The halls of the 10th floor were busy as usual. Employees running around frantically trying to see all of their patients before morning rounding begins. Alarms, monitors, pagers, various machines all sounding simultaneously providing that ambient noise that we are all so used to hearing. As I approached Ben’s room for probably the 5th time this week I could hear another familiar sound. The sound of yet another disgruntled colleague discussing this patient’s decision not peruse hospice care, even after endless conversations trying to convince him otherwise. Ben is a 91 y/o male who suffers from Congestive Heart Failure, Pulmonary Hypertension, and many other compounding chronic illnesses.
Every day I visit this high spirited human being who is just trying to get back to his baseline, so he can continue living his life outside of these walls. He seems to understand his condition, and has been told several times over what his life expectancy at this point should be. He listens politely, and at the end of these conversations, the topic of hospice care is usually discussed. Ben seems open to the topic and frequently considers the idea of pursuing this form of care, but shortly changes his mind, and ends up back at square one. I find myself questioning why he constantly declines this care, and would prefer to repeatedly be sent back home, just to end up back in the hospital weeks later.
The following day I heard a different sound emanating from Ben’s room. As my resident and I entered we noticed two guests of the patient that we had not encountered during previous visits. Ben’s brothers were visiting today and they looked like they had a lot of questions on their minds. As we discussed the plan with them I couldn’t help but notice that his brother did not seem pleased with what we were discussing. His face was expressionless, cold, eyes focused his brother, and it seemed like with every fleeting moment he was becoming more and more upset. He finally interrupted our resident, and in a very angered tone, asked her why all of these people keep talking to them about sending their brother into hospice care. He stated that all they keep hearing about is how he needs do go to hospice because there’s nothing more we can do for him, and less about what we can do to help him get out of the hospital, and back home. I wondered if maybe his brother was confused about what hospice care really entailed, and if this was actually the core of Ben’s indecisiveness to actually pursue this form of care. His brother seemed very emotional about the topic, so were his emotions actually clouding his judgement and his capacity to council Ben on what was best for him?
After Ben’s brothers left for the day my team decided to sit down with him and discuss what was really going on. We wanted to get to the root of the problem, and find out what his goals of care were. While he did share his brothers’ point of view about wanting to go home and live a normal life, he knew that this was probably no longer a viable option due to his current health status. He finally opened up and shared with us that he can’t pursue hospice care because he feels like he’ll be letting his family down. He feels like if he chooses to pursue this form of care then he is practically giving up, and this will do more harm to his family than good for himself. I realized at that point that Ben was not trying to be difficult, he was actually being selfless by placing his families’ well-being ahead of his own needs, as many of us do so often.
After discussing with him further what the best options for him would currently be, I couldn’t help but wonder if the constant discussion of end of life care was doing more harm than good in this particular scenario.