Whether you view health care as a commodity or a basic human right, we should all agree patients are not well served by the current system in the U.S. We have lost sight of the patient in a dizzying sea of regulations, private and public organizations, financial pressures, and political realities. Despite spending 17.7% of our GDP or $3.8 trillion in 2019, we have some of the worst health compared to peer nations and few people are satisfied with the product they receive. It is past time to transition to being honest about our system and its shortcomings. We need to put the patient at the center of our care.
Putting the patient back at the center of health care means embracing unpleasant truths. We need truth in accounting. Patients and their families deserve to know how much their care will cost. In advance. Every time. We demand this at the grocery store of a $1.50 tomato. Can you imagine shopping at a grocery store with no prices listed?
Amazingly, we don't insist knowing the price of a surgery before we sign the consent forms. Or where we should seek care based on our insurance or out of pocket costs. Often the ER visit is far more expensive than an urgent care or primary care visit. Patients end up making expensive decisions — much more than that unlabeled grocery store tomato — without knowing these details.
The overwhelming costs of medical care are not just helpful to know but also result in significant medical debt. For many, health care-related debt is a crippling reality. The American Hospital Association estimates that Americans owe more than $220 billion for health care alone. This debt can have substantial effects, including bankruptcy, poor credit scores, and avoidance of future necessary medical care. We owe a real accounting of health care costs to our patients.
Being transparent also means admitting we have supply chain problems and can't use the best medications or equipment. Shortages in medicine are shockingly common. The FDA manages a list of ongoing medications that have availability limitations (think hundreds, not dozens). When a clinician faces a drug shortage, they either have to forgo the patient's treatment for a particular condition or search for a reasonable alternative. Neither of these options are benign. In one global review of the currently available literature, drug shortages were associated with numerous adverse events including medication reactions and even deaths. There were also sizable increases in costs, as much as 1,704% in one study.
Closer to my work as an ICU physician, we have to allow patients and their families to make fully informed decisions about end-of-life care. Sometimes this means admitting that the last round of chemotherapy will only extend their life, but not relieve suffering — it may even increase it. Other times, clinicians need to admit the challenges of accurate prognostication. There are some serious limits to what we actually know about the future. Our prognostic models have variable accuracy and clinicians tend to overestimate survival. Being realistic and transparent with families and patients about end-of-life care is a gift that assists them in planning for the inevitable end. I frequently meet patients and families who are surprised that the cancer spreading throughout the body is not survivable. As hard as it is, a diagnosis of a terminal disease should always be coupled with a frank conversation about death.
Finally, when patients have undesirable outcomes, we need to tell them the truth about what happened. For many years there has been a growing movement to provide honest disclosure about medical errors and unexpected outcomes. The traditional legal approach has been to "deny and defend," meaning that health care systems avoid disclosure of what actually happened to the patient. Federal programs like CANDOR challenge this status quo, encouraging us to tell patients the truth. Full and honest disclosure about adverse outcomes is not only the right approach but reduces litigation. Yet many health systems do not embrace this approach due to ongoing legal concerns about the litigative cost of telling the truth. Instead, they tell clinicians to provide minimal or no information to patients and families unless legally compelled to do so. This is a sad reality that we need to change.
I want to be honest at work. I want to work with systems that encourage honesty and transparency. More importantly, patients want to know how much their care will cost, what the alternatives are, how long they have to live, and what actually happened to them. I apologize to patients when they are harmed, and I tell ICU patients and their families when they have reached the end. We all need health systems and insurers to be transparent, too.
Let's work together as clinicians, institutions, insurers, and patients to make the system one we can be proud to work in. I am sure there is a way that patients can know their projected costs up front for non-emergency care. Cancer patients should be told their expected life expectancies and limitations of our treatments. We should admit to drug shortages. And when any patient is hurt in our care, they deserve to know the full truth and receive an apology. Trust in U.S. health care will not improve without greater transparency.
What's something you haven't been able to be truthful about with a patient? Share in the comments.
Colleen Naglee, MD, JD is a triple-boarded physician currently working as a neuroanesthesiologist and neurointensivist. She graduated from law school in 2023 with the goal to move into patient safety and risk management work. This article solely reflects her own research and perspectives and is not connected to any current, past, or future employer.
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