Does Brittany Maynard’s decision affect the future of oncology?

brittany-maynard

Would you base a life or death decision based on one doctor’s opinion? One research article? Google searches? What would it take?

I recently read that Brittany Maynard took her own life. Plagued by glioblastoma, she chose to reject chemotherapy, radiation, and hospice. Tomorrow, I have a schedule packed with glioblastoma patients who personify courage, determination, and faith.

Glioblastoma (GBM) is a primary brain cancer that spreads along the “glue” of the brain, destroying healthy brain and stealing function as it grows. It is one of the worst diagnoses in all of oncology to receive, as it is always terminal. As a neuro-oncologist, it is my “bread and butter” disease.

As I have followed her story, I have so many questions. I wonder what she was told by her doctors. She states that she visited with “many experts.”

Yes, GBM is a terminal illness. Yes, GBM is a terrible disease filled with suffering. But it is a diverse disease. Depending on which part of the brain is affected, patients may have minor or major neurologic deficits. As an outsider looking in, Brittany appeared to have no paralysis, muscle weakness, or language issues. A rapidly growing brain tumor usually causes at least one of these problems. I can’t seem to resolve this dichotomy between the pictures painted by her words and the pictures shared of her at the Grand Canyon.

Also, as physicians, we are often wrong when asked the dreaded “how long do I have to live” question. If you corner an oncologist, the most honest one will tell you they don’t know. Many will quote “six months or less” for most stage IV or grade IV cancers. Often, this answer is based less on evidence and more on the need to end a difficult conversation. Each individual’s course is so different with cancer. We are particularly poor at predicting survival for young patients. Just because a study showed a median overall survival value, it doesn’t always apply. For glioblastoma, we know that age and neurologic function matter. She appeared to have both on her side.

And, more importantly, how much time did her doctors spend with her? In an era where physician visits grow shorter and shorter, were they watching the clock or the patient? Was she being squeezed in for a consultation? Did they know the impact of their words would be so large? Did Brittany know the truth about chemotherapy and radiation for this disease, as the side effects are vastly different than those from the omnipresent breast cancer? Was she cognitively impaired by her illness, and did she fully understand? Was she worried about disappointing those who viewed her as a role model for assisted suicide?

I know nothing of her case, but I know this: I have seen people live for years with treatment. And the end is hard, but not usually painful. Suffering can always be diminished with properly trained physicians and nurses. Brain tumor patients require and deserve every resource available. The families that I have cared for have been remarkably grateful for the extra time I have spent with them, discussing death, palliation, and faith. In this field, it is not only necessary but essential.

I fear that more cancer patients will seek out assisted suicide as an option due to fear of the unknown. Many will have a myopic view of their cancer or therapy options due to misinformation from their care teams or the Internet. Their decisions may be colored by the fear of death and dying that pervades our society. Is this where oncology is headed? I pray not.

Ashley Sumrall is a neuro-oncologist.

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