Managing Medicine on Hospice

 I’m learning things these days that I never thought I’d need to know. And being a senior with a terminal diagnosis, these are things I shouldn’t really have to be learning. But such is the state of reality.

One of these learnings is that the journey to the Summerland (as I call this process of conscious dying) is that I’ll be required to take a detour or two from the expected straight forward ways of acquiring medications and discovering an objective picture of my health status. I’ll explain.

The Pain Relief Odyssey

Early in 2024 when I was getting a number of CT scans so various hospital physicians could determine which toxins – I mean, pharmaceuticals – to pour into my body, a vague reference to osteoarthritis showed up on my scan report. Since it wasn’t related to the tubo-ovarian abscess they initially treated, nor to the cancer they eventually diagnosed, no one discussed it with me. And I was too out of it to pursue the finding.

Knowing about and concerning themselves with osteoarthritis was not in the toolbox for the infectious disease doc dealing with the abscess. When I mentioned that it was a surprise to me, he shrugged it off. “Oh, everyone ends up with that sooner or later,” he told me.

The oncologist was even less interested. “You’ll have to see your rheumatologist about that,” she said, as if it was expected that I had a stable of doctors at my disposal.  

Daily in-patient visits from hospitalists and nutritionists never brought it up, even though some foods can worsen pain-causing inflammation. “Eat all the bacon you’d like,” and drink these high sugar protein substitutes (like Ensure, etc) was their recommendation.

They’d leave and I’d chuckle and shake my head. Even I knew that was crazy. Seriously, what is the point of hospital “nutritionists” if they are going to give such bad, health-defying advice? Did they not learn about food as medicine in nutrition school?

Since lying in bed for 5 weeks wasn’t causing me the back pain I’d been accustomed to for years, I didn’t pursue this CT finding. Dealing with chemo was the much bigger issue of the moment. Usually Aleve and Tylenol took care of the back pain anyway.

In January 2025, a CT scan was more detailed, identifying degeneration of the spine at the Lumbar 5 position. That made sense. It was exactly where the pain was. And now that I was recovering well from chemo and tumor removing surgery, and returning to more activity, the back pain was at times excruciating. A 12 to 15 on the usual 10 point scale when simply standing in the shower.

My primary care doc prescribed Meloxicam, an NSAID like Aleve but supposedly stronger. The first month was covered completely by my insurance. But the first refill was denied.

I was stunned. Why would insurance suddenly not pay for something they had just authorized? It was an expensive drug, costing nearly $50 for a month’s supply. The drug store pharmacist helped me find a GoodRx coupon that cut the cost in half, but the question of what seemed a capricious lack of coverage remained a mystery.

Would hospice provide this common drug? After all, their entire mission was to provide comfort care.

But there were two problems. The spinal degeneration wasn’t related to the diagnosed cancer and therefore not under the purview of their allowed help. And Meloxicam wasn’t included in their formulary of available drugs anyway.

The hospice nurse was happy to arrange morphine for me. Morphine is hospice’s go to drug for even mild pain as well as shortness of breath. I frowned and told myself that surely that was malpractice.

Needless to say, I refused. A narcotic seemed excessive, and having had that before after a caesarian, I knew one dose would render me completely non-functional for days. The whole point was to gain functionality, not sacrifice it.

“What about dexamethasone?” the nurse asked.

“Isn’t that a steroid?” I asked, knowing full well that it is. 

He nodded, tried mansplaining its virtues, and became frustrated with my stubborn opposition to such drugs. His hands were tied, though. He could only supply what was on hospice’s limited list of pharmaceuticals.

“No thanks. I’ll figure out something more acceptable.”

Puzzled and frustrated, I contacted my insurance company to find out why this pain reliever was denied. “Oh,” they said in an online chat, “you weren’t on hospice the first time you filled the prescription. But now that you are on hospice, we don’t pay for analgesics, anxiolytics, and antiemetics.

WTF?!

After a few hours of mentally stomping and screaming in my frustration at the stupidity of this, I remembered that Amazon has pharmacy services. Looking into that, I discovered that they can take over a refill prescription from the previously used drug store, and happily accept scripts with or without insurance coverage. The Meloxicam would cost me less than $8 for the final refill.

Three days before I ran out, I signed up for the Amazon Pharmacy and switched my remaining refill to them. They filled it almost immediately with no hassle and it arrived at my door, with no additional delivery charge, well within 24 hours.

There may be lots of reasons to avoid Amazon, and I’m not insensitive to them all. But for a senior with limited mobility when in pain, they are a life saver.

Labs Without Physician Orders

I suspect we’re all schooled to believe that blood tests require a physician’s order before any lab would stick a needle in your vein. Lately, I’m seeing this as another form of control over patient autonomy. A personal experience confirms this.

I’ve found a naturopathic doctor who is also a Fellow of the American Board of Naturopathic Oncology. I can’t tell you how exciting it is to work with someone who has all the botanical expertise and homeopathic knowledge I’ve wanted as well as the integrative medicine perspective and training in oncology.

And yes, I’m still connected with my primary care /family medicine MD, who is equally experienced and easy to access.

I asked the ND for a review of all 16-20 supplements I am taking in an effort to keep my liver working as long as possible, and forestall the expected end of life liver failure pain. She wanted a number of blood tests to effectively determine the amounts of supplements and vitamins. Sounded reasonable to me. I said I’d ask my MD to write the order so insurance would pay for them.

To my surprise, the MD had a little initial push back on this idea of blood tests. Her argument was that they might not really yield any information that would make a difference in terms of hospice care which prohibits curative treatment of the diagnosis that makes me eligible for hospice.

Sound convoluted to you? Yep, me too.

There seems to be a prevailing expectation that a patient on hospice needn’t be bothered with more tests. I’ve been told this by more than one MD and the hospice nurse. And that getting tests, knowing the results, would only cause anxiety and incur unnecessary expense and discomfort from more needle sticks.

Hospice is hugely invested in preventing anxiety, as if a patient feeling their feelings is a bad thing. Okay, yes, a vast majority of the American public doesn’t know how to manage emotions. As a retired psychotherapist, I know this well.

Or, probably more accurately, this impulse to prevent emotion is because anxious patients can be more difficult to deal with for the hospice team.

Now, who is it exactly that is more afraid of emotions?

 Anyway, maybe I’m just an odd duck when it comes to these things. Or an over-educated consumer. But for me, knowing the status of liver function from AST and ALT values tells me something very important. Compared with the last tests done, I’ll have a more objective view of how fast my liver is failing, or how well all the supplements are maintaining a compromised but functioning status quo.

This could give me hard evidence of why I don’t feel like I’m dying yet. Or it will perhaps disabuse me of that delusion, and urge me to more quickly pursue all those “getting my affairs in order” arrangements.

So, being the contrary rebel that I am, I searched for alternatives to getting these tests  because it seemed the MD wouldn’t order them. I found a lab nearby that accepted clients without doctors orders. They even had a business model that allowed clients to choose three tests they wanted for one very low fee.

Aha! I had an ace in the hole.

Then it occurred to me to check with my insurance to see if they would cover blood tests ordered by an ND instead of an MD. They do! So at a follow up visit with the ND she noted that she used another walk-in lab that was even closer to me than the one I’d found. Right in the same building as my acupuncturist.

That’s a sign, right?

In part, I have to laugh at how absurd the conventional medical system is, including the capitalistic insurance gatekeepers, with all the hoops they make us jump through. And I’m grateful every day for naturopaths who have a broader knowledge and the holistic perspective that makes such a difference when life seems to be spinning out of control.

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