delayed transitions

rainy sceneMy patient died today. Yesterday, from his Intensive Care Unit bed, he decided to prioritize his comfort over prolonging his life by any means necessary. The day before that he was still willing to allow “everything,” though he was writhing in pain. Not quite two years ago, fifty-something year-old Mr. H strolled into the dialysis unit for his first treatment. His kidneys had failed. His chronic back pain was tolerable then, but sitting in the dialysis chair was intolerable for long. An hour or two at most, when his body needed four.

He was like some sort of a modern day Samson, treasuring his head full of hair, ponytail wagging over the middle of his back. Soon he began to complain that his hair was thinning. Coincidence it may have been, but with each loosened strand his strength seemed to leave. By the time he buzz-cut his hair off, he was in a wheelchair, weak and in constant pain, hardly able to stand. Eventually he shaved his head completely as week by week I watched him morph into Skeletor from the neck up and the typical end-stage liver patient from the neck down—his belly swollen with liters of ascites, fluid that used to stay inside his blood vessels. He was dying of liver failure.

It’s hard to watch someone suffering so. Almost as hard as having conversations about “goals of care.” I wished he would just stop showing up. That’s usually what saves us from having those hard conversations. They are just found. Gone. Some Act of God had saved us from ourselves.

I put off talking to him about how rapidly his health was declining and how much he was suffering until two months ago. He looked at me, face squinting in surprise and confusion. He couldn’t see what I saw.

“I’m doing OK,” he’d said, firmly, without blinking.

Then he was in and out of the hospital for various things. To get some antibiotics for the skin infection on his thighs. To get a few liters of the straw-colored fluid drained off his belly. To get a breathing machine tube down his throat when there was too much Oxycodone in his system.

In between hospital stays, I continued to talk with him.

“We don’t have to keep doing things the same,” I’d said. I spoke about easing his suffering. I spoke about options. I spoke about what he could expect.

“I will support you in whatever you choose to do,” I said, lying, because I wanted to say “enough.”

He chose to keep showing up. I watched him cling to dialysis like a man on the edge of a cliff trying to pull himself up over rock, crumbling beneath his hands. If he could just hang on long enough, maybe the rest would get better, he said.

He looked at me. “Do you think I’ll get better, Doc?”

“No, I don’t,” I said softly, honestly, looking into his eyes.

I watched him vacillate through the first four of the five stages of grief as if he was following On Death and Dying like a playbook.

“I’m still here. I’m gonna see this through….”

“If the staff had just followed procedure!...”

“I’m all alone. I don’t know what’s on the other side….”

“I haven’t seen or talked to my kids since they were little….But I have to take their feelings into account before I can make a decision. I want to see them before I die…. These things take time!”

The fifth stage, Acceptance, I never witnessed. The Palliative Care team helped him make that final transition. To my knowledge, no one had requested that they see Mr. H in any of the prior admissions. “He’s not ready for that,” I was told. While, palliative care is intended to help ease symptoms throughout the course of an illness, most still equate “Palliative Care” with “Giving Up” and “Death.”

The Palliative Care team eased Mr. H’s suffering. First mind, then body.

I asked them how I could have done it better. How I could have helped him through his fear of death. His fear of letting go of dialysis.

It just takes time, they told me. It takes time for a person to come to terms with the fact that they are dying, they said. They have to reach that point of “enough.” Enough tubes. Enough needles. Enough suffering.

I’m glad Mr. H was able to get to Acceptance and out of pain before he died. I’m saddened that dialysis delayed his getting there, extended his suffering.

It was my order that started his dialysis not quite two years ago. But it was not my order to take away, was it? It was Mr. H’s, right? He was of sound mind. Right?