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  • Jeanne Lee

Post 75: How Palliative Care Can Change a Life - Sliding Doors Moment #2

Updated: Oct 11, 2022

A “sliding doors moment” is a seemingly inconsequential moment that ultimately affects the trajectory of future events in a dramatic fashion (read Post 71: How Palliative Care Can Change a Life - Sliding Doors Moment #1 for an example of how one offhand decision by an intern changes the course of a family's wellbeing).

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).

Matt frustratedly jabbed the red End Call button on his phone. He looked up at his dad, Gary, and relayed, “The nurse said Dr. P wants Mom to work on getting stronger with physical therapy and eating more to gain strength. She said they could talk about other cancer therapies if Mom can make it into clinic. Same answer as last week.”

“She’s also complaining of pain again,” Gary told Matt, who then left a message with his mom’s primary care doctor, Dr. D, “My mom, Melanie G, is having pain. When I ask her where the pain is, she says it's everywhere, her arms and legs and back....Can you please order something for pain?”

Dr. D’s nurse, Claudia, returned Matt's call the following day, “Dr. D ordered pain medications to your mom's pharmacy.”

“Ok, thank you,” Matt replied.

Matt visited his parents every day and assisted his dad in transferring his mom from the bed each morning, holding onto her as she struggled to turn her body from the bed to wheelchair. His mom would sit for half a day, then two hours a day, then a half hour each day before begging to be put back in bed. "I'm too tired. I want to go back to bed."

The home health physical therapist signed off on Melanie, stating she had reached her “maximum potential,” and Matt watched as his mom ate less and less each week and he observed how his hand could now fully encircle his mom’s bicep.

“Why can’t anyone DO anything?” Matt thought the same thought each day, sometimes with anger, sometimes with despair.

After almost a month, Gary noticed something off with his wife. “Melanie, open your eyes! Open your eyes!” Gary grabbed his phone in alarm and called 911, and paramedics rushed Melanie to the nearest hospital.

Gary and Matt learned that Melanie had had a stroke. She underwent brain CT scans, brain MRIs, and daily lab draws – and those were only the tests Gary and Matt knew about. They never saw Melanie open her eyes, and when the neurologist discussed ordering an echo, the oncologist CT scans of the body, and the hospitalist a feeding tube, Gary and Matt balked.

“Stop,” Gary interrupted the hospitalist, “I feel like you’re treating my wife as a guinea pig. Stop doing all these tests and just help us help her. Just let her be!”

The hospitalist rushed out of the room, and a social worker entered Melanie's room a couple hours later. “It sounds like you don’t want any more things done in the hospital. We can discharge her home with hospice, if that’s your preference,” she said.

Gary and Matt looked at the social worker in disbelief. “I didn’t say anything about hospice,” Gary said.

“Well, the medical team say it doesn’t make sense that your wife stay here if you don’t want any of these tests. There’s nothing more they can do for her here.”

“Fine!” Gary angrily exclaimed, “Discharge her! Put her in hospice! Whatever!”

Melanie was discharged home later that afternoon, and during the hospice program admission process – which involved Gary signing multiple forms – Melanie passed away.

As the hospice nurse pronounced Melanie’s time of death, Gary could not stop shaking his head, alternating from grief to anger to disbelief.

As Matt watched, he felt relief that his mom was no longer suffering, intense sadness that she was gone, impotence in the wake of his father’s anger, and such profound disappointment with his mom’s doctors, nurses, and medical team. ”Really, the whole healthcare system let us down,” he bitterly thought.

Matt frustratedly jabbed the red End Call button on his phone. He looked up at his dad, Gary, and relayed, “The nurse said Dr. P wants Mom to work on getting stronger with physical therapy and eating more to gain strength. She said they could talk about other cancer therapies if Mom can make it into clinic. Same answer as last week.”

“She’s also complaining of pain again,” Gary told Matt, who then left a message with his mom’s primary care doctor, Dr. D, “My mom, Melanie G, is having pain. When I ask her where the pain is, she says it's everywhere, her arms and legs and back....Can you please order something for pain?”

As Claudia, the nurse for Dr. D’s office, discussed Matt’s message with Dr. D, her gaze landed on the large chocolates-and-pretzels gift basket that a hospice team had dropped off in the office earlier that day. The gift basket served as both a “Keep us in mind for referrals” reminder and a “Thank you for referrals” demonstration of gratitude.

“Hey, that hospice team said they have a new palliative care program separate from the hospice program, “Claudia pointed at the gift basket, “Do you want me to ask the patient if they’d want a visit from palliative care?”

“Sure,” Dr. D replied, “Good thought,” and he returned to his office, where he sat down to read pending patient messages on his computer. “Ok, 24 messages left.”

Soon afterwards, Claudia called Matt. “I think Dove Hospice and Palliative Care could do a really good job helping you control your mom’s pain. And don’t let the name alarm you. Dr. D doesn’t recommend hospice," Claudia anxiously rushed through the words, "JUST palliative care, which is totally different - “

“Great, we’ll accept any help we can get,” Matt interrupted.

“ – hospice is about dying, and that’s not your mom. So we’re going to ask palliative care to come,” Claudia finished (read Post 2: Five Major Ways Palliative Care Differs from Hospice).

“Um, okay. Thank you,” Matt replied.

Three days later, Dr. L from the palliative care side of Dove Hospice and Palliative Care was introducing herself to Melanie. “If you want to rest in bed, I can ask my questions to your husband and son in another room. Would you prefer that?”

Melanie gave a small smile and nodded, “I trust them.”

“What kind of person is Melanie?” Dr. L asked after she, Gary, and Matt had completed their round of introductions and chosen their seats around the small kitchen table.

"She's what you would call an introvert," Gary replied, "She's quiet with people she doesn't know and funny and kind with the people she cares about. Family's very important to her. She's big on privacy so it's been a struggle sometimes getting her to see the doctors and convincing her to get procedures done."

"I'm an only child but I never felt alone. She's the best mom. I'm a dad now with my own kids, and she was the best grandma for them. Still is..." Matt trailed off.

"What do your kids know about how Grandma's doing?" Dr. L asked.

"Well, they know she's sick. They know she has cancer and that it's not contagious, and they can visit her anytime. I think it's hardest on the oldest one because she used to be really close to Grandma, and now Grandma has changed so much in just months. The middle one climbs all over Grandma, sort of like a puppy, and so we have to watch him when we bring him over. And the baby...she won't remember any of this." Matt talked a bit longer, wondering what memories his children would have of Grandma, and Dr. L suggested brainstorming a low key legacy project, such as Matt transcribing his mom's favorite memories and words of wisdom for each of her grandchildren (read Post 12: Legacy Work and the Five Senses). "Yeah! Yeah, that's a great idea!" Matt exclaimed, "I'll see if Mom would be up for that on her good days. It'd be wonderful if the kids could have something special from Grandma."

"You've already told me that Melanie's having more and more bad days when she's primarily in bed and less good days when she's sitting in the wheelchair for a bit. What are the latest medical updates you've heard?" Dr. L asked.

Gary replied, "Well, nothing, really. I mean, Melanie could get more cancer therapy if she were strong enough to get to clinic, but we're not at that point. Melanie told me the other day that she wouldn't even want to go back to clinic even if she could, that she's had enough with the tests and the treatments. "

"Have the doctors ever discussed expectations or prognosis with you or Melanie?" Dr. L asked.

"In the beginning, we looked up stuff on the Internet, and it was scary. Prognosis wasn't good. But no, no one's talked to us about anything," Gary answered.

"Would it be helpful to you if I talk about potential things to plan for, expectations, and prognosis? Or do you want to focus on taking it one day at a time?" Dr. L gently inquired.

"Definitely, I want to know," Gary said, and he turned to his son, "What about you, Matt?"

"Oh yeah, like, something is definitely going on with Mom, but we can't get a straight answer. We just want to know so we can prepare, you know?" Matt quickly added.

Dr. L looked at both Gary and Matt, "Well, when I hear someone say that their loved one has had big changes like Melanie has - walking last year, then in the wheelchair last month, and now primarily in bed or eating platefuls last year and now just bites every meal - from an advanced disease like melanoma cancer that's spread to different parts of the body, I'm worried that means that that their loved one is dying, that they may have weeks rather than months or years." (Read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3 and Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3.)

A somber silence followed.

"UM," Gary cleared his throat, breaking the silence, "I have to admit I'm not surprised. It's hard to hear, but I'm not surprised." Matt nodded silently.

"It sounds like Melanie agreed to many things to try to keep this cancer at bay - even when she didn't want to, she did it for the love of her family and for more time with the people she cares for most. It sounds like cancer treatments and this current path is no longer giving her the strength and quality of life she was hoping for."

"You could say that," Matt said, "I just want to give her whatever she wants now, to do whatever she says. If she says she wants peace, comfort, privacy, and dignity staying at home, then that's what I want to give her. I don't want to push her into doing anything she doesn't want to do."

"To an extent," Gary jumped in, "I think if we could get her to eat a bit more, she could regain some strength and even do some therapy. We could maybe even have more weeks with her."

"How about this?" Dr. L asked, "Let's give it our best shot. Let's encourage Melanie to eat more, giving her whatever she wants, whether it's ice cream, avocado, or applesauce. We won't stress her out, but gently offer spoonfuls and keep her company and gently encourage her to eat a few bites and sips every couple hours. We won't overwhelm her with platefuls of food. We can also continue the calorie supplement shakes, and perhaps add high calorie ice cream to make it taste better and give her more calories each sip since she's now only drinking a few sips at a time (read Post 45: How Can I Encourage My Loved One to Eat - 8 Tips to Consider). I see that the previous home health physical therapist had left you with exercises Melanie can work on while in bed and also for while sitting in a chair. During her alert moments, let's encourage a few minutes of exercise. If we see that Melanie's getting overly fatigued with each exercise, we can cut it back. In the meantime, let's try reducing this pain medication," Dr. L held up a pill bottle, "and alternating with tylenol in case this pain medication is contributing to her tiredness. Of course, if her pain returns, we can increase the doses of the pain medication in a step-wise manner. It sounds like we want to try our best to do what we think will make Melanie stronger, but her not suffering and respecting what she says is just as important?"

"Yes!" Matt said. "Sounds like a plan," Gary agreed.

Dr. L continued, "We will work together to help Melanie get stronger. If her body tells us otherwise - if her body gets weaker despite our best efforts - we may have to accept that we tried all that we could and consider transitioning to a focus on comfort. The medical experts in guiding family members in keeping their loved ones comfortable at home are the hospice experts. Has anyone ever brought up hospice as a possibility for you?"

"No, never," Gary shook his head. "Yeah, I don't think so," Matt agreed.

"When a loved one is at a point where family members say, 'If my loved one gets shortness of breath on a Saturday night, I would not want to take them to the hospital. I would want someone to relieve her shortness of breath at home," then that is when the patient's and family's goals are in line with those of the hospice team's. The hospice team's focus is about supporting the patient and family however way they can when the patient and family say that medical care in the clinic, hospital, ICU, and ER will be much more burdensome, perhaps even more harmful, than beneficial. I really think it would be a good idea to meet with several hospice agencies now while you can take your time and get an idea of whom you would gel with. That way, you have a backup plan and you're not rushing if things change."

"Okay, sure," Gary and Matt both nodded.

Dr. L then asked if she could follow up in one to two weeks to both check on them and to discuss advance care planning (read Post 66: Eeny, Meeny, Miny, Moe, Which Advance Directive Do I Show?), to which again Gary and Matt enthusiastically agreed.

Gary and Matt carried out their plan as best they could, however Melanie often asked to be left alone. After about a week, Gary, Matt, and Matt's wife met with three hospice agencies. "Hospice seems like what we'd want," Gary said, "But I want to hold off for now." Two days later, after a particularly difficult night when Melanie could not seem to get comfortable, Gary called the second hospice agency they had met with and agreed to their home services.

The hospice nurse, chaplain, and social worker communicated often with Gary and Matt, including guiding their conversations with Melanie's grandchildren about Grandma dying and working on a small legacy project incorporating Grandma's words of wisdom for her grandchildren and words of love and gratitude for Gary and Matt.

Gary also signed an Out of Hospital Do Not Resuscitate form for Melanie (read Post 6: Who Do I Tell if My Mom Does Not Want Resuscitation Attempts? - A Three Step Process). "Melanie would never forgive me if she was forced to endure all that unnecessary drama."

After almost a month from nurse Claudia's phone call recommending a palliative care visit, Melanie passed away at home.

As the hospice nurse pronounced Melanie’s time of death, Gary, Matt, and Matt's wife tearfully watched her. "Thank you for being here," Gary turned to the hospice nurse, "I don't know what we would've done without your help. We gave Melanie the best death we could give her, and," Gary paused to swallow, "I'm sure Melanie's thanking you right now from up there, too."

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 nurse/ primary care physician/ social worker/ hospitalist / other healthcare provider happens to think at a particular moment on a particular day, "Hmm, I wonder if a palliative care consultation could help."

By increasing 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, I hope that more and more people will themselves request a palliative care referral.


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