Earlier this week, John Sharp tweeted a link to a New York Times column by Abigail Zuger, MD, about the “Unworried Unwell” — people who have been told that they are very ill, but do not seem to want to do anything about it. The comments are wonderful, particularly the Reader’s Picks, including helpful tips about how to motivate behavior change or be more understanding of individual choices. Two stood out to me:
[In response to a comment arguing that people who welcome death’s release should not be criticized.] Yes, death can be a welcomed relief, however for many people, death typically doesn’t come as a thunderclap, suddenly and all at once. For the woman with the untreated hypertension, she is more likely to have recurrent problems, progressive kidney dysfunction, failing eyesight, repeated mini-strokes, other circulatory issues, in a chronic negative progression rather than suddenly dropping dead (although there are some whose exit takes that path). I have known many elders who are unafraid of death. That’s admirable. Given what I’ve seen in the office what more people should be afraid of is chronic debility and functional losses from un or undertreated chronic diseases. – GeriMD
Never, never abandon a patient. Plato: Be kind, for everyone you meet is fighting a harder battle. – Philip G. Miller, MD
How can we help someone to see that bigger picture? How can we help each other to never abandon someone in need? It’s not going to be yet another study, that’s for sure. (The Onion has it about right: New Study Finds Nothing That Will Actually Convince You To Change Your Lifestyle So Just Forget It.)
I was reminded of a session led by Abbe Don at Health Foo 2011. Here’s the excerpt of a longer post:
Abbe did a quick presentation about how IDEO approaches their projects, then gave us two case studies to ponder. She split us into two teams and gave us specific tasks – write down one personal health goal on post-its and group them on a board, for example. It was so participatory that I only took one note – that IDEO asks “HMW” questions to help prompt new thinking: “How Might We…” The final project for my team was to create a visualization of health that would motivate someone to change their behavior. We had a wonderful 
time brainstorming and then cutting, pasting, taping, and drawing our way to complete “The Goalposts of Life” – a representation of 3 lives, the grandfather’s cut short by a heart attack (with pictures of what he left unfinished), the father’s (with pictures of his new healthy lifestyle and longer life goals), and the son’s (all the dreams he has for the future).
Here’s a crazy idea: What if there were art supplies in waiting rooms and trained facilitators to help people visualize their life goals? Would that change the clinical conversation?
I was also reminded of the testimony of a patient advisor at the 2008 Chronic Disease Care conference sponsored by the California HealthCare Foundation. An excerpt:
Ardes Gardner, patient advisor: Played in the NFL for two years and learned to eat “heavy and hard.” “I ran from diabetes for 10 months. Providers: don’t stop repeating the information, never think your work is in vain. Thank you for constantly shoving that information in my face.” His 10-year-old son is his major motivation to get better and talking openly about his health is his new mission. “No one at my church had diabetes until I stood up. Then everyone came forward.”
During the Q&A, an audience member asked if a provider can create decision points like the ones which prompted Nancy and Ardes to make positive changes in their lives. Ardes answered, “No, if the patient isn’t ready, they won’t make a change.” He counseled providers to screen for depression and aggressively treat it, but stop the fear-mongering since “it becomes meaningless.” He said that providers can continue to remind patients about how to manage a chronic disease, but the why comes from within each person.
What do you think? What has motivated you to change your habits? Where does the why come from?
This is great — what if people could bring in stories, pictures, art as ways to show what is frustrating them or what is important to them to help make better decisions. I love the picture of the pill meeting in the hacking caring post for the same reasons — it flips the story of compliance on its ear.
Thanks, Gina!
Vic Strecher tweeted a reminder to look at Jeremy Noble’s work at the Foundation for Art & Healing:
http://www.artandhealing.org/why-it-matters/
And speaking of flipping:
http://fliptheclinic.org
Susannah, I love your highlighting of how each person’s and patient’s “why I change” is individualized. Wouldn’t it be great if digital health could help people track, and stay accountable to, those personalized “why’s”….!
And — as you acknowledge — each person does have agency. So although I, or society, may disagree with their choice to continue to smoke despite COPD, drink heavily despite cirrhosis, or not take meds despite a diagnosis of diabetes …. ultimately, it’s that person’s choice. All we can do is facilitate a healthy conversation. And recognize that each person has their own reasons — however much I/we might disagree — for their choices.
(As a side-note: sometimes acknowledging a person’s right to choose is the most powerful tool of all!)
As I sit on the caregiving chair watching my brother -in- law be treated for diabetes and pressure sores that won’t heal, I can’t help but wonder why he insists on taking vitiamins with his other 15 pills, but won’t change his diet. For me, as the exhausted caregiver, the motivation to take care of myself comes from knowing how hard it is to be an unhealthy caregiver. So I take time to exercise, cook, ask for help, take vacations and laugh often at the absurdities of life.
Yes!
An aside to anyone who hasn’t had the pleasure yet: click through to Cathy’s blog for a dose of perspective and humor:
http://cathysikorski.wordpress.com
You just have to laugh, indeed.
The trouble with goals as above is that they are own cause of stress.
As Victor Frankl and Nietszche pointed out ‘a person who has a why can bear almost any how’.
You hint at it in that quote of the greater battle each individual is undertaking. Sometimes though it is more humane to allow the patient the right to determine if side effects of treatment are too great.
Absolutely! Respecting someone’s choice to *not* take action is part of this. The NYT column left me wondering if the doctor would be more understanding of those two people’s choices if she knew their back story, knew their motivations, knew how the rest of the puzzle fit together.
The “goal posts of life” example was centered around the story of one person in our small group during that Health Foo session. It was intense to listen to his personal story and then work together on a visualization. It was *his* idea to use the goal imagery, to motivate himself (the figure in the middle) to stick with his weight loss and other changes in his life in the hopes of avoiding the heart attack which he perceives to have ended his father’s life too soon.
How might we trigger that kind of conversation with ourselves, as individuals? How might we trigger it within our homes, with our families and close friends? How might we trigger it within our clinical settings? Those are the questions I’m raising because I was left a little bereft by the columnist’s seeming to throw up her hands, as if she couldn’t possibly broach the topic about why a person might not want to change their behavior or take a certain drug.
I have heard stories of real change due to: attending family funerals and realizing how short life is, churches making an appeal to get screened for diabetes or prostate cancer and even TV like biggest loser. I agree, each circumstance is unique. Maybe someone should start a Facebook site or social media on #WhyIChanged.
Glad I helped inspire this post, Susannah!
I like that idea: #WhyIChanged
In case people reading these comments haven’t heard of it yet, the Robert Wood Johnson Foundation has launched a new initiative focused on “flipping the clinic” which is related to the ideas we’re talking about — how to open up the conversation about health so that it doesn’t begin and end in the exam room.
Here’s the site:
http://fliptheclinic.org
Thanks for this post.
It makes me think of what was the most valuable learning experience I had as a medical trainee: my 2 months of palliative care service, during geriatrics fellowship. As you can imagine, this involves a lot of talking to patients to come to a mutual understanding and plan.
One of many little dictums my attending would say is “framing is everything,” meaning that how people interact with us really depends on the frame, and how we frame the information we share.
And of course, to frame well, you have to start by understanding how the patient sees things, and what he or she cares about.
As clinicians, we should get better at doing this consistently (I’m grateful for my little bit of training & wish I had time to get more). But I like your idea of providing additional resources to support patients in thinking about their goals, so that then we can serve them more easily.