Receiving Good Healthcare Is Now A Patient’s Responsibility

Originally posted 11/29/2018

I ran into a few problems with my rental car on a recent family vacation. The “low tire air pressure” warning light came on twice in the first three days, and the car had absolutely no windshield washer fluid. Both problems were solved by visits to a gas station. When I got home I called Avis to complain, expecting an apology and perhaps a small adjustment on my bill. I got neither. Instead, I was told the problem was actually my fault. I was told I should have checked the tire pressure and the washer fluid levels before departing the rental car lot. When I explained that I don’t travel with a tire pressure gauge, and that I expected Avis to provide me with a car that had been checked over thoroughly, I was informed that the responsibility was mine. If I had concerns, I should have asked to have them checked before leaving the lot. Seriously? I actually attempted to do this during a subsequent rental, but my request to the lot attendant was simply met with a look of bewilderment.

None of this was a big deal, but it illustrates a trend I’m seeing in more and more places. It’s a corporate handoff of responsibility from the service provider to the end user. One of the prime areas where this philosophy is expanding is within our broken healthcare system. Uncovering hidden problems and solving them is now up to us! And when healthcare is the issue, not surprisingly, the problems can potentially be very serious as well as financially damaging.

Let me share a recent example. My wife and I were looking to get the popular new vaccine that prevents shingles, which is currently in short supply. Kaiser Permanente told me I should call in several times a week to several different locations to find out when a new batch of the vaccine had come in. I responded by asking to have our names put on a list of people wanting the shot, and suggested that they send out a group email when the vaccine becomes available. Not possible, I was told. Rather, I should waste my time making multiple calls, while someone on their end wasted much of their time answering inquires from scores of patients looking for the vaccine. Their suggestion would have been appropriate in the era before emails and robocalls, but today seems ludicrous for a huge healthcare organization operating over a large swath of the country. I eventually wound up speaking to a Kaiser representative from California, and was told that in their region they set up email lists and contact patients exactly as I suggested. That capability is lacking in my area for some unexplained reason.

This “push the responsibility onto the consumer” trend extends into a number of different areas, as detailed below. Many patients, especially the elderly or infirm, will be neither willing nor capable of assuming these tasks, but they won’t be given a choice. All of this is occurring at a time when the healthcare literacy of many patients is at a very low level. A recent study showed that the vast majority of patients read little to none of the information on side effects for a fictional allergy medication that they were being offered. This raises red flags about the ability of many individuals to take on additional responsibilities for their health care needs. Researching medical issues on the Internet, which most of us have tried, is often akin to swimming in an ocean filled with misinformation sharks.

Patients these days need to perform like Chinese acrobatic plate spinners, trying to balance a slew of active healthcare concerns while being continually asked to add just a couple more plates. Below I’ve listed just a few of the specific challenges we all face. Keep in mind that these new responsibilities are being piled on top of patients at a time when medical debt is the leading cause of bankruptcy in the U.S., and an estimated 42 percent of cancer patients will deplete their entire life savings in the first two years after diagnosis.

Challenge #1: Finding the right doctor/hospital combo. It’s nice to be able to look up hospital infection rates online when considering where to have a medical procedure done, but finding this information is difficult at best. Doctor ratings (such as provided by Consumers’ Checkbook or Best Doctor articles) are somewhat better than asking your neighbor which health care providers they like best, but again tracking down this info can be tough. I’ve noticed that on several healthcare network websites the “Doctor Profile” pages include a section that’s supposed to contain patient ratings (on a one to five star scale). I use the phrase “supposed to contain” because most doctors I looked at had exactly zero ratings. The greatest number of reviews I found for any one doctor was five. Given that many doctors will see 10 to 20 patients every day, it’s clear that this system is a sham since there should be hundreds, if not thousands of ratings for each doctor. Patients are clearly not being told about the option to add reviews, and I think this is deliberate on the part of their healthcare networks. Why don’t healthcare providers actually supply you with useful reviews of the doctors they are happy to employ?

Challenge #2: Making sure your providers are “in network” i.e. are covered by your particular insurance plan. I’ve never found anyone who could explain why this is the responsibility of the patient. We’ve all read the stories about patients having surgery done at an in-network hospital by an in-network surgeon, only to be billed later by anesthesiologists and/or pathology labs for work that, come to find out, is not covered by their insurance plan. The last thing a seriously ill patient facing surgery wants to do is try to track these people down in advance of their procedure. How would one even go about identifying them in advance? Instead of your doctor’s qualifications being your primary concern, the “are all providers in my network?” mantra becomes the foremost thought in your mind. Most patients only find out they’ve been treated by an out-of-network provider when their incomprehensibly written bills arrive. How would you go about requiring that you only receive treatment from in-network doctors? If I said that I didn’t want Dr. Jones as my anesthesiologist because he’s “out of network”, would someone juggle schedules and get Dr. Smith to serve instead? And suppose it’s a last minute change because Dr. Jones was sick on the day of your surgery, or you’re having an emergency appendectomy and have no idea who is treating you? This problem is solvable. California recently put in place a law to protect consumers from this hidden “out of network” trap. Though there are exceptions, insured individuals are only responsible for costs equal to what they would pay if they received the service from an in-network provider. Why isn’t it your insurance company’s responsibility to simply cover whomever happens to be providing your care that day?

Challenge #3: Having your test results interpreted for you. It’s nice to be able to send brief questions to your doctor and receive replies through an on-line patient portal, or to conveniently order a prescription refill. These portals, of course, are not available to many seniors or others without computer access. What I have a problem with is the communication of test results. Navigating the portal to review your test results (without having your doctor present) is often a fool’s errand. The policy on how test results are communicated varies between different medical centers. The one I use has the following policy printed on flyers that hang in the exam rooms: “If your lab tests are normal, you will receive a call or a copy of the results in the mail. If the tests reveal a concern, you will receive a call from your provider, nurse, or medical assistant to discuss treatment and follow-up recommendations.” This seems pretty straightforward to me, even though these rules weren’t always followed. The policy was quite different at the medical center where I received cancer treatment. Everything gets put into your chart, and you have direct access to it, including scan results and pathology reports. Do you think most patients want to review these at home without having medical personnel handy to interpret or put the information into context? I no longer review this kind of information at home because your entire life can literally hinge on the correct interpretation of a single test. I simply wait until my next scheduled doctors’ appointment to discuss the results. I know the idea is to empower patients by providing them with their own personal information, but this realm should be entered into with great caution. Nobody wants to see a patient commit suicide because they misinterpreted their test results. Why isn’t a doctor made available every time you have all-but-the-most benign tests done to interpret the results for you?

Challenge #4: Finding the clinical trial that’s right for you. Patients now often must take the lead in deciding what clinical trial is best for them, and whether or not they should participate at all. This puts a tremendous burden on the patient (few of whom will have any background in medicine). It’s heartbreaking when you consider that some of these decisions can be life or death, and making the “wrong” decision may prevent you from receiving other treatments later. Clinical trials have very stringent inclusion criteria, and patients who have received one treatment are sometimes not eligible for a different one to avoid confounding the results. A number of service providers have entered the marketplace to help patients vet clinical trials, but these are typically not covered by insurance. Their business models may be questionable. Driver, a high profile startup that matched patients with clinical trials, shut its doors only weeks after launching. Thankfully other groups exist, including CISCRP (The Center for Information and Study on Clinical Trial Participation), which is a non-profit organization whose mission is to get patients and their loved ones engaged with the clinical trial process. Why is finding an appropriate clinical trial so hard for so many patients?

Challenge #5: Figuring out how much your care is going to cost you. Most patients don’t have a clue as to just how expensive medical care is in America. The popularity of high deductible health plans presents an ongoing dilemma for enrolled patients. Most want to keep their health care costs down on their premiums, not always realizing that they may have to spend $14,000 or more on family medical bills before their insurance coverage kicks in. And those who pay top dollar for low deductible plans will be surprised to find out that many services (e.g. eye or routine foot care) are still not covered, and they may still have 30% coinsurance on hospitalization costs and 50% coinsurance on uber-expensive medicines. Why do they make it so hard to figure out what care is likely to cost me, and explain exactly what I’m being charged for?

Our healthcare system is in a state of flux. Most Americans would agree that our current system is too difficult to access and too expensive, even if they have insurance (and especially if they don’t). Congress recognizes this but has yet to do anything about it (indeed, healthcare was the number one concern of voters across the country this year). We clearly don’t have the best healthcare system in the world (currently ranked 37th around the globe by the World Health Organization), but we do have the most expensive one. Income inequality is not only forcing increasing numbers of people into homeless camps, but it’s also putting our health at risk in ways that would be completely unacceptable in most other industrialized countries. The abdication of the tasks outlined above illustrates how healthcare organizations have followed the lead of other industries. Sadly, they have abandoned many of their previously held responsibilities. As a result, the health of our nation is now more at risk, and more of our family, friends, and neighbors will sicken and possibly die. Let’s not sit idly by while this happens. Though the election is over, please contact your legislators and tell them just how important healthcare reform is for all of us.