A specter from the implementation and demise of the ACA

Danny rarely came to the clinic. He paid a sliding scale fee for the visit but this, in addition to the money he paid for his medicines, was already too much for him to afford. Now, in early November 2013, he had become concerned.

Danny had previously owned a jewelry boutique with his wife, Jacky. She made her own pieces and sold them in the store. Over time, the economy had turned. They could no longer keep the business afloat and had to close. Over the years, Danny had wrecked his body with a slow burn of alcohol excess, but several years ago he had been able to mount a recovery and prided himself on his revival. His liver was now cirrhotic and his heart weak, the combination of which had inflicted a heavy toll on his kidneys.

I stepped out of the last encounter and tried to clear my mind as I scanned the next chart: “follow up appointment.” We had never met. Danny and Jacky were seated, patiently, expectantly. It had been a busy day. They all were. I greeted them and dove into the chart, reviewing medications, appraising old cardiology notes, assessing lab values, pointedly interrogating with increasing frenzy as I attempted to grasp the complexity of his condition. Danny had been scraping out of pocket for a few essential generic heart and liver medications. Trying to fortify his health, he took a variety of vitamins and supplements that he had heard of or had been suggested, mostly because they were far cheaper than ordinary pharmaceuticals. He knew his condition was tenuous, but he tried to maintain himself within his meager means and hoped for the best.

Now, he had developed a progressively irritating sore in the back corner of his mouth that had begun to feel raw and tender when he swallowed. Jacky had noticed that he had begun to lose weight. I looked in his mouth. I had been out of training less than a year, but I had already begun to develop that particular sense when something was wrong. It was a certain reserved apprehension on the part of the patient that isn’t immediately recognized until you see something that just shouldn’t be the way that it is, then, a slight feeling of sick gravity deep in your stomach. I knew what it was as soon as I saw it. I steadied myself and told them what I thought. “We will need to do more testing and evaluation, but … ” They had already suspected it themselves.

Danny and Jacky had been concerned about his health for some time. Until recently, they had been going on as they had been for some time. Collecting and rationing funds between doctor visits, rent, medications, groceries. In 2012, the Affordable Care Act had been upheld by the Supreme Court. The exchange marketplace had opened in October 2013, and they were of the first to sign up and now waiting for their coverage to begin on January 1st. It literally could not have come soon enough for them, and today, they were preparing to finally be able to access the care they desperately needed and hoping they could hold out long enough to receive it.

Between November and December of 2013, I kept in close contact with them. I had advocated on their behalf with our caseworkers, called major university programs that advertised free care programs, combed the Internet and polled my colleagues asking for advice and suggestions for resources. Nothing bore fruit. Meanwhile, Danny had continued to lose weight. He was requiring morphine to be able to swallow enough food to sustain himself. I could not help but feel responsible for him, but really I was powerless to do anything other than preside over his demise. I felt angry and betrayed by our system, but there was no one to blame.

In January, Danny was seen in the first week by an otolaryngologist. He had an urgent surgical consult the same day, and before long, he was booked for surgery. The biopsy had shown invasive squamous cell carcinoma. For me: concern and relief.

When I saw Danny and Jacky back in the clinic, he had had his entire tongue removed and could no longer speak. Part of the soft tissue of his face and neck had been removed giving it a shallow sunken-in appearance. He had a feeding tube in the right side of his abdomen where he now received his nutrition. Despite his condition, he smiled. He was glad to be alive and glad to be able to spend more time with Jacky. He no longer had pain, and they no longer carried the burden of uncertainty. Neither did I.

The month after that, I only communicated with Jacky a few times, mostly questions about medications or follow-up appointments, referrals. Late one evening an email came to my phone.  Jacky had sent me a desperate message and asked me to call her. I did immediately. She was in the ICU where they had been transferred. Something had gone wrong. Danny took a rapid turn for the worse and suffered a cardiac arrest. I spoke with the intensivist and knew immediately the situation was hopeless. “You may have to let him go,” I told her afterwards. She did.

I still see Jacky as a patient, and she has sent me Christmas cards every year since then. She adjusted as best as she could after Danny passed. She has diabetes and her own health issues. She still receives her care through an ACA exchange plan and comes for follow-up appointments when I ask her to. She takes her medications regularly. I wonder what will happen to her if she again has to choose between rent, food, and her health care. For her, and for many others; lately, I find myself praying that we won’t have to find out.

Daniel P. Miller is an internal medicine physician.

Image credit: Shutterstock.com

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