Tag Archives: Ethics

Patience with Patients

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The patient had stage 4 lung cancer which meant it was advanced. They’d already been admitted to the critical care unit (ICU) several times because they couldn’t breathe. There was one test to determine if the patient’s cancer had spread beyond their lungs pending. Given their rapid decline, I suspected that it had. The patient’s cancer doctors recommended chemotherapy. Yet, the patient wasn’t sure they wanted chemotherapy. When I saw the patient, they were taking a medicinal herb and a medication they bought online to treat parasites. They explained, not entirely incorrectly, that cancer is a parasite of sorts.

Autonomy is a guiding ethical principle in medicine which states that patients have the right to decide what happens to their bodies. I believe that autonomy is one of the most important ethical principles in medicine. I also think that it differentiates modern medicine from historical medicine. This patient’s story provides an example of autonomy in action.

On the one hand, my heart dropped upon hearing the patient’s plan. There is no research to suggest that the herb or anti-parasite medication they’d opted to take would slow or cure their cancer. There is robust evidence behind radiation, chemotherapy, and surgical treatments cancer doctors recommend to treat cancer. There was the hard truth that if this patient’s disease progressed as expected, they’d be dead within the year without science-supported treatment. There was a risk that if the patient waited too long before starting chemotherapy that they’d be too weak to survive chemotherapy treatment, making it no longer an option. On the other hand, chemotherapy is extremely hard on the body regardless of how strong a person is when they start it. And there was a chance that chemotherapy would make the patient feel terrible and fail to save their life or even prolong it.

When I saw the patient, they felt okay. They needed oxygen at night but, overall, were able to function almost normally. They’d taken steps to improve their health by decreasing the amount of alcohol they drank and the number of cigarettes they smoked. There was no research saying that the herb and anti-parasite medication they’d decided to take were harmful.

I collected my thoughts. My job as a doctor is to provide advice. My goal is to provide enough information so that patients can make their own informed decisions about their health. When I spoke, I acknowledged the dearth of research to support the over-the-counter treatments the patient had chosen for their cancer. I reinforced the truth that they had control over their body. I discussed the reasons their cancer doctor recommended certain treatments. I cautioned that there might come a time when they would be too sick to endure the treatments their cancer doctor recommended. I also reminded them that a middle ground was possible where they took the herbs and medications they chose on their own while also taking the treatments their cancer doctor recommended.

The patient decided that they would think about their options while continuing only their current home remedies. It’s seldom that there is only one right path in medicine. I felt that the patient understood enough to make their own decision. I worried about the patient, but I also knew that they were balancing all aspects of their life while I was mostly focusing on their medical conditions. I, undoubtedly, didn’t know some parts of their story. Only they could decide the best course of action for their body.

The doctors I’ve grown to respect throughout my training are the ones who have patience with patients. I strive to be that kind of doctor – one who isn’t scared to have hard conversations but is respectful of the path patients chose for themselves. In the end, the patient with lung cancer’s life was only theirs to live. I would be there to offer advice as we gathered more information and time went on. I would be there to offer an encouraging word and support. But I was not the one living in their body each day as the end of their life unfolded. Their cancer was theirs, alone, to fight. And though I was an expert advisor, their cancer battle strategy was theirs to decide.

The Stickiness of Capacity

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“It’s my religion, my decision!” they yelled as the elevator doors closed, the climax of their escape (though no one was stopping them) from the hospital. They often spoke in rhymes. Where they would go and what condition they’d be in when they got there were mysteries. They’d been in the hospital for almost 2 weeks as we tried to find a safe place for them to discharge to. Their house was in such disrepair that their electricity had been turned off because leaving it on was a fire hazard. They’d had frostbite before, and winter was near. Their mental state was such that we did not believe they could make safe decisions for themselves. They had no way of getting home without our help. Despite all these features they were not in immediate danger of harm and so we had no legal grounds to keep them when they decided they were ready to leave the hospital. We tried to convince them to stay, but they would not listen. They were ready to leave; they wouldn’t wait for us any longer, not even to arrange a ride home. We were worried that they were leaving without a safe plan, but the US medical system is not a jail system. Except for several clear situations, our patients are free to leave the hospital whenever they please even if their doctors think it’s a bad idea.  

Capacity, a patient’s ability to make informed decisions about their healthcare, is more complex than one might think. It’s grounded in the ethical principle of autonomy, which means that patients have the right to decide what happens to their bodies. To understand the complexity of capacity requires at least some understanding of the history of medicine and how we conduct medicine today.

Medicine was paternalistic historically (and in some places it still is). It also wasn’t, seemly, originally centered on doing what was best for patients. There are classic examples of medicine’s unpleasant history, among them: the Tuskegee Syphilis Study, Henrietta Lacks’ stolen cells, stealing corpses to supply cadavers for anatomy labs, and the history of insane asylums. Given its concerning past, there are strict laws outlining which patients can be kept in the hospital against their will and for how long. There are also laws ensuring patients are informed about the risks and benefits of their healthcare and allowed to decide if they would like to pursue or decline tests and treatments their doctors recommend.

When a patient doesn’t have the ability to make their own decisions (for reasons such as acute illness or chronic conditions like dementia) we say that they “lack capacity.” In such instances we identify a person who can legally make decisions on their behalf. Capacity is decision dependent – so a patient may have capacity to say they don’t want to eat lunch but lack capacity to decide to undergo vs. decline a life-saving surgery. Capacity also can be fluid, so perhaps an acutely ill person doesn’t have capacity initially but as they start to recover, they regain capacity. For patients with conditions like dementia, often capacity is never restored if lost.

In tricky cases like the patient described above, the healthcare system can do less than you might think. We can easily treat acute illnesses that are a complication of a patient’s confusion (such as frost bite) but we have few ways to help avoid frost bite in the first place. Hospital social workers can help find nursing facilities to offer at discharge, but seldom can we force patients to go to a nursing facility if they don’t want to go. It’s also worth noting that we do not have the ability to find housing for people experiencing homelessness – so unless they need a short-term skilled nursing facility at discharge, we often have no choice but to discharge patients experiencing homelessness back to the street once they’re medically stable.

In these circumstances, sometimes those of us in healthcare are left with unsettling discharges either because our patients discharge even though we don’t think they’re ready or because we discharge them to the street (or to an unsafe home). In the case of the patient who yelled “It’s my religion, my decision!” as they made their dramatic exit, the patient declined our safe discharge ideas. Even though their medical decision-makers agreed with us, no one could force the patient to do something they did not want to do. After discharging the patient, we (their care team) found ourselves keeping an eye out for them as we drove to and from work. Our plan was to call Adult Protective Services if we saw the patient – because we all knew they had no way to get home. We couldn’t force them to wait for a ride and they had no money for the bus. We also weren’t convinced they knew how to get home. We all suspected they’d end up wandering the streets. As I drove on the lookout, I was reminded how limited our healthcare system can be. I was also reminded that balancing patient autonomy and medical beneficence is not always easy.

How does one deliver healthcare justly in an unjust system?

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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/

Moral Injury: Taking care of Sam

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Moral Injury

When I Googled “moral injury” the first definition that populated was, “Moral injury refers to the psychological, social and spiritual impact of events involving betrayal or transgression of one’s own deeply held moral beliefs and values occurring in high stakes situations.” The definition came from the site Open Arms which provides mental health services to Australian veterans.

You may have heard the term “moral injury” in the context of the military. However, moral injury is also common in other professions, not the least of which is medicine. The 3 reasons that are most prominent in my mind for moral injury in medicine are:

  • Our (the US) healthcare system is limited. Without universal healthcare our healthcare system is a commercial business where those with more money have access to care that those who are poor don’t. It means that the rich get better care overall than the poor regardless of the attempts of individuals working in medicine to deliver just care. The injustice comes because insurance and personal finances have the last word on any person’s access to medications, equipment, home health services, procedures, and surgeries. Without money in the US, you do not get full access to any of these health services.
  • Health is essential to wellbeing. Those who seek medical attention often have serious injury, life changing illnesses, and may be imminently dying. In medicine, we often take care of people at the worst time of their lives. We often deliver terrible news. We don’t always have good outcomes.
  • Healthcare is about people and every individual has their own beliefs and values. The doctors, nurses, and others taking care of a patient have different beliefs/values than the patient and each other. I’ve never had an experience in healthcare where every member of the healthcare team and the patient all had the same beliefs and values. And, in truth, I don’t think it’s possible.

I’ve experienced moral injury multiple times in my medical career. Sam’s case illustrates how my questions related to wellbeing and differing beliefs/values while caring for a patient opened the door to my moral injury. The injustice of commercial healthcare I’ll leave for another day. I’ve modified the details of Sam’s case (including the patient’s name) for patient privacy.

Taking Care of Sam

Sam came to the hospital because they believed their nursing home was abusing them. They were bedbound. They could feed themselves (if someone brought them food); yet they didn’t eat much. Were they refusing to eat because they didn’t want to or because it was uncomfortable to eat for some medical reason? They ate just enough to stay alive but not enough to thrive. In the time I cared for Sam, they became weaker and more confused partly from malnutrition. They also refused their medications. Did they have the right to refuse to eat and to refuse their medications even if it would hasten death and worsen their condition?

It was possible that Sam could live for 40 years more. Given their condition, would they want to live for 40 more years? Sam had days in which they understood what was going on. Yet, they often forgot things. Sam sometimes answered questions correctly and sometimes their thoughts trailed off to a land that was only barely understandable. How confused was Sam? Eventually it was decided that Sam couldn’t make their own decisions because they were too confused. The only person in the world who knew Sam outside of their healthcare team was an ex-partner. The ex-partner was designated as their legal decision maker because there was no one else.  Was an ex-partner the right person to decide what Sam’s medical treatment should be? Did this ex-partner have any idea what Sam would want in complex situations they had never talked about?

Sam was full code and full interventions per their ex-partner’s decision. This meant that every intervention Sam needed for their multiple medical conditions was to be pursued even if it caused discomfort. To do this Sam needed an IV. Sam pulled out every IV we placed (so they pulled one out about daily).They also pulled out multiple more permanent lines (basically deeper IVs that access bigger veins and are often held in place by stitches). We kept replacing the IVs. Was Sam pulling out the IVs because they were confused or because they didn’t want them?

As Sam’s nutritional status worsened and they missed more medications, my team suggested placing a tube in Sam’s stomach so that they could get proper nutrition and medications even if they refused to eat and didn’t have an IV.  Most days when I talked about this feeding tube with Sam, Sam said they didn’t want it. Did Sam know what they wanted? The ex-partner decided that Sam should get the feeding tube in case it helped improve their condition. They got the feeding tube. Did we know what was best for Sam?

Not long after Sam got the feeding tube, they went to the intensive care unit because their blood pressure was too low. They were placed in medical restraints (basically tied to the bed) so they wouldn’t pull out the IV through which they received a medication to help increase their blood pressure. Without that blood pressure medication, they might have died. That medication had to be given through an IV. Were the medical interventions we did for Sam helping or hurting?

Sam hated the restraints. They screamed, pleaded, and cried for us to take off the restraints. Were the restraints doing more harm than good? They screamed and yelled that they didn’t want any of the interventions that we were doing. Was Sam aware enough to know what they did and didn’t want? Sam could tell you their name and where they were; they’d lost track of why they were in the hospital, the month, and the year.

Sam survived and eventually returned to the regular hospital floor before being discharged to a nursing home. Sam’s hospitalization lasted months before a nursing facility accepted them. Did Sam want to prolong their life even though that meant going to a new nursing home? Would they have preferred to be made as comfortable as possible without medications and without being forced to eat? Would anyone ever truly know what Sam wanted? Would Sam’s right to make their own decisions ever be regranted?

Despite doing everything medicine could do for Sam, I’m still not sure if any of it is what Sam wanted. I’m still not sure if we did the right thing. And because of these uncertainties, I’m not sure if Sam’s case broke several of the most important principles of medical ethics: patient autonomy, do no harm, and beneficence.