In today’s world of Facebook, Yelp, online communities, forums and rating websites, there are plenty of opportunities for patients to communicate their complaints and opinions publicly about their medical experiences — both good and bad. Yet, for the most part, patients tend to reserve their feedback for family and friends, unless specifically asked.
Barriers such as…
- Public website criteria for critiques
- Physicians’ particular sensitivities about their reputations (e.g. requiring that patients sign agreement promising not to post comments on public sites, even though these agreements may not be enforceable), and
- The “risks” to dissing providers publicly, or even, conceivably, being sued
can be deterrents to the public communication of patient complaints
In addition to the above barriers, there are the deterrents of time and energy. Creating an effective factual, verifiable description of your problem or complaint, searching for the appropriate website, or composing a letter to the hospital president, the physician or to the clinic manager take too much time, energy.
A Personal Story
I’ll never forget my experiences a couple of years ago when my husband had a life threatening bout with MRSA/sepsis. In an earlier blog, I mentioned a few of the particulars of our experience in the registration/triage areas of the Emergency Department before my husband was admitted to the hospital. But the story didn’t end there. Although he went on to be seen by a wonderful ED physician who suspected the seriousness of my husband’s condition, and to have excellent doctors in the hospital who put him on the road to recovery, when my husband was discharged 17 days later, late in the day, with a PIC line and orders for IV antibiotics twice a day from a home infusion provider — things fell apart. No antibiotics were delivered. No nurse was assigned by the home health provider to administer the first three IVs, or teach me how to do it. How did this happen?
Unbeknownst to us, the infusion company was confused about my husband’s unusual drug coverage and came to the erroneous conclusion that he had no coverage. As a result, the infusion company did not deliver the antibiotic that was ordered. Then the staff member responsible for verifying his insurance failed to inform the company’s care coordinator, the hospital or us about the problem before discharge. To make matters worse, the infusion company did not make arrangements with an approved home health company to provide the nurses who would manage my husband’s care or administer the first dose of antibiotics.
Faced at home with this stressful situation, the natural response of most patients and families would be to call the primary care doctor and/or return to the ER. But, it was evening, and my husband refused to go back to the hospital. Rather than fight that battle right then, I started making phone calls.
Fortunately, because of my prior experience in hospital management and some (limited) understanding about insurance coverage, I was able figure out whom to call, what questions to ask, what to say and what to demand. Nevertheless, it took an enormous effort on my part, including multiple phone calls, pleading, offering to pay cash for the medicine, and even screaming at people to persuade the infusion company’s regional manager to approve having several doses of the antibiotic delivered and to get a nurse from the home health company to our home late that night.