Dr. Platon asked Connie to step into the hallway, leaving Ben alone in his ER patient room. Dr. Platon told Connie that Ben was dying, that any pursuit of treatment was futile, and that his liver had completely stopped functioning. Connie was dismayed. They had originally come to the hospital that morning to be cleared for gall bladder removal the following day.
2. Considering Current Definitions of Health Literacy
Connie was left to tell Ben about the change in surgical plans, and had to describe some version of what Dr. Platon told her. Ben became angry and insisted they leave the hospital. As they were walking down the hall, Dr. Platon intercepted them and spoke with both of them this time. He told Ben that he had some kind of cancer, and that he was referring them to a regional cancer center to be ‘diagnosed and staged’.
3. Conceptualizing Relational Health Literacy
Ben was diagnosed at the regional cancer center with adenocarcinoma of unknown primary site, an aggressive metastatic cancer. It was Stage IV. He had not eaten for 7 days and was struggling to drink. Unlike Dr. Platon, oncologists there did not offer suggestions about abandoning treatment, and instead referred him on to a comprehensive cancer center in southern Texas. This would mean a 10-hour grueling car ride.
Connie wanted Ben to live and to receive treatment. She had two disparate diagnoses and descriptions from providers about how Ben could navigate this illness, and was eager to act on the second version—treat and survive. Once in south Texas, Ben continued to worsen. He was too weak to sit in the clinic waiting room before his appointment, and Connie went alone instead with Ben’s records.
Connie met with Dr. Brown, a gastrointestinal oncologist. After a great deal of resistance, Dr. Brown acquiesced to Connie and ordered a round of chemotherapy for Ben. The infusion would start that evening if Connie could complete the payment for it before billing closed at 5 pm.
In a span of less than 10 days, Connie and Ben had entered a new universe of cancer and fear. The first chemo infusion ended early, as Ben became violently ill. He took to his bed at the hotel, and Connie waited for improvements or their next appointment, whichever might come first. They knew no one in South Texas, and they knew no one with cancer. Their hotel was far from a grocery store as it was located in downtown Houston, and Ben was too sick to be left alone.
Ben never got out of bed after his one and only chemotherapy treatment. Connie had completed the payment for $12,000.00 using their bank card. They were between health insurances and had no coverage. Both Connie and Ben were wealthy, and were in a unique position to pay outright for the single treatment. Despite their wealth, Ben and Connie were stuck in a hotel across from the hospital, and the only place to go for help was the ER. After three days of watching Ben writhe in pain, unable to take liquids or eat, Connie chartered a private plane home to Oklahoma. Once there, she initiated hospice care on her own, without the support of Dr. Platon, their local physician.
4. Conclusions and Recommendations
Conflicts of Interest
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