Palliative care: The first conversation

He does not want to talk to me, that much is clear. He has had enough of doctors. He is a man of few words. His eyes do not meet mine. His coarse, calloused farmer’s hands play purposelessly with the starched white of the hospital bed sheet. The gentle hiss of his oxygen is barely heard over the hum of the city traffic below. Out of his element.

“Tell me, what have the doctors told you about your medical condition?”

A useful question. I need to know how much he knows about his cancer. Not just what he knows, but what he doesn’t know and importantly, what he wants to know.

I have three cancers, he tells me. Lung cancer and brain cancer and bone cancer. The treatment isn’t working.  There’s nothing more they can do for me.

A good start. I hit the last bit first. There is always something we can do for you, I say. It’s true, we can’t cure your cancer. But I want to talk to you about the pain you are getting, and the cough. Are there any other symptoms you’d like me to think about? I pick up a few new symptoms  that have not been discussed before; low mood, low appetite, altered taste. He becomes more animated. We discuss treatment options and come up with a plan.

I am under some time pressure as he is to be discharged later today, back to the country, several hours drive away. I have fifteen other patients to see. I need to work fast while appearing to work slow. I elect not to correct him on there being three different cancers as I have other things I want to tackle first.

It’s a big ask for a man without high levels of health literacy and education who has just had shocking news. This is my challenge — to put information into terms that he can understand and remember.  I pull out a piece of paper to summarize what we have talked out as I go.

Sometimes, often, my agenda is different to the patient’s; it’s good to be aware of this. My agenda today is to talk to my patient about dying and end of life care. He will probably not see another specialist in palliative care in the future.

“Are there any other questions you would like to ask me? Anything that’s worrying you that we have not talked about?”

No, he says. Yes, he means. He looks away. I wait. It’s harder than it sounds. I am better at talking and listening than silence. Silence is a tool, I remind myself. I count to ten very slowly.

I would rather not do this now, but I won’t see him again.  Would you like to talk to me about dying?

“I saw my mum die,” he tells me. It was a bad death, with confusion, pain. We talk about his mother’s death. Often, care for the dying is not just about the person, it lives on in memories of those who watched, for decades.

We move on to the specifics of what is likely to happen to him in the next few weeks, the plans to manage his care. Oxygen. Don’t smoke with oxygen.  Medications. Who to call if things go wrong. I reassure him that he should be comfortable, that plans are in place to look after him at home, we will speak to the district nurses and to his family doctor about what he might need. Options for care at home or at the local hospital. We agree he does not want to come back to the city again. He does not want to talk about the actual dying bit so I leave it.  I give him the piece of paper with the summary of what we have talked about, and make the same old joke I always make about my bad handwriting. If you have any other questions or worries, please feel free to ask, I tell him.

“Thanks,” he tells me and his eyes meet mine again. “I really appreciate you talking with me.”

“It was a pleasure, “ I say, and mean it.

Sonia Fullerton is a palliative care physician in Australia and can be reached on Twitter @sonialf.

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