Decoding Health Care

Part 30: Being a patient (part two)

Being sidelined by my surgery and post-operative recovery has given me a fair amount of time to think about the patient experience. Let’s pick up where we left off.

6. American medicine is very efficient when things go well. When I was practicing oncology, I marveled at how efficiently we were able to give chemotherapy in our office. From the in office lab to the pharmacy/admixture services to the infusion suite, we operated like a well oiled machine. I can contrast this to my experiences in an academic medical practice and in the VA where we were definitely NOT a well oiled machine. So many things could (and did) go wrong.

Theoretically, this efficiency in outpatient oncology is paid for by the drug “mark-up” known as buy and bill, in which oncologists purchase chemotherapy at a certain price and bill the payers after adding on a percent of the acquisition cost. This model has come under intense criticism. It has been argued that it creates all the wrong incentives: if you give more chemotherapy you make more money (and you also make more money if you administer a more expensive drug since the markup is a percent of the acquisition price). But if we do away with this model there is no way that private practices can provide the kind of service that patients (and providers) have become accustomed to.

I was thinking of this as I had my knee surgery. The procedure itself went as smoothly as I could imagine possible. It was performed as an outpatient at a surgicenter owned by the orthopedic practice I chose. I went in at 8 AM and was home by 2 PM. Everybody who cared for me was kind and competent. It was a very patient friendly experience. As we think about how we wish to reform health care we need to have a pretty good idea of what we may be sacrificing in exchange for cost savings.

7. There is no substitute for a good caregiver. After my surgery, my wife has been my primary caregiver, and I certainly could not have done it without her. I suspect that if you had asked the two of us what this caregiver role entailed we would have responded with some generalizations that were for the most part correct but did not at all capture the scope of the job. We knew I wouldn’t be driving and that she would be taking me to my doctor and PT appointments. We didn’t know how hard it would be for me to get in and out of the car. We knew I wouldn’t be able to contribute to household chores. But taking care of the dogs, making sure we had something in the refrigerator, and keeping the house clean without any assistance at all from me does get to be tiresome. And then there is personal care… helping with showers and dressing, helping me get in and out of bed, keeping the ice machine (used for pain control after knee surgery) filled all the time, made caregiving a full-time job.

The importance of caregivers is underappreciated by most physicians. When I was practicing oncology, I certainly admired those family members who came to each office visit and treatment. But I did not really understand the depth and breadth of their involvement in my patients’ care. Caregivers are vital to good health outcomes. According to the CDC, 20% of American adults serve as a caregiver (Changes in Health Indicators Among Caregivers — United States, 2015–2016 to 2021–2022 | MMWR). Many of these care givers are older adults. And up to 2/3 of them experience burnout. As a society, we need to think about relieving some of this burden. For example, many of the challenges caregivers face we already know about because they are health related social needs of the patient. Connecting caregivers with the right community resources is critical.

8. Pain is bad (part two). I thought I had pain before surgery. Nothing really prepared me for my post-op pain. My orthopedist and his team were very upfront about pain management. They recommended a stepped approach, with continuous administration of a nonsteroidal and acetaminophen for mild pain, tramadol (a weak short-acting narcotic) for moderate pain, and oxycodone (a potent short acting narcotic) for severe pain. They made it clear that they would prescribe pain meds for the immediate post-op period (one month) and after that they would refer pain management to my primary care doctor. And no pain med refills “emergently” or during off hours. I didn’t need to sign a pain management “contract”, and the terms they defined were not really surprising.

But as an oncologist, I had a lot of baggage when it came to pain management. I was determined to limit my narcotic usage to the absolute minimum, and for the most part I have. But I have probably experienced more pain than I should have, and I can thank the Sackler family and the opioid epidemic for this. When I left oncology practice, the magnitude of the opioid problem was just being recognized. I had practiced through the years of build-up: recognizing pain as the “fifth vital sign” (resulting in an increased physician sensitivity to pain management), the promotion of oxycontin as a “non-habit forming” long acting narcotic, the blatantly self-serving push for a liberalized approach to pain management with narcotics.

I was somewhat shielded from the consequences of this increased dispensing of narcotics because I was treating cancer patients. But I definitely had patients receiving narcotics scripts for pain that didn’t quite mesh with their clinical situation. I am certainly NOT questioning whether they had pain or not; but I also wasn’t going to say no to them when they asked for a refill. We now know this was a mistake. There is little doubt that medically appropriate prescribing can open the door to opioid dependence. According to the AMA, between 3-19% of patients using narcotics develop some narcotic dependence (Psychiatry.org - Opioid Use Disorder). Dose of narcotic, duration, and several demographic factors (young adult age, for example) identify groups at higher risk. Amazingly, 45% of patients addicted to heroin STARTED with a prescription narcotic. These numbers are very real to me; one of my colleagues became addicted to narcotics after an orthopedic procedure.

So between the backlash over the overprescribing fostered by the oxycontin fueled opioid epidemic and the increased scrutiny of the impact of normal prescribing of pain medications, I was hell bent on avoiding narcotics, and I am not sure this was the right thing. I will say that when I took them they did help a lot. We need to find a comfortable and appropriate approach to pain management. I am encouraged that recently the FDA approved a new first-in-class pain medicine, suzetrigine, that works on peripheral transmission of pain nerve signals (https://www.fda.gov/news-events/press-announcements/fda-approves-novel-non-opioid-treatment-moderate-severe-acute-pain). Of course everything comes at a price; each tablet costs about $15, making a one week course cost about $250.

9. Uncertainty is devastating. When I was in practice, one of my “favorite” patients was a physician with bladder cancer. He had a fairly aggressive cancer and I gave him fairly aggressive chemotherapy. He was a nervous wreck and he had near constant anxiety about whether the treatment was working. He had very little toxicity, and feared that therefore the treatment must not be strong enough. He wanted a CT scan almost every month. We often laughed about how he interpreted nearly every symptom as being a harbinger of doom. He was very intelligent and well informed and could understand that we were doing the right things, but the uncertainty was consuming for him.

I know now what he feels like. Every day I worry about whether everything is on track. I am concerned my rehab isn’t moving fast enough. Every new ache and pain is alarming. The internet is more foe than friend. There is all kinds of info on the internet. You can get wildly different answers for even the most straightforward question.

Several years ago, Eric Topol, the well known cardiologist and author underwent knee replacement surgery and it did not go well. He wrote and spoke extensively about the experience (This week in patient engagement: Topol fights pain, a nurse learns empathy - MedCity News). He was prescribed a “standard” physical therapy regimen and it did not really work. He had a lot of pain and his rehab did not progress. When confronted with this therapeutic challenge, his orthopedist doubled down and prescribed a more prolonged course of conventional rehab. According to Topol, what saved him was seeing a different physical therapist who prescribed a different regimen. After an extremely prolonged recovery, he regained function.

Topol blamed the one size fits all thinking and argued that if he had a personalized treatment plan the result would have been different. In fact he felt that AI could have charted his course and he could have avoided a lot of pain. I am not sure I agree with this conclusion. There simply isn’t enough information out there to allow AI to develop such a personalized treatment plan. But why not?

As I mentioned earlier, there are a lot of knee replacements done in this country. We should be learning from each one. We should be collecting data and using it to learn what a usual clinical course should look like. Had Dr. Topol had a concrete treatment timeline that would have identified where his clinical course went off the rails it could have saved him a lot of grief. This is far from an individualized treatment plan and it doesn’t really need AI. But it sure could have helped answer some questions that troubled me. Every patient experiences the uncertainty differently, but nobody likes it.

10. Informed consent is a misnomer. I cannot tell you how many times I told my patients that chemotherapy would make them tired. But what does that actually mean? It certainly means something different to a young mother with school age kids compared to a retiree. I had absolutely no frame of reference for fatigue. Or for any other symptom. When I told patients they might have diarrhea, that could mean 2 or 12 bowel movements a day. And if you are a UPS driver, even 2 could be disruptive. When we say we obtained informed consent, we should recognize that whatever toxicity we are describing is going to occur in a different context for every single patient. And depending on the stakes of the game, that disruption is either OK or it isn’t.

When I was talking to cancer patients and the downside is death that is one thing. I wouldn’t have died without a knee replacement. Did I really know what I was getting myself in to? No. Would I still do it knowing what I know now? A qualified yes. We need to reconsider the process of informed consent. We need to make sure we are providing an accurate representation of the risks and benefits of any intervention without scaring people away. And in order to get it right we need to collect patient experiences to enter into the model. And we need to be honest with our patients.

Being a patient is not really a pleasant experience. If you are a doctor it can teach you a lot about what kind of job you are doing. Around the same time Dr. Topol was writing about his knees, Lindsey Norris, an oncology nurse, got a diagnosis of stage 3 colon cancer ([feature post] Dear Every Cancer Patient I Ever Took Care Of, I’m Sorry. I Didn’t Get It. – Here Comes the Sun). She wrote an incredible piece about what she learned about taking care of patients with cancer by BEING a patient with cancer. She describes in detail all the ways she had failed to empathize with her patients.

By no means do I mean to equate knee replacement with cancer therapy, but a lot of the lessons translate pretty well. We pay a lot of lip service to patient centric care. We have a long way to go, but there are some things we can do right away. I hope this experience makes me a better doctor, even though I am at the end of my career.

There is one critical element of the patient experience that I have omitted. How do you pick a doctor? What determines your level of trust and satisfaction? When do you need a second opinion? I will discuss these in my next post.