Are We Measuring Correctly? | Erin Stevens, MD
Metrics are becoming very important in the treatment of cancer. As physicians, we want to know that all patients are being given the correct treatments for their disease. We can measure this by using databases and codes. Nationwide, we use these metrics as a way to tell us how far we have to go get all patients to receive the standard of care. We also have metrics on end of life care and things we should avoid with our cancer patients, including hospital admissions and chemotherapy in the last two weeks of life. But sometimes numbers do not tell the whole story.
I met Maggie* at the beginning of December. She had been diagnosed with a recurrent uterine leiomyosarcoma and her admission to the hospital was prompted by a newly diagnosed pulmonary embolism. She had not yet started treatment when I entered her room. She was with one of her two sons and his wife. She didn’t look “sick” per se – she didn’t particularly look “well” either – and I thought it would be an appropriate time to sit and have a conversation.
Over the course of about an hour, my PA and I sat with Maggie and we listened to her tell us what she understood about her cancer and her prognosis. We discussed the treatment options and the risks and benefits of each of these options. She understood her cancer was not curable. She was given the information about Five Wishes and we visited about what things she would want at the end of her life. And then I asked her the question I always try to ask my patients when I’m faced with a cancer that I know is not curable.
“What are the things that you’ve always wanted to do but haven’t yet? Is there a trip you’d like to take, a place you’d like to see, a person you want to make amends with?”
Unbeknownst to me, before I had entered the room, her son and daughter-in-law were helping her make a bucket list. At the top of the list was Germany. Turns out, Maggie had always wanted to go to Germany. And she loved Christmastime. Unbeknownst to Maggie, the two loving people sitting at her bedside had already finagled a passport for her that had just arrived earlier that week. They looked at me and asked permission to take her to Germany. I looked at them and told them to go – and to go now – while she was “well.” Maggie was concerned about her other son who lived farther away and wanted her to get started immediately on the treatment. I spoke with him, explained that her cancer was not curable, and highly recommended letting her going to Germany if that was what her mother wanted. Ultimately, the other son wanted to do whatever his mom wanted, but he really wanted her to try chemotherapy if it could possibly help, regardless of how slim that chance was.
So Maggie went to Germany the following week. She showed up in my office a few days after she returned with pictures of her trip, ready to start chemotherapy. It was already obvious that she had weakened immensely. She required help with her activities of daily living and was using a walker in her house, two things that were bothering her immensely. We revisited whether or not she should go forward with chemotherapy at all.
You could tell she wanted to treat both of her sons equally. She had gone to Germany with one; the other wanted her to try chemotherapy. She loved both of them, differently but equally, and you could tell she was determined to start treatment. She got her first cycle of Day 1 gemcitabine and by the end of the week, was admitted to the hospital with severe anemia, renal failure and poorly controlled pain.
If she does die in the next week, I have failed as a physician, according to the “metrics” of giving a patient chemotherapy in the last two weeks of life. Yet I look at this woman who took a trip of a lifetime with one son she loved and showed her other son how much she loved him by trying treatment. I don’t see a failure here, I see a success. She had done what was best to balance the love of her two children and I think she did everything right, even if that’s not the story the statistics ultimately show.
Sometimes the numbers don’t tell the whole story.
Maggie passed away on Jan. 4, 2014, with her family at her side.
* Names changed for privacy