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Medical Errors: Will We Act Up, Fight Back?

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Sometimes, angry patients and dissident doctors and nurses warn of an impending patient revolution, observing that health care is so unsafe, of such poor quality and so expensive for us patients that we are soon going to rise up out of our beds, go to our windows and, in unison, holler, "I'm mad as hell and I'm not going to take it anymore!"

protest by Zoe on fotolia.comWe'll riot in the streets, crowd the lobbies of hospitals and storm the halls of Congress. We will not be ignored. And we'll force meaningful change. After all, as the recent documentary How to Survive a Plague reminds us, the gay community and others mobilized themselves during the AIDS crisis to great effect, with demonstrations, media coverage and pressure on Congress, the Administration and the research establishment.

The same thing is possible today, right?

Nominated last week for an Academy Award, director David France's film recounts how, in the 80's and early 90's, the AIDS crisis aroused an astoundingly effective response in the U.S. when virtually every person who contracted the virus died from it. Today, there are affordable treatments that work for many people over the long term. The AIDS crisis appears at least to the general public to be over, despite the 1.8 million deaths due to AIDS world-wide in 2010 alone.

The intense response to the devastation of the Human Immunodeficiency Virus (HIV) by people with AIDS, those at risk for infection, the gay community, friends, family, and health professionals particularly in New York City, spearheaded by ACT UP and the affiliated Treatment Action Group had at least three key characteristics:

  • A keen sense of urgency: For the first decade of the AIDS crisis, there were no interventions that slowed the virus. People with AIDS were devoid of hope: It was certain they would die. 
     
  • One disease, one community: AIDS was long-identified in the public's mind as a disease of gay men only, despite early evidence of causal ties to drug abuse and unprotected heterosexual sex. 
     
  • Absence of appropriate health care: The lack of hospital beds available for AIDS patients and the refusal by professionals to care for AIDS patients driven by stigma, fear of contagion, lack of resources and ignorance about the disease left some seriously ill people with no care at all.

For me, watching How to Survive a Plague brought back with sickening vividness the agony of the AIDS crisis in New York City. The deadly threat the virus posed to this specific community and the slow response by health care providers, the pharmaceutical industry and the government fueled the activism. Hundreds of people got on buses, marched, shouted, lay on the ground in front of government buildings and got arrested. It motivated dozens of people to become experts on HIV and to demand changes in how research was conducted, how drugs were developed, and how treatment approaches were devised and tested. It fired up all these people to come together and to figure out how to work the politics of confronting Congress, scientists, captains of industry and hospital administrators to demand change.

And then, as one of the leaders of ACT UP says in the film, "We got lucky." Medication was discovered that controlled the growth of the virus for many people. Since the first HIV protease inhibitor was approved for prescription use in 1995, the AIDS crisis has transformed into a more diffuse, familiar threat that competes with other diseases for attention and resources in the U.S. and internationally.

Yet, hot on the heels of the AIDS crisis, the IOM and others were beginning to document a larger and wilier foe: the crisis of preventable injuries and deaths caused by medical errors. This should pull us toward the windows to shout, "This is not acceptable!" The number of casualties is staggering. The first IOM report on medical errors, To Err Is Human, set the toll between 44,000 to 98,000 deaths annually. Even if this number is not exact, it is big, and subsequent estimates have been larger.

You'd think we'd be outraged by that number. After all, most of us use health care and so theoretically, we are all at risk. But beyond a few publicly visible clinician leaders, some really stalwart advocates, a few patient fueled advocacy organizations, and a steady drumbeat of frightening media reports, the American public has not taken to the streets or the airwaves. We are largely silent about the toll of medical errors on our kids, our parents and our neighbors.

I can only speculate why: The vast majority of us don't think there is a problem. We are generally hopeful about what health care can do to extend and improve our lives. We believe that while health care can be dangerous, our own doctors and hospital are safe. We are hopeful that medical interventions will cure or contain most serious diseases and allow us to live well with them for a long time. Medical errors are distributed widely and don't threaten any specific group apart from those who tend to be sicker and who thus have greater exposure to health care and the dangers it poses: those who are chronically ill and those who are older. And "to err is human," after all, so can anyone really be held to account?

But as I write this, I find myself getting mad. The number of deaths attributed to medical errors in 1999 was estimated at nearly 100,000, and today it is more, not substantially less. I'm sorry. That's just not good enough.

I'm angry that the last time I was in the hospital my husband had to sit beside me like a guard dog all day long. Because I was alone at night, my sleep was haunted by the threat of injury and error.

I'm heartbroken when weekly I read fresh stories of families who have needlessly lost a child or a mom because of avoidable errors in care.

I'm offended that the venerable consumer protection publication Consumer Reports acquiesces to the threat, recommending not that we rise up in protest against the slow response of medical institutions but rather that we hire a private duty nurse if we can't enlist a sufficient number of family members to provide 24-hour protection when we are in the hospital.

The crisis in patient safety resembles the AIDS crisis in two critical ways: It is needlessly killing a lot of people and those who have the responsibility to stop it have not made meaningful progress in the intervening 14 years since it was identified as a serious problem.

That's worth getting mad about.

Are you outraged? If not, why?

Why do you think most of us remain silent in the face of these many injuries and deaths, despite our own risk and the constant media coverage about both individual cases and aggregate statistics?

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Inside Healthcare   Jessie Gruman   Find Good Health Care   Accidents and Safety  


Comments on this post
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Michael Millenson says
October 15, 2013 at 7:48 PM

Jessie, I've been thinking about this quite a bit, as I know you have. I don't have an answer, other than the fact that most of those who have been sick just want to forget the experience (good or bad). It is appalling by any standard that you need a "watchdog" in the hospital -- and, in fact, that is not paranoia. Virtually every knowledgeable observer believes that you do.

I do, however, have one political thought on our lack of clout. It is time to activate the disease groups. The victims of medical error suffer from heart disease, cancer, stroke, AIDS, Parkinson's, etc., and yet, to my knowledge, none of the advocacy groups in these areas spend any of their money or political clout pushing patient safety. It's all about "the cure." Which I'm all in favor of, but, unless we're talking faith healing in the comfort of your home, or magic pills, cure involves being treated by the medical system.

How can we get the American Cancer Society, American Heart Association, the Michael J. Fox Foundation, the Susan Love Foundation or any of the others to care deeply as at least one part of their message about safety? Devote lobbying clout and part of their website and part of their patient messages to safety? That, to me, is one way to leverage our clout.

Just an idea.

Michael

George Patrin says
October 2, 2014 at 9:52 PM

As a physician with 33 years under my belt, I am embarrassed by the lack of integrity and transparency in my chosen profession. I have turned my attention and energies to identifying medical errors and helping those committing them to own up to it and learn from them. We must stop hiding behind HIPAA and welcome families into the hospital board room to discuss what happened, every time, and how to prevent it for anyone else, patient or provider. Jessie led the way, we must keep it up!