<pHave you had a patient or family of a patient who seem to know the diagnosis and prognosis, yet they react as if they do not completely understand? How do you handle a situation like that?</p
“That one, Mommy.” Jake pointed to the book we’d bought that afternoon, The Tale of Peter Rabbit by Beatrix Potter. My husband and I wanted to read all of the classics to our children and this was the next one on our list. I picked up the book, thinking I must have read it as a child, though I did not remember much of it. We settled onto the couch, and Jake leaned against me. He pointed to the beautiful picture on the cover and we talked about the funny jacket worn by the rabbit. I opened the book and started to read with as much enthusiasm and animation as I could. We laughed over the names of the rabbit children: Flopsy, Mopsy, and Cottontail, but especially over the rabbit named Peter because that was Grandpa’s name and didn’t he have big ears too? I was enjoying our time together when I read the next paragraph:
“Now, my dears,” said old Mrs. Rabbit one morning, “you may go into the fields or down the lane, but don’t go into Mr. McGregor’s garden.
Your father had an accident there; he was put in a pie by Mrs. McGregor.”1
Oh my, I thought. If Mr. Rabbit was put into a pie, I knew what that meant; how would I explain it to Jake? But he did not stop me to ask for clarification. If he didn’t make the connection, should I? I paused for a moment, then turned the page and continued reading.
As I interacted with a patient and her family recently, I remembered the day I read the story to Jake. Cindy had metastatic breast cancer and was hospitalized with delirium and pain. On admission, her calcium was 14 mg/dL. At home, she had a rapid deterioration in her mental status and an increase in her pain. Her family brought her to the ED, and she was admitted.
She arrived on the oncology unit in fragile but stable condition. The medical oncologist was clear with them about her disease progression. Cindy was not a candidate for further treatment. She was too weak; her performance status was too low. I heard him say, “She isn’t doing well. I recommend hospice.” He used a concrete but gentle approach. Everyone nodded, Cindy’s family knew she would die from her cancer; that part was clear, but oddly, it was the steps in between that confused them. They were focused on more chemo, believing all of her other problems—her hypercalcemia, her confusion, and her pain—would be resolved if she had more chemo. Henry, her husband, said, “The chemo helped before. If she gets more chemo then she can get stronger again.” In his mind, the oncologist was not listening and recommending hospice meant they were giving up. “Doctor, it isn’t her time yet.”
The medical oncologist recommended a palliative care consult to help with this “difficult” family. I’ve heard it said, “There are no difficult patients, only difficult situations.” This was a difficult situation. We arrived in time to hear the end of the conversation between the family and the doctor. The oncologist excused himself and all of us turned and watched as he walked away. Henry said to us, “That doctor makes me so mad.” He paced the room, ran his hands through his hair. He had brown eyes, warm mahogany, but the lines around them were creased red with frustration. He stopped pacing and stood on the far side of Cindy’s bed, gripping the side rails tightly and repeated what we heard him tell the doctor. “She needs more chemo. I know it’s bad, but I know she can get stronger.” We knew the futility of more chemo and the negative consequences. All of the signs were there. But the signs that were obvious to us were not apparent to Henry; he was stuck in the middle part, the part of the conversation that did not make sense. Cindy was confused, but Henry was also confused.
When the medical oncologist said Cindy was not doing well, Henry did not disagree. He nodded as if in understanding. He knew she would die from her cancer, but he had missed some of the steps in between. Because Cindy was agitated by too much stimulation, we met in a conference room. But before we could get to the details of that middle ground, we needed to allow the family to voice their frustration. Getting to the heart of their misunderstanding took time; each layer had to be carefully peeled away. What the family wanted, more chemo, differed from what the medical oncologist recommended. The conflict led to a stalemate. To traverse the impasse required the palliative care team to reassess what the family understood.
Since Cindy had had a response to chemo, her family was focused on her resuming chemo and struggled to accept that it was no longer an option. A gap in understanding existed. Our job was to be certain Cindy’s family understood the full picture. As in the story of Peter Rabbit, the middle part was missing. They may have understood what would happen in the end but not how Cindy would get there; they had no understanding of the physiologic cues we saw. Once they had a chance to air their concerns, the meeting shifted to a discussion of Cindy’s current situation. The impact of her hypercalcemia was explained and what it portended, as well as an explanation of her performance status, contextualizing the details and teasing out the parts they seemed to comprehend but actually did not. Cindy’s family was trapped by their lack of understanding and so they reached for what they did understand: chemo had worked before.
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What do you do when it is clear that a family does not understand what is happening?
How do you assess for understanding?
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