Human Exceptionalism

Not Telling Patients When Their Time Has Come

Apparently many doctors don’t tell cancer patients when they enter the terminal stage of the disease. From the story:

Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care. Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.

The story proceeds to inaccurately describe AB 2747 as being about making sure people are told when they are dying when its real purpose is to open the door to backdoor assisted suicide via dehydration and terminal sedation, and thereby corrupt palliative care properly understood. Also, the bill defines terminal illness as one year to live–a time so far out that a doctor could be wildly inaccurate. But I have discussed that bill, its ultimate purpose, and media ignorance and biases before–and will again. So, for now, let’s focus on the primary thrust of the story.

This is a sensitive issue, but patients deserve the truth without taking away hope in the understanding that there are few sure things in life–even with cancer. My dad’s doctor told me and I told him–which for us was a very good way to go because we were so tight. His cancer was terminal but there was a small chance for life extenstion with chemo. Dad took the option and had a very good year as a result–which the doctor had not expected–during which he traveled and enjoyed life. We put him into hospice as he entered his final few months of decline.

An even better example: A friend of mine had a seizure. It was caused by lung cancer that had metastasized to the brain. The cancer was inoperable other than to remove the lung. He was told he had 3 months to live–eight years ago. He lived because he took every aggressive measure he could–and he believes, because of a whole lot of prayer.

On the other hand, as the story notes, not being candid impedes the patient from receiving proper hospice care opportunities. Indeed, I have another friend who did not get into hospice until two weeks before he died because the doctor refused to tell him it was in a terminal stage–and he only got into hospice after his wife forced a proper referral after I threw a fit about the unalleviated pain he was in.

Part of the problem, I think, is our hospice system. For those of us in the USA, hospice is often perceived as a kind of “abandon hope all ye who enter here” matter because in order to receive the services, patients must eschew all curative and most life sustaining treatment. When I interviewed Dame Cicely Saunders, the founder of modern hospice, she told me that was a profound weakness of the American system. In the UK, such a choice does not have to be made and people more readily enter hospice care knowing that if they want that last shot of chemo, they can have it (leaving aside for the moment, the problems with the NHS).

If we want more people in hospice, if we want to give them hope while still being able to care for them best when they are dying, a good way would be to change our hospice approach. Then perhaps doctors would be less reticent to tell patients that it looks like their time has come.