Brain Cancer Awareness Month

Watching “60 Minutes” last week reminded me of why I pursued a degree in bioethics. The segment was on Duke University’s experimental treatment of glioblastoma patients and its surprising success treating this deadly cancer. There is a cautious optimism associated with this new treatment, which was granted “breakthrough status” by the FDA earlier this month.

Immediately I was thrown back to 2010 when my wife’s nephew Michael was diagnosed with a grade IV glioblastoma. I didn’t know much about it at the time, but it didn’t take long to discover how deadly it was. He went through the typical regimen of treatment—chemo, radiation, and surgery. His life was extended about a year and a half. He was diagnosed at age 16; he died just weeks after his 18th birthday.

Ethics became important to me because I saw firsthand how Michael and his parents were treated during his final hospital stay. Of course, there was a lot of compassion and concern for him as a young man with a terminal disease. However, even though the medical staff knew the prognosis and the likely disease trajectory, they didn’t do a good job of communicating things. At the very end, when the cancer mercilessly returned, some staff members placed a lot of pressure on his parents to sign EOL orders. Because they had thought the treatment had cured him, all of this was a shock to them. They were unprepared to have a DNR order placed. Eventually the point was moot. The tumor continued growing, his brain herniated, and he died.

During those painful last few weeks of his life, one of his nurses told us that some of the staff had considered calling for an ethics consult, but didn’t. EOL treatment is messy and complicated. Looking back at the time, it seems clear that ethics should have been involved to do its work—gather information, hear from medical staff and family, and make recommendations based on the patient’s desires.

Although I am very happy to see that the Duke trial has met with some success, I wish it had come a few years earlier. May is “Brain Tumor Awareness Month”. Let’s remember those who struggle with brain cancer and those who are seeking to find more effective treatments for this horrible disease. And for those who are concerned with ethics, let us make sure to hear the voices of those who can be easily overlooked.

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David Smith
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David Smith

Your family’s pain with Michael’s illness is shared by those of us who deal with situations like his daily. I, too, have an MA in bioethics, but that good degree doesn’t equip you for effectively handling situations like his. The issues were not ethics as much as the need for quality palliative take care. Palliative medicine should have part of his care from the time of diagnosis throughout his continuum of care, and extending into family’s time of bereavement.

Neil Skjoldal
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Neil Skjoldal

David: Thanks for your comment. You are correct–quality palliative care would have made a positive difference. My post should have noted its absence in this situation.

David Smith
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David Smith

Error above–“for quality palliative care” (not take care)