Full Comfort Care

The hospitalist called at 12:09 AM. Lonna's blood pressure had dropped, her glucose had fallen to 40, and they were doing some things to prop her up. I knew I'd be getting another call.

The next call came at 1:49 AM. Full comfort care.

Those were the words I was looking for.

I drove to Ascension Seton in Austin. I'd left the hospital at 8:30 PM to go home and sleep, planning an early start. The early start arrived earlier than expected. By 2 AM I was in her room. She was communicative, in the way you can only communicate at that point. Her breaths were short and quick. The morphine started after I arrived — administered from a locked clear box that required two staff signatures to open. Even at 2 AM, at the end of a life, the bureaucracy of controlled substances runs on schedule.

I want to be careful here. “Full comfort care” sounds soft. The phrase has the shape of something gentle. But it is a clinical handoff, and what it means in practice is that the medical team stops trying to fix anything and starts trying to make sure the person is not in pain while their body finishes the work of dying. Morphine titrated up. No more interventions. No more scans, no more sticks, no more arguments about whether to do the procedure. The fight is over. The job is comfort.

Most caregivers don't know this is a phrase that exists until somebody says it to them on the phone in the middle of the night. I want you to know it exists. I want you to know what you're agreeing to. And I want you to know how we got there, because the medicine of it matters.

I also want to tell you about January, because July makes no sense without it.

Six months before she died, Lonna ended up in the ER with numbers far worse than anything we saw in July. Her kidneys had essentially stopped. The staff genuinely believed they were watching someone die. They put her on full comfort care. And then I asked them to rerun the labs. The numbers came back trending normal. We reversed the full comfort care. Her kidneys recovered over the following weeks. The staff called it a miracle. I called it paying attention.

So when July came, I already knew what those words meant. I had said yes to them once and then said wait — not yet. The second time I said yes and meant it. That is the difference between conviction and certainty. January was conviction with an asterisk. July had no asterisk left.

Lonna had been to the ER three times in the previous four weeks. In retrospect I can see she had been fading for longer than that — I wrote as much in my journal in the weeks before. She didn't want to go to the hospital that last time. She was ready to let it be. I wanted to try one more time, to see if this was fixable. That is the most human thing a caregiver can say and I am not ashamed of it. She went. We tried.

This last admission kept finding new problems. Bilateral DVTs. Rectal bleeding. Hemoglobin low enough for three transfusions. Creatinine climbing. Renal function worsening to the point of no urine output. Ascites and edema we could no longer control. She was coughing up blood, probably from a stomach wound. They wanted to intubate for an endoscopy to find the bleed. Instead we used PPIs — proton pump inhibitors — to stop the bleeding. It worked. We bought some time without crossing the line. But the kidneys weren't recovering the way they had in January. The trend was different. The body was telling a different story this time.

We said no to the intubation because of the redlines.

Lonna and I had built the redlines over years. There was no single conversation. They emerged out of doctor visits and ICU stays and the slow accumulation of evidence about what kind of life she wanted and what kind of suffering she wasn't willing to trade for more time. By the time we walked into Ascension Seton that final week, there was no ambiguity. No intubation. No dialysis. No more transplants.

The redlines were not commandments. They were tolerances with context. The intubation redline was originally drawn for pulmonary reasons. This question was GI. So maybe, if everything else had been fine. But everything else was not fine. If the kidneys had been working, I might have agreed to more. They weren't, so I didn't.

She was conscious for these decisions and she was with me on every one of them.

What I want you to know about Lonna is that she stayed curious. Right to the end. She had always been curious — about everything, all the time — and her dying didn't change that. It just gave her new things to wonder about.

In the days before, drifting between sleep and waking, she told me she thought she had a baby. I didn't know what to do with that at the time. Now I wonder if she was channeling something she somehow knew was coming — Brian and Carolina were expecting. Lonna would not meet that grandchild, and yet there she was, in a hospital bed, with a baby on her mind.

She asked me what happens to the movies. We had a queue — shows we were going to watch, movies we'd been saving. She wanted to know what happened to them when she was gone. Not metaphorically. Literally. The list. What happens to the list?

I still don't have a good answer. All these months later I find it near impossible to watch TV just for fun. Sports is fine. But the shows we loved together — I can't. The movies are still on pause. In some way her question answered itself.

She asked what it would be like that she would no longer age, but the rest of us would. She would stay 63. Brian would keep getting older. The grandchild she sensed would grow up. She was thinking through, out loud, what it means to step out of time while everyone you love stays inside it. That was an engineer's question. That was Lonna.

The day before she died, I wanted to record the way we said goodnight every night. I set up the audio and told her, “You know how we say goodnight? I say good night Lonna and you say good night Casey. Let's do that.”

I said good night Lonna.

She said good night Lonna.

I asked her to try again. This time she said good night Brian. I was laughing. I told her no, that's not it. We waited a while and tried again and she got it right. I have all of it. The whole sequence. They are cherished artifacts now — the goodnight that was almost goodbye to herself, the goodnight that was almost goodbye to our son, and the one that finally landed where she meant it.

I had conviction, not certainty. Those are different things, and anyone who tells you they had certainty is either lying or didn't pay close enough attention.

What I held onto was something Lonna had told me earlier in this same admission. I asked her what a good day would start with. She told me a good day starts without all this shit hooked up to her.

That was the answer. She had already given it to me. By the time the 1:49 call came, I wasn't deciding what she would have wanted. I was executing what she had already told me, supported by her in the bed, with her body telling the same story her words had.

Here is what nobody prepares you for about full comfort care.

It is, in its way, beautiful. End-of-life hospice work is done by people who are extraordinarily good at it, and they are calm in a way that is almost startling. The charge nurse at 3:50 AM — a quiet, steady man — walked me through what was going to happen in the next few hours. Short quick breaths. The morphine going up. The medical examiner sign-off. They asked me which funeral home. They brought me a basket of snacks in case I got hungry. The room was dark and quiet. The fight was over and what was left was care.

It is also clinical. There is paperwork. There are questions you have to answer when you cannot think. There is a timeline the charge nurse will give you — he told me he thought it would be around 7 or 8 AM — and he will also tell you it is not a scientific process. Both things are true.

Lonna died at 6:49 AM on July 29. She was comfortable. She was ready. I was ready. I sat with my best friend, my partner of more than 45 years, and we were together in silence the way we had been together for most of our lives. The fight was over. The care was complete.

I can only hope that in my final hours I have an advocate as compassionate as the one she had. And I hope, if you ever find yourself on a phone call at 1:49 AM, that you recognize the words when they come.

Casey King spent over two decades as a caregiver for his wife Lonna, who lived with scleroderma and underwent a double lung transplant in 2023. He is writing The Caregiver's Trap: A Roadmap for When the Caregiver Needs Care.

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