What's Love Got to Do with It?
Who needs a heart when healthcare is broken?
One of the most common responses that I hear when I tell people that I’m an oncologist is “Oh wow, that must be so depressing.”
I’m still not sure how to react.
Do I defend my choice of profession and describe what a privilege it is to care for people facing cancer?
Or share that the chances of surviving a few years after a femoral-popliteal bypass is 20% and the survival rate of early-stage lung cancer approaches 80%? Cancer is definitely not the most depressing field!
Most of the time I smile and say, “I hope you never need me.”
I love being a doctor. I love caring for patients. I love learning and working as part of a team to create the best experience for people who are dealing with a life-threating illness. I’m also not sure if I can continue.
These past few years in medicine have been rough. The pandemic of course, but more insidious is how the focus has shifted away from the doctor-patient relationship and towards pathways and metrics. This invasion of business culture under the guise of “value-based care” has forced us all into a very hard left turn.
Patients are now “healthcare consumers.”
Hospitals “provide services” rather than serve.
We work in “healthcare systems” rather than doctor’s offices.
The CEOs of our hospitals live in different states rather than down the road.
These distinctions make all the difference.
From the first time I slipped my arms into a short, boxy white coat, my professors were clear: You are here to serve. “Put the patient first and you will never be wrong” was drilled into my impressionable brain and those of my classmates. Fight for your patients and whoever is in charge will support you. We were the experts in our patient’s care and people would look to us to provide that direction.
So that’s what I did. And it worked! I had great relationships with my patients and provided excellent patient care. I worked around nurses and other staff who were similarly focused. The patient was at the center, and we were here to serve. THIS IS AWESOME! I thought. I CAN DO THIS FOREVER!
After a few years, however, things began to change. Older doctors who spent extra time with their patients but didn’t meet their metrics were threatened with termination unless they got up to speed. Staff members began to challenge my orders and managers agreed with them. Transcriptionists were replaced with clunky dictation software, or we could type our own notes. Sadly, doctors became transcriptionists. (You were right about the typing classes, Mom.)
Fighting for competent patient care resulted in the label of being “difficult” rather than respected. “You know how THEY are,” one former cancer center leader used to say to his assistant while rolling his eyes after I made a request.
As doctors, our heads were forced to turn away from patients and towards metrics — how many of our electronic charts were open, how fast did we respond to patient messages, how many of our patients were on certain medications, etc. Departments were reorganized so that staff answered to managers who answered to bosses we never saw. On paper, patients were still at our center, but it became harder and harder to see them from behind our computer screens.
In cancer, this happened quickly and for a long time I didn’t understand why.
The answer, to paraphrase the great Snoop Dogg, is “They keep their minds on their money and their money on their minds.”
Cancer is a major source of revenue for hospital systems. Like many directors who oversee profitable departments, cancer center leadership is under tremendous pressure to meet their % growth targets. Which is not a bad thing. We have great doctors; we provide great care; people should come here for their treatment and in turn we will have more money to invest back into the care of cancer patients.
Reader, that is NOT what happens to your cancer co-pays.
What actually happens is a very complicated redistribution of wealth. The revenue generated from profitable departments (known as “The Three Billion Dollar Club”) subsidizes other departments like infectious disease and the ER that are consistently in the red. For example, many years ago I was told that the profit from ONE radiation treatment machine covered the year-end bonuses for every employee in the hospital system. And yet we couldn’t get funding for another cancer center social worker. But I digress…
Dr. Eric Bricker does a great job of explaining this money shuffle in the YouTube video below:
This poorly implemented approach to “value-based care” promises that if we all work hard enough, there will be enough money to provide the important (but non-revenue generating) services that our cancer patients need. It reminds me of It’s A Wonderful Life when George explains why there’s no physical money in the Bailey Savings and Loan: The money’s not here. Well, your money’s in treating Joe’s pneumonia. His room’s right next to yours. And Little Johnny’s broken arm and Mrs. Macklin’s hepatitis and a hundred others.
Lots of questions, but you can see why this is a broken system. After almost two decades, I’m still waiting for the benefit to come back to my cancer patients. Instead, the focus remains on how busy the front door is, rather than the intimate relationships that follow.
Patients experience this new reality in a variety of ways:
a doctor that now brings a laptop into the exam room, typing while she talks.
the frustration of answering THE SAME QUESTIONS at every visit, which no one seems to read or ask about.
being sent to an urgent care when unexpected health issues arise rather than seeing someone in your doctor’s office.
On the other side of the exam room, doctors’ reactions are as varied as our personalities. Some adapt readily, pivoting to focus on these new goals. Others try to navigate the middle, spending the same amount of time with their patients and saving the paperwork for after hours and weekends. Still others fed up with spending all weekend in front of a computer, leave medicine all together. Many, particularly those trapped by golden handcuffs, keep their heads down and plug away, enduring unhappiness from all fronts.
Is it any wonder that when doctors and patients meet in exam rooms that increasingly both leave feeling unsatisfied? Or even worse, upset?
With minimal exceptions, our medical system no longer supports a healthy doctor-patient relationship. On the whole, people who choose cancer, desperately want to help you, but that’s no longer what we are paid to do. Instead, providing “quality care” is the goal:
Have we provided you with a procedure/medication that address your needs? Yes? Perfect.
Did you have the experience of being cared for? Hmmm, let me see. That’s not on the list.
If a nurse wrapped you in a warm blanket, a doctor gave you a hug, or a CNA refilled your water pitcher, that’s wonderful, but optional.
So, what can you do? I’m sorry to say it, but you have to do more. I know, not fair. You have cancer or are caring for someone with cancer, but this is the truth. You have more power than you know.
Fill out every survey. Be honest and include specific feedback. Be stingy with your stars. (I once organized a successful patient complaint campaign after a manager fired our parking valets and patients had to walk up a steep hill for their treatments.)
Don’t complain to your doctor. Doctors probably do not have the power to address your concerns about the lab, parking, nurses, waiting room, scheduling, someone’s attitude, etc. They do not manage the staff and likely agree with you.
If the problem is your doctor AND is interfering with your care, schedule an appointment to discuss the issue and clear the air. If it’s not worth the co-pay or 30-minutes of your time, let it go and thank them for taking care of you.
Write a thank you note to the CEO/President when you have an awesome experience. Include dates, names and titles.
Demand better. If you don’t get what you want, ask to speak to the manager and be specific in what was missing in your care. Determine if there is something you can do to help and follow up with the person that you speak to.
Finally, take care of YOU. Look for outside resources. Should your cancer center provide counseling, acupuncture, survivorship and social work? Yes. Do they? Maybe not. Start here, here, here, or here.
Who needs a heart when our health system is broken?
We all do.
We are in this together, you and me. When we meet to discuss your cancer, we have to decide to remain vulnerable together. To do what we know is right in that moment. And to forgive each other if one decides to leave.
On my mind…
(For those interested, Dr. Eric Bricker explains how a Cleveland health system improved profitability and improved patient care through a physician led approach.)
Dr. Wentworth, I was expecting your Monday article to be good, but you have FAR exceeded expectations. Some observations, all pointing to why this article is so good:
First: re “value-based care,” I recently read the linked piece by Dr. Wachter about that very thing. I think he is a good man, trying to work in the system as it is, but of course the question is –is that a good thing to do—and, if not, what are the alternatives? (I have opinions on this, but as I’m going try to not go on for weeks here, I’ll just lay out the question—and you’ve ID’d a LOT of the problems in your bullet points.
https://academic.oup.com/healthaffairsscholar/article/1/1/qxad002/7203669
I appreciate so much your concrete suggestions, and I’m going to give a little “patient view” on two listed below. (Just as background, both I and my spouse have gone through cancer. Not fun, but glad to report we’re still here—and very, very grateful to people like you who saw us through it. I am retired, but also worked in health care-related fields, so I have enough knowledge to be dangerous about these things!) So, with that, here goes:
>Fill out every survey. Be honest and include specific feedback. Be stingy with your stars. (I once organized a successful patient complaint campaign after a manager fired our parking valets and patients had to walk up a steep hill for their treatments.)
Here’s the problem I encounter: The issues we’ve faced that are most problematic are on the admin/systems end, not on the care received. Yet we have never, between us, received a survey that asks for input on those issues, only on how we thought the physician and front desk staff performed. While I scouted around and found an address to write to, I have no confidence that, if I spend the time, it won’t just go into the slush pile (this doesn’t mean I’m giving up, just that I feel I need to learn more to figure out how not to end up in the slush pile).
The thing is, to the vast AMC system, the issues we have encountered may feel like tiny details, while, for the patient, these are much bigger deals.
Here’s an example: My Reclast infusion had to be delayed because of dental work. The only person in the whole system who was charged with alerting me that if, the timeframe went over 30 days, I’d have to get a new set of bloodwork, was the MD. She didn’t happen to think of it, and my view is it shouldn’t be on her to do so. Rather, the AMC should, for goodness sake, have a system that spits out info and reminders on this to the patient portal. As it was, I didn’t find out until I arrived, the lab was backed up, and my infusion session was therefore 90 minutes longer than it should have been. (And here’s a former cancer patient “extra”: I hadn’t realized, as chemotherapy was so long ago, how distressing it would be to go to the infusion center, which also treats cancer patients. That extra 90 minutes revived some of the horrible earlier experience. This was all unnecessary, not the MD’s fault, not the nurse’s or staff’s fault, but rather the admin system’s fault.)
PS: And don’t even get me started on the ER. Here’s your money quote on that one: “What actually happens is a very complicated redistribution of wealth. The revenue generated from profitable departments (known as “The Three Billion Dollar Club”) subsidizes other departments like infectious disease and the ER that are consistently in the red. For example, many years ago I was told that the profit from ONE radiation treatment machine covered the year-end bonuses for every employee in the hospital system. And yet we couldn’t get funding for another cancer center social worker. But I digress…” And, believe me, you do NOT digress on that one. It’s the central problem.
>Don’t complain to your doctor. Doctors probably do not have the power to address your concerns about the lab, parking, nurses, waiting room, scheduling, someone’s attitude, etc. They do not manage the staff and likely agree with you.
Agree 100%. See above.
Bottom line, which you have outlined here so well: We need to change the system in which the health care providers work and in which patients receive care. Unfortunately, the financial incentives are perverse. The perennial question is how to make that change.
Our health care system is anything but caring. Decisions are financially driven and made in board rooms for profit and stock holders. NO ONE should come between the Doctor and their patients.
I have tried to remain transparent about my journey. I wrote this in 2019 several months after completing my initial treatments realizing there was more to the story. I share it in support of you or someone you may know. We all have something. Love ❤️
As a cancer survivor I see so many commonalities in our special world. We have awakened to a new life. Many of us are striving to be our best self. Many are now, after enduring treatment being their best self while enduring the side effects of treatments. Cancer is scary, the side effects are what we live with. At some point each of us must make a mindful choice to endure treatments and knowing how these will change our lives forever. We develop PTSD, we continue to fight, fighting the cancer, side effects and the consequences and costs of life long medical care. It’s not a journey we chose but we do choose to live. It’s so often we hear, you look great. Only at that moment do we realize how unimportant how we look is. We choose to live. We choose to continue to better ourselves. We choose to live each day and moment. I never understood, until I did.
Cancer survivors and those who succumbed to this terrible disease( I love you Dad) YOU ARE MY INSPIRATION. YOU are an amazing person and I understand what you have shown and shared. #cancersucks.