I’m not gonna lie to you Marge… What Don’t We Tell Patients and Families?

It was Valentine’s day and I was at a party. The last few weeks things were good: my dad hadn’t been in and out of the hospital or the ER. He was even doing well with his physical therapy and able to walk laps around the main floor of the house.

Around 9pm, my cell rang.
It was my mom:  “Dad broke his hip.” She was with him in the ER now, but I shouldn’t worry or drive home right away. After all he’d already been through, she was surprised when I became very upset.

I explained that at his age and with his bone health, he probably didn’t fall and break his hip. instead, his hip bone may have actually broken on its own first, causing the fall. So, it wasn’t just a broken bone, it was a marker of frailty. And the data was not good: there was a good chance we may lose him in the next year and a half.

“I’m so glad you told me” she said,  “I had no idea.”

I could tell it changed the way my mom approached the situation: she worked hard to get him moving again and to keep him out of the hospital. She was grateful to know what was at stake and how to think about it. It also motivated us to revisit his advance directives as a family. I still wonder:

If I hadn’t told her what the hip fracture meant, would anyone have explained it? Or would it have been delivered in a way that the gravity wouldn’t quite have registered? 

Years later, when my mom broke her hip she immediately asked to be put in a rehab program where she’d get physical therapy 3 times a day so she could get moving again. The staff seemed pretty amazed at how motivated she was.

Because clinicians understand the meaning of a new event or diagnosis, it’s easy to forget patients and families often don’t. What does the trajectory or progression of their condition mean for them

Sometimes it’s easier to say nothing.
In my family, when someone won’t say what’s going on, we often quote a line from the Simpsons. Marge catches Homer inexplicably hauling a bunch of bowling balls and asks: What’s going on?

He replies: “I’m not gonna lie to you Marge…”  and walks out of the room, saying no more. (See “Homer vs. the Eighteenth Amendment”, Season 8 of The Simpsons).

But people aren’t motivated to act when they don’t know the reality of their situation. I remember trying to figure out what to say when focus group participants with stage 3 kidney disease told us they weren’t getting worse and didn’t need to think about treatment options like transplant, dialysis, or medical management. This wasn’t an outlier group.

Research done with people with advanced chronic kidney disease (CKD) found that for many, their first visit with a nephrologist was the first time they were told they had CKD. Or if they had been told, they didn’t understand it as serious news at the time — so they were shocked by the seriousness of their diagnosis.1

The study also found nephrologists struggle to explain this complex illness and avoid talking about the future.1 Physician emotions also play a role: another study found factors like: wanting to instill hope and worries about emotional backlash impacted discussions about conservative management for older CKD patients.2

On the patient and family side, people want information so they can make plans and make informed treatment decisions. Related studies found many older CKD patients are never given a prognosis. Unfortunately, many elderly CKD patients then don’t engage in advance care planning.3

Compassionate Candor and Giving People Time to Process
People also need time to process information — especially when it doesn’t match their expectations. After all, why isn’t breaking a hip the same as breaking any other bone? Recently, I was getting feedback on hip fracture patient education materials with people who had cared for an older loved one with a hip fracture. Often, they’d read the part about how it may be a sign their loved one is frail and may be in their last months or years. Often, they initially respond with something like:

That can’t be true! 

And then, after thinking about it, they’d say something like: Hmm, he did pass away about a year after that. Maybe it is true. But no one told us.

Emotionally people may not take difficult information in the first time, so repeating it can help ensure it doesn’t just wash over them. They have to settle into the new understanding. This takes a coordinated effort. I’ve been in the hospital with a family member where one clinician is more candid about the road ahead. And later that evening another member of the team minimizes the message. 

People hear what they want, so if one message is less daunting, it’s easy to latch on to that. But if we’re not candid with people about their health, how can we help them plan, act, and think about their goals — and not just treatment goals, but life  goals?

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  1. Schell JO, Patel UD, Steinhauser KE, Ammarell N, Tulsky JA. Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study. American journal of kidney diseases. 2012;59(4):495-503. doi:10.1053/j.ajkd.2011.11.023.
  1. Ladin, K, Pandya, R., Kannam, A, Loke, R, Oskou, T, Perrone, RD, Meyer, KB, Weiner, DE, Wong, JB. Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists. American journal of kidney diseases. Published online: 3 February, 2018, doi: 10.1053/j.ajkd.2017.11.011
  2. Ladin, K., Buttafarro, K., Hahn, E. Koch-Weser, S. Weiner, DE. “End-of-Life Care? I’m not Going to Worry About That Yet.” Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients. The Gerontologist, Volume 58, Issue 2, 19 March 2018, Pages 290–299, doi: 10.1093/geront/gnw267

About the author

Geri Lynn Baumblatt

Geri Lynn Baumblatt

Geri works to improve relationships, communication, understanding, efficacy, outcomes, experience and wellbeing of patients, clinicians, and family caregivers. Her work incorporates principles from health literacy, decision and behavioral science, neuroscience and organizational design. She cofounded the Difference Collaborative to help employers address the growing needs of their employees who are family caregivers so they can work, care and thrive.

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