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Monday, June 16, 2014

A Brain Tumor Parent’s Perspective on What Makes Good Bedside Manners

By Suzanne Leigh

Letting us know that we're not alone.

Having a child diagnosed with cancer is a wretched, isolating experience. We realize that our doctors are not our friends, but telling us that the medical team is sticking with us throughout this uncertain journey ahead is an empowering message when we are not at our most powerless. 

Showing us that you care about our child, too.

We know that you identify our child by her diagnosis, but we identify her as our daughter. Let us know that you understand our child and tell us something about her personality that will resonate with us. Talk to our child, rather than just to us, as much as feasible. 

Holding off on the scan 'show and tell'.

Some parents want to see the imaging of their child's tumor. I know I did--initially. But with recurrences, seeing evidence of the tumor that I was told would ultimately take my daughter's life was horrifying. Some doctors seemed eager to share the scans--perhaps because it gave them a reprieve from my crumpled, tear-stained face? Ask us first, rather than assume that we want to see it. 

Thinking twice about having junior doctors sit in on an emotional conversation. 

If you have devastating news to break, consider banning residents and fellows from the room, while we contend with the ramifications of what you have to say. When emotions are high and we are at our most vulnerable, we don't want to be politely scrutinized like lab rats--even when it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.

Be accessible by e-mail if you can't make the phone. 

We won't try to "friend" you on Facebook or e-mail you pictures of our cute dog, but some of our questions are best answered by you alone. If our e-mails are short, clear, and seemingly important, please respond, however briefly, even if it's just to acknowledge that we've been heard. When our messages are relayed verbally from nurse to nurse, by the time they reach you, we worry that you have missed the crux of our concern. 

Remembering our child, even if...

If our child is cured, we are bonded to you forever, because you were the one that treated her. If our child dies, we are bonded to you forever, because you were the one that tried to save her. Our relationship with you is paradoxically as intimate as it is distant; you are a member of our family and you are the stranger beside us. We know little about you--we don't the names of your children, what you like do outside of the hospital, where you live--but you've been there in those fist-pumping moments of glory when a scan has been clear, a tumor has been successfully resected or a drug has beaten a stubborn headache. And you've been there when the situation has been dire. You've witnessed us laugh and cheer and you've witnessed us sob. Remember our child; we will always remember you, probably with fondness. Even if our child has died, we recognize that while the disease ultimately triumphed, it was the treatments that failed-not you. 

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