As news of Tom Brokaw’s cancer diagnosis spreads, so does his revelation that his cancer treatments cost nearly $10,000 per day. In spite of this devastating diagnosis, Mr. Brokaw is not taking his financial privilege for granted. He is using his voice to bring attention to the millions of Americans who are unable to afford their cancer treatments.
My patient Phil is among them. At a recent appointment, Phil
mentioned that his wife has asked for divorce. When I inquired, he revealed a
situation so common in oncology, we have a name for it: Financial
Toxicity. This occurs when the burden of medical costs becomes so high,
it worsens health and increases distress.
Phil, at the age of 53, suffers with the same type of bone
cancer as Mr. Brokaw. Phil had to stop working because of treatments and
increasing pain. His wife’s full time job was barely enough to support
them. Even with health insurance, the medical bills were mounting. Many
plans require co-pays of 20 percent or more of total costs, leading to insurmountable
patient debt. Phil’s wife began to panic about their future and her debt
inheritance. In spite of loving her husband, divorce has felt like the only
solution to avoiding financial devastation.
Each year in the United States, half a million Americans will be treated for burns so severe as to require hospitalization. The “survivors”—including more than three hundred children each day and a drastically increasing number of U.S. military members since the turn of the millennium—can be expected to undergo arduous, agonizing surgeries and painful rehabilitation lasting for years.
The emotional and physical trauma of these fellow citizens is not a pretty picture, nor is it an inexpensive one. According to estimates, patients with severe burns with no complications can expect a whopping $1.6 million bill for treatment over the cost of their lifetime. For patients who do go on to develop complications as the result of severe burns, hospital bills can run more than $10 million.
Where is that money coming from? Partly, it comes from you and me in the form of increased healthcare premiums. But oftentimes, it comes from directly people like me, the cofounder of the Moonlight Fund, a Texas-based non-profit organization for burn survivors and their families. We’re often tasked with raising funds to help with the costs of expensive procedures in addition to the emotional support and caregiver assistance our organization was founded for. Many times, I’ve reached into my own pocket—not because I’m a saint, but because I’ve been there. As a childhood burn survivor myself, scalded over 32% of my body, I’m well aware that infections resulting from burns—which occur in one out of three cases—add between $58,000 and $120,000 to treatment costs. Skin breakdown—which happens one out of two times—adds up to $107,000 more. Disfigurement and scarring? Up to $35,000 on top of that. Then, of course, there are the psychological issues associated with severe trauma. 57% of burn victims need help for these, help that costs as much as $75,000 per patient.
In an effort to help women make informed decisions about where to deliver their babies, we set out to collect a comprehensive, nationwide database of hospitals’ C-section rates. Knowing that the federal government mandates surveillance and reporting of vital statistics through the National Vital Statistics System, we contacted all 50 states’ (+Washington D.C.) Departments of Public Health (DPH) asking for access to de-identified birth data from all of their hospitals. What we learned might not surprise you — the lack of transparency in the United States healthcare system extends to quality information, and specifically C-section data. Continue reading…
A few weeks ago, I saw a young patient who was suffering from an ear infection. It was his fourth visit in eight weeks, as the infection had proven resistant to an escalating series of antibiotics prescribed so far. It was time to bring out a heavier hitter. I prescribed Ciprofloxacin, an antibiotic rarely used in pediatrics, yet effective for some drug-resistant pediatric infections.
The patient was on the state Medicaid insurance and required a so-called prior authorization, or PA, for Ciprofloxacin. Consisting of additional paperwork that physicians are required to fill out before pharmacists can fill prescriptions for certain drugs, PAs boil down to yet another cost-cutting measure implemented by insurers to stand between patients and certain costly drugs.
The PA process usually takes from 48-72 hours, and it’s not infrequent for requests to be denied, even when the physician has demonstrated an undeniable medical need for the drug in question.
These days Americans are more politically divided than ever, disagreeing vehemently about everything from guns to the role of the press. Despite the distrust and inflammatory rhetoric, there are examples of cross-party, trans-Administration collaboration and success. Let’s celebrate them and be motivated by what happens we put differences aside and focus on shared long-term goals.
Using digital technology to empower healthcare consumers is one example of a cross-party win, a still-developing success story that has been cultivated for more than a decade by the efforts of public and private sector leaders from a wide variety of affiliations and political perspectives.
I have a bias, I admit it. I am sensitive to studies with a subtext of “those stupid patients, what are we going to do about them?” Read the following rant with that in mind.
A pharmacy benefits manager a/k/a PBM funds a study of patients nonadherent to chronic prescription medication. The premise of the study, Effect of Reminder Devices on Medication Adherence: The REMIND Randomized Clinical Trial (hiding behind a paywall, by the way), is that “forgetfulness is a major contributor to nonadherence to chronic disease medications and could be addressed with medication reminder devices.” Thus, the intervention consisted of sending a population which included folks taking meds for schizophrenia and bipolar disorder either “a pill bottle strip with toggles, digital timer cap or standard pillbox” along with their mail order meds. There was of course a control group who received neither notification or a device. Surprise, surprise! Getting a prize in your Crackerjack box from your PBM does not improve medication adherence. Those stupid patients! Why won’t they do what’s good for them?
Leonard Kish and Eric Topol recently argued eloquently for patient control of a lifetime health record, adding their voices to the calls for patient ownership of health records, building on the foundational notion that ownership is necessary in order to assert control because “possession is nine-tenths of the law.”
I certainly agree that patient control of data is of paramount importance, but I am not convinced that we need to take the leap to patient “ownership” of data, and I am not quite sure what that even means in this day and age — or how it really differs from the status quo.
I’m less worried about the name we use for the bundle of rights a patient has with respect to his or her health data than I am about the vehicle available to exercise those rights.Continue reading…
These may sound like come-ons for the type of product typically hawked on late-night television. But in fact, they’re some of the things people are saying about OpenNotes.
OpenNotes isn’t a product, but an idea: That the notes doctors and other clinicians write about visits with patients should be available to the patients themselves. Although federal law gives patients that right, longstanding medical practice has been to reserve those visit notes for clinicians’ eyes only.
But Tom Delbanco and Jan Walker, a physician and nurse at Beth Israel Deaconess Medical Center in Boston, have long seen things differently.
Their personal experiences with patients, and inability to access care records for their own family members, persuaded them that the traditional practice of “closed” visit notes had to change. So, with primary support from the Robert Wood Johnson Foundation, they launched what has now become a movement.
In 2010, Delbanco, Walker and colleagues led a study in which more than 100 primary care doctors from three health systems began sharing notes online with patients. Patients got secure messages prompting them that the notes were available, and reminders to read notes before their next appointments.
Recently I wrote about the problems with Maintenance of Certification requirements. One of the phrases I read repeatedly when I was researching the piece was “the patient as customer.” Here’s a quote from the online journal produced by Accenture, the management consulting company:
Patients are less forgiving of poor service than they once were, and the bar keeps being raised higher because of the continually improving service quality offered by other kinds of companies with whom patients interact—overnight delivery services, online retailers, luxury auto dealerships and more. With these kinds of cross-sector comparisons now the norm, hospitals will have to venture beyond the traditional realm of merely providing world-class medical care. They must put in place the operations and processes to satisfy patients through differentiated experiences that engender greater loyalty. The key is to approach patients as customers, and to design the end-to-end patient experience accordingly.
Except for one thing. Patients are NOT customers.
The definition of a “customer” is a person or entity that obtains a service or product from another person or entity in exchange for money. Customers can buy either goods or services. Health care is classified by the government as a service industry because it provides an intangible thing rather than an actual thing. If you buy a good, like a car, you voluntarily decide to shop around and get the best car you can for the price. Even a vacation, especially a vacation package or a cruise, is a good. A nice dinner, while a good in the sense of the food, is also a service. You buy the services of the cook and servers.
Here is why the patient shouldn’t be considered a customer, at least not in the business sense.
1. Patients are not on vacation. They are not in the mindset that they are sitting in the doctors office or the hospital to have a good time. They are not relaxed, they have not left their troubles temporarily behind them. They have not bought room service and a massage. They are not in the mood to be happy. They would rather not be requiring the service they are requesting. Which leads to number 2:
2. Patients have not chosen to buy the service. Patients have been forced to seek the service, in most cases.
3. Patients are not paying for the service. At least not directly. And they have no idea what the price is anyway.
4. Patients are not buying a product from which they can demand a positive outcome. Sometimes the result of the service is still illness and/or death. This does not mean the service provided was not a good one.
5. The patient is not always right. A patient cannot, or should not, go to a doctor demanding certain things. They should demand good care, but that care might mean denying the patient what the patient thinks he or she needs. The doctor is not a servant; she does not have to do everything the patient wants. She is obligated to do everything the patient needs.
6. Patient satisfaction does not always correlate with the quality of the product.A patient who is given antibiotics for a cold is very satisfied but has gotten poor quality care. A patient who gets a knee scope for knee pain might also be very satisfied, despite the fact that such surgery has been shown to have little actual benefit in many types of knee pain.