Former Hospice Rejects Part II

Some people believe space is the final frontier(….pause to see if any students get the Star Trek reference).

Others believe our greatest unearthed worldly wonders lie within the depths of our oceans.

I’m going to suggest that we need not shoot a probe into space nor plumb the deepest seas to marvel at our greatest mystery: all we need to do is look within these neuro noggins(wrap knuckles on top of skull)of ours and examine the 3 pound mound of folds and jellied flesh we call our brains.

Our complex brains separate us from(probably) every other species on earth.

They serve as the seat of our consciousness.

They are the source of life–without a fully-functioning brain, there would be no awareness, there would be no heartbeat, even worse–there’d be no Intro to Psychology course!!!

Without a brain, I’d be out of a job!

Yet we know less about the brain–our source of life–than we do any other body part.”

So begins my first lecture on the brain in my Intro to Psychology course(yes, people actually pay me money to educate the youth of today–scary, I know).

We spend maybe 3 classes on the brain, barely skimming the surface of the staggeringly intricate innerworkings of chemistry, biology, physics, engineering…and the list just keeps on going.

Estimates suggest that there are more potential connections of neural pathways in the brain(evidence of the brain’s communication/information superhighway so to speak) than there are stars in the known universe.

I’m not a numbers gal, but even I know that’s a hella-lot.

The brain is hella-complicated.

I start off this post the way I start off my lectures on the brain to suggest this: We are not even in the infancy stages of understanding our brains; I suggest we’re still in neo-neural-natal stages.

Heck, we’re still learning about new brain structures tunnels in brain. Rosehip neurons

With all the challenges expert researches face in fully understanding such a convoluted structure, it comes as no surprise that the general medical community is often left scratching their collective heads when faced with how to appropriately identify, diagnose and treat patients with neurodegenerative issues.

In my previous post, I shared my frustrations at the seemingly arbitrary requirements needed for acceptance into hospice when diagnosed with a fatal, degenerative neurological condition.

This post hopes to delve into the above-mentioned challenges a bit further.

So I decided to strap up my spiked sleuthing boots and spielunk into the cavern that is hospice.

And, sadly, I can’t say I’m much more informed than I was prior to my info-mining quest, at least not as far as neurodegenerative diseases are concerned.

I’ve already mentioned one of the challenges in understanding if and when an individual with a life-limiting brain disease is appropriate for hospice–understanding(or lack thereof) of the brain itself.

Let’s move onto another key hospice criteria—time.

As I’ve mentioned in previous posts, in terms of eligibility, hospice is looking for a patient to not have much of it—6 months or less to be precise.

Of course, no one is walking around with an expiration date tattooed on his/her forehead, so this is a subjective determination.

But the life-trajectory of some terminal illnesses are a lot easier to gauge if we’re talking a reasonable likelihood of death within 6 months.

End-stage aggressive cancers, congestive heart failure, liver failures—all of these diagnoses usually carry with them some clearly measurable variables that suggest the patient is “dying”(here’s a link to a “scorecard” of sorts for various illnesses and their requirements for acceptance Hospice Score Card )

With brain disease, those clear variables aren’t always so “clear”.

The following link is from the National Hospice and Palliative Care Organization Dementia codes

It is a nine page document(nine pages!!!!) listing all of the ICD 10 dementia-related diagnoses that CAN’T be used as a primary diagnosis for hospice admission.

That’s nine pages of diagnoses JUST related to dementia.

Now, if we’re talking primary brain tumors(which some would debate are not “technically” cancer since they don’t usually metastasize), often the individual affected doesn’t have the same symptoms seen in more “traditional” cancers.

One thing you don’t want to see in a traditional cancer is evidence that the cancer has “spread” to another body part. As far as staging of the seriousness of the disease, however, this is a clear, objective measure that usually indicates disease progression.

With primary brain tumors(those that originated in the brain), the tumors don’t often “spread” outside of the brain.

So it’s not like your brain tumor is likely to spread to your liver or stomach or breast.

Sure, the reverse can happen and often does(breast cancer that metastasizes to the brain), but we usually don’t see it the other way around.

With most brain tumors, there are no separate body parts affected and, as such, the clear, objective measurements of disease progression are much less—well, clear.

In my experience, at least with Jamey, the symptoms he experienced his last three years were much more analogous to those symptoms displayed by someone with dementia.

So basically, with both dementia and brain tumor diagnoses, we know these conditions are both life-limiting.

We know there will be decline.

We know the individuals affected will likely succumb to some symptom(s)of their disease.

The brain’s where it all starts and stops, folks. If that ain’t workin’ ain’t nothing else workin.

But what’s less evident is “when” that will happen.

And since one of the criteria for admission into hospice is “when”(likely six months or less), the dilemma faced by patients, caregivers and friends of those with these disorders is obvious.

So what can we do to make sure that not only the patients affected, but the caregivers and friends of those with neurodegenerative diseases maintain their respective qualities of life for as long as possible?

Frankly, I don’t know.

I do believe a change is coming(I’ll talk more about that in my next post), but I don’t know how swiftly it will occur.

Being informed is helpful, of course.

I’d suggest talking to your doctors, obviously, but not necessarily taking their word as bond.

In previous posts, I recounted the “break-up” convo we had with Jamey’s oncologist when she gave us the hospice referral.

I had a ton of questions for her.

She had zero answers.

Something similar happened with my mom’s primary care physician.

Her doc was the first to broach the idea of hospice for her, an opinion that(from what I can remember at least)was based on the fact that she’d lost 10%of her body weight.

While that was true, there were many other factors that actually prevented her from being accepted into hospice the first time.

So in my case, the two doctors who made the (futile) hospice referrals didn’t even know much about the hows or whys.

When even medical professionals are at a loss of how to handle those with end-stage neurodegenerative illnesses, it’s no wonder the average Joe or JoAnn feels helpless and frustrated.

All I can say is that if there is a shift in the way we view all neurodegenerative issues(brain tumors, dementias, Parkinson’s, Traumatic Brain Injuries, etc) I hope my brain is still in good enough shape to appreciate the significance.

2 thoughts on “Former Hospice Rejects Part II

  1. Hi Kim, always so glad to see your posts! My comment didn’t go through,
    (argh) so I’m trying again with this little greeting. I’m thinking on what you wrote and I will try again later.



  2. Trying again, I think I just dawdled too long the first time…I went back and read the first part of this subject and then I found a 2014 NYT article on for profit vs, nonprofit hospice setups that was kind of interesting and really sad to read. It addressed the in and out of hospice dynamic that is at the total opposite end of the spectrum from the peace and sliding down that should happen at the end of a long illness but doesn’t happen very often.

    Not throwing them all under the bus, mind you, but Hospices ( not all, if course) that are for profit lean toward bouncing the patient out when the end of life care starts getting more labor intensive ( expensive) because of their relationship to Medicare. They get paid one rate regardless of the level of care a patient needs. There are caps on what Medicare will pay to hospice and other complicated things over my head but they sound really bad for the patient and families. They also will take patients sooner as in the entry gate with for profit hospices is wider than the one for non profits.
    < Makes sense, I have worked for various nonprofits, just because I liked to do it but it was more of a vocation with no overtime but long hours then a job that actually paid the bills. )
    And That 'bouncing', as in; ' bye now, expensive patient, you aren't dying fast enough' can be a little more dramatic if the care is at home rather than in long term care. I can't imagine what entails the abandoning there? I guess the nurses pack up the commode, roll the hospital bed to the curb, the happy pills that kept the patient calm and just leave? It all comes down to coding, authorization and chains of command, I guess. But that all takes time to iron out the caregiver has to have a part in the changes and bumps wether they want to or not.

    Then there is the switch in philosophy ( don't know if I'm using the right word here) behind the care. The hospice patient not getting treated, not having to endure this or that needle stick, or test/ scan, time in the hospital ( all awful) while in hospice ends up in the emergency room in their final days and, at least in the fog of the crisis that landed them there, well, here comes the docs and nurses with needles, the tests, etc.

    I'm witnessing this tug o war going on with a friend's aging father with dementia. In hospice, out of hospice. Them asking, 'did we jump the gun? He's doing a little better, but still dying. What now?
    Another caregiver friend's husband is actually steering the ship with the 'in, out' thing. He demanded to be released from hospice, even with obvious end of life stuff going on and refused treatment for things other than cancer which were going to kill him first. But decided he wants to go into a clinical trial. So out of hospice, back to all the doctor appointments with a frazzled scared wife who can't get him in and out of the car. Two weeks of that,; tests, MRIs, being offered it then starting another round of chemo ( clinical trial) and then so many complications from other health issues that never mind…he's back IN hospice

    Anyhow, who wants to go thru that while they are watching their loved one die?
    Kim, I really felt for you when you described your situation with Jamie when it was coming close to time for his hospice review right before he died. The article said on average when a patient ( my words) fails a review and has to leave hospice, they usually die about 2 months later and they are in and out of the hospital via many ER trips. Anyhow, just night mullings. Very gkad to have a place to do it.

    – Judy


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