The visit was supposed to be brief, a quick assessment of a minor complaint. One look at the patient as he sat to have his blood pressure taken told me that his minor complaint was not the major issue of the day. The patient, a man in his early 70’s, was a shadow of his former self. Once heavy set and strong, he now seemed gaunt and frail. Once vibrant, he now had the look of a man fighting for his life. And losing.
His appearance should not have surprised me. He had been diagnosed with metastatic cancer a few months earlier and in that short time had undergone two surgeries and 3 courses of chemo therapy. 70 pounds had come off of his 250 pound frame in just a matter of months. He was a very sick man.
It took less than a minute to diagnose the cause of the man’s immediate complaint (swollen feet due to poor circulation) and plan a course of treatment. Thinking I had dealt with that issue I decided to address the greater concern, his cancer therapy. "How is the chemo going," I asked.
“It is going well,” he told me, “the blood tests show that the tumor markers are decreasing.” He spoke with hope, as if this was a sign of cure. I knew in my heart and head that it wasn’t. The tumor marker levels had dropped from incredibly terrible to really bad. He wasn’t being cured, he was postponing his death. It bothered me that he did know seem to understand this. I wondered if he knew the grimness of his prognosis, if the cancer doctor had told him that this was the illness that would eventually take his life. I had little confidence that he had, as in my experience oncologists are often the worst bearers of bad news.
I decided to take some extra time with him to see if I could help him understand the reality of his circumstances. As a way of introducing the topic I talked in general terms about the difficulty some doctors have discussing bad outcomes. I supported my contention by taking about previous patients who did not know they were dying until their last days of life and by pointing out doctors wait so long to talk about dying that the on average, patients die within 2 weeks of being placed on hospice. I expressed my belief that it was not fair to keep patients in the dark about the seriousness of their illness, that people deserved to have clear explanations so they could make appropriate plans.
With that said, I asked what his doctor had told him about his treatments and the likelihood of success. Not unexpectedly, the oncologist had said nearly nothing. The patient did not have any idea as to what the likelihood of success or failure was with the current treatments. I told the patient I would call the doctor and get the information on his behalf. The visit ended with me making a promise to call back later in the day.
The oncologist returned my call within the hour. After the usual exchange of pleasantries I asked the question. “If you had 100 people like Joe in front of you today, how many would you expect to still be around 6 months from now?”
“Five,” was his surprising reply.
“Five with treatment, or without treatment?” I asked.
“Without treatment,” he answered, “With treatment I would expect 50.”
“How many after 12 months?” I pressed, wanting to know how serious my patient’s prognosis really was.
“25,” he said, confirming my fears. I thanked him for his time and hung up the phone, shaken by the news. Knowing the tendency of many oncologists to overestimate survival rates, and factoring in Joe’s weakened condition, I concluded that the 25% survival rate at one year was the best case scenario. It was highly unlikely he would make it to Christmas.
I paused and pondered how to communicate this information to my patient. As I did I opened the chart and saw that I had a phone message from Joe’s son. I was caught off guard by the words on the screen. “Please call daughter, Joe was very depressed and angry when he left the office.”
I called Joe instead. Joe was indeed angry with me. He told me that he did not want to hear bad news and that I should not have said the things that I did. He told me that I had not been kind, and that he liked his cancer doctor. “He gives me hope,” he said, “It may be false hope, but I like it.” I apologized for the hurt, telling him that determining the best moment to address life and death issues is difficult, and that I am often left dealing with the issue the only time I can, which is when the patient is in the office. As the conversation ended he pointedly instructed me to be more sensitive in the future.
His words stung. My desire to educate and enlighten, to allow him to make informed decisions about his care and to intelligently plan for his limited future had instead offended and shaken him. While I was correct in my assessment that he had not been well-informed by his oncologist and was in the dark about the gravity of his situation I had been seemingly equally ignorant in where he was emotionally.
I ruminated on our conversation for the next 24 hours, internally debating on how I could have done better. My thoughts went back and forth. I found myself arguing that patients cannot make informed decisions about their health care without accurate information, and then countering that patients should be able to choose when and how to receive that information. Hours of thought and prayer did not resolve the dilemma. The only certain conclusion I reached was that I wanted to do better.
I ultimately decided that I would be more cautious in the future. I would still ask people if they knew their prognosis but when they didn’t know ask, “Do you want to know?” before going further. It is not a perfect approach, but it may be better than how I approached Joe.
A few day’s later a patient who is a friend of Joe’s came in to see me. The first thing he said to me was, “I heard you saw Joe a few days ago. He wasn’t happy,”
“So I heard,” I sheepishly replied.
“Don’t worry about it,” said Joe’s friend, “everyone knows Joe is dying. He just doesn’t want to admit it.”
I held back a smile, grateful for the comforting information that Joe’s anger was at least in part due to the fact that he wanted to deny the seriousness of his disease. I may have messed up, but I hadn’t totally messed up.
In the aftermath of the difficult discussion, I am left pondering the challenges faces by doctors who find themselves having to discuss end of life issues with their patients. There is so much emotion, fear, and denial involved that effective communication is incredibly difficult and perilous. Doctors and patients need to realize this and extend grace, kindness and understanding to one another. As difficult as these discussions are we cannot fail to have them.
Update- 2 weeks after my visit with Joe he was hospitalized with severe pain. His oncologist finally admitted the truth, that there was nothing further he could do. Joe went home on hospice.
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