Michael is 12 years old. “Not hungry?” I ask when I enter the room, eyeing the plate. He doesn’t answer my question, but instead remarks with a lopsided grin, “You look funny.” I look sideways at [my reflection in] the mirror and see a yellow-gowned creature fumbling around. Michael is right. I do look strange, but these precautions are necessary because he is undergoing chemotherapy for metastatic Ewing’s sarcoma. He was diagnosed 3 months after he first saw his physician for leg pain. At the time, his pediatrician told him that he was having growing pains, and instructed Michael to call back if the pain worsened. Surprisingly, Michael’s pain went away after the visit. However, some weeks later, his pain returned with a new, burning intensity. Concerned, Michael’s mother made another appointment with their pediatrician. This time, the pediatrician attributed Michael’s pain to a sports injury and advised him to, “Ice the leg, take some Tylenol and call back if the pain persists.” While Michael felt somewhat better, a few weeks later when the pain began awakening him from sleep, Michael’s mother took him to the emergency room. The doctors ordered an x-ray of his leg, which showed “onion-skinning” lesions on his bone, a classic finding in Ewing’s sarcoma. A subsequent CT scan showed that the tumor had metastasized to his lungs.

In medical school, we are taught cost-effective care. On a population basis, x-raying every child with leg pain is not cost-effective. But on an individual basis, which parent given the choice would forego an x-ray even if the likelihood of their child having a tumor were small? Most children with leg pain do not have tumor, but what if he or she is in the minority? And even with the most rigorous of algorithms, some patients may have atypical presentations, and we may still miss the diagnosis. Michael’s mother blames herself. She believes that if had she pushed more aggressively for an x-ray early on, the tumor might have been discovered sooner.

In medicine, a perpetual struggle exists between preventing the most serious outcomes while not incurring too much costly, unnecessary testing. On my pediatrics rotation, one of my attending physicians taught me that the most important test was the “pillow-test.” In short, would I be able to fall asleep that night knowing that I had done everything that I could have for my patient? If I had been Michael’s pediatrician, would I have passed the “pillow-test?” Encounters with patients like Michael leave us wondering if cost-effective care for the population is at odds with delivering the best care for individuals. We can never “do everything possible” for a patient; we can only do our best—which is to order tests and services thoughtfully guided by outcomes from clinical trials. Ultimately the joy and challenge of being a physician is “doing everything possible” for our patients with limited information and resources.

(Lissy Hu,Costsofcare.org, 2010)

Considering costs while caring for patients can seem ethically murky, particularly when delivering cost-effective care is at odds with the desire to “do everything possible.” While most acknowledge that cost consideration is necessary, there is tremendous debate over whose responsibility this is. In 2014, Harvard neurologist Dr Martin Samuels was quoted in the New York Times, stating:

But if not doctors and other clinicians, then who? Certainly patients, policymakers, and administrators of payer and provider organizations must all play a role as well. However, as we have discussed, much of healthcare is left to the clinician’s discretion. Without defining an ethically coherent way for clinicians to consider cost, achieving the goal of the best possible care at the lowest possible cost may not be feasible.

Dr Samuels and others perceive an insurmountable tension between doing what is best for the individual patient (beneficence) and what is best for society as a whole (justice).² Every day in intensive care units around the country, patients at the very end of their lives may benefit from exorbitantly expensive care that nonetheless comes at high societal cost. Every day, clinicians struggle with tough decisions about the “right” level of care to provide. The need to also respect patient autonomy adds to the challenge. Occasionally patients may request expensive care that strains societal budgets without offering much benefit.³ For example, proton beam therapy is a much more expensive way to treat prostate cancer than other forms of radiation therapy. Yet despite any evidence that proton beam therapy is any better than x-ray radiation therapy, it continues to be requested and used all the time.^4,5

Lissy Hu, who wrote the anecdote above when she was a medical student, is not alone in her concerns about passing the “pillow test.” A large survey of American physicians revealed that 54% of physicians agree “cost to society is important in my decisions to use or not to use an intervention,” yet 78% felt that: “I should be solely devoted to the best interests of my individual patients, even if it is expensive,” and 85% disagreed that they should sometimes deny services to patients because “those resources should go to other patients who need them more.”⁶ To understand how we might deal with the tensions that clinicians face every day, this chapter reviews how the main principles of medical ethics can be applied to value-based care, how these principles are integrated into professional guidelines, and how we might reconcile concerns about “rationing” with a necessary path forward.

Medical ethics is not just about right and wrong—if only things were that easy. It is a rigorous academic discipline combining philosophy, history, sociology, and (in some cases) theology, which helps clinicians navigate the complex moral choices that are increasingly common in the modern era of medical practice. The basic principles of medical ethics are not new. In fact, they have been debated and refined by many societies over many centuries—the Hippocratic Oath dates to the 5th century BC. In the modern era of Western medicine, these principles have been consolidated into four, widely accepted “values”: autonomy, beneficence, nonmaleficence, and justice.⁷

The values themselves (described below) are relatively straightforward. It is the application of these values to practice that is challenging and where disagreement more commonly lies. As a result, the basic values of medical ethics guide clinical decision making but they do not automatically dictate the right or wrong answer. As we will discuss, in some cases, particularly with regard to providing value-based care, these principles can appear to contradict each other. The balance of these principles is often embedded in a clinician or institution or culture’s “normative assumptions.” Nonetheless, the four values provide a framework from which clinicians can argue for what the right balance should be.

1. 
   

   Respect for autonomy. The patient has the right to refuse or choose their treatment. The respect for autonomy is sometimes viewed in contrast to a more traditional “paternalistic” manner of clinical practice, where the clinician knows best and makes decisions on the patient’s behalf. Respect for autonomy also underlies recent efforts to empower patients to make more informed and assertive decisions about their healthcare (see Chapter 12).

   
   
2. 
   

   Beneficence. A clinician should act in the best interest of the patient. While this may appear to be easy for most clinicians, it is important to recognize that there are significant “agency” problems in the clinician-patient relationship, as we discussed in Chapter 3. Although clinicians are expected to act in the best interest of their patients, patients do not often have complete information about the value of care they are receiving.

   
   
3. 
   

   Nonmaleficence. “First, do no harm” is the famous credo of nonmaleficence and underscores the need to avoid tests or treatments that could be harmful. In addition to “medical harm,” patients may also face “financial harm” due to the high cost of their healthcare and treatments.^8,9

   
   
4. 
   

   Justice. This value concerns the fair and equitable distribution of limited health resources, as well as the ultimate decision of who gets what care. While the moral obligation to care for patients in a just manner appears straightforward, justice can often seem abstract and challenging to operationalize at the point-of-care.

The need for clinicians to take responsibility for the just distribution of healthcare resources is well-illustrated by a classic dilemma known as the “tragedy of the commons” (see Chapter 5) applied to healthcare resources.¹⁰ As former Harvard School of Public Health Dean, Howard Hiatt, highlighted, healthcare is no different than any other scarce resource, such as land or the environment. It is true that clinicians are primarily responsible for the care of the patient in front of them. But if every clinician only acted in the interest of their own patients, the ultimate outcome will not necessarily be fair and might cause the depletion of important common resources. Through this depletion, all patients end up being worse off. Therefore, justice is an effort to protect the “commons,” to ensure sustainability of the healthcare system’s resources for the future.

In considering whether clinicians should order a test, the decision is relatively easy when the test is both affordable for the patient (beneficence) and cost-effective for society (justice). There are many examples of this type of win-win care, such as the use of generic drugs, vaccination programs, and prenatal screening during pregnancy. Similarly, if it is clear the test is both unaffordable and potentially more harmful than beneficial to patients, and also not cost-effective for society, then the test should not be ordered. Ordering a mammogram for an 85-year-old diabetic woman with kidney failure would be one such example (see Chapter 14).

The decisions are much more challenging when the patient and societal interests are not congruent (Figure 6-1). Ethicist Robert Veatch highlights this challenge well:

Some have expressed skepticism that this challenge can be navigated in an ethically coherent way. In a recent Massachusetts Medical Society lecture, Dr Martin Samuels stated, “The important question is which master do we serve? … Simultaneously considering the interests of society and the individual patient represents an irresolvable conflict of interest….”

He has gone on to say in other sources that doctors who consider costs will ultimately lose their public trust and he advocates for a complete separation between those who provide medical care and those who consider healthcare costs.

One counter to these traditional views is that it is not the case that doing more for a patient automatically leads to better care. As we highlight throughout this book, overuse of medicine can be just as harmful as underuse in medicine. Moreover, although doing everything possible for our patients is an aspirational goal, it is rarely practically feasible. Dr Molly Cooke from the University of California, San Francisco has pointed out that we actually make implicit value-based medical decisions every day, such as how best to triage scarce resources like intensive care unit beds.¹² Such decisions are not based on the well-being of the single patient in front of us, but on the well-being of many patients that we also feel responsible for in tandem. The fact that these value-based decisions are currently “below board” is problematic because there is very little transparency about how they are made. The last thing anyone wants are clinicians who are making “rogue rationing decisions” at the bedside without a clear, explicit, and widely agreed-upon process.¹³