Pearl 7: Storytelling for the Effective Clinician

“This patient and family are in denial or they just don’t get it.”

We, as clinicians, are trained (and incentivized via billing and time constraints) to remember each patient as a bullet list of diagnoses and corresponding treatment plans.  This often is reflected in how we communicate with our patients and family members.

Medical team talking to the four adult children of a hospitalized patient: “We’ve treated the patient for a UTI, sepsis, and dehydration.  She also has an NG tube* - that’s the tube going down her nose to her stomach for nutrition - because she failed her swallow study.  The SNF* (“sniff”) – that’s the subacute rehab place – won’t take anyone with an NG tube. She would need a long term feeding tube in her stomach to leave the hospital. What do you want to do?”

The four adult children repeatedly stated the following:

“We want Mom to go to rehab so she can get therapy.  She certainly can’t go home.  She’s still confused and she can’t walk.”

“We’re not going to starve Mom.”

“A permanent feeding tube through Mom’s stomach seems too invasive.  We don’t want something so invasive.”

The primary medical team and the family were at an impasse for days, extending the patient’s hospitalization by an additional three days. 

What could have been done differently to avoid these three extra days of hospitalization?  STORYTELLING. 

The palliative care team put together the above individual data points and communicated them in story form, with Mom as the main character in her own personal story.

“People can live with mild dementia for years before dementia starts to severely affect them.  Sounds like your mom had mild dementia for years and really enjoyed watching FOX news and doing her word searches.  Sounds like being able to engage with family was important to her because she enjoyed family dinner on Sunday evenings. 

And then it sounds like her dementia started to get really bad pretty quickly this year.  She’s only been eating a bowl of ice cream, sometimes with Ensure mixed in, each 24 hour period.  She’s lost 20 pounds.  She no longer watches her news and instead stares off into space.  She hasn’t done word searches in months.  Her grandchildren occasionally bring a smile to her face, but she doesn’t talk to them like she used to.  In fact, she hasn’t gone out to eat for a couple months because she primarily wants to stay in bed or in the recliner.  And it sounds like she’s been needing a lot of help just to get out bed and to take a shower, and now she’s having accidents because she forgets how to properly use the toilet.

Sometimes, families say it feels surreal because everything is changing so fast.  Her dementia seemed stable for years, and all of a sudden she’s losing so many abilities in just a few months as dementia becomes severe.  When dementia becomes end stage, it can worsen pretty quickly.  And unfortunately, severe dementia cannot be fixed or reversed. 

So, all these changes your mom has had…they'll actually continue to get worse as her dementia gets worse.

A part of severe stage dementia, or end stage dementia, can be losing the ability to coordinate swallowing muscles or no longer wanting to eat or both.  This seems to be happening to your mom.

Your mom’s medical team put the temporary feeding tube in through her nose to get artificial nutrition in  your mom while they treated her infection and dehydration.  They were really hoping that by treating her infection and dehydration, that she would become more alert and stronger and be able to eat on her own.  However, that best case scenario hasn’t happened.

So now we’re looking at two possible paths here; both of them difficult.  I’ll describe them, and you can let me know what you think your mom would want if she could understand and what seems the most right path to you at this time.

The first path is to try to buy Mom more time by continuing the artificial nutrition through a long term feeding tube in the stomach.  The NG tube she has now is a temporary, easily dislodgeable tube they try in the hospital for a short time with the expectation that the person will within days get alert or strong enough to safely eat agin.  If that doesn’t happen, and family wants to continue the artificial nutrition, we transition to the long term, less easily dislodgeable feeding tube through the stomach.  That’s with the hope that with more days with artificial nutrition, Mom would become more alert and follow physical therapy instructions at rehab and get stronger.  However, with this path, there’s just as much a possibility that as dementia continues to get worse that Mom will not become more alert, will not follow commands, and therefore not be able to work with physical therapy and instead remain bedbound.  She'd be at high risk of coming back to the hospital again and again for complications such as bedsores and infections.

The second path is if you think your mom would say, “This is no life for me.  This is not me.”  This would mean foregoing the long term feeding tube and artificial nutrition through the stomach and instead giving her sips and bites for comfort and pleasure if she has moments of increased alertness and wants something.  It would mean focusing on keeping her comfortable and maintaining her dignity as much as possible with familiar people around her, such as at home, with the hospice team to help family make that happen. It would mean letting go of coming back to the hospital, letting go of tests like xrays, and letting go of IV medications. The next time she looked off, family would call the hospice nurse instead of 911, who would help her through an episode at home. And if it were her time, they would keep her comfortable until she died.

What do you think of these two paths?”

After a few moments to process, the four adult children stated they would regret it if they did not give Mom as much chance as possible to get stronger. They consented to placement of a long term feeding tube (PEG*) in the stomach.  “But if we see that it’s not helping, we’re not going to leave her like this.  We’ll get her home with hospice.”

After this conversation, there were no further delays in moving the patient's plan of care forward. She had a PEG placed first thing the following day.  After a day of proving the PEG was functioning, the patient was discharged to a SNF.  Her children did interview a few hospice agencies to become more informed of options.  A couple weeks later, her children decided to bring their mom home from the facility. They let go of the artificial nutrition to instead focus on comfort with hospice support for however many days she had left.  She did not have a hospital readmission.

In all facets of our lives, such as in politics, law, business, marketing, entertainment, we see the value of the story.  Facts and data points (even the data patients and family members collect on ChatGPT) are necessary anchors, but it is the story that gives them meaning.  If an attorney were to ask me if I wanted to include "per stirpes" or "per capita" in my will, referring to my four children, I would need context.  “Give me examples of potential outcomes of both, so I know which direction to go.  Tell me some stories!”

Meaning is especially important when the patient’s health and prognosis have changed so much that their vision of their future – and the family’s vision of their future together – has warped into a black hole of uncertainty.

The following are several things to keep in mind when communicating a patient’s complex or declining health condition in story form:

1.        The story is most relevant to the patient and family if it is personalized to them.  So, a few minutes have to be spent learning about your hero’s or heroine’s struggles so far.  Is your patient still driving?  Or since his fall and hip fracture surgery, has he not been able to move his leg well enough to drive and therefore has not been able to make his weekly meet up with his buddies at McDonald's?  Is your patient with cirrhosis and a MELD* score of 35 still walking 20 feet with a walker?  Or is your patient with cirrhosis and a MELD score of 35 now bedbound and too week to lift a spoon to his mouth and so requiring to be spoon fed?

2.       The story has to be understood by the patient and family.  Even as a highly educated college graduate, I did not know the meaning of the words “infarction” and “ischemia.”  As a palliative care physician, every couple years I sit with a patient who has had undergone surgery, radiation, and chemotherapy for their "malignancy," "mass," "tumor," "lesion," and "metastasis," only to be devastated upon learning that they had "...CANCER?!".

Consider adhering to universally understood middle school vocabulary when discussing the patient's big picture.

3.       Primarily stick to the data that is relevant to conveying your patient's expected trajectories. There is only so much bandwidth a human being has to process data points.  Even if your patient has hypertension, elevated cholesterol, and atrial fibrillation, discussing these conditions will not add value to your patient’s stage 4 pancreatic cancer story and expected health trajectory.

4.        When it comes time to guide patients and family members through difficult decision making, the single most impactful thing you can do is help them visualize what the default path would realistically look like from a day-to-day living, quality of life standpoint and what the comfort focus path would look like. In other words, what does "keep going" look like, and what does "focusing on comfort and quality of life" look like? We cannot assume that our patients or family members know realistic trajectories. Based on professional experience, I have found that the vast majority of patients and family members who were said to be "in denial" actually did not have a concrete picture of the big picture in the first place. They could list the data that medical teams and specilists relayed to them, but they did not have the medical experience to put the data together and give the data meaning.

For example, a patient with advanced lung disease who is admitted to the hospital for a flare-up might tell me "My pulmonologist said if I were to worsen and eventually need to be intubated that he didn't think he could extubate me. That's how end stage my lung disease is." And then very often, the patient would sit with this data, not knowing what it meant nor what to do with it.

Consider, instead, a scenario in which the clinician explains to this patient and their family, "The medical team is trying their very best to get your lungs breathing on their own without this ICU level of breathing support that's just one step below a breathing tube. They are trying antibiotics, steroids, diuretics, breathing treatments. Hopefully, your lungs can recover enough so that eventually you can leave the ICU and eventually go back home. However, it is possible that even maximum medical therapies might not be enough and your lungs may continue to fail to the point that even this breathing mask is not enough. Your lung doctor has already told you that your lung disease is end stage and that once your lungs became dependent on the breathing machine that they would probably stay dependent on the breathing machine.

So, we have two potential paths if these medical treatments were not enough. For some people who want to take every chance possible for potential recovery, they would say, 'Go ahead and intubate. Hopefully, the doctors can get me off the breathing machine. If they're not able to, then my family know when to let go.' For other people, they might say, 'I would never want to put myself or my loved ones in that position.' They might say that if their lungs were failing despite maximum medical treatments, that they would want family to be notified and instead of having the breathing tube placed and potentially being stuck connected to the ventilator that they would instead want morphine to relieve any shortness of breath. They would want to be kept comfortable until it was their time, until they died.

What do you think of the two paths?"

Story telling helps the patient and family living through some of the most difficult and uncertain times in their lives realize what matters and what does not matter.  It can better enable them to make high stakes decisions because they can now visualize themselves moving forward on a particular path.  Story telling can also give them an idea of when they would step off that path and onto a different path.

Perhaps one day, AI (artificial intelligence) will be able to provide meaning to the data.  Until then it is up to us, human clinicians, to help patients living in one of the toughest times of their lives regain clarity and become the main characters again in their own stories.

For non-internal medicine clinicians:

*NG tube - nasogastric tube

*SNF - skilled nursing facility

*PEG – percutaneous endoscopic gastrostomy

*MELD – Model for End-Stage Liver Disease, a score that estimates the 90-day mortality of patients with advanced liver disease (a MELD of 35 indicates >50% 90-day mortality risk)