Post 23: When to Consider Hospice Support - Example #1
Updated: Nov 30, 2022
"Physical therapy, get stronger, meet with hospice - that's a damn good plan."
John glanced at his father sleeping comfortably in bed. "We just had a visit on the telephone with Dr. R, his oncologist, thirty minutes ago before you came."
"How did it go?" I asked. This was my first palliative care home visit for Mr. V (read Post 1: What Exactly Does a Palliative Care Specialist Do?). I had read Dr. R's latest notes, where he stated Mr. V's cancer had grown despite the most recent cancer therapy and that there were no more cancer therapies to offer.
John replied in a reserved tone, "Dr. R told us to keep him home and work on getting him stronger. If we can get my father strong enough to go back to clinic, Dr. R will give us medication for any bone pain he might get for the cancer that's spread to the bones."
John also explained that he brought his father home from the hospital two days ago after the doctors in the hospital had told him, "Probably the best place for your father to be is at home with family."
"How has your father been since coming home?" I asked.
"Not good. He's sleeping most of the time. He's not waking up for my sister or for his grandchildren. He only took a couple sips of Ensure yesterday. At least he looks comfortable."
"How was your father one month ago?"
"Oh, he was good a month ago. He was walking with a walker. He walked into clinic! He was eating. Then he got hospitalized, and now he's like this. We don't want him to go back to the hospital."
"Can I ask, what do you want most for your father? What are you trying to do for him?"
"Can we talk about this, not in front of him?"
"Sure, let's step out."
I sat on the couch in the living room. John remained standing, pacing a few steps before responding.
"I'm his son. He's my father. I want to take care of him as any son would. He deserves respect -" John paused, blinked rapidly, and looked away. "He deserves respect. He deserves to be with family. He deserves to be comfortable. I'm just trying to take care of him as a son."
"It sounds like you're trying to give him comfort and honor his dignity as his son. What are your plans to do that?"
"We're going to do physical therapy and work on getting him stronger, as the doctor said. We're going to keep him home and not take him to the hospital."
"It sounds like getting your father stronger is an important goal for you."
I went on, "I'm worried that given how your father was walking last month and how he needs help now just to turn in bed, that physical therapy may not get him stronger. I'm worried that his weakness, sleepiness, and not eating is because of the cancer that's spreading."
"Yeah," John nodded again.
"Since it's important to you, I think trying physical therapy and trying to increase his calories make sense. You want to know that you did everything you could to get your father stronger and that you don't have any regrets later. Sometimes, if someone tries really hard to get stronger and instead gets weaker or sick again, they say, 'Keep me comfortable at home. I've been to the hospital, and it didn't help. I'm done with the hospital. I'm not going back. Just keep me at home with my family until it's my time to die."
"Yes!" John became the most animated I had seen him the entire visit. "That is exactly what we want. That is what I'm talking about."
"Okay, then the people who would help you do that for your father are hospice support at home. Did any of the doctors at the hospital or Dr. R or your father's primary care physician mention hospice support (read Post 2: Five Major Ways Palliative Care Differs from Hospice)?"
"Noooo," John slowly shook his head, "I would have remembered if they had."
"Well, if someone were receiving hospice support at home, hospice would become their new 911. So if your father looked uncomfortable on a Saturday night, and you didn't know what to do, instead of calling 911 and having the paramedics come and take him to the hospital, you would call the hospice nurse and they would talk you through what you should do to help make your father comfortable. If that didn't work, the hospice nurse would come to the house."
"Okay," John continued to nod slowly as he pondered this new information.
"It sounds like based on your goals of trying to get your father stronger, maintaining his dignity, and keeping him at home with family (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2), you are going to focus on physical therapy, encouraging him to eat whatever he wants to eat, and meeting with a hospice agency so you know exactly what they have to offer. It would be an education visit, like a meet and greet, and you could even interview multiple hospice agencies if you wanted. This way if you ever decided to transition to hospice support, then you would not be scrambling."
"Yeah, that sounds great."
"For now, if your father were to get really sick, instead of calling 911, you could call the hospice agency and enroll him in hospice and get him situated within a couple hours - any day of the week at any time - so that you could keep him home no matter what."
"I never thought about that, but that makes sense. So...the next steps are physical therapy, get stronger, meet with hospice - that's a damn good plan! Thank you. You were really helpful."
"Intensive care, hydration, tube feeding, life support, hospice care – these are merely the means to achieving a goal." —The End of Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One by David Feldman and S. Andrew Lasher Jr. (New Harbinger Publications, Inc. 2007)