What I learned about healthcare, medicine, and life when my brother with Stage 4 cancer died

My one and only sibling — an older brother — was diagnosed with Stage 4 kidney cancer in June 2015. He died in November. He was 44.

Apart from the soul-crushing loss and the gaping void, his odyssey through cancer is revealing on many levels, which I enumerate below.

Very deliberately, I am not identifying the providers, the health system, the insurance company and other organizations we encountered along the way.  What follows is not a criticism but hopefully a diagnosis that can encourage wiser and more influential people than I to come up with solutions that make the system hum. Or at least not make you want to bang your head against the wall.

To beat the proverbial dead horse, let’s talk about EHRs
The electronic health record gets a bad rap. I am afraid I have to pile on.

The healthcare system my brother visited in Northern California has an EHR vendor that has been installed system-wide was the impression we got. Yet the EHR that his oncologists used didn’t speak to whatever was installed in the emergency department

So when we visited the ER — which we did often between February and October of last year — someone would come with a printed list of the medications that they had on record the last time he was there. We were then asked to update it even though we would update his meds every time we visited his oncologist.

I guess interoperability is as elusive as the Holy Grail. I just hope it isn’t as mythical as the latter.

The sheer irrationality of insurance companies
One of those head-banging-against-the-wall-moments arose with 911, ambulances and his insurance company.

You would think that in an emergency, you called 911 and the ambulance would come to transport you to a hospital either near you or where you want to go. The insurer would cover it. End of story.

That assumption would be incorrect. Turns out the insurer will not pay more than a certain portion if the ambulance is from outside its network.

Huh!?!!

So let me get this straight. My brother is having an emergency and I am supposed to find out which ambulance 911 will send me and whether it is in the insurer’s network? To this day, I am not entirely sure how this can be done. Do I need to tell the 911 dispatcher to only send me an ambulance from XYZ company? [We are not the only ones with a crazy ER-related insurance story, however.]

We racked up more than $6,000 in multiple ER visits in 2017 that the insurer initially declined to fully cover. Luckily, my brother’s employer intervened and the insurer paid the entire bill after he passed away.

We got lucky but I doubt few others have this luxury of a supportive employer.

Medicine, while very advanced today, is still a guessing game
My brother was a difficult case, I concede readily. The first year and a half after the diagnosis was more or less stable with the exception of one really scary ER trip that I drove him to. But other than that, modern medicine helped him to live his life, take vacations and continue to go to work. Which is shocking given that he was diagnosed with cancer already metastasized to both his lungs.

However, all the stability went downhill from February 2017 onwards after the lesions in the liver suddenly became aggressive. Month after month we’d be in the ER thinking he had an infection that caused very high fevers. Yet many IV antibiotics and days-in-the-hospital later, nothing could ever be found in multiple blood cultures.

Once, he had a 106 fever in the ER and they had to wheel out a device called an arctic chiller to blast cold air over his entire body to bring the temperature down. No one ever knew the cause of that though later many doctors readily called it sepsis. The blood, however, never spoke.

Oncologists and infectious disease experts all put their heads together. But no one had a definitive answer.

But doctors don’t like mysteries
While the blood never once indicated sepsis or any infection for that matter, his medical record where doctors inputted information, was less ambiguous. It was as if the doctors involved in his hospital stays didn’t like to have a question mark on the cause for the ER visit. It had to be chalked up to some medical malady.

That attitude became clear quite by chance.

We were visiting an urgent care on a weekend when he had a fever to get some blood-cultures done just to avoid going to the ER and be exposed to needles and needless antibiotics. The urgent care nurse called the on-call oncologist to get his opinion. The on-call physician simply read out from his EMR discharge details from the last ER/hospital stay telling her that he was prone to liver infection and to prescribe antibiotics. It was patently false because the multiple bouts at the hospital and repeated blood cultures had yielded zero evidence of infection.

Later, I was at a healthcare conference at Stanford University, where I ran into a woman experienced with medical liability claims. She declared that in the majority of cases, patients can find grounds for lawsuits in hospital discharge information.

It would have been nice if some of the hospitalists would acknowledge we really don’t know what is going on.

Side effects of Immunotherapy need to be acknowledged
Cancers that have high degrees of mutation usually respond to immunotherapy. Even though kidney cancer, which my brother had, isn’t one of those high-mutation cancers, we were hoping for it to control the disease given all we had heard.

Not only did immunotherapy not do that, it permanently messed up my brother’s pituitary gland which meant he had to take a few thyroid medications and steroids daily. There are real, toxic side effects of immunotherapy that the public is not hearing much about. All the average person sees is ads about immunotherapy and its near-miraculous properties.

This is not to undermine the remarkable cures we have witnessed through this treatment modality in lung and other cancers. But the potential for a cure needs to be tempered with an acknowledgment of the side effects. Meanwhile, doctors can strive to increase their understanding of which patients respond to immunotherapy and select only those for optimal results.

Doctors miss stuff
My brother and our family were beloved by his oncologist and care team and always available to respond via phone or text. The oncologist rushed to our home when she heard of his passing, came to the funeral and also came to his memorial on a weekend. This level of support is unusual for a busy oncologist says a close friend of ours who is a radiation oncologist at the MD Andersen Cancer Center.

Yet these same doctors missed it when the kidney cancer spread to the liver. This was seen as part of a flurry of tests in his first ER visit back in December 2015, but not unearthed until I found it in February 2016 while poring over other test results. I had missed it in December because I had stopped looking at his EMR too closely. [I was exhausted with dealing with his unsupportive wife from whom he later separated and filed for divorce.]

In other words, no matter what else is going on in your life, you have to be vigilant around the clock. No matter how special you are to your care team, you are just one of many patients your doctor has.

Doctors still know best
The confounding part of my brother’s last seven months were the recurring fevers without any cause. We were advised to go to the ER anytime he had a high fever because, for a time, he had an external bile bag and then a Picc line. So the chance of infection was high.

One time the high fever was accompanied by a very fast heart rate and low blood pressure — textbook symptoms of an infection. But even then the blood cultures showed no positive results for any bacteria. Soon enough he grew tired of the incessant needle sticks in the hospital, the antibiotics followed by nausea and weight loss. My mom and dad would struggle to get his weight back up and then another high fever would strike and we would be back in the ER. 

After seven or eight of these trips, my brother declared he wasn’t going to take any antibiotics anymore and wouldn’t go the ER. He and we were convinced the fevers were related to cancer and not any infection. But the doctors and other clinicians would always ask us to put him on antibiotics to stave off any infection if a fever came. We brushed them off.

Then, on a fateful November day, another bout of high fever, chills, high heart rate and very low blood pressure occurred. I repeatedly asked to take him to the ER given all three were classic signs of infection, but he was resolute. He wasn’t going. We went to get blood cultures and he reasoned that the blood pressure was rising and his oncologist was seeing him in 24 hours so no need to rush to the ER. He forced himself to eat pizza because I had begged him to eat a high-sodium diet to prevent any onset of confusion. We played Uno. He talked about my career. I stayed with him till 10 p.m. that night.

The next morning FaceTime revealed that he was conscious but not speaking. I asked my mom to dial 911. I saw him before they the ambulance took him away — he knew I was there and said something but the sounds formed no words. His oncologist called me to say the blood was positive for two bacterial infections.

By then, it was too late.  The sepsis had overwhelmed his generous heart that had been beating at a ferocious pace for months. And in the blink of an eye, he was gone. The doctors were right: cancer maimed him, but infection felled him.

The quiet finality of death
You go from seeing a person every day, sharing his life, knowing his deepest thoughts, being a part of and yet apart from his suffering, dreading the inevitable and yet planning for it with him, to leaving his lifeless body overcome by disease in a cold, hospital room.

Hindus like me are supposed to believe that the soul is immortal and that in death the soul simply sheds its earthly garb to adorn a new, eternal one. The Christianity I learned in an Indian Catholic school taught me about a wondrous life in heaven.

And yet, I believe these are elaborate ruses we humans have concocted to beguile ourselves. So we can somehow grapple with something that is infinitely difficult to accept: there is a quiet but firm finality about death.

I will never see my dear brother again.

And yet life goes on: I have two kids to raise, my husband to love/berate for the rest of my life, my parents to take care of and cherish, and MedCity to run successfully. And the shared memories of a brilliant, successful brother who created this life for me in America, and whose name will be uttered every time Stanford University hands out a scholarship in his memory to some deserving Physics undergrad.

Meanwhile, his online pharmacy that has been informed of his death continues to deliver medications….