She was not my patient. Actually, she was nobody’s patient, she was just a wife; she was “the family.” She was a rough, stern looking woman, and with good reason as she had weathered many difficult times. Her husband had been severely demented for many years; however, it was only in the past few months that he required such intensive inpatient care. He was not conscious or communicative, but he was clearly in pain from the gaping, gangrenous sacral ulcer that his prolonged hospital stay had cost him. His hospital course consisted of trips to the operating room for more debridements and antibiotic treatment for subsequent re-infections. John Trahanas
As medical students we heard about him on rounds, but we had never actually seen him. He was just one of our “rocks;” there were more interesting cases with better teaching points that we could follow. I used to see her though. She would walk around the hallways, and I wanted to talk to her, to let her know that there was someone she could feel like she knew. I tried to say hello to her one day, in Greek, but I doubt that she heard my softly spoken “Good Morning.”
Her husband was scheduled for another debridement, and the team felt that it would be best if he could leave the hospital immediately following the procedure to avoid another multi-drug resistant infection. They also wanted to have a discussion with her about goals of care. Maybe it was time to start thinking about how this man could find peace. It made sense to me. So many healthcare resources and dollars are spent on patients who can no longer benefit or be improved, despite our best efforts. Families need to realize that when their loved ones can no longer respond and cannot be salvaged, that the battle has been lost. Sometimes, everything should not be done.
She did not agree, didn’t want to talk about it. She was not being cooperative. The team thought it might be because she simply did not understand. Perhaps if someone could explain our reasoning to her in her own language, then she would be more receptive. “Hey John, you speak Greek, right?” Sure, I thought. True, I didn’t know medical terms, but I was fluent. I’ll just explain to her that this was the worse place for him to be, that we could only make him worse while he was here in the hospital. It made sense, we just needed to explain it to her.
She saw me walk in and gave me the look of disapproval she had been sharing with most of the staff since the development of her husband’s ulcer. I think it startled her to hear her own language come out of my mouth instead of something only vaguely familiar. She opened up like a floodgate. She hadn’t had anyone to talk to and now, she finally had someone who could listen. She told me her husband’s whole story: how he had finished college in Greece; how they moved to the U.S. together but still visited in the summers; how they had opened a diner in Long Island. I knew this story, it was my family’s story, the same story of so many other immigrants. I felt like I knew her, and it made it that much harder for me to listen to her tell me, with tears streaming down her cheek, about the Parkinson’s disease and the pneumonias and the puddle of bloody urine that had leaked onto the bed but was ignored by our staff.
She explained to me how guilty she felt for bringing her husband to the hospital. If she had never brought him here, he would have never gotten the ulcer, and then she could have taken care of him at home. Now, she had nowhere to take him. She told me how the doctors told her he was at his end, and that more treatment would only prolong his suffering. She told me how the doctors didn’t care that he would still perk up when he heard his daughter’s voice, or her voice. They thought she was being difficult when she refused to talk about the goals of care for the man who had treated her so well for so many years. She told me that no one acknowledged the fact that it was in this hospital that he had gotten the ulcer that was eroding his body and her spirit, and instead of wanting to continue helping him, they had given up. They wanted to send him away and wash their hands clean of him. She told me all the things the doctors had said to her, the same things I had come to say.
I knew that we were not as heartless as she made us sound, and that what we wanted was not to be rid of the man, but to make sure he didn’t get infected. It was logical, it made sense. But instead of getting through to her, she got through to me. I realized that it was me, us, that didn’t understand her. This scared woman was desperate for her husband to be treated right and not to be abandoned. I’m sure that’s what all families want, not to be abandoned when the end really is near. That’s why she did not want to speak with palliative care, and why she wanted everything possible done for her unresponsive spouse.
Logic may tell us that our efforts our futile; however, for the first time I realized how hard it can be to justify that standpoint when looking into the pleading eyes of frightened families. I saw how one might feel the same obligation to treat their pain as much as the patient’s. I haven’t seen any guidelines for this situation in any of my pathology, pharmacology, or physiology books, and I imagine that in the future, I will have to use my own judgment to balance science and empathy. What I do know is that we as the medical team could have done a better job of making her feel less deserted while she struggled through her husband’s hospitalization. I don’t know if that would have helped her to see past her fears, to realize that we did not want to abandon her or her husband, but that we only wanted what was medically best for him. I can only hope that my talk with her, however brief, had given her a chance to reflect and express her grief.
One comment on “Tales of Survival: The Rock’s Wife”
I appreciate John’s story, and his realization that it was the team that didn’t understand – the patient’s wife had indeed chosen goals of care, they just didn’t fit with the team’s preconceived notions. It sounds like what they really wanted was for her to see things their way. This dynamic creates challenges in the care of many patients. It escalates conflict and adds stress and tension. As providers, when families or patients prefer care that we think is beyond reasonable we need to ask them why – elicit their goals, continue to engage in honest conversation and information exchange to be sure they understand the true facts of the case, but ultimately everyone is better served if we adopt rather than resist the stated goals of the patients/families (unless those goals conflict with the known preferences of the patient).
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