The Power of Patients

This story originally appeared in Medium publication I am Cheese: https://medium.com/i-am-cheese/the-power-of-patients-c0ed3425696a

Here is a story submitted by Steve Burrows, the writer/director of the HBO movie 'Bleed Out.' It has been watched by over 15 million people all over the world. Steve even got to meet President Joe Biden. Steve thinks patients have the power to change healthcare. Please hear him out.

In 2009, my Mom Judie Burrows - a retired special education schoolteacher - went in for a routine partial hip replacement and came out in a coma with permanent brain damage. My Uncle, a doctor, and my Aunt, a nurse, told me to get the medical records ASAP. Within minutes of reviewing the surgical records, my doctor Uncle discovered my Mom had lost over 1/2 the blood in her body during this botched surgery. He also uncovered that the anesthesia records were "medically impossible", and felt they had clearly been falsified. He ordered me to become power of attorney, get the medical records before the hospital changed them again, and get an attorney - that this was not only medical malpractice but an intentional cover-up.

And thus began my families decade long journey into medical, legal, and financial hell.

All of this endless horror would eventually be covered in our critically acclaimed, award-winning HBO documentary Bleed Out, now seen by over 15 million people all over the world.

The Good News… Since our debut, we have been so fortunate to have met thousands of patients and their families and heard their essential stories. We have met hundreds of dedicated healthcare workers… doctors, nurses, therapists, pharmacists, hospital administrators, etc., doing incredible work on the front lines trying to make it as safe, accountable, and transparent as possible for all of us. We have partnered with dozens of superb patient safety organizations fighting the good fight and have teamed up with medical schools, nursing schools, and universities across the country that are using my Mom's story to teach curriculum on how NOT to practice medicine. The love and compassion we have received from these beautiful people after a decade of feeling completely alone has been overwhelming, heart-warming, and inspiring.

The Bad News… although we have won many battles, we are losing the war. Despite our very best of intentions and monumental efforts, we are still getting our asses kicked in the fight for patient safety. We are an army of individuals and groups being led by none.

Ask yourself… "Who's in charge of healthcare? " and you will start to see what we are truly up against.

Since Bleed Out came out, we have literally heard from over 20,000 wounded souls and samurai warriors who have been affected by either my Mom's story and/or affected with their own stories of patient harm. They all ask me the very same questions…

"What can I do to get involved?"

"What can I do to make a difference?"

"What can I do to make sure this never happens to my loved one or anyone again?"

Admittedly, embarrassingly, I never seem to have a good enough answer for any of these precious human beings. I can point them in the right direction, I can send them key links to key organizations that may be able to assist, but I have never once given a satisfactory answer to any of these folks who absolutely deserve one.

How is it possible that after a ten-year struggle with medical error, I didn't know medical errors were the third leading cause of death in America? How is it possible that after a decade of living hell fighting for my mother and her life, I never knew that there were organizations out there trying hard to help someone like me? I have heard directly from the true leaders in patient safety in America that 20 years after the seminal "To Err Is Human," the patient safety movement is taking on water and losing momentum - fast. How is that even possible? Especially after our universal group experience of COVID-19? If all of us never comprehended that 'we are all patients' before Covid, surely we should have learned this post-Covid.

It's time to organize. For real and for keeps. It's time to harness the winds of anger and passion and love and compassion in this vast army of individuals called Us. There's a good reason why, when hospitals and doctors make mistakes, many of them don't do the right thing. The hard big city truth is they don't have to. Unless they have the ethical and moral compass, unless they have the structural wherewithal, unless they have the top down leadership, who is going to hold them accountable? Who's going to make them transparent? Who's going to insist that they apologize when they make a mistake? The people in charge of healthcare? Who is that again?

In my experience, unless the hospital's culture, the administration, the doctors, the nurses, and the staff that work there all support the tenets of patient safety, unaccountability will always continue to happen. Unless there's a combination of forces out there that literally forces them to do the right thing, they won't have to.

That's where we all come in. The patients. The medical-industrial complex is nothing without us. The hospitals, the doctors, the insurance companies, the doctors' insurance companies…etc. They need us. And we outnumber them.

For the love of God, we can do this. We put a man on the moon, for heaven's sake. As a country, do we really think that the size of one's wallet should determine the quality of one's healthcare?

So - who's in charge of Healthcare?

I think it should be us. All of us. The broken system will never get fixed without us. Without our voices, nothing changes.

Oh yeah… And how about a national cabinet-level organization like The Department of Patient Safety! If the corn and soybeans get their own damn Department of Agriculture, surely we patients should have one as well.

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