Thursday, April 16, 2009

JCO on hope & truth-telling

It seems that some of the best 'conversations' in journals right now about cancer communication are happening in the Art of Oncology section of Journal of Clinical Oncology. A recent issue had another discussion about hope and truth-telling, relating a story of a young woman dying of cancer. The patient wouldn't engage with the oncologist about what was really happening, the patient's family negotiated essentially a 'don't ask don't tell' approach, and so:

I arrived at her house late in the afternoon. Her husband and son were waiting at the doorstep, looking distressed, with tearful eyes. I went to her room on the first floor. She was lying in bed, receiving an intravenous infusion. She welcomed me with a big smile and said, "Doctor, do you believe this chemotherapy will work?" At first I thought she was confused, but then her sister whispered to me, "It's only folic acid in normal saline, but she believes it's chemotherapy." Not really knowing what to do, and almost against my will, I could not help saying, "I hope so." Two days later, her sister informed me that she had died quietly, in a drowsy state. "She was peaceful."
Was this an OK thing to do? The authors more or less conclude that, in this situation, it was: not disclosing the truth helped this patient die peacefully, as she was someone for whom hope was exclusively wrapped up in hoping for a cure. Anything else would have led to despair. There are many issues here, but to me a key one is that despite 'the truth' never being explicitly stated, and the patient apparently being deceived into thinking she was receiving chemotherapy, this is a situation in which the patient nevertheless was provided a good death, at home, peaceful - and that her family which colluded in her deception as it were also ensured she died 'well.'

To look at it another way, the patient deferred decision making as well as informational control to her family who as far as you can tell from the case description made wise, patient-centered, and compassionate decisions for her (ignoring for the time being whether one thinks actively deceiving the patient is moral). That is, the patient didn't particularly need to know what was going on, insofar as she had ceded control of her care to her family. One gets the sense that she deliberately 'closed her eyes' to what was going on, turned away as she drifted away, and let her family do it all. This is not a situation in which a refusal to talk about 'the truth' was occurring in a context of requesting unreasonable treatments.

I personally think some collusion like this can be the right thing to do, and in fact I think we all collude to withhold the bare truth from our patients regularly, and my own standard is that it all depends on what the patient wants to know (I ask) and needs to know in order to make whatever decisions need to be made. This is an extreme example of that, which doesn't change the fact that most patients, most of the time, want to know most things (Big Picture-wise), and are often grateful to hear it as it often hasn't been stated in a clear, understandable way.

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