Palliative Care Discussions
Mr. Thompson sat in the bed looking fatigued. His yellow skin belied his claims at improving health. A drain snaked out from under his hospital gown to a container full of green-black bile. I was admitting Mr. Thompson, who presented to the hospital for inability to tolerate oral intake for the past 2 weeks. Two months earlier he had presented to his primary care doctor with the strange complaint of yellowed skin. Just a few days later abdominal imaging revealed the mass that was obstructing his bile duct. Shortly thereafter he met a surgeon who explained he was a poor candidate for surgery given his weight, his history of heart failure, and his chronic obstructive pulmonary disease. But, he was told, if his co-morbidities could be better controlled he might be a candidate down the road. In the meantime, they placed a percutaneous cholecystostomy tube to drain the bilirubin that was accumulating in his blood.
For most people, a pancreatic head mass is a death sentence. But Mr. Thompson was holding on to this glimmer of hope that was offered by his surgeon. Now, two months later, he was wasting away, in pain, with the expectation that he might still become a surgical candidate. I gently broached the subject of his prognosis, gauging what he understood. He planned to start exercising to get rid of the excess weight and improve his cardiovascular health. When I asked about his functionality at home he admitted that he had recently been confined to using a walker due to his health. He was convinced that if he got over this hump he might be able to exercise once again.
He actually was losing weight, but not in the right way. With his diagnosis, and resultant failing liver, came anorexia. Despite his obesity, his labs suggested he was malnourished in regards to his protein status. Inadequate protein and malnutrition is also a strike against surgery as wound healing would be poor. As we talked it became clear no one had really explained his prognosis, or at least not in a way he understood.
So I told him.
In the simplest language, I explained my fears for him – that he would spend the rest of his life planning on a surgery that likely would not happen. That he would miss opportunities with his family or not take advantage of what could be the last months of his life. Certainly I did not wish this for him and I truly hoped he would get the surgery he needed. But, as I explained to him, my motto as a physician was to prepare for the worst and hope for the best. We talked about alternatives to his current care and the role palliative care could place in his life. Until this admission, no one had brought this up to him.
At the end of our conversation he was visibly defeated. He cried and vented about the hand he had been dealt. I silently listened, offering what I could in support. He thanked me for my honesty and asked to speak with the palliative care doctors. I told him I wanted the surgeons to remain involved as well, and he agreed.
For the rest of the day I worried that perhaps I had overstepped my bounds. I had, after all, only just met him. And I was not an oncologist or a surgeon – perhaps he really did have a fighting chance. But how many people had I treated who received palliative care and hospice too late in their disease? Or worse, how many did I admit that died and never received it at all? Self-doubt plagued me the rest of the day as the argument raged on in my head.
That night, an hour after my shift ended, I got a page asking me to call Mr. Thompson’s wife regarding our talk that day. I worried she would be upset that I had destroyed his hope and I braced for a hostile interaction as I dialed her number. She answered in a calm voice and asked me to explain what I had told her husband that afternoon. I went through our conversation, allowing space for questions. She patiently listened and waited for me to finish. “Thank you,” she said, finally. “I have watched him go downhill since the diagnosis and I guessed that his prognosis was poor – but no one would tell us. I am so glad someone was finally completely honest.”
Breaking bad news is devastating. There are numerous times I have left a room on the verge of tears or driven home crying. In at least one circumstance I have cried in front of a patient. Too often I hear other physicians dance around the topic of prognosis – which is difficult. No one wants to pin themselves to an outcome or a number. But an educated guess is better than no information at all, which is why we tune into the weather forecast every day. That is exactly how I explain it to patients, trying to predict future health is like predicting the weather. Sometimes I will be right and sometimes I will be completely wrong, but I will never intentionally mislead someone to spare their feelings, or my own. All I can do is offer the information I have and my best interpretation of it.
When I last checked in on Mr. Thompson, just two months after our discussion, he was still alive but doing poorly. He was readmitted to the hospital and was found to not be a surgical candidate. Palliative care was following him and helping to improve the time he had left. Unfortunately, sometimes when you predict rain, it really does rain.
The weather-forecast analogy is AMAZING – a great post about a tough topic, all around.
Props to this physician for doing the job that so often needs to be done and yet does not happen
