BY KAREN PURZE | Special to Life Matters Media
“I think it’s time to consider hospice,” I tell my dad. “But I’m not dying,” he says.
In my head, I sigh — because it is clear to everyone that he is quickly nearing the end of his life.
His cancer can’t be treated, and he spent his summer in and out of the hospital with infections. His phone blinks and beeps like a casino with the reminders he sets for himself to track an increasingly complicated care regimen. He is too weak to safely shower. He needs help.
Finally, I realize he doesn’t say it because he thinks he is going to beat metastatic cancer (though he has never thought averages apply to him because he has never been “average”). He rejects the idea because he thinks of hospice as only for “the end,” or for the last few days. Once he agrees to start the services, he envisions immediate incapacitation with a morphine drip. He thinks his friends will stop calling.
The first hospice education I had came from the 2010 article “Letting Go” by Atul Gawande in The New Yorker. He wrote it long before his famous best selling book, Being Mortal, and well before anyone in my family was dying. Still, it had a profound effect on me.
Gawande makes the case that our advancing ability to treat illness and extend life is changing the way people die, and not always for the better. It made me realize that just as we choose how to live, we need to be careful and deliberate in expressing how we want to die.
While the article gave me a different vision of hospice and end of life care, I didn’t need to apply anything I had learned for more than five years. Now it was time.
I knew if my dad talked to his doctor, he could get the extra help needed to manage his care at home. We would have an alternative to arguing if he showed signs of another infection. Rather than fight about going to the hospital, we could call the hospice nurse.
My dad ended the conversation, as he had many others, with, “I’m not sure I’m ready for all that. We’ll see what the doctor says.”
Once he agrees to start the services, he envisions immediate incapacitation with a morphine drip. He thinks his friends will stop calling.
All of us loved his oncologist. She never rushed us, and she always looked us in the eyes whether the news was good or bad. She remembered things we told her (though I have no idea how). I knew that whatever she said would be it. So I cheated. I called her ahead of his next appointment and asked her to broach the topic. I let her know that we were open to the discussion, and that my dad was hesitant. I asked her to explain all that hospice entailed. I wasn’t trying to push him. I was trying to explore the idea with him through someone whose every word he hung on.
The conversation ended with his noncommittal agreement to meet with a hospice organization. His doctor said she would write the order if and when my dad was ready. The hospice agency explained that he could bow out at any time, and in the meantime, they would manage his medications and supplies. They would also help him bathe, and address any issues that arose — at no cost to him.
I don’t really know what convinced him. It could have been the “free” help, the idea of not going back to the hospital, or the fact that he could drop out if he had a miraculous recovery. Maybe there was a voice in the back of his head that he wouldn’t admit was there, telling him it was time. Whatever it was, he signed up.
In the end, my dad never needed to be ready or truly convinced, he just needed to try it. He lived on hospice for eight months, and I’m sure he would have died sooner if he hadn’t started hospice “early.”
Karen Purze is the author of Life In Motion: A Guide for Gathering Life’s Vital Information. She blogs at lifeinmotionguide.com, and can be followed on Facebook @lifeinmotionguide for a steady stream of tips on personal organization designed to encourage action.