August, 2020
pALS (person with ALS for you newbies) are constantly inundated with challenges. Some come from the ALS disease itself. Many, however, come from managing treatment through my ALS clinic, the medical industrial complex, and the world at large. At the center of attempting to manage this disaster are the ones with the least experience in doing so: the pALS and, if they are lucky like me, their life partner.
Managing just the medical issues is a full time job. As I write this, I have been turned away by two GI doctors for management of my g tube, aka feeding tube, peg tube, among other names. Problem is that the current tube, known as a Mic Key, is supposed to be replaced next month and good luck getting an appointment with a specialist in that time. My experience with this g tube has been the subject of two prior blogs and it’s beginning to appear that more fun is on the way.
On top of this joyride are the daily challenges. I need to get additional devices to enable me to transfer to the all important commode wheelchair, an end of evening caregiver to assist Laurel so I can sleep in a bed rather than my wheelchair, and on and on and on. Each of these tasks would fill up an entire blog which I might just write if you’re not nice to me.
OK, enough with the whining already. My point is that the current silo approach to care fails us pALS by requiring those silos to be managed by the inexperienced patient and their families. This likely increases cost, and certainly increases outcome risk. ALS should not be managed by amateurs. A management approach integrating the medical and non-medical aspects of ALS recognizing the limitations and inexperience of pALS and their day to day care group is desperately needed.
To provide truly integrated management of all the challenges faced by us pALS requires a multi disciplinary case manager resident at the ALS clinic that serves as the first point of contact to insure that clinical and nonclinical services are timely and properly delivered. The case manager must be a patient advocate with the ability and authority to make sure a pALS is receiving necessary care, among other things.
Let’s wave the magic wand here and fantasize how this could work. The manager is notified on the morning census that one of their clients had been hospitalized. They contact the admitting doctor to get the scoop and the next steps. Finding a follow-up is required the manager coordinates with the pALS and the appropriate doctor to schedule the necessary appointments. Done.
The Bay Area has three ALS clinics that are deemed by the ALS Association to be Centers of Excellence and are rated to be in the top 10 nationwide by US News and World Report, if memory serves. One has no case manager, one has a part time case manager, and one I don’t know. Not promising statistics for this mecca of ALS.
In subsequent blogs I’ll continue to offer thoughts of why this problem exists. Hint: it’s the F word. I’ll also suggest what Super Case Manager might look like. Hint: no capes. In the meantime add your comments on this topic, especially if you are a case manager.
Embrace The Suck 
Oh, Bob, I love/hate reading these blogs. You can understand both of my emotions–I hate that you are going through this, I love how you write so articulately, humorously and poignantly about it. You are teaching me things. My friend Vangi had a stroke at age 49 and she suffered some of the same experiences with the medical system because most stroke victims are not that young, so the approach is kind of “they’re old and will probably die shortly anyway,” which did not apply to a 49 year old! I feel for you and all you and St. Laurel are going through. Your insights about what is needed are so so sane and sound. Now, how do we get anyone to listen and, more importantly, make these changes? Rick and I wish we could do more than tell you how much we appreciate and love you, but we know there isn’t much we can do, and yet we keep the faith you or Laurel would tell us if you find something we could do to be of help. Anything. No, not anything. I am a mediocre caregiver with a shitty attitude, so skip that fleeting idea, even if it would be for a few moments of relief for yours! Take care and keep writing. It is a special gift to the rest of us, as you are to us also. Sandy
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Ah Bob, your comments are dear to my heart. I spent a good part of my career demanding, begging, groveling, writing grants and doing demonstration projects to get this kind of case management going for persons with disabilities. It always came down to the F word indeed. For my own partients I managed to set up a network of hospitalists, therapists and social workers who would alert me if anyone was in the hospital who needed something they weren’t getting. But that was only partially effective and sooooo inefficient. I’m sad to say I let go of that bettle with retirement, but I still believe it is the best way to care for people with complex conditions. I feel like medicine is going more and more in the opposite direction: Silo-ing and specializing, and no one looking at the big pictures. I’m thinking though that maybe you can get a case manager through your insurance. It would lessen the burden to have an insider to fight these battles for you. What do you think?
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Hi Bob
Case management is really strong in the VA Medical Center here; actually they deliver coordinated care.Although they get negative contrary press!
Not sure if our HMO system is as efficient. However I’m not sure it is as flawed as Your pALS experience. So you are correct it could be improved!
Thank you for communicating that!
Geez hope you get that g tube appmt.
We are celebrating Chris wedding in 1 week. Venue & hotel had to change.
Crazy Covid Times😷talk to you &
Laurel when we return💕Marie
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If you need help with a G-tube, let us know. As I have mentioned, I have a daughter and had a daughter who used G-tubes. My mother in law as well. We use a g-tube everyday.
Bob, next week we will address the first year medical students at Stanford. It will be a lecture by their teacher on neuromuscular disease. I would like to use some of your comments in that presentation. Let me know.
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My dear friend, Caroline, is a patient navigator for breast cancer patients at Dominican Hospital. She is one of the first 2 people the patient encounters after the pathology report determines a positive diagnosis. She calls the patient, attempts to talk them down from their anxiety and begins the teaching. She explains, superficially, what the path report means, what to expect with their first onc visit and attends the visit with them! She does the chemo and xrt teaching and visits them on their first and last days of treatment. she acts as a go between with the doctors, the social workers, the insurance coodinators and the patient. I always said, ” Whenever someone comes to Stanford for the first time.e, they need to be assigned an agent. That’s kinda what Caroline is. I know Stanford attempted a patient navigator role in oncology, but I think it fizzled out. Y’all talk about the F word, FINANCE!!! Nurses are relatively cheap! The entire ALS team could function with 1 case manager, or navigator, or whatever you wanna call them! Case managing ALS is not rocket science!!! All patients basically need the same things, just at differing times. Just set up all your DME contracts, maybe even have some contracts with car agencies to provide wheelchair accessed vans. Set up contracts with home health agencies, the home needs are not a surprise, should be easy to plan for! AND, how about a class on ” What to expect when ALS visits your home”! I tell Bob all the time, most of what I have !earned about ALS has been on the many support groups on FB! I’m a nurse, I know more about sickness than most people and it has been difficult for me to help. Imagine the poOr t people who really know nothing, have small children to take care of and the medical establishment is failing them! I AM part of the medical establishment and I am truly EMBARRASSED!!!
OH BOY, hopping off my soapbox, for now! Maybe I should send a copy of this to the CEO. FWIW!!!
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YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I’m so disappointed.
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It makes so much sense. Praying it will come to pass.
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