The following essay is the transcript to the most difficult speech I ever gave. This was delivered on the main stage at Stanford’s Medicine X (MedX) on September 18, 2016 while my mother, sister and son watched via live streaming–the only audience that truly mattered. MedX is a place where everyone – patients, doctors, students, professors, pharma and other industry professionals – come together to discuss healthcare and work together to overcome the hurdles we all face.
I was privileged to work with Hugo Campos as my muse, guide, and therapist to elicit the following story. As hard as it was to share, I feel it is important. Through telling my father’s story I was finally able to give myself permission to let go of the guilt I have felt over not speaking up and demanding better care for him.
After stepping off stage and crumbling to a heap, sobbing in the arms of strangers (who are all now dear friends) the first thing I saw on my phone was this text from my son: “I just watched your speech. Really great Mom! I’m so proud of you!!!” That was the digital hug I needed, right when I needed it most.
My live speech was prefaced by the following intro video, graciously produced by the Medicine X team and the brilliant Paul R. Shepard.
(Puppy “Trust” photo credit to my grandfather, Mark Jepson, circa 1948)
“Every time I’d start to recover, it would hit me again. With a progressive disease, you think, ‘This is what it’s like now, what’s it going to be like in 10 years?’ I don’t want to live like this.” – Jeri Burtchell
#MedX 2016 continues Sunday. Watch live between 8 a.m. and 5 p.m. PT and join the conversation: http://medxlive.stanford.edu/
Posted by Stanford Medicine X on Sunday, September 18, 2016
My Healthcare Relationship Status: It’s Complicated
I’ll never forget feeling numb and blindsided, holding Dad’s hand as he died in a hospice bed where his Lazy Boy sat just the day before.
Dad loved his doctor and trusted him completely. So every time he passed blood in his urine and had to be cauterized to stop the bleeding, he never questioned why. Though the cancer diagnosis would come too late, Dad never blamed his doctor for not being more thorough.
But I did. And the guilt of not insisting on a second opinion still stings.
I was in his hospital room the last time he was cauterized, when the doctor came in, barely looking at his chart, in a hurry to leave. Dad said “Hey doc, can you look at my jaw, it hurts me so bad I can’t eat.”
Without moving from the doorway, he just shook his head, “You’re already on so many meds for your TMJ there’s nothing I can do.”
Inside I screamed, “Take your hand off the doorknob and go feel his face!” because Dad’s beard was covering a huge lump.
But I sat silent, intimidated by the doctor’s white coat and knowing how much Dad respected him. I didn’t speak up and I’ll always regret that.
It was small cell carcinoma and we’ll never know if it was that or the bladder cancer that killed him, but the doctor missed them both.
While Dad was in and out of the hospital, I was fighting my own medical battles.
A strange numbness in my feet had spread to my waist and left me unable to walk. After lots of tests I was shocked to learn I have multiple sclerosis, an incurable autoimmune disease.
My neurologist wrote me a prescription without any discussion. He said, “This is the drug I want you on; the others have too many side effects.” I trusted him because he was the one with the degree, not me.
But after nearly a decade, the attacks kept coming. I was miserable, barely able to walk. Numb, weak, and depressed, I fantasized about suicide. It felt like the only way out. Maybe an overdose would be painless…
I was exhausted from fighting a disease that my doctor said was the most aggressive case he’d ever seen. Yet when I mentioned the medicine he insisted “Trust me, it’s working. Without it you’d be so much worse.”
It never occurred to me that I could get a second opinion, or explore my options. And then one day my doctor had a stroke. I had to find someone else.
My new doctor was an investigator for a clinical trial of a new MS medicine and he asked if I was interested in joining. Since I was already considering suicide, what did I have to lose? I felt desperate and signed up.
But that hail Mary pass was the best decision I ever made. My relapses all but stopped. Research gave me my life back.
I find it ironic that the one medical decision I thought would be most risky had the most positive outcome.
And that makes me think about all of the complex factors that go into making our healthcare decisions. But most of all, about trust.
When is it deserved? When is it misplaced?
Healthcare, medicine, and research are words that sound so sterile and abstract. But they all define the human race working together to save ourselves from sickness, suffering, and death.
At every step along our healthcare journey, we have human interaction. The nurse hanging an IV bag, the surgeon wielding the knife, the pharmacist dispensing medicine. We are constantly interacting with–and trusting–others because our lives depend on it.
But how do you know who to trust? That’s the conundrum.
For me, sorting it out had to come from within. I had to look hard at my internal dialog, the assumptions I was making in my head. I had to become more assertive and discerning.
I learned all I could about my health so my gut instincts are backed with knowledge. But in the end knowing who to trust is still a crapshoot for patients. Medical degrees are no guarantee of infallibility, and humans make mistakes. They call it “practicing” for a reason.
Until there is a way to objectively measure trust, the best that patients, caregivers, and family members can do is to arm themselves with knowledge and find the courage to speak up. Because the journey to becoming your own healthcare advocate begins with trusting yourself.