Complex, Confusing Healthcare: One Story

Who’s Running the Show? Who’s Paying the Bills?

Photo by Curated Lifestyle for Unsplash+

Everyone who has dealt up close and personal with the American healthcare system has stories. This is ours.

My mother-in-law is 94 years old, and for 93 of those years she has been in great health, thanks to the physical discipline she maintained from her ballet career and her curiosity about all things artistic, cultural, and/or British. Several months ago, she moved from independent living to assisted living so she could get help with daily tasks like dressing, bathing, and preparing light meals.

But a month ago things went south. On a routine visit , her primary care doctor noticed that her thyroid readings were out of whack. My mother-in-law has been taking medication since her 20s to control her thyroid. Either the thyroid had gone rogue or, more likely, she hadn’t been taking the thyroid medication as directed for months – perhaps since she moved to assisted living.

Shortly after, healthcare professionals in her assisted living facility diagnosed her with a urinary tract infection (UTI). Then she experienced severe abdominal pain, and family members took her to an emergency room, where she was treated for the pain as well as for dehydration. She was admitted to the hospital for several days for continued treatment, then to a rehab facility to regain her strength.

In rehab her condition stabilized, but she seemed more confused than normal and extremely anxious. The rehab staff evaluated her and reported severe cognitive decline. A nurse practitioner working for her primary care doctor visited her and prescribed an anti-anxiety medicine.

Then she was returned to her home in assisted living, still confused, anxious, unable to sleep soundly. She was at risk of falling whenever she went to the bathroom, but she couldn’t always wait until the assisted living staff could arrive. The family hired a night nurse to stay at her bedside for the first week, with instructions to be sure she pushed the call button whenever she needed assistance (to get her in the habit). Somehow that message did not get through, even after three repetitions. The call button was never activated.

More Drama

That’s where it stands today. Family members hope the familiar surroundings of her assisted living home will help reduce the anxiety and reverse some of the cognitive decline. They hope that the abdominal issues were caused by the thyroid imbalance and will self-correct. It will take at least a month to know if those hopes are realized.

In simplifying the narrative, I have left out some of the drama – the bumpy transfers of instructions between institutions and doctors, the confusion over who ordered treatments for what conditions, the family’s difficulty getting clear information on what was happening, in order to make the best decisions, and above all, my mother-in-law’s discomfort and confusion as things happened to her and around her.

For me, the saga illustrates some of the fault lines in the American healthcare system – even when, as in this case, all the institutions and medical professionals involved are first-rate. The most obvious shortcomings are communication and coordination.

Who’s in charge? Multiple physicians are prescribing. Multiple facilities are providing care. Each is doing its job, within its area of specialization. Coordination is bumpy.

Each is communicating with the next institution in the chain, but the normal lag time between the care instructions and their implementation is about two days. The institutions say that’s how long it takes for every order to be documented for the patient’s safety (and for reimbursement). For the institutions, that lag is normal and justified. But for the family trying to navigate a loved one’s health crisis, it is frustrating. For the patient, the lag time can be dangerous.

Speaking of reimbursement: In addition to all the players on the stage, several more hover in the wings – private insurers, Medicare, possibly Medicaid eventually. Which services are covered? Which services must the family pay for? Which services will the insurers cover and which will they deny? These questions figure into every critical decision about care.

Meanwhile a fragile human being and her family are desperately seeking more information, sorting through conflicting reports and confusing events, sweating through the lag times, and trying to make informed judgments under pressure.

Coordinator

The one player missing from the scene is a care coordinator – a healthcare professional who understands the big picture — who can ensure that transfers from one institution to the next go smoothly, that prescriptions from different doctors don’t conflict, and that patient and family are kept informed each step of the way. Specialists we have in abundance. Coordinators with a broad overview, not so much. (This week, at a “care conference” with family, assisted living administrators, and medical staff, all parties agreed to make the primary care doctor (through her nurse practitioner) the provider of record – and in effect, the care coordinator).

But what can we expect from a healthcare “system” that in fact is a jerry-rigged jalopy slapped together from governmental insurance, private insurance, nonprofit and for-profit institutions, and medical providers?

If our system produced great outcomes, it would be one thing. But a report last year comparing American healthcare performance with those of nine other prosperous countries rated the U.S. system lowest on health outcomes. This despite the fact that the U.S. spends, by far, the greatest share of its economy on healthcare. It is not the first international survey to rate the U.S. system poorly, and it likely will not be the last.

The complexity of our patchwork system renders it more expensive and more confusing, without producing better health outcomes for patients. We could do better. We won’t, however, until we summon the political will to fix this substandard mess.