Starting Hospice

Friends – it does not bother me to be talking about death and dying. I’m quite philosophical, objective, and somewhat amused about it. I hope for you that this is interesting and informative, but not distressing. This post is just another day on the journey. 

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I started on hospice care last month. It was a bit of rough adjustment, given that I’m still quite independent. Completely cognitively capable. It was just this unrelated osteoarthritis and degenerative L-5 pain in my back that spurred me to give hospice a try. And who knew what the cancer would do at any moment, right?

Hospice is a bureaucracy like any other. It has its rules and protocols. I was told I’m in charge and I could do what I wanted as long as I physically and mentally could.

That was not entirely true, as I learned quickly. But it did empower me to fire a medical social worker after an initial visit.

Assured that hospice prefers people enter services earlier rather than later, I was eligible at the end of January 2025 when the oncologist gave me a 6 month prognosis.

Being a former journalist, I thought of this as a deadline. The play on words amused me.

Prognosis is not an exact science, I knew. But if accurate, by end of March I had “spent” 33% of the allowance of last days. I wanted to be smart, get integrated into the system while I could still advocate for myself. Before I was truly impaired.

I made a call and they sent out an intake nurse. She was great. We had a very pleasant 2 hour visit, talking and laughing while she assessed my current state. I wanted to keep seeing her in bi-weekly visits, the minimum Medicare requires. But hospice doesn’t work like that. I would never see her again.

It was like waving pie ala mode in my face, then never giving me a spoon. Harrumph.

That was a Thursday. The following Monday I met the medical social worker. They (using the gender neutral pronoun for the sake of their privacy) were very business-like, and vested in learning what equipment should be ordered.

Did I need a hospital bed? No. A wheelchair? No. A rollator? No.

Apparently ordering stuff was their job. They took it seriously. I must have been a big disappointment to them.

With their face understandably hidden behind a mask because the hospice rule is to keep staff and clients safe from surges in Covid, the visit started off like dealing with a robot. They were unyielding about following the rule when I invited going without the mask. My shots were up to date. I wasn’t a danger to them. We could have kept our distance. Afterall, they wouldn’t be required get up close and take vitals.

But no. So I couldn’t see facial expressions, or smiles. No rapport happened.  

Apparently there’s a big difference in training between a medical case worker and a therapist-type clinical social worker, and I had expected the skills of the latter. Aha. That helped explain their more bureaucratic versus client focus.

Well, okay. Things can’t always be the way I’d like, can they?

The deeper trouble came when I volunteered the information that I was planning a 90 minute drive to an adjoining county to visit my daughter for two nights. The social worker needed to know exact dates. I couldn’t say. Dates depended on weather and road conditions over a mountain pass. I didn’t want to drive on ice in fog.

They explained arrangements had to be made for a third party agency to cover hospice services while I was out of my own county. If they couldn’t find another agency, they warned, and I chose to go anyway, my hospice services would be “revoked.”

In essence, I’d be fired from hospice.

I could re-apply and start over with another intake, if qualified, they said. That sounded like a very big, very iffy if. They implied that it was a lot of work for them to scout out a willing cover agency, and they couldn’t guarantee they could find one in a county more rural than mine.

Perhaps, if I was that independent, it was too early for me to be on hospice, they told me. Hearing that turned off any impulse I had left to be candid with this person. The interaction took on an ominous air, from my perspective.

I’m afraid I didn’t react well to this news. It seemed to contradict other hospice staffers who had told me earlier that some clients had gone to Hawaii while on hospice, that travel was no problem.

But the word “revoked” triggered me. It felt punitive.

Worse, once feeling triggered, I also felt like I couldn’t trust telling hospice anything. A year before while on home health services — a similar bureaucracy aimed at restoring independent living rather than helping you die comfortably — I’d gotten summarily terminated by casually commenting that I’d driven myself to the store about four blocks up the street.

In a sense, I was already traumatized by that unexpected punishment, and here a similar instance was getting dangled in front of me, and I was being required to comply.

I may be an over-responsible Capricorn most of the time, but I do have a rebellious streak when pushed. Those who know me, know that.

Long story short, after consulting several level-headed others, the social worker was informed that they were not a good fit for me.

Basically, I fired them. Not from their job with hospice, of course. Just from my case.

At the end of that week, the permanent hospice nurse made a visit, and I had to tell my story for the third time. We got along well, though, and again laughter and smiles filled the more than 90 minute visit.

I was careful with how readily I complained about insignificant aches and pains, though. This nurse was quick to try to argue me, kindly, into accepting pharmaceuticals. He was obligated to do so, he said.

I had to put up with this, I told myself. It was the price of “free” service — free to me, paid by Medicare.

In that moment, I didn’t feel the need for heavy duty drugs. I kind of resented hospice’s protocols that felt to me like they wanted to drug me out of existence.

Later, later, I kept saying. Right then, I was good. Right then, I needed to be able to think and function. I couldn’t do that on morphine. I had already had that experience years ago after a caesarian. One dose knocked me out for days. If the oncologist was right, I didn’t have that many days to waste.

After I got settled in with the highly congenial nurse, the new social worker paid a visit the following Monday. This one had LICSW training, and it was readily apparent. Much more compatible with my own education from when I was a psychotherapist.

Only a few minutes into her visit, I stopped holding my breath. We spoke the same client-centered language. There was almost instant rapport. I let go of my defensive posture. Her first visit lasted 2 hours and covered a lot of emotional ground.

I felt seen. Heard. Understood. As it should be.

She liked my use of the term deadline. I liked her validation of my sense of humor.

Trust in hospice was restored.

© 2025 Deah Curry, All Rights Reserved