In the middle of the night, in Florida, sitting up with a gravely ill family member who had wanted to die at home, we became worried about how hard it was getting for him to breathe. It was painful to listen to — was it painful for him? We’d been giving him morphine for several days under a hospice protocol, but was there anything more we could or should be doing? We never got the chance to fully ask these questions. When we called the 24-hour hospice number, the person who answered the phone said, sharply, “Wait — you’re giving him how much morphine? Who told you to give him that much?”
We explained that a hospice nurse had come out to the house earlier in the day and written new orders to increase the dosage, after speaking in our presence to a doctor over the phone.
“Who was this nurse?” the hospice person asked.
We gave her the nurse’s first name, which was all we could remember.
“I don’t know anybody by that name,” she said, still in the same sharp tone. “And I don’t see these orders written anywhere on the chart.”
It was midnight. We were at home with a dying person, and the hospice staffer seemed to be suggesting that we were screwing up, giving him way too much morphine, on the orders of some rogue hospice worker whom she’d never heard of.
We stayed on the phone with her for several more minutes. We kept repeating the instructions we had been given, and she kept saying that she had no record of the nurse, the visit, or the instructions. Finally, feeling that we were wasting our energy and getting nowhere, we hung up on her.
The dying man’s breathing — even with the morphine, even with the Ativan — continued to be labored and wet. We moistened his lips, took turns sitting with him, listened. At 4 a.m. he died.
I was furious at hospice. “Hospice,” I say, as if the entire hospice system, the entire concept, the premise and the promise, were at fault. In fact, our family has had two deeply good experiences with hospice in the past, and the care we’d been receiving from this particular team — employees of a reputable nonprofit hospice provider — had been excellent up until that night.
Now, several months later, I think I understand better what happened during that phone call. The staffer’s “You’re giving him how much morphine?” didn’t mean she thought we were giving him too much, it meant that the dosage we were giving didn’t tally with the most recent paperwork she had in front of her. The problem was clerical, not medical; but she was too wrapped up in procedure to see that, and we were too frightened and confused to understand it.
But isn’t help with fear and confusion part of what you need from hospice? You’re alone with a dying person in the middle of the night, alone with a box full of powerful medicine and some instructions about when and how to administer it. You feel like you’re in way, way over your head.
We knew that what we were doing was OK. Two different nurses had told us, at different times in the last couple of days, what the maximum morphine dosage was, and we were still within that allowable maximum. We weren’t looking for medical advice. We were looking for help sorting out whether the dying person was in a pain that we could do something about, or whether what we were seeing was the inevitable process of dying, and the pain was ours, the inescapable pain of watching death and being unable to stop it.
Thinking back on that conversation, I wish we’d gotten a different person when we called hospice that night. I wish that instead of someone who met our panic with panic, and made us scared, in an already scary moment, that what we were doing wasn’t right, we’d reached someone who could have helped us navigate the moment we were in. I wish she’d had the training and compassion and imagination to say, “OK, listen, I don’t have the paperwork in front of me, but that’s something for me to sort out later. Tell me more about what’s going on right now. What exactly is it that you have questions about? And how can I help?”
Joan Wickersham’s column appears regularly in the Globe.