How does one deliver healthcare justly in an unjust system?

I recently cared for a patient with a life-threatening bleed. They bled because their blood thinner level was too high. They were on a blood thinner to prevent stroke in the setting of a chronic abnormal heart rhythm (called “atrial fibrillation” or “Afib” for short). Afib requires life-long anticoagulation to prevent strokes. Afib puts you at risk of stroke because it increases the risk that clots will form in your heart and then travel to your brain causing stroke.

The patient’s blood thinner was called “warfarin.” Warfarin is an old, cheap blood thinner. The problem with warfarin is that its blood levels are affected by many things such as diet and other medications. Because of its fluctuating levels warfarin requires frequent monitoring (with blood testing at a clinic). Warfarin is notoriously difficult to manage. This patient’s warfarin levels were high likely because of a different medication they were prescribed for a short time.

For Afib, we have several other equally effective blood thinners that are a lot easier to manage than warfarin. The patient wasn’t on one of these alternative blood thinners because they couldn’t afford them. The most common alternatives to warfarin for use in Afib are Xarelto and Eliquis.

The manufactures of Xarelto and Eliquis each offer a one-month free coupon once in your lifetime. So, if you use each coupon (the two medications are similar enough you can use them interchangeably in this situation), you can get 2 months of free blood thinner. After that, there are programs that might help you either get a reduced price or free access to the Xarelto/Eliquis for 1 year. So, maybe you can get 14 months of cheap Xarelto/Eliquis. Let’s say you’re 50 when you are diagnosed with Afib. You’ll be 51 or 52 when you must figure out how to pay for your blood thinner for the rest of your life (likely 20-40 years).

You might ask, “Can you use GoodRx (or a similar application that compares drug prices and offers recurring discounts) and figure out the cheapest place to get Xarelto or Eliquis?”

Answer: You can. When I wrote this you could get 30 tablets (one month’s supply) of Xarelto at Wegmans for $555. This was the cheapest option on GoodRx. Eliquis was similar in price.

With the above information on Xarelto’s cost you might then ask, “How does the price of warfarin compare?”

Answer: When I wrote this you could get 30 tablets (one month’s supply) of warfarin for $4 at Walmart.

The decision (in this case) between Xarelto and warfarin isn’t really a decision because your finances determine what you can afford regardless of the medically recommended option or the comparative risks/benefits of the medications.

The average American salary was $59,500 in 2024. Xarelto at the above price would be $6,600 a year or about 11% of that average annual salary. The price of Xarelto/Eliquis doesn’t change regardless of how much money you make. Your other expenses including other medications, food, transportation, and housing don’t change regardless of how much your blood thinner costs.

I use this case as an example, however the list of medications that are too expensive for people to afford when they don’t have insurance or when the medication is not covered by insurance is lengthy. If you’re curious, check out GoodRx. You can look up any medication there, see what discounts they offer, and look at the retail prices of that medication. You’ll notice that the retail prices and the discounts are different at every pharmacy (Walgreens, Walmart, etc.). That’s how corporate healthcare works. Each corporation negotiates drug prices with drug companies. Some countries regulate the prices of medications sold in their country to help ensure more equitable access to medications – the US doesn’t.

How does one deliver healthcare justly in an unjust system?

You don’t.

You try.

You fail.

You try again.

References:

Forbes Average annual salary: https://www.forbes.com/advisor/business/average-salary-by-state/

GoodRx: https://www.goodrx.com/

She Must Be Just a Number to You

“You see so many patients, she must be just a number to you,” the patient’s son said as he watched me perform the official exam declaring his mother dead.

“We care about all our patients and take the best care of them we can. Of course, I haven’t known your mother for as long as you have. You’ve known her your whole life,” I said. I finished my exam. I stated the time of death, gave my condolences, and left the room.

I had pronounced a patient dead almost daily that week. During this patient’s exam my emotions were not the emotions of a son who had just lost his mother without much warning. My emotions as the patient’s physician could not be the same as her son’s. I was sad, of course, but I also knew we had done everything we could for her. As a physician I must balance being emotional and being clear-headed so that I can make objective decisions about how to help patients with their medical challenges.

In medicine we push to the edge of current scientific knowledge, yet we are not capable of magic or miracles. We cannot predict the future and we cannot stop the inevitable. Death is part of life. Since medicine in the science of life it inherently involves death.

As a physician my mission is to prevent and cure disease and reduce suffering. A lot of suffering can happen when a person is gravely ill. Part of my job is to recognize when the fight for life is futile. Once the fight becomes futile, anything we do to prolong life also prolongs suffering. It is at the time of futility that I can offer a path that leads to greater comfort and death with dignity. This path requires a shift from a goal of prolonging life to one of promoting comfort. To stop fighting death is not a decision to take lightly. Further, the decision must be made by the patient or their appointed decision-maker (when the patient is too sick to decide). I can only offer guidance as part of the patient’s care team.

This patient, the mother of this son, had fought for her life. She had maxed out every treatment we could offer. She had failed other treatments. When she was worsening, we called the family to come into the hospital. When everyone who needed to be there was at her side, we turned off the medications and interventions that were keeping her alive. We did this because to keep those medications and interventions going would not save her. She would die regardless. She was suffering. Most importantly, she had made it clear when she was well that she would not have wanted to keep going in these circumstances.

When we turned off the medications and interventions keeping her alive, we gave the patient medications to treat her discomfort. She had pain, shortness of breath, and anxiety. She died shortly after we changed our approach from treatment to comfort. She died peacefully and surrounded by the people most important to her. None of this struggle made her a number. She was a person who had fought bravely and died with dignity. And, sometimes, that is all we can offer in medicine – a place that illuminates a person’s intrinsic bravery and permission to stop struggling.   

I have seen and will see many people die. My role in these circumstances is not a counting role. As a physician I ensure my patients get the best treatment available when there is a fight to have and the most comfort possible when there is no fight left. My role is to adhere to their wishes regarding their life and death as best as I can within the constraints of medicine. These are serious responsibilities that are both rewarding and harrowing. Rewarding because I know my patients receive the best care we can offer and a death as close as possible to what they would want if they had a choice. Harrowing because it is hard to lose someone I cared for and because I feel each patient’s loss, not as a friend or family member, but as a partner in the patient’s battle against death.

Being a physician has made me realize exactly how people aren’t numbers. It is my job to learn my patients’ stories and to partner with my patients to tackle their health goals. What happens to my patients is partially a reflection of how well I did my job and partially a reflection of the complexity of being human. The depth of the patient-physician relationship is part of the reason I chose medicine. My patients’ stories are sometimes tragedies and my relationship with my patients is sometimes difficult, but the opportunity to heal, cure, and reduce suffering is enough to make those challenges worth it. I am grateful for the opportunity to take part in my patients’ lives. Grateful even if we meet under extremely unfortunate circumstances. Grateful even if we meet at the end of their life.

Lost to Follow Up

Two different cancer screening tests came back positive. The patient needed additional testing to see if they had these cancers, but the threat was real and could be life changing. As the months went on, the referrals I had put in for the follow up tests came back – “unable to reach patient,” “failed scheduling effort,” and finally “referral canceled as unable to reach patient, reorder if still clinically indicated.” The patient missed their follow up appointments with me. I saw, however, the ongoing social work notes in the chart. Half of these notes stated they couldn’t reach the patient and half suggested contact. Perhaps it made sense that this patient wasn’t attending to their cancer diagnosis/rule out follow up appointments. This patient had big fish to fry without cancer. They were struggling with drug addiction, didn’t have secure housing, and weren’t sure where they’d get their next meal. The electronic chart, filled with short notes attempting objectivity written in the same font used in 1980s faxes, told a story. The story was both an epic and a tragedy.

This patient was lost to follow up. Would we ever find out if they had cancer? Did it matter? Would they die before medicine could help them? Was medicine really what they needed? As I watched the story unfold, Maslow’s Hierarchy of Needs surfaced in my mind. This patient’s basic needs weren’t met – food, safety, and a place to stay. Cancer was so high up the pyramid of needs it seemed silly to discuss. Though, was it really that high up the pyramid? I know what cancer can do.

Health is multifactorial. Only one piece of health is access to quality healthcare. This patient was focusing on several nonhealthcare pieces of health – safety and security of the physical body. Perhaps they were also focusing on finding their next meal. Perhaps the recreational drugs they used were treating demons of a past filled with trauma. This patient was part of a healthcare system with robust social services to help with social problems like housing and food insecurity. Interestingly, the social services this patient could access are exceedingly rare in the US. Most health systems don’t provide these services and most insurances don’t cover them.

I hoped the patient’s basic needs would be met. I hoped that when those needs were met, they’d return to clinic so we could start the cancer investigation process. I hoped it wouldn’t be too late. Even as a physician I don’t get to write the story of other people’s lives. As the story in the chart unfolded, I was grateful that the patient was receiving social services. I was frustrated that in most other US healthcare systems a different patient in the same situation would receive no help of any kind.

“Lost to follow up” is the phrase we use for patients who disappear from healthcare. It’s a term that provides a label, but it doesn’t explain where these patients go and why they disappear. The label can have negative connotations because it’s easy to be frustrated when patients don’t want to take our (their doctors’) advice and follow our carefully designed plans. It’s easy to forget our patients (just like us) are products of the social determinants of health. It’s easy to forget (just like us) they have lives filled with complex situations regardless of their use of healthcare.  

I’ve found that it’s worth stepping back and trying to see why patients decide to become lost to follow up. When I do this, I often discover that they aren’t lost at all. Rather, they are fighting for the most important things in their lives at that time. And the important things they see are usually different than the important things I see. Since patients are the experts in their own lives, they are often right about what’s most important. Frequently nonmedical things have a greater influence on patients’ decisions than their health needs as dictated by their doctor.

As the alerts came to my inbox for missed tests, I thought about the patient the first (and only) time I met them. They had answered all my questions thoroughly and without hesitation. I wondered if I’d see them again. I hoped they returned to clinic before anything devastating related to their maybe cancers happened. I cleared the alerts. The patient would write their own story; I’d be here if they invited me to partake in another chapter of it. Even tragedies sometimes have plot twists and happy endings. I always (and unwaveringly) root for happy endings no matter how stormy the story becomes. 

References:

Wikipedia on Maslow’s Hierarchy of Needs: https://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs

Article on the importance of the different determinants of health: https://pubmed.ncbi.nlm.nih.gov/26526164/

HHS overview of the social determinants of health: https://health.gov/healthypeople/priority-areas/social-determinants-health

WHO overview on the determinants of health: https://www.who.int/news-room/questions-and-answers/item/determinants-of-health