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JAMA ICU Trial: Messaging, Information Toxicity, and The Simpsons



by: Alex Smith, @AlexSmithMD

There's been some terrific discussion about the ICU trial published in JAMA.  I'd like to share some of those reactions here for those who missed them.  For those of you who missed the original GeriPal perspective about the trial, click here.

The first is from the comments on the original post.  Sean Morrison, MD, director of the palliative care service at Mt. Sinai (one of the hospitals participating in the trial) gives his insider understanding of the intent and purpose of the trail: "this was not a palliative care intervention."




As the director of one of the palliative care programs that participated in this study, I thought it might be useful to add a few more comments to the discussion above.

I think it is important to understand the background to this study as we understood it at Mount Sinai. The purpose in conducting this study was to see whether a structured compassionate sharing of prognosis and likely outcomes to ICU families would assist in decision making and improve outcomes. At its inception, this trial was never designed to be a palliative care intervention. Palliative care clinicians were chosen to deliver the intervention because of their sophisticated communication skills.

I'm actually not surprised by the results. We know from our practice that discussing goals of care and assisting in decision making for critically ill patients is a complex, difficult, and time consuming process that typically requires the development of an ongoing and trusting relationship with both families and clinicians, repeated meetings, ongoing emotional and spiritual support, and time for the process to unfold. Further, it is not surprising that the abrupt "in and out" sharing of both prognosis and the likelihood of poor outcomes in the absence of this relationship-building process appears to have done more harm than good. Indeed, many of the clinicians who participated in the trial were uncomfortable with the intervention and noted that it was quite different than their routine practice.

If the authors had reported the negative results of a trial that used experts in communication (i.e., the palliative care team members) to examine whether one or two sessions devoted to sharing of prognosis and outcomes in a critically ill population was beneficial, I think that we all would agree that this was useful information, albeit perhaps not terribly surprising.

From my perspective, the main authors of this study made the inexplicable decision to describe this as a “palliative care” intervention. Let me be clear, this was not a palliative care intervention nor did our team consider it to be such. The intervention was a strictly delimited structured informational session delivered by palliative care providers who were given an intervention script and were accordingly restricted in what they could say and do by the design of the study.

Needless to say, the messaging of this article was misguided, inaccurate, potentially damaging to the field, and more importantly potentially damaging to critically ill patient and family access to palliative care.

Thanks for letting me weigh in.
Second, here are the perspectives of one of the world's finest communicators and teachers, Tony Back, MD (h/t to Angelo Valandes' twitter feed).  Tony's reflections are captured in video on Vital Talk , a terrific website/app/resource that if you haven't seen, you should check out right now by clicking the main page here.  Tony links the study to an issue we have all encountered in palliative care communication: information toxicity.  I love how he masterfully draws out teaching points for practicing clinicians from this study's findings.  Favorite line, "If you were an oncologist, you wouldn't give the next cycle of chemotherapy without checking the white count. We should treat information the same way."



Information toxicity from Vital Talk on Vimeo.

If you don't have access to the video or via the link to Vital Talk, then here is a transcript of his remarks (thanks to Sean Lang-Brown).
I've been hearing dismay and much consternation about the new negative study of palliative care in the intensive care unit, and here's my take on it.  We are slowly learning that information might have a downside. What the study investigators did was well intentioned. They added information meetings to routine ICU care. The information meetings were led by palliative care clinicians but they weren't done in conjunction with the ICU team, there was only 1.4 meetings per family and patient and the guide for doing the meetings has nothing at all about noticing family emotion or responding to it.
I think the study investigators were hoping that more information would help family members understand better and do better.  What the study showed however, is that the families who got the extra informational meetings in some ways did worse. They had more symptoms of post-traumatic distress.  
We clinicians tend to think of information like a kind of fertilizer, you know, "sprinkle it on there and awareness will blossom!" But when you're dealing with a family member who's exhausted, sleep deprived, and on the ICU roller coaster of experience, giving more information can tip people into an overwhelmed state, where they fall back on coping mechanisms that aren't their strongest.  Things like denial, suppression, projection. 
What do you do when you've hit information toxicity? The first thing is don't panic, you can still work your way out of it. But what you need to do is different than pushing through to the thing you think you need to finish. 
So, take a deep breath, pause, and say, "Let's take a minute here." Then, ask for a sample of their experience. Say something like, "You know what, could you just tell me what's going through your mind right now?"
Don't ask them for the decision, don't ask them to analyze things, don't try to put words in their mouth or even comment on their emotion. Ask them to just report. And if you get a little bit of freeze, flight or fright, it's really time for you to stop.
What you should think about then, is that by trying to pack in more information, by trying to be efficient, by trying to get the DNR, you're probably going to do harm.  You know, if you were an oncologist, you wouldn't give the next cycle of chemotherapy without checking the white count. We should treat information the same way.
And finally, from Facebook comments to GeriPal, we have this from Jerry Soucy, RN.
In-N-Out burgers are pretty good. 
These consults remind me of an early episode of the Simpson's ("One Fish, Two Fish, Blow Fish, Blue Fish."). Homer eats a platter of improperly prepared fugu at a sushi restaurant and is taken to the hospital, where Dr. Hibbert tells him he has, "Twenty-four, well, twenty-two hours to live. Sorry I kept you waiting." He then gives Homer a pamphlet with a picture of heaven's pearly gates and the title, "So you're going to die..."
When I was a vegetarian I used to make a "cultural exception" for each country.  This was so I could sample things like camel's paw in China (tastes like chicken), or the Cuy in Peru (guinea pig, tastes like chicken).

In the US, my cultural exception was In-N-Out Burger, and yeah, they were pretty good.  Much better than chicken.  Oh well.  The analogy only goes so far...

Finally, this bonus link is courtesy of Bob Arnold, MD.  It has almost nothing to do with everything above.  In a redemptive move, JAMA just published an "amazing" (Bob's word) personal reflection from Chris Feudtner, MD, PhD, about the last day of his father's life in the nursing home.  Note how Chris has to ward off the nurse supervisor, who calls 911 stating that the POLST order, "Do not hospitalize unless his comfort needs cannot be met," is unclear. That's one piece of this important story, which is also about presence, touch, and forgiveness.  The story is titled, "A Hand to Hold."






Comments

Liz Salmi said…
(Insert laughing/crying emoji here.)

After my brain cancer diagnosis I joked about being surprised I had NOT received a "So you are going to die" brochure from my neuro-oncologist.

Nearly 8 years later (I'm doing well, thank you) my doctor has yet bring up any serious discussions with me.

I wonder... Is it better for a doctor to have a frank conversation with a patient about the end of life while they are still doing OK, or only bring it up when they are out of options? Any opinions out there?
Kim said…
I wouldn't wait for the doctor to bring it up. I would start the discussion with my loved ones now. You may live a very long time and you may not die from your brain cancer. What if something sudden happened to you? Would your loved ones know how far you want to go? What are acceptable treatment options for you? What is your definition of quality. Have that conversation now would be my advice.

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