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Home » Healthcare Problems » How can we have informed patients, if hospitals won’t inform?

This post is prompted by a horrid subject: how do we as a society deal with one of the worst possible events – a death in our healthcare system?

The immediate topic is a 37 year old woman who died last week at Beth Israel Deaconess Medical Center (BIDMC). An article in today’s Boston Globe discusses the hospital’s policy of openness about everything, even including tragedies.  I think this policy is vitally important, though potentially very risky, and I want to say why I believe it’s so important.

The question that will make a difference is: What policies, what problem-solving approach, can possibly pull the American health care system out of the tangled, knotted, entrenched mess that it’s become?

Yesterday I finished reading Best Care Anywhere, which isn’t directly relevant to incidents like this but deepens my awareness of both the complexity of healthcare and the vast inefficiencies of how it’s done in most places throughout the US.  (If you care about fixing healthcare you should read this book. It’s only 136 pages and packed with eye-opening information.)

As regular readers know, since I recovered from a near-fatal cancer last year through excellent care at BIDMC, I’ve been educating myself about healthcare transformation.  I’ve been reading, I’ve been attending industry events, I’ve been meeting people, I’ve been blogging and reading blogs. And I’m being radicalized about what it’ll take to fix this thing.

See, I solve business problems for a living; I know how to study a situation, analyze it, identify the forces at work, and create solutions.  But the more I study American healthcare, the more I see it’s a mess.  There are many hardworking, motivated people in the system, yet our system doesn’t work nearly as well as anyone else’s in the developed world.  Why??

I’ve come to the conclusion that the only way out is to roll up all the windowshades and let people see in.

But one painful price for looking inside is that sometimes you have to see people die.  I mean, death.  Family in tears, funeral, tragedy.  Everyone who works in critical care or surgery deals with this.  Sometimes I don’t know how they do it.

We need to be brave enough, open-hearted enough, to risk the terrific pain of looking at these situations. If you’ve ever looked into a pus-filled wound, you know it’s gross. If you’ve ever seen a cancer-infested organ (I had a metastasis growing out of my tongue), you know it’s gross. But you don’t get to fix things if you can’t bear to look at them.

In summarizing his closing talk at last week’s Health 2.0 conference, Alan Greene MD, my colleague in the e-Patient Scholars Working Group, wrote:

Thomas Jefferson had a radical notion: When the people are well-informed, they can be trusted to govern themselves. …

Think about that “well-informed” for a moment. How well-informed are you about what happens every day inside a hospital?  If you’re not, how prepared are you to participate in your care, much less to think about solutions and transformation?

Dr. Greene continues:

I like that he used the word trust, by the way, perhaps the most used word at this conference. It isn’t just something we need to get from people in order to succeed. Trust is a two-way street.

We all need to be brave enough – and trusting enough – to let each other know all the particulars.

A reality is that medical care involves prancing around the edges of health, even the boundaries between life and death.  The cancer treatment I received, high dosage Interleukin-2, delivers a profound shock to the body, often bringing it to the edge of death and back. To succeed, the treatment must be skillfully managed, around the clock, for days at a time.

The art of such medicine is profound, beautiful, astounding. The science that creates it is astounding. The delivery of such care requires commitment, caring, skill.

But the business of healthcare in America today is a mess. As Best Care Anywhere documents at length, our healthcare delivery processes are mostly archaic, our payment systems are totally dysfunctional, and the whole thing is very much in need of a total makeover. Yet that’s really hard, because as you see when you educate yourself, the system is tangled. Tug on one part to start a solution, and six other things get knottier.

My hat goes off, and my hand goes over my heart, in salute to the many people who are so committed to creating a new world of better healthcare that they’re willing to let us see everything that goes on in their world. Sometimes they do not look good.  But to non-employees who are working very hard from the outside to make the system better, it’s deeply moving to see that a major institution is so committed to change than they’re willing to discuss everything in public, even the most difficult cases.

I’m firmly convinced that this is a vitally important requirement for transforming American health care. Without it there is no hope.