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  • Jeanne Lee

Post 71: How Palliative Care Can Change a Life - Sliding Doors Moment #1

A “sliding doors moment” is a seemingly inconsequential moment that ultimately affects the trajectory of future events. In this post, I begin a patient story (written in italics) and describe how a sliding doors moment alters how the story proceeds (written without italics).



“This is a fairly straightforward admission,” the resident (physician-in-training) explained to her intern (first year physician-in-training), “Patient is 78 with dementia, coming in with altered mental status. ER workup revealed pneumonia. Start antibiotics for community acquired pneumonia, follow up on blood cultures, and let’s get a swallow evaluation due to suspicion of possible aspiration.”


“Got it,” the intern replied and rapidly typed in the appropriate orders.


Two days later, the daughter for patient Mrs. Z remarked to the intern, “My mom is much better, thank you. She’s always confused because of dementia, but at least she’s awake now. She’s more like herself.”


“That’s great! Now that she’s more alert, speech therapy is going to re-evaluate her swallowing ability. They should be coming by today,” the intern replied.


Later that morning, the intern received a page from Mrs. Z’s nurse. “Hi, Dr. A," the nurse spoke through the phone, “Speech therapy just recommended a feeding tube for Mrs. Z. She’s aspirating all textures.”


“Oh, that's too bad. Okay, thanks for the heads up," the intern looked down at his beeping pager, distracted, "I’ll consult GI for feeding tube placement.“


That afternoon, after work, Mrs. Z's daughter walked through the hospital, optimistic that her mother would be returning home soon. She stopped at the nurse's station to ask, "I'm daughter of Amelia Z. When the nurse has a moment, can she give me updates on how my mother is doing? I'll be waiting in her room."


An hour later, a nurse briskly strode into the room. "Hi, are you 'daughter’?"


"Yes, that's me."


"I'm glad you're here. I wanted to update you that the doctor ordered a feeding tube," the nurse stated matter-of-factly.


"A feeding tube!" Mrs. Z’s daughter exclaimed in shock, "That's pretty invasive. I'm sure my mom wouldn't want that."


"Well, your mother failed the swallow study. She's not protecting her airway when she swallows so she can't eat. You wouldn't want your mom to choke, would you?"


"No, of course not!"


"So that's why we're placing a feeding tube - so she won't choke."


"Oh my gosh! Is there anything else we can do instead?"


"No, I'm sorry, there really isn't. Your mom's dementia is fairly severe, and unfortunately we see this in many patients with advanced dementia," the nurse replied. She looked down at her watch. "Okay, I have to go check on another patient. Is there anything else I can do for you?"


The daughter slowly shook her head, still trying to process the news. Is this it? she wondered, A feeding tube seems like it would be TOO MUCH! But I guess the doctor sees this all the time, and it sounds like this is what we need to do to protect Mom.


The follow day, the gastroenterology (“GI” or “stomach”) consultant called Mrs. Z’s daughter to reassure her that "the feeding tube placement was successful. The whole procedure went smoothly."


The nutritionist recommended rates for artificial nutrition (also called "medical nutrition" or "tube feeds"), which Mrs. Z handled without vomiting, belly pain, or diarrhea.


"Discharge back to home today!" the resident told her intern, who then wrote orders for discharge including a home health nurse visit to educate Mrs. Z’s daughter on using the feeding tube appropriately and keeping it clean.


Mrs. Z was discharged to her daughter's home later that day. She returned to the hospital four more times in the next eight months - for a clogged feeding tube, for accidently pulling out the feeding tube when attempting to turn in bed, for a severely infected bedsore requiring a debridement procedure, and for severe pneumonia.


When Mrs. Z was brought to the emergency room for that last hospitalization, the resident quickly examined Mrs. Z and asked the daughter if she would consent to "heroic measures, including a breathing tube down the throat to help your mother breathe if her lungs could no longer breathe on their own."


"No!" the daughter replied, "I know she wouldn't want that."


Overnight, despite antibiotics, steroids, oxygen equipment, and breathing treatments, Mrs. Z's breathing and alertness worsened. Her oxygen numbers fell lower and lower, and the intern on call urgently called the daughter to confirm that she would not want her mother to undergo resuscitation efforts if her mother's heart were to stop (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ). "No," the daughter replied, "She's a DNR."


Mrs. Z died early the following morning in her hospital bed, alone in her room. Her daughter received a phone call to come in, and a nurse met her at the door of her mother's hospital room to let her know that her mother had passed away. "Take all the time you need," the nurse patted the daughter's hand and led her into the room.


Mrs. Z's daughter looked at her mother's body in the hospital bed and started to cry. While wiping away tears, she said out loud in the room, "The last year was really bad for her. At least, she's at peace now."



“This is a fairly straightforward admission,” the resident (physician-in-training) explained to her intern (first year physician-in-training), “Patient is 78 with dementia, coming in with altered mental status. ER workup revealed pneumonia. Start antibiotics for community acquired pneumonia, follow up on blood cultures, and let’s get a swallow evaluation due to suspicion of possible aspiration.”


“Got it,” the intern replied and rapidly typed in the appropriate orders.


Two days later, the daughter for patient Mrs. Z remarked to the intern, “My mom is much better, thank you. She’s always confused because of dementia, but at least she’s awake now. She’s more like herself.”


“That’s great! Now that she’s more alert, speech therapy is going to re-evaluate her swallowing ability. They should be coming by today,” the intern replied.


Later that morning, the intern received a page from Mrs. Z’s nurse. “Hi, Dr. A," the nurse spoke through the phone, "Speech therapy just recommended a feeding tube for Mrs. Z. She’s aspirating all textures.”


"Oh, that's too bad. Okay, thanks for the heads up," the intern paused and thought, We just had a noon conference yesterday on when a palliative care consult could be helpful - those sandwiches at the noon conference were so good! - and the lecturer had mentioned patients with severe dementia (read Post 44: When a Palliative Care Consult Could Help - Eight Hospital Scenarios).


"Actually," the intern told Mrs. Z's nurse, "before I consult GI for feeding tube placement, I'm going to consult palliative care to talk to the family about goals of care."


That afternoon, Mrs. Z's daughter received a call from the hospital. "Hi, I'm Dr. L. I'm a palliative care specialist in the hospital. Your mother's medical team asked that we speak with you and your family on how your mother has been doing at home and things to potentially expect in the future regarding your mother's dementia, as well as any community resources we could try to connect you with. Would it be okay if we meet with you?"


"Uh, yeah?" the daughter replied, unsure if she had heard "palliative care" correctly and too embarrassed about her ignorance to ask what that meant (read Post 1: What Exactly Does a Palliative Care Specialist Do?).


"Do you have any siblings or other family members who might want to be involved in this family meeting?" Dr. L asked.


"I have a brother in Dallas. He might want to join in by speaker phone. Otherwise, it's just me at home, taking care of my mom. Well, Mom has a provider who comes in when I'm at work, but the provider isn't family. "


"Okay, let's set up a time when you can come in and when your brother can be available by speaker phone for this family meeting. These family meetings tend to take about an hour and a half (read Post 3: The Secret Sauce in Palliative Care...)."


Early the next morning, Dr. L walked into Mrs. Z's hospital room. "Hi, I'm Dr. L. Is it okay if I take this seat?"


"Sure. I'm Emily, daughter. My brother, Zeke, is on the phone now."


"Hi Dr. L. This is Zeke," Zeke spoke through the speaker phone.


Dr. L explained the purpose of the palliative care visit, and then asked, "To get a sense of who your mom is as a person, can you tell me a bit about her as well as how she's been doing at home?"


Emily and Zeke both shared stories of their mother working as a high school teacher, then singing in a barbershop quartet with their father after she retired from teaching. After their father passed away three years ago, they noticed things that their father had managed to mask. "Mom is an intelligent lady. She was an English teacher! But after Dad died, we realized Dad had been doing a lot for Mom and hiding a lot from us as well. The microwave confused her. She had trouble figuring out how to call us on her phone. Then we had a scare when we thought she had accidently taken too many of her anxiety pills, and that's when we decided to move her in with me. Zeke manages her finances because he can do that online. I take her of her at home and get her to her appointments."


"And is she able to dress herself, use the bathroom on her own, and feed herself currently?"


"No," Emily replied, "Things have really gone downhill in the past six months or so. She used to water the flowers on our back patio, getting around with her walker. But now, I have to pull her up in bed, and I'm basically holding her up when I transfer her to the wheelchair. She doesn't help me with transfers at all anymore."


"How have her speaking, alertness, and memory been?" Dr. L asked.


"Not great," Emily paused, "She recognizes me, but doesn't remember who I am. She doesn't recognize Zeke on the phone anymore. She's alert and she'll lift her arm if I tell her to, but I don't think she really understands what's going on around her. When we watch Netflix shows together...I don't think she understands what's going on. She used to ask questions, but now she seems to stare off into space a lot."


"It sounds like your mother's dementia has really changed a lot in the past several months."


"Yes," Zeke jumped in, "I visited her two weeks ago, and she didn't know who I was. She couldn't stand on her own. She hardly said anything. And she was so skinny. I know Emily's been trying to help her gain weight, but Mom just keeps losing weight. She's had huge changes from when I visited her last year."


Dr. L asked how Emily and Zeke were coping with these big changes in their mother. Emily stated she had another friend going through the same thing with her own mother and that it helped to just talk and vent if needed. Zeke stated, "It's sad, but it is what it is."


Dr. L shared with Emily and Zeke her worries that their mother likely had "months, not years. When we see these big changes in our dementia patients, these changes usually continue and are usually a sign that dementia is reaching end stage. Imagine the changes your mother has experienced in the past six months. If your mother were to continue to decline, where do you think she will be in the next six months?" (Read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3, Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3, and Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3.)


Emily and Zeke remained silent, pondering.


"Knowing what you know now," Dr. L resumed, "What do you want most for your mom?"


"No suffering," Emily replied, "and to stay out of the hospital."


"For her to have a life of ease and comfort," Zeke added.


"If your mother were to look off on a Saturday night - maybe having trouble catching her breath - would you want to bring your mother back to the ER to get labs, Xrays, and CT scans to figure out what was going on? Or would you say, we don't need to put her through all that. We just want to be able to make her comfortable at home, perhaps a nurse to come to the home to help get rid of her shortness of breath?"


"Oh, never thought of that before," Zeke said, "I would defer to Emily on this. She has to go through this every day with Mom."


"Definitely have a nurse come to the home," Emily responded, "Mom gets scared of tests and strangers. At this stage, that's not what I want for her. I just want to keep her comfortable at home."


Dr. L nodded her understanding. "Part of the reason why I was asked to speak with you is because your mother's dementia is severe and affecting her ability to swallow. Just as she has lost the strength, coordination, and mental ability to get up and walk on her own, even to stand on her own, so the same has happened to her swallowing so that sometimes her saliva, germs, or even small bits of what she is eating and drinking may be going down the wrong pipe to her lungs rather than her stomach. Based on your goals for your mom - to focus on comfort, ease, and peace - it sounds like focusing on comfort sips and bites for pleasure rather than having her undergo an invasive procedure such as placing a feeding tube would make sense. What do you think?"


"I would agree," Emily and Zeke answered simultaneously.


"Definitely no feeding tube or anything invasive like that," Emily explained further, "With a prognosis of months, what would be the point? Just let her enjoy whatever she wants!"


"Okay. And the medical experts that help family members keep their loved ones comfortable at home are the hospice support team. Have you ever heard of 'hospice'?" Dr. L asked Emily and Zeke.


"Don't you have to be dying to get hospice?" asked Zeke (read Post 56: Debunking Common Myths about Hospice - Part 1 of 2 and Post 57: Debunking Common Myths about Hospice - Part 2 of 2).


"Actually, anyone who has a prognosis of months is eligible to receive hospice medical support for comfort at home," Dr. L explained, "So if your mom were to look uncomfortable on a Saturday night, you could call hospice instead of 911. Hospice would become your new 911. They would guide you on how you could make your mother comfortable, and if that wasn't working, the hospice nurse would go to your home to help relieve your mother's symptoms as quickly as possible. Does this sound like something that would be helpful for you at home?"


"Yes! Yes, it does," Emily exclaimed.


"I don't know," Zeke replied, "I just don't like the word 'hospice,' though it sounds exactly like something that could help Emily take care of Mom at home."


"Well," Dr. L said, "no decision is final. So you can interview several hospice agencies and pick the one that seems like the best fit for you. Later, if you decided that you would want your mother to receive hospital level of medical care, then you call your hospice agency to revoke and resume the current type of medical care that your mother is receiving. You can then later accept hospice support again if you decided it was a better time at that time."


"Oh," Zeke said, "It's good to know we have that flexibility! Let's talk to some hospice agencies then."


"Sure," Dr. L said, "I'll ask our social worker to send out three referrals."

Mrs. Z was discharged later that evening to her daughter's home, where a hospice agency met them within the hour to assist with setting up equipment for medical care, educating Emily on various medications to administer for symptom relief, and answering any additional questions Emily had about the hospice program. Emily contacted the hospice nurse several times over the next eight months with various questions, and Mrs. Z never returned to the hospital.


When Mrs. Z started to take in no more than two sips of Ensure each day and sleeping almost 24 hours each day, Zeke flew in with his wife and daughter to say his good-bye's.


Mrs. Z died in her hospital bed in her daughter's home with Emily, Zeke, and Zeke's family on either side of her. Emily looked up at their hospice nurse standing next to her. "Thank you for helping us give her the dignity, care, and comfort she deserved her last few months of life. She's with Dad now, and she's at peace."



Sometimes a palliative care conversation changes the entire course of someone's life - and the lives of everyone who loves them - and this palliative care conversation only occurs because a hospitalist / resident/ intern/ primary care physician/ social worker/ other healthcare provider happened to think at that moment, "Hmm, I wonder if a palliative care consultation would help."


I hope to increase awareness of how a palliative care specialist can support anyone - and their loved ones - attempting to make the most of living with complex illness, serious disease, declining health, or unexpected prognosis. With increased awareness of the palliative care specialty, perhaps more and more people will themselves request a palliative care consultation.