The View From Your Sick Bed

by Patrick Appel

A reader writes:

I read with interest possible provisions in heath care reform for end of life counseling that the far right are labeling as death panels.  My mother died just over two years ago at the age of 70 from glioblastoma  -- incurable brain cancer.  Average life expectancy is around 12 months after diagnosis; she lived 16 months.  All treatments are considered palliative, except perhaps for experimental treatments.  She had excellent insurance through state government retirement that supplemented Medicare.  Together they paid for two brain surgeries, oral chemo treatment for more than a year, six weeks of radiation, a short stint in a rehab facility, hugely expensive anti-nausea medicine, and ultimately hospice.  I was never more thankful for the insurance than when I went to a pharmacy one night and  picked up a prescription for anti-nausea pills that were listed as more than $1000 -- but all we paid was $50.  The total cost of her treatments?  I'd estimate easily over $250,000 and perhaps much more.  What did the treatments provide considering the cancer was incurable? 

The  first surgery and radiation improved her quality of life immensely.  She went from being partially paralyzed to being able to ride her bicycle again (she was a lifelong cyclist who cycled from California to Florida when she was 60) a few months later. Those treatments brought her back close to normalcy for about 8 months.    She had a glorious summer to reconnect with family and friends and even travelled out West, her original home.  However, the second surgery in October to remove the tumor that'd grown back, as we knew it inevitably would, improved almost nothing.  She rebounded for about two weeks and then quickly declined.  The last day she got out of bed was Christmas and three months later she passed away.  During the current debate  I think about why she and by extension we, the family, elected for the second surgery, which cost around $60,000.  At the time the neurosurgeon said he thought he could improve things and that seemed like enough.  We didn't ask a lot of questions, frankly.  Would we have made a different  decision if she'd had end of life counseling?  Maybe.

Now that I can think about the situation more detachedly, the second surgery was certainly not a wise use of our nation's health care resources.   But of course when there are options to extend life we tend to grasp at them.  And when families are in the midst of terminal illnesses, thinking about wise allocation of resources is not a priority.  We should all think and talk about end of life decisions before illness strikes and a lot could be done by the health care community to give us frameworks and tools to help make informed decisions.  Finally, doctors need to be frank with patients and their families about what end of life treatments will really provide.  Some, I'm sure, do, but ours didn't.  My gut tells me the surgeon knew the last surgery wouldn't provide much benefit but offered it because that's what he does.  With a few signals from him and, yes, end of life counseling, she might have decided differently.