The abdominal mass was large. The prognosis was poor. Treatment was not for cure but for palliation of her symptoms. It was one of those “go home and get your affairs in order” kind of diagnosis. But she was relatively young, still a candidate for some therapy. And willing. Yet her desire for treatment was counterbalanced by her anger over her diagnosis. Cancer had entered her life too swiftly. During any conversation with her about her cancer, she nodded and repeated back information. She seemed to have a handle on things, yet as the days passed her anger and frustration increased. Louisa was distressed by any unexpected changes. A delayed procedure meant she’d been forgotten. When it was explained to her that her procedure was delayed because the one before lasted longer than expected she shook her head as if the explanation were an excuse. When the second round of chemo was postponed because her counts were low that was also taken as mismanagement.
Louisa had gone from being the lynch pin of a large organization to a person at the mercy of “hospital time” where everything just took so much longer.
By the time we were called in to meet with her for symptom management and a goals-of-care discussion she was dismissive. Surely, we were part of the disorganization to which she was continually subjected. Her husband was rarely present, working she told us, “and not to be disturbed.”
What is the connection between a helicopter and Louisa? None. And yet many things. The noise of Louisa’s diagnosis was deafening. Her attempts to make sense of it were thwarted by changes that we might all consider minor — a delay going to IR, for instance, that she took as part of the whole mess of her diagnosis and now her life.
We knew this and didn’t. Attempts to explain or soothe did neither. She might have been described as angry and in denial but those were facile explanations. She was overwhelmed in an overwhelming way.
Yet we were surprised by her. We walked in to the impending negative encounter naïve and open. We were there to help. But she shut us out very quickly. After an explanation of the role of palliative care we reviewed her symptoms and told her of plans to tweak some of her meds. That was acceptable. Then, because we know how confusing a hospital setting is and how daunting it is to have a new and terrible diagnosis, she was asked what her understanding of her disease was. Her answer surprised us because it skipped over so many steps, a long jump of epic proportions. “Are you telling me I am going to die?” She asked. Her leap to this place took a moment to react to. Very gently the physician member of the team said. “You have a very advanced disease …” Louisa cut her off right then. Her tone was sharp and so were her eyes as she glared at us. “Get out.”
We tried to regroup, tried to walk things back, but she turned her head away and said, “Please leave.”
We’ve been fired before. We’ve even been fired repeatedly by the same patient only to be asked back in. But with Louisa it was different. It was more than being fired. We were banished.