My Husband Died From Brain Cancer. Johns Hopkins Medicine Should Be Ashamed, Not Me.
On May 27, 2015, my brilliant and beloved 58-year old husband, Bruce Israel died from brain cancer that had been diagnosed a scant ten months earlier — scarcely three-weeks after a return from an overseas family vacation to celebrate our older daughter’s high school graduation. The discovery of my husband’s tumor — lodged deep in his mid-brain stem — was heralded by a week of mysterious double vision, blazing headaches, vertigo and eventually loss of speech -all signs of severe hydrocephalus that caused by the three-centimeter mass blocking his third ventricle. Because the tumor presented itself with heightened urgency — a shunt was needed to drain excess fluid and staunch the swelling in my husband’s brain — there was no time to do anything but locate a skilled neurosurgeon who wasn’t on vacation and could operate without delay. The shunt successfully abated my husband’s symptoms, but the biopsy, which was also part of the surgery also revealed an aggressive glioma that couldn’t be removed, only treated.
By that time, about a week had passed since my husband’s diagnosis, and I was still in a state of panic; trying to absorb the news that my husband’s life would be cut brutally short, while figuring out how to find the time to care for my husband while doubling my law firm’s revenue to replace my husband’s lost income, getting my daughter up to college for the start of her freshman year the following week. So while I did some online research to get an overview of the brain cancer terrain, I just couldn’t find the time for exhaustive research or the resources to fly my husband around the country in search of top experts. Instead, I settled on the proverbial boy next door — Johns Hopkins Medicine — an institution that holds itself out on its website as a leader in advanced brain cancer treatment, that garnered glowing reviews from area doctors, that could treat my husband at convenient local outposts at Sibley and Suburban Hospital, a few miles from our home — and that ultimately, utterly and completely failed my husband on so many levels.
Among other things, Johns Hopkins Medicine relied on its own, rudimentary in-house tests to evaluate the tumor’s pathology rather than FDA-approved procedures that are more granular and would have identified critical biomarkers. In turn, this information would have informed my husband’s diagnosis and treatment, since biomarkers can predict the likely success of radiation and chemotherapy. Based on the information that I’ve managed to piece together since my husband’s death, it was fairly likely at the outset that neither radiation nor chemo would have much success against his tumor (an outcome corroborated by the actual clinical results). Had Hopkins gathered and used this information as a basis for treatment, I would have pressed for other emerging treatments (such as the Optune Cap), Avastin or other measures more suitable for his genetic makeup. Instead, the radiation and chemo that he was subjected to took a toll on his cognitive ability and weakened him and hastened his demise.
Johns Hopkins also promised, but never delivered “Hopkins-caliber” treatment at locations like Sibley and Suburban hopsitals convenient to our home. But what Hopkins never told us is that my husband’s Hopkins neuro-oncologist, based out of the Baltimore mothership and most familiar with its procedures, would be hamstrung in his ability to treat my husband onsite at Sibley, when he couldn’t seamlessly order MRIs or view certain records. Nor did Hopkins tell us that our neuro-oncologists’ schedulers at Sibley lacked access to his calendar in Baltimore; when my husband’s health declined precipitously and I begged the scheduler for an appointment with our neuro-oncologist in Baltimore, she was unable to make it happen. Worst of all, when I had no choice but to bring my husband to the emergency room at the Hopkins hospital where my husband had his original surgery, his neuro-oncologist could not even visit or treat him there because Hopkins had not, and would not grant him privileges at Suburban, a Hopkins-owned facility. As a result, I spent the final ten days of my husband’s life pleading (unsuccessfully) with a palliative care doctor who didn’t feel that any additional treatment was appropriate instead of having the ability to devise a plan with his neuro-oncologist.
Of course, I tried to voice my concerns during my husband’s treatment at Johns Hopkins. I emailed relentlessly, including six emails and two phone calls to patient relations that went unanswered. I tried again to reach out to the Johns Hopkins Patient Advocate three more times after my husband’s death just for a sense of closure. Yet after all this time, no one from Hopkins has either explained or apologized why my complaints went unaddressed and why my husband’s neuro-oncologist was denied privileges.
In the almost fourteen months since my husband’s passing, I’ve not shared my full experience publicly. My silence stemmed partly out of concern for my family’s privacy but largely because of my own feelings of embarrassment and shame at not having done more. Despite having excellent (and costly) health insurance coverage, I felt ashamed that I wasn’t able to secure better care for my husband. And despite considering myself a highly educated and resourceful person, I felt ashamed for not having really hunkered down and committed myself to understanding the medical literature and chasing experts in search of better treatment as others have successfully done.
Likewise, while I advocated for my husband, I didn’t go far enough. I felt ashamed that I never had one of those “Shirley McLaine/Terms of Endearment moments where she screams and shrieks at the nurses until they deliver pain medication to her cancer-ridden daughter played by Debra Winger.
Sure, I sent emails, I made phone calls but I should have planted myself outside my husband’s hospital room and demanded that Hopkins permit my husband’s Hopkins neuro-oncologist visit and treat my husband at a Hopkins-owned hospital.
For fifteen months, I’ve lived with this embarrassment and shame. The shame rears its head in recurring dreams, where I see myself reaching back, desperately clutching at my husband’s hospital gown to pull myself back to him and to a point where I could do things differently. The shame taunts me each time I read of a new advancement in brain cancer that my husband might have availed himself of if he’d have lived just a few months longer. Most of all, the shame catches in my throat and chokes me up each time I reminisce about my marriage and how my husband had my back in every single way and yet I didn’t have his at a time when he needed me most.
Fifteen months is a long time to labor under the weight of shame — but it’s also enough time for the light of reason to poke through. And what I’ve realized is (duh!) that I have no reason to be ashamed; instead, it’s Johns Hopkins Medical that should be ashamed of itself. Maybe I could have interviewed more experts before settling on Johns Hopkins for treatment. But I certainly didn’t do anything wrong or act imprudently by putting my husband’s care in the hands of a hospital that boasts about its expertise and cutting edge brain cancer treatment on its web page.
Maybe I should have educated myself more extensively on on brain tumor molecular markers and their role in prognosis, but I’m not a doctor or a cancer researcher. Instead, it was Johns Hopkins’ Medicine’s job to use FDA-approved tests for biomarkers that are the standard of care at places like MD Anderson and Sloan Kettering and the numerous other bonafide cancer treatment centers around the county.
And yes, maybe I should have pulled a Shirley McClaine and screamed my head off until Johns Hopkins would allow my neuro-oncologist privileges to visit my husband at the hospital. But I shouldn’t have had to throw a tantrum when to persuade a medical facility that lured my husband for treatment with promises of “convenient care” to grant one of its own doctors privileges at one of its own hospitals to treat one of its own patients.
Moreover, even though my husband had terminal brain cancer and his life would certainly be cut short, I am not embarrassed or ashamed or somehow in denial to have expected better treatment than we received. Even though my husband wasn’t expected to live long, that didn’t give Johns Hopkins the right to give up on him without even trying. That’s particularly true at a time when medicine is advancing at the speed of light, and extending a patients’ life by even three or four months can give them access to treatments that weren’t available before. Had my husband lived another month, he could have easily accessed the Optune cap which by then, had been FDA approved. Or he might have been able to qualify for laser ablation , a minimally invasive surgery that might have debulked his otherwise inoperable tumor.
Fourteen months later, I finally realize that I did not fail my husband, Johns Hopkins Medicine did. What’s more, I also realize that establishments like Johns Hopkins and other medical providers count on our shame to keep us silent so that they can evade accountability for their malfeasance. So hear this, Johns Hopkins Medicine: my husband died in your care, you should be ashamed of yourself. I will not be silent any longer.
