Tuesday, September 23, 2014

Encouragement: Please keep sending forth a tiny ripple of hope

Being a patient advocate--trying to change the world or at least your corner of it to make health care safer, higher quality, more transparent, and more patient driven--is hard work.  It can also be lonely work.  It can also be discouraging because the pace of change in this field sometimes feels like watching a race between a snail and a flow of molasses on a cold day.  If you've been through medical errors yourself, or if you have a loved one who was, this can leave you pretty upset and discouraged.

So it has been recently for a gentleman from Sweden.  A mutual friend, Marije Elderenbosch, wrote to ask for help for him:

Torbjörn Hammar has been trying to improve Swedish healthcare for the past four years, as his wife died as a consequence of several medical errors. He wants to eliminate such errors and create more openness in healthcare to help others. Sadly, he now wants to quit, because he feels he is getting nowhere. He got one of Sweden's biggest newspapers to write about his wife and what went wrong, he has one of the biggest trade unions supporting him, Swedish radio interviewed him, but right now he just feels sad and alone.

What he needs is hope, a tiny spark of inspiration, maybe a few pointers, and I was hoping you could help me here. I know you are very busy and I am not even sure what I am asking you exactly, but I refuse to let this wonderful man quit. Can you help me in any way? Tips, ideas, people, whatever.

I shared this call for help with several friends who have been active in the field.  Their comments were eloquent, and with permission from all, I share them with you to share with others who might be feeling the same way as Torbjörn.

E-Patient Dave deBronkart offered this perspective:

Marjie, I'm sorry to hear about his terrible loss, which all of us know about, too well. 

Your email didn't give any idea why he feels sad and alone.  Is he in another understandable wave of grieving?  Did he want some specific change, and it got voted down? 

Or perhaps he's going through something we all know about: the stage of disillusionment people often feel after their first big wave of intense energy is completely spent, and the whole universe has not changed yet.  Then, after a while, you learn that the road it long and that complex systems generally don't change fast. 

This is especially hard to tolerate when you know clearly that there's real human harm from the delays. 

I first learned about this effect around 1982, through a co-worker who was involved in The Hunger Project.  After you see a few children starve to death, and you feel powerless about it, and you bust your ass giving everything you have to stop the problem, it takes some work - and some spiritual transformation - to recommit yourself to the "long haul," the difficult work of learning what it will take to create real change that lasts. 

In the case of the hunger issue, I attended a weekend workshop "Beginner's Guide to Ending Hunger." One of their tips: "Take vacations." (That is, prepare for the long haul.) 

In the case of The Hunger Project, decades of efforts at all kinds of things, from massive UN relief projects to national-leader summits and everything else, ultimately led to learning that what works is very different from top-down:  As this page says (on the right), the "three pillars" are
 *   Gender Equality
 *   Mobilization at a Grassroots Level
 *   Partnership with Local Government

Who would ever have thought that, back in 1980?  President Kennedy had said in 1963 that we have the capacity to end hunger, and all we lacked was the political will.  Well, it turns out complex system problems need to be resolved by discovering what micro changes produce profound effects.

I mean, who would have thought that gender equality is a key enabler of resolving hunger? 

Personally I believe that something similar will happen in medical safety: empowering patients, in full partnerships with the medical industry, will prove to be a vital component. And that will take time.

In closing: this is a big task he's taken on, it sounds like he's being effective, and he's going to need lots of help.  It may be that he's found a purpose for the rest of his life.

Tracy Granzyk, who works on process improvement at Medstar Health and is a key player in our resident and student education programs at Telluride, said:

I'm so sorry to hear of your friend's loss. Please invite him to connect with all of us and others, fighting the same fight all over the globe. I personally am re-energized each year by "educating the young" at the Telluride Patient Safety Summer Camps, or attending Patient Safety meetings with colleagues, such as the Lucian Leape yearly Forum or IHI and NPSF Conferences and more. There is strength in numbers--and your friend is not alone. Ask him to reach out--via email, Skype or our blog just to have a virtual cup of coffee, if nothing else. 

As Dave mentions so eloquently, this is a long, often frustrating, journey with far more complexities than any one story can tell. We all feel at times we're climbing Everest without oxygen or a sherpa, but then we have a conversation with a friend or colleague equally as passionate, or a resident or medical student who takes on the cause, and we re-commit to press on to support them and other friends/colleagues, so that the terrible loss your friend experienced, as well as others so dear to all of us, will only be due to terrible accidents--not something that could have been prevented. 

I love the reminder and insight that Dave also shared, that it turns out complex system problems need to be resolved by discovering what micro changes produce profound effects. This, in many ways, reiterates what Atul Gawande talks about in a New Yorker article, "Slow Ideas".

What will be the next "micro change" we as a group can create that will have the greatest impact on patient & healthcare professional safety, as well as engagement in new ways by both parties in any healthcare encounter?

I'm still in! And you're right--we can't afford to lose those who also "get it". We need to continue to grow our "square root" of everyone, so that the real change we're talking about can continue to move forward.

Please reassure him that he's not alone -- share this email -- and tell him to reach out!

And finally, Richard Corder, who works at CRICO, the Harvard system's captive medical malpractice insurance and risk management company:

I am so sorry to hear of your friend's loss, and of his feeling of sadness and loneliness. Please let him know that he is not alone, far from it. 

The work of change (especially in patient safety and health care) often feels lonely, because it is the brave who stand up, and speak up with a quivering voice and shaking hands against that that we have held as "normal" for so long. 

That act, in and of itself, is nerve-wracking and scary. The reality is that the kind of cultural change that we are working toward for will only come about when we remember that we are not alone, that we do this in memory and honor of those who have died too soon, and that we are making a difference by changing the conversation and telling our stories. 

I am inspired by much of what Tracy and Dave have referenced and by remembering that others have grappled with similar realities in the past. I love this quote from Robert Kennedy from a speech made in South Africa in 1996: 

"It is from numberless diverse acts of courage and belief that human history is shaped. Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance." 

When I first started working in this space, Don Berwick MD, then at the IHI, reminded me that to be successful in this space of change, we must find and make friends. They get us through the toughest of times, remind us why we do what we do, are ready to laugh, cry, commiserate and celebrate with us. Please know that you and Torbjörn have a friend in each of us and many more. Please encourage him to connect and to keep making ripples.


Anonymous said...

Glad I found your blog. I am one of those who became Miss treated significantly by the Swedish health care and faced Death 2 times at the same week, but survived thanks to my knowledge and intuation.

Don Sharpe said...

Sometimes we don't see the progress we're making.
Maybe we'll be dead before the changes we advocated for come to fruition. Those on a mission can lose friends along the way, because that's what they want. They'd rather scrape the barnacles off the hull so that someone else can sail the project ship faster.
Only The Weak Quit. Nobody Ever Said This Was Going To Be Easy.

Beverly Heywood Rogers said...

From Facebook:

Very, very moving. And bless the wonders of the Internet that allow isolated people to keep in contact like this.

Anonymous said...

I am so sorry for Torbjörn. I can't even imagine the pain he is in. I do know that many people have probably tried to comfort him and their words sting. "Don't be bitter." "What doesn't kill us makes us stronger." "She is in a better place."

Nothing can take away the wrongful death. He is not obligated to "fix" the system. He just needs to figure out what will give him the most peace.

Whichever path he chooses, it is the right one for him.

e-Patient Dave said...

Of course I was on this thread, but still, when I came to read this... the photo drives home the pain again.

Thanks for posting this. It's important.

Bart Windrum said...

Torbjörn, if you're reading this I sent you a Facebook friend request. From there I can connect you with dozens of like-oriented American citizens who are taking action to improve health care. If you find me on LinkedIn we can connect there also.

Barbara said...

The responses to Marije for her friend, Torbjorn, are inspirational and eloquent. I am especially inspired by Tracy and Richard as I share their pain and their commitment to make a difference and illicit change. It is slow but one must stay on course, continue the mission and continue to send forth those tiny ripples of hope. Stay on course Torbjorn. You are not alone.

Cristin Lind said...

Torbjörn, I am sorry for your loss and appreciate all that you are doing to make things better for others. I also live in Sweden and work on issues around health, health care and systems improvement. As a mother of a child with complex syndrome, I need the system to get better too. I do think that change will never come as quickly as we need it to. That's why it's helpful to have patience, perseverance, and friends who keep you company along the way. These friends can be other patients and families, and they can be "insiders" who, like you, are desperate for things to get better. I hope you have lots of people like that in your life, or at least a few. We're out here--we just need to find each other.

Something else that has helped me tremendously is to stop thinking about this work as a battle, but instead as a collaboration with people who are trapped in a system that doesn't work anymore. It might sound like I've gone soft, but for me it's not only the truth, but the only way I can avoid getting burned out. It also helps me have a bigger impact.

Best of luck to you and thanks for all you do. Lycka till!


mayro said...

️at last i find out to Wright in this blog tanks fore contact. Sincerely yours Torbjörn Hammar (sadly i am not good Wright in english)

Steven Montague said...

Torbjörn, please allow me to express my sympathy and wishes for healing. I also admire your persistence in trying to help others benefit from your catastrophe.

While I agree with several others here that it is frustratingly slow progress on patient safety, I do want to assure you that Patientforsakring is actively working to improve patient safety right now. Healthcare is a very large ship, and the rudder is very small, but I believe that they will continue to change the course of outcomes for the better through persistence and innovation.

I am not affiliated with the organization, but I have offered them some advice on how to proceed with some important initiatives that they're working on.

My goal is to reassure you that there is progress being made, and your work is not in vain.