction is measured in a high return and referral rate, many of my patients will never return  after their 30 day plan of care. In fact, reducing return and dependence on the healthcare system is an important positive outcome measures.  Patient satisfaction is another measure of care.

 So now, with even less time  available to provide therapy, a treatment program needs to be designed that is effective, efficient,  and delivered in a cost effective way . All of these considerations result in a huge demand for collaboration between therapist and patient, regardless our discipline.

From the onset of treatment, we need to be thinking about goals for discharge. And although most patients ,will  achieve some measurable improvement in speech, voice , and swallowing, in response to  thirty days of direct treatment, in the presence of a neurological disease diagnosis, those improvements may be short lived if the patient does not have tools in hand to be able to practice exercises and strategies on their own.

For some time now, I have used video-taping of patients as a method of increasing the likelihood they will retain improvements achieved in therapy. Video-taping a patient at the onset of treatment is a good way to document base-line performance, and video-taping patients performing a prescribed voice or swallowing exercise can also be a great tool for feedback and review. Once that video has been placed on their home computer, the instruction, coaching, and demonstration, remain available to them for as long as they need or want it.

 

Utilizing a pre-recorded program, like the Voice Aerobics™ DVD, can also be a great way to improve adherence to voice practice during and following completion of formal therapy. When Voice Aerobics™ is introduced prior to discharge,  the patient can be guided and coached through the program, with recommendations for continued use at home. Incorporating a home-based program early in treatment may provide patients with concrete tools that will help them be more successful in achieving those 30 day treatment goals. For patients with concomitant problems of memory, a pre-recorded or video-taped home program can reduce caregiver burden.  Patients seem to enjoy when they can go into their home office, boot up their computer, and practice independently.

As I gaze into my crystal ball of the health care delivery future, I see more home-based and patient driven treatment programs. With this sort of shift, the therapist may become more like a personal trainer .  She/he will design a program and provide patients with the tools to perform that program, independently, or with supervision. Periodically,  a patient may meet with their therapist/coach for reassessment, updated instruction and revision of exercise. This paradigm shift may not come easily to therapists or patients. Particularly patients who are accustomed to going to therapy to “get” something, rather than for instruction “to do” something.

Home based and patient driven programs may address some of the  variables  that have been associated with  poor  patient adherence, and which include:  

  

    *  Expense                                     

    * Complexity of the treatment program

    * Forgetfulness and lack of social supports.  

    * Inconvenience in location or lack of

      transportation.

  

Home based treatment may be no further than the patient’s computer or remote!



  Ralph practicing swallowing exercises at home computer.

Parkinson’s and Voice: Whose patient are you anyway?

Perhaps it is all of the bickering in Washington over the last week, maybe it’s the hour phone conversation with an insurance provider trying to obtain coverage of speech services for a patient who is profoundly disabled from progressive supranuclear palsy, or, perhaps it is the emails from a friend of mine with Parkinson’s, detailing her struggles with her HMO to obtain quality care.
All that I know is that it has put me in a cantankerous mood.

Two interesting findings were reported this week regarding the safety of our healthcare system:Centers for Medicare and Medicaid Services (CMS) began reporting hospital-specific rates of eight hospital-acquired conditions(HACs),so patients can compare how often the nation's 4,700 hospitals make preventable medical errors. In 2008, Medicare stopped reimbursing hospitals for the errors, known as "never events" because they should never happen. Patients also can't be billed for treatment of the never events.

In a related study. it was reported that the annual cost of measurable medical errors is at least $17 billion, with the "social" costs calculated as high as $958 billion each year, which is nearly half of all U.S. healthcare spending in 2008, according to two separate studies published in Health Affairs. Complications from an internal prosthetic device, are listed among the top medical errors.

In light of these findings, it is concerning to me,therefore, that a friend of mine, who has had Parkinson’s for 15 years, and had deep brain stimulation  6 years ago, is being denied access by her HMO to the top neurologist in her area, who not only has experience with the largest number of DBS patients, but who has also successfully completed her programming in the past.

(Deep brain stimulation is a surgical option for patients whose symptoms are not sufficiently controlled by medications. Electrodes are implanted in the patient’s brain, at the precise location where nerve signals generate the tremors. These electrodes are then connected via an extension wire to a neurostimulator, which is implanted just under the skin below the patient’s collarbone. The amount of stimulation is programmed for the patient, and can be adjusted as their condition changes over time.)

Accurate costs for DBS are difficult to obtain, but roughly, $30,000 plus physician and MRI fees. ($100,000?) (1) The costs of DBS are often balanced against a cost reduction in the use of medications (2) and an overall improved level of function for the individual undergoing the surgery. However, over the last few years, as DBS has become more common, I have met a number of individuals who, while reporting amazing reduction in gross motor symptoms related to their Parkinson’s, report a worsening of some aspect of speech and swallowing. In attempting to address some of the problems, the skills of the programmer, good communication between the patient and provider and the willingness to probe symptom relief or worsening in patients are critical.

So, that brings us back to my friend. Despite numerous patient complaints (3) regarding the neurologist within her HMO system, the hospital administrators have failed to take corrective action against the physician and/or “allow” my friend to see her original programmer.

A reported benefit of reporting medical error rates according to CMS, is that making the data public,especially outcomes data , is important because it allows patients to wisely choose a hospital and it helps hospitals ensure that every patient gets the best care possible. But really,  do any of us really have  freedom of choice under our current insurance/payer system?


I receive several calls monthly from individuals wishing to be seen through my private practice for speech-language , voice or swallowing treatment, but whose insurance requires they remain "in network", requiring them to receive treatment from an alternative practioner , sometimes with skills different from what has been prescribed or from what the patient desires.

Upon entering private practice two years ago, and becoming responsible for the cost of my own health insurance benefits, I am embarrassed to say , that even with 30+ years of experience working in hospitals and healthcare, I was frankly overwhelmed and confused by the choices. When I attempted to reduce the cost of a monthly premium, it usually came at the expense of a high deductible and limits on where I could go for my care should I need a specialist or hospital stay. For me, that was the only thing I knew for certain, I wanted freedom of choice. If needed, I want to seek out and be able to be treated by the “best” physicians and receive care in a hospital that is known for a high standard of care. I pay dearly for that choice, and I hope that should I ever need to use my health care coverage, that the choice does not turn out to be an illusion.

All of us deserve freedom of choice when it comes to our health. None of us would continue to take our car to a mechanic whose reputation was for making cars run worse rather than better, and yet, when providers mandate individuals go to any  health care provider, despite their poor reputation for performance or interpersonal communication, this is simply another form of medical error. When a patient likes and trust their providers they are more likely to enter into a collaborate relationship with that provider, more likely to adhere to demanding regimens, including ones requiring management of chronic illness, more likely to take medications on schedule, and so on. Perhaps the most disturbing comment from my friend regarding her situation and a few others in the same HMO, is that she tell me that some of the other individuals, especially the older patients, hesitate to complain for fear of retaliation. That is really the comment that sickens me. To think that anyone would ever feel so controlled by their insurer or their physician to not be willing or able to protest what they perceive or know to be bad care. Individuals with  communication problems may be among the most vulnerable of health care recipients, as they are often patients, who in the most literal way,may lose a voice in their care.

(1): With 3 surgeries (2 to implant the electrodes and 1 to implant the battery) costs may be  in excess of $100,000.

(2): A big part of the art and science of programming is balancing the medication adjustments with the stimulation adjustments.

(3): Patients may complain within a support group, but report that they are fearful to wage a formal complaint less they suffer some retaliation.