ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, July 6, 2019

Dear U.S. Healthcare Delivery,

Ten weeks ago out of the blue, I heard the words "canine lymphoma."  My beloved basset hound was old.  I could tell by the reaction at our vet's office that it wasn't good.  I had my preconceptions about what was appropriate in a senior dog.  My ALS training kicked into gear.  Gather as much information as you can as fast as you can.

Thanks to Dr. Google, I learned that it is indeed a bad diagnosis.  I also learned that you need to find out exactly what form and stage of lymphoma it is in order to make good decisions.  And you have to move fast.  This is speed chess with a cunning disease.  And there is always the lurking concern that maybe it's kindest not to do anything.

And again thanks to Dr. Google. I found that Purdue University has some of the best lymphoma expertise in the country.  Our local vet is a Purdue vet.  We are a 90-minute drive away.  The referral went quickly.

Here are some things that human healthcare delivery needs to learn from the Purdue University College of Veterinary Medicine --

Be capable of getting to the right diagnosis and action plan quickly.
You could tell they've done this before.  They had an efficient diagnosis process.  In one long day the testing, exams, and evaluations were completed.  The oncologist talked patiently with us about options, possible outcomes, realistic goals.

Leave the patient and caregiver in charge of the action plan.
We knew that we could always discontinue treatments if they weren't providing a good quality of life.  The goal was to have a dog who didn't know she's sick.  We never lost control of decisions.

Have good medical records and use them.
This was incredible.  Every visit we were provided with a visit summary that an oncologist or student reviewed with us before we left.  The records were readable and accurate and extremely helpful for our reference and for reference at the next clinic visit.  I noticed that nobody complained about the EHR system and nobody cursed using the words "Epic" or "Cerner."

Return your phone calls promptly.
I didn't call often, but when I did, I got a return call from an oncologist who was familiar with the case.  It never took more than an hour to get the callback.  They have a triage process that works.

Speak intelligently to the cost concerns that enter into decisions.
The doctors could actually speak to cost.  That matters in medical decisions.  Try that in human healthcare!  And at the end of every visit we knew what was on the tab for that day.  There were no delayed surprises later.  There were no mysteries.  Nobody punted cost questions to someone in another office.

Make it easy to choose clinical research.
I asked about clinical research on our first visit.  My goal was to make some good come from a bad situation.  It was easy.  My hound was enrolled in a trial that did not preclude the standard therapy and I was actually enrolled in a study for human caregivers.  And my hound qualified for a research-participant discount that her human appreciated greatly.

Get information for caregivers who are concerned.
One appointment when they were giving my dog a treatment seemed to be going on awfully long.  I asked the receptionist if everything was ok.  She called oncology and I got a reassuring message within a minute.  I didn't want to be a bother.  They told me that I wasn't a bother and they were glad to check.

Take initiative.
In the waiting room one day there was a water supply leak in a corner.  The junior receptionist asked the senior if she should call maintenance or get a mop.  The senior receptionist said that she should get the mop and that the senior would go ahead and call maintenance.  There is no "it's not my job" syndrome here.

Listen.
We were never rushed while talking through the almost weekly decisions that had to be made.  Human healthcare aspires to shared decision-making.  This is shared decision-making in action. Some days it requires a lot of listening about things that may not seem important to the healthcare professional but are important to the patient and caregiver.

Do a sound check in your exam rooms.
I always find a ironic that human healthcare spends a bazillion dollars on HIPAA and I can typically hear exactly what is being discussed in the neighboring exam room (and I assume vice versa when it's my turn).  Build soundproofing to Purdue standards, please.

Take your patients personally.
On Tuesday, we drove to our appointment and I knew it was going to be our last one at Purdue.  The lymphoma finally outsmarted us.  I expected a different doctor that day.  Again I was amazed that our oncology team that had taken care of us every week for the last two months was with us through the entire process.  The oncologist told me they take their patients personally.  It was a hard day for all of us, but I'll forever be grateful for the kindness they delivered on Tuesday.

Right now it doesn't feel like our story has a happy ending, but once the heartache eases a tad, it will be good to know that we got to try, that my hound had two great bonus months where she could still dig holes in search of chipmunks, and that the people who delivered her care so well were together with us through a good finish for a great dog.


In ten weeks I learned that healthcare delivery can work a whole lot better than I've ever experienced before.  Human healthcare leaders,  spend a day at Purdue shadowing a caregiver.  Don't say, "We can't possibly do that."  Say, "How might we..."

Sincerely,

A Human ALS Caregiver and Canine Lymphoma Caregiver