A patient is admitted for pain control. He has diffuse large B-cell lymphoma. At this point, the pain has become so unbearable that he has relented in his fight to refuse all “establishment care” (as he called it) and allowed his wife to bring him “in to the system.”
They came to New York City from a rural area a few hours away, and were admitted to our hospital because he had a record of having been previously treated here. He was adamant that he didn't want a work-up, he didn't want treatment options, he just wanted pain control. It was clear that he was suffering tremendously.
We examined his record, and it showed that he began a course of conventional treatment six years prior, but completed only one cycle before being “lost to contact.”
He was bright, well-educated, clearly competent, angry, and in pain. He was scared and resistant to everyone and everything. He finally agreed to a work-up because the team refused to treat his pain without having some idea of what was happening, what they were treating, and how best to manage this aspect of his care. He relented: blood was drawn, scans taken, he was poked and prodded and questioned.
It turned out that he had been self-treating with coffee enemas since he quit the conventional treatment, and firmly believed that they were the source of his longevity with this disease. He had also been using a variety of other alternative treatments, including St. John’s wort for depression, and Melatonin for sleep regulation. For several years, he’d been medicating the pain with Tylenol and marijuana, but now, it had become too much to bear.
His goal was clear and firm: “fix the pain and get back home.”
His wife was also bright and well-educated, but she was sad, rather than angry, frightened of everything, with high levels of anxiety and untreated depression. She loved her husband and believed in him. She sat in my office and talked of the beauty of their home and land, but of the isolation and loneliness there as well. She worried that she wouldn't be able to get help for him if he became weaker, and if the pain would become a problem again after they returned.
She told me he wanted to “live or die” his own way, and that she supported him in his choices. She shared, almost as an after-thought, the “one little worry” that she did have, the one that looped through her thoughts again and again: “what will I do if he needs more help than I can give him?”
The team worked with both patient and wife. Attempts were made to explain the improvements in treatments and managing side-effects, to convince him to give conventional treatment another try. Discussions about hospice care were broached and rejected. The idea of temporarily moving into a town, where there would be more people around and more immediate access to medical assistance should he want that down the road, was raised.
He remained steadfast in his goal: “fix the pain and get back home.” His wife, however, was open to discussion, and we reviewed resources and plans of action available to her, friends and neighbors, hospice, the local doctor... We talked about ways to reach out and ask for help, and ways to grow a community, so she wouldn't be so alone with all that was happening.
A day came when the patient woke up OK and found himself OK the whole day long. Another came, and another, until he had a string of good days, and the time for discharge drew near. He felt confident that he and his wife could manage the pain patches on their own, and was eager to leave -- though, in the end, appreciative of the care.
They left quietly on the day of discharge, his wife looking a bit like that proverbial “deer in the headlights.” We never heard from them again.
It’s not always easy to honor the choices made by our patients and their families. I wonder what kinds of situations you’ve experienced where patient choices were challenging to understand or to accept.
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