Why I Am Suing Johns Hopkins Hospital for Medical Malpractice In Treating My Husband’s Brain Tumor

Back when I became pregnant with my older daughter — impossibly, two decades ago now — I had monthly appointments with my obstetrician for the first eight months. During the final month of my pregnancy, the appointments increased to weekly, and by the time I reached my 42nd week (you read that right — my daughter was two weeks overdue!), I had three sonograms in the space of seven days, with the last one just two days before I was admitted to the hospital and induced. My obstetrician checked in on me early in the day, and that night, after 15 hours of labor, another doctor from the practice (whom I’d seen once or twice) delivered my daughter. The same pattern followed for my second daughter, except this time, my daughter was just three days late, sparing me the same number of appointments that I’d endured with her sister.

So when my husband was diagnosed with a malignant, Grade 3 brain tumor in July 2014, naturally, I assumed that he’d receive at least as much oversight and likely, far more than was the case when I was pregnant. I envisioned weekly doctors’ appointments with a variety of specialists, frequent brain scans (since that’s the only definitive way to determine if a brain tumor is growing) and if necessary, hospital visits by my husband’s treating doctors.

I couldn’t have been more wrong. Although during my husband’s first month of treatment when he was receiving radiation on a daily basis we met with doctors weekly. But the radiation treatment ended, the appointments went down to one a month with a single MRI scan in January 2015 (originally scheduled for December but could not be completed due to Hopkins’ staff inability to set my husband’s shunt). By March of 2015, when my husband was due for a second MRI, he was too agitated to go through the machine. Of course, no one was available to prescribe him a sedative to complete the MRI that day, so we had to reschedule. The subsequent MRI was not performed until April 29, 2015 — a full four months after the first (remember, this is a brain cancer patient!). which fortunately showed that the tumor was stable.

Beginning in March 2015, my husband’s condition seemed to improve. His old personality and brain power returned and he was able to engage in many tasks — driving, running errands, surfing the web and reviewing code — that hadn’t been possible since the time he was first diagnosed. So when my husband’s appetite began to wane in early May 2015 even as his cognitive abilities remained sharp, I tried to make an appointment for him with his neuro-oncologist at Hopkins’ Sibley facility. By that time, he had not seen his neuro-oncologist (who was out of the country in April) since March, and I pleaded with the schedule to get us in for May 4, the first available date.

The scheduler refused to squeeze my husband onto the schedule — even after I explained the situation. And she would not put me in touch with the neuro-oncologist’s main office in Baltimore in the hope that I could bring my husband in sooner. Eventually, I agreed to wait nearly two weeks for an appointment on May 11. Unfortunately, my husband didn’t make it that long. By May 9, he became too weak and dehydrated to even get up on his own and since I couldn’t reach his neuro-oncologist, I brought him to the emergency room at Hopkins’ Suburban Hospital on May 9.

I had assumed that once admitted to the hospital, my husband’s neuro-oncologist would see him there. Wrong again. Turned out, that my husband’s Hopkins-employed neuro-oncologist did not have treating privileges at Hopkins-owned Suburban Hospital — where my husband had previously visited during treatment for his tumor biopsy and his MRIs. Instead, we were consigned to a palliative care doctor who simply would not believe me when I insisted that just a week earlier, my husband had been driving a car and interviewed for a high-level programming position and seemed most focused on having me agree to a DNR order. And while the palliative care doctor had assured me that he consulted with my husband’s neuro-oncologist, the medical records that I just received do not show any record of what transpired during those conversations or how long they took place.

Of course, I complained about all of this throughout. As early as December 2014, I had written an email to Patient Relations raising my concerns about the erratic MRIs, and I followed up several months later with two more emails inquiring about why my the full panoply of genetic tests had not been run on my husband’s tumor sample. And after that, more emails as I pleaded for an appointment to address my husband’s appetite issues. Complete and utter radio silence from anyone at Patient Relations — until I filed notice of a lawsuit.

At this point, I’ve received my husband’s records. And after reviewing the information from my husband’s final days, I am more convinced of my opinion that the outcome would have been different had he not been denied access to his neuro-oncologist. Moreover, even assuming for the sake of argument that the outcome would not have changed, Johns Hopkins Hospital had no right to stand as a barrier between patients and their doctors, particularly in cases of serious illness like brain cancer where both the neuro-oncologist and the hospital were part of the Hopkins system.

In this regard, my husband’s experience with Johns Hopkins was the complete opposite of neuro-surgeon and lung cancer patient, Paul Kalanathi, author of the wonderfully lyricalWhen Breathe Becomes Air, an autobiographical account of Dr. Kalanthi’s career and subsequent illness. Dr. Kalanathi described his neuro-oncologist as his team captain; she played a constant and pivotal role in his treatment — not just by providing medical attention and managing all of the pieces of his treatment, but helping him to focus on living and not dying while battling a terminal disease.

That Dr. Kalanathi received far superior care for his lung cancer — another terminal illness — is something that I can understand and accept. Let’s face it: Dr. Kalanathi was himself a doctor — and a gifted and well-liked one at that. He was treated at Stanford, the hospital where he was trained and so it’s not surprising that his providers went to bat for him. Connections and personal relationships matter, as much in the medical profession as in the business world. I get that.

But what I couldn’t wrap my head around initially is why I received so much more medical attention during the nine months of my two completely risk-free pregnancies than my husband received during the nine months that he was besieged by an high-grade, malignant tumor smack in the dead center of his brain. And then, I realized the answer: malpractice lawyers.

All too often, we hear complaints about how medical malpractice has lead to skyrocketing insurance rates for obstetricians and stories about the spurious lawsuits that only enrich the attorneys bringing them. But what frequently forget is that in at least some of these malpractice cases, the providers actually did something wrong. Sometimes the error may have been an accident, in other cases grossly negligent or even intentional. But the bottom line is that something went wrong, and the providers needed to be held accountable to deter similar conduct in the future.

Sure, I’ll admit that many malpractice lawsuits go too far and either penalize doctors who acted perfectly reasonably but nevertheless, a poor outcome resulted. Still, there is no denying that by making medical providers accountable for their actions, malpractice suits have lead to a higher standard of care, better treatment and reduced mortality rates for both mothers and babies.

But here’s the problem. Whereas there are scads of lawyers willing to sue obstetricians, medical providers treating terminally ill patients are rarely a target of medical malpractice. It’s not that brain cancer treatment centers don’t make mistakes or provide substandard care; as my husband’s situation at Johns Hopkins bears out, the care he received is far below what a reasonable person would view as adequate. Rather, terminal cases don’t make for great medical malpractice claims because it’s too easy for a provider to argue as a defense that no matter whether the doctor did A+ work or flunked miserably, the patient would have died anyway. And even if a patient could demonstrate that he would have lived but for the poor care, most terminally ill patients, even in a best case scenario don’t live long — so there’s no opportunity for hefty damages awards based on potential lifetime earnings.

However, rapidly advancing technology will eventually render obsolete the argument that the patient would have died anyway. In my husband’s case, shortly after his death, the FDA approved the Optune device which has been shown to extend brain cancer patients’ life span. Likewise, other techniques like laser ablation (which might have safely debulked my husband’s previously inoperable tumor) and new gene therapies also came on the scene in a similar time frame.

Had my husband not wasted away of starvation and malnutrition under the care of a palliative care doctor and instead, had access to his Johns Hopkins neuro-oncologist who would likely have ordered more aggressive treatment had he been allowed to view the situation first-hand, my husband would have, in my opinion, survived long enough to avail himself of these new advancements. In short, moving forward, a new standard of care will evolve for brain cancer patients where we will need to ask not whether patients would have survived for the long haul but for the substandard care, but rather, would patients have lived another few months so that they could avail themselves of new treatments that might have lead to a longer life.

And that my friends, is why I am suing Johns Hopkins. Because a facility that holds itself out as a world class treatment center for brain cancer ought to be providing, at a minimum, the same level of care for brain cancer patients as I received from my wonderful, but perfectly ordinary ob-gyn for my routine pregnancy. And when it doesn’t, it ought to be held accountable or nothing will change.