Reflections of an ID physician: When Cancer Comes Home
It is with mixed emotions that I introduce this piece by my colleague Dr. Katie Sharff, an infectious disease expert physician and researcher. The piece is about cancer striking in her own family, and the challenges of navigating the US health care system. Having been both sides of it— as a doctor and a patient—her concerns resonate.
I have always felt it is cruel that in cancer medicine that we will happily pay $200000 for a drug that extends survival mere days while there is seldom money for human care—For hiring people to make it easier for sick people to plan their schedule, get to appointments and do chores around the house. We will happily shovel money to the shareholders of companies when what we really need are people who are empathetic, compassionate and who care. But that wouldn’t make rich people richer.
Vinay Prasad MD MPH
Reflections of an ID physician: When Cancer Comes Home.
By Dr. Katie Sharff
Six weeks ago, I was considering leaving clinical medicine. The medical system felt like a sinking ship, every time we would plug a hole, another leak would appear. I felt like I was going down with the ship. I wondered what impact I was having, was I making a difference? I wondered if it was time to shift careers to further my impact.
And then cancer came home….
My mom is 73-years old, but she is not your average 73-year-old woman. She ran the Boston marathon for her 40th birthday, she rides 50 miles on her road bike. When she goes to the doctor and the medical assistant asks for her medication list, the only thing on it is a multivitamin. She is the picture of health we all strive for.
In early October, she saw her primary care doctor for a routine check in. There were no complaints, no concerns, just a usual annual appointment. She had screening labs done which demonstrated a mild elevation in her liver function enzymes. (The value of screening labs can be debated in another essay). This abnormal liver enzyme test led to a right upper quadrant ultrasound, and this is when cancer came home.
It was a Thursday evening, October 27th 2022. I was boarding an evening flight with my family, destined for Disneyland. As we were walking down the jetway, my father calls, sobbing. “Mom has a mass on her liver and pancreas,” he says.
From this point on, I witnessed my mother and father trying to navigate the rough waters that we call our medical system. The ultrasound report recommended a follow up CT scan or MRI, but unfortunately my mom’s primary care doctor was out of town and the covering provider was too buried in her own clinical work to order it in a timely manner.
They could not get the scan ordered by the covering provider before the Friday 5 pm deadline. It wasn’t a medical emergency but this inability to get the appropriate tests created a feeling of helplessness. My parents sat with their anxiety and fear for 3 days. Eventually the follow up scan was ordered but navigating the radiology scheduling system is like navigating the airlines during Thanksgiving holiday. They sat on hold, told they were #30 in line via an automated system, 4 hours ticked off while they waited to speak with a human to schedule the appropriate scan.
This is medicine in 2022. This is medicine in 2022 for a patient who comes from a medical family. My heart goes out to the patient who does not have the knowledge to navigate our complex system.
After many scans, tests, and a biopsy my mother was diagnosed with cholangiocarcinoma. Initially thought to be resectable, a planned hepatectomy was aborted when metastatic disease was found on her peritoneum.
Throughout this process, I have been a passenger in our healthcare system. As a doctor, I knew it was sinking, I felt it with my own patients. However, as a daughter, I am experiencing the challenges of our healthcare system first-hand.
Despite these challenges, I have seen what my mother needs from her doctor and team. The experience of empathy, of shared experience, of time invested to understand who the patient is and what they value. Patients do not want an automated system helping them schedule appointments or scans, they want and need a relationship, an ally.
She has an appointment with her oncologist in a few days. He likely doesn’t have much to offer, her tumor markers are not favorable, chemotherapy for this cancer extends life in the realm of months. However, these appointments are important to my mom and family. Her doctor may not be able to cure the disease or extend her life significantly, but the ability to listen, to share the experience, to offer support; that is what matters right now.
My health system, like many systems around the country, is struggling with how to provide care in a time of limited resources. I was on a leadership meeting last week and our system is considering an automated referral process to improve patient’s ease of scheduling, to improve access. After witnessing my own family’s experience in healthcare, I had to speak up. Although for some individuals an automated system will be desirable, for many of our patients they need that human contact, that reassurance that a knowledgeable scheduler or medical assistant is on the other end of the phone helping them navigate the rough seas we call healthcare.
This is the year of not enough---
1. Not enough doctors
2. Not enough nurses
3. Not enough laboratory techs
4. Not enough hospital beds
5. Not enough schedulers
6. Not enough amoxicillin
7. Not enough liquid Tylenol
8. There is never enough…..
The only thing we have enough of right now is sick patients who need our care. I don’t have the answer to solve the struggles of our system, these challenges have been percolating for years.
However, despite not having enough, we all still have our empathy, our ability to listen, the relationship with our patients. This is a gift that cannot be taken away and despite many challenges in healthcare, the ability to connect with our patients is truly what may matter the most.
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The fundamental problem here, in many ways, is the governmentization and corporatization of health care (using the word loosely). When doctors were in practice for themselves (I have been there) they were primarily concerned for and about their patients. It showed.
Now virtually all doctors are tools of large health care organizations, whether academic or private. They all answer to everyone EXCEPT the patient. The patient does not pay his or her own bills, so they really have no economic input into the transaction whatsoever either.
Those who pay the bills do not care whether patients sit on hold for hours. Makes no difference to their revenue streams. They just insert automation because it makes more money. What happens to patients is irrelevant.
The most egregious example of this is electronic medical records. Having practiced through both systems, I can vouch that in most ways, care was far better rendered using the paper chart and focused providers. It used to be that the nurses cared for the most needful patients while the aides did all the non-care work. Now aides provide almost all care while the nurses sit in the hallway punching data into Epic that not a soul will ever use/read except, perhaps, some lawyer, somewhere, sometime.
There is no money to be made in finding a home health helper for elderly patients who need them, so it is not happening. Those same people enriching themselves by forcing covid spikeshots on hundreds of millions of people that do not need them and never did are also enriched by the antineoplastic that extends a (miserable from side effects) life by two months. That's where the money will go.
Until there is a fundamental change in how health care is financed (and no, government paying for it all is not the solution -- Vinay should practice in Canada sometime like I have) this is not going to get any better and, in fact, can just be expected to get worse.
So much said in so few words. I recently went to get inflixumab for late onset crohns and the sign in assumes one has a smartphone to open the camera to click on the square that takes you to the website login. Redundant and time wasting for me, I refuse to use it because part of the ritual of my own care is to INTERACT with Belinda, the wonderful woman behind the desk who dislikes the system as well. I like to get there, share words and a few pics of the grands, give a token of appreciation in the form of deer summer sausage from my hunt, and jabber for a minute or two. If connects the human component of reducing my own anxiety, and she likes the interaction with all of her patients (I’ve asked) as well. I was also in healthcare (chronic pain and addiction) and left the field entirely when it became profit driven. As a person who started as a patient (myelomeningocele and 57 subsequent surgeries) and one who tried for two decades to do what’s right for people, I’ve watched profit driven healthcare’s focus go from caring for the patient to caring for the bottom line. Isn’t the first order of caring for patients actually to CARE FOR THE PATIENT? I will keep the author and her family in my thoughts through the holidays and beyond.