Monthly series featuring personal accounts navigating our healthcare system
After being in the healthcare industry for the majority of my career, I’ve become very aware of just how broken the US healthcare system truly is. I would be lying if I said there aren’t days where I seriously question my decision to continue working in this space. It’s hard to not get frustrated with not only the bureaucracy and inefficiency that plague many healthcare institutions, but also their perceived unwillingness to adopt technology that could materially improve their workflows.
As a privacy attorney, it’s even harder to consistently juggle all of the different regulatory schemes that at times seem to be at odds with each other. While I have enough evidence to support my foregoing statement from my professional experience, I also, unfortunately, have had enough personal experience to come to the same conclusion. In an effort to better explain these systemic issues, and to more effectively humanize these problems, I want to share that personal experience.
In 2016, my mother was diagnosed with pancreatic cancer. While it is easy to disassociate the statistics and numbers we hear regularly in this industry from the humans they are attributed to, in the context of a loved one, hearing that pancreatic cancer has a nine percent survival rate or that your loved one likely only has two months left, carries a significance that can be hard to bear.
In 2017, after some radiation and several of rounds of incredibly potent chemotherapy – with side effects that were almost worse than the cancer itself and only a twenty percent chance of success (yes, yet another gut-wrenching statistic) – the tumor, despite all odds, shrunk and my mom underwent a procedure called “the Whipple”. The Whipple is a procedure to remove all, or parts, of the pancreas. Ten long hours later, while she no longer had cancer, she also no longer had a pancreas, making my mother diabetic for the first time in her life.
In addition to becoming diabetic and now requiring insulin, given that the pancreas naturally supplies enzymes required to help digest food, my mother was required to take this enzyme in pill form, something about twenty-five percent of patients post-Whipple surgery require. After five very long days in the hospital, we were finally ready to be discharged, something I was immensely thrilled about after sleeping on the sofa (read: the wooden board pretending to be a sofa) in the hospital room for the last few days.
While in inpatient stay, my mother was receiving insulin and the aforementioned enzyme, yet it wasn’t until we were being discharged that the hospital submitted the prior authorization request for the prescriptions she needed. In fact, by the time we were ready to leave, we still didn’t have a prescription for the enzyme that we needed in order to be able to feed her. Our options were to either pay the exorbitantly high out-of-pocket cost for the pills or to simply hope that by the time we got home they would be ready.
Aside from the very obvious fact that as a diabetic my mother needed to be able to eat to regulate her blood sugar effectively, after the extremely emotional and stressful week we had already undergone, this was yet one more thing we had to worry about. While I was lucky enough to find a solution to hold us over for a few days, the prescription itself was not actually approved and filled until the following day.
About one year following the first surgery, the cancer returned, requiring my mother to undergo a second surgery. Much like the first, she was admitted post-surgery into inpatient stay. Due to overcrowding at the hospital as a result of flu season, we weren’t in the typical recovery ward.
Despite being in the very same hospital, this department seemed to know absolutely nothing about my mother and her existing conditions, including most notably that she was diabetic. If it was not for us being in the room and asking if the ginger ale they were about to give her was in fact diet, her blood sugar would have most likely spiked to dangerous levels.
A few months after the second surgery, my mother was lucky enough to be enrolled in a clinical trial where she was able to receive, at no cost, gene suppressors that allowed her to live in remission without the need for chemo or radiation. She was part of this trial until around September of 2022, when unfortunately a new growth had occurred. Due to the location of the growth, she required chemotherapy, making her ineligible for the trial.
After undergoing chemo for a couple months, in February of 2023, the cancer had unfortunately metastasized to the brain, which now required her to also undergo radiation. As part of the radiation, she was required to take a steroid to reduce the likelihood of infection. However, at no point in the process did anyone consider the impact of the steroid (something prescribed by her oncologist) on her blood sugar (which is monitored by her endocrinologist).
Steroids are known to increase blood sugar levels, even in those without diabetes. As a result of the steroids, my mother’s blood sugar levels were so high that they resulted in her having multiple diabetic seizures. After suffering two diabetic seizures in the span of a week, she was admitted into the ER for monitoring until they could reduce her blood sugar to normal levels.
It was during this stay that the attending nurse made the decision to administer six doses of an anti-anxiety medication. To this day, I do not know how she was even authorized to make that decision, but the negative impact that had on my mom’s recovery was monumental, as it took weeks to get the effects of the medication out of her system.
After some challenging months of recovery, my mother continued to undergo radiation to address the growths in the brain. Unfortunately with cancer, many of the treatments you use to cure it also come with their own set of health-related side effects. As a result of either the chemo or the radiation, or most likely a combination of the two, my mother developed a chest infection that refused to go away. Despite having more doctors than the average person, when trying to get in to see an ENT specialist, the earliest available appointment was months out.
Unfortunately, before she even went to the appointment, she was admitted yet again to the ER where it was determined that the damage had become too severe and resulted in her vocal cords becoming paralyzed, making it hard for her to speak. Following that stay in the ER, she made the incredibly hard decision to stop all treatments.
I cannot help but think about how different this journey could have been for her – and for us as her family and primary caregivers – with not only better care coordination and data sharing across all her care teams, but more efficient internal workflows. She would not have just received more effective care, but anyone treating her would know her past diagnoses and have her care history.
In addition with more effective coordination, there could have been more stringent medicine adherence and monitoring to ensure that none of her medicines counter-acted each other or created harm. Furthermore, coordination across her care team could have also led to far more effective scheduling for the various appointments she had in any given month, reducing the unnecessary stress of having to manage that herself while in recovery.
In addition, thinking about that first surgery, with a more effective prior authorization process, getting her medication, without the stress of whether or not insurance would cover it, would have been infinitely easier, an issue she faced regularly with her insulin and other required medications.
It is hard not to be incredibly angry at all the points along the way where this healthcare system failed her, and us. Coupled with existing frustration I already had from being in this industry for so long, it does seem a little crazy that I have yet to give up on this system. So why haven’t I?
My mom said from the beginning that she refused to be a statistic, and even with all of the foregoing experiences, she was lucky enough to have had a truly amazing team of doctors and specialists who did everything they could to ensure she did not become one. As a result of their care, my mother got seven years of life she was not supposed to have, based on the original statistics we were given.
While my mother lost her battle with pancreatic cancer in September of 2023, she did so with the opportunity to realize her dreams of opening her own store, traveling to places she had never been, and seeing the birth of her first grandchild. If this system, even while being inherently broken, still has the ability to give individuals, and their loved ones, the gift of more time, then it is definitely one worth fighting for.