Outrage: The crisis in patient safety

Sometimes, angry patients and dissident doctors and nurses warn us about the impending patient revolution – how 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!

We’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 recently 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?

Jessie Gruman is the founder and president of the Washington, DC based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.

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  • drgg

    the problem is when you are sick, you are inundated with how to stay alive and get help. It is only at that time that people realize the pot holes in the system that even with insurance you cannot get adequate care for a wide variety of reasons. I think your analogy with AIDS may be very different than current issue because after all we are dealing with capitalism and corporations with lobbyists which happens to be much more virulent.

  • azmd

    Most of us remain silent because the problem is a fairly obvious one, but without an easy answer. Medicine has become incredibly complex. It only follows that in order to manage medical problems, more man-hours are required than used to be the case. And yet, our healthcare system is insisting that we all do more work in less time, when it should be just the opposite.

    Every action involved in the care of a patient should be checked and thought through carefully. But it can’t be, because the system doesn’t want to allocate the resources that would make that possible. Everyone is rushed, from the doctor who writes an order, to the nurse who gives the medication, and the many people in between. Errors will happen under those circumstances, because humans are humans, not robots.

  • http://www.facebook.com/profile.php?id=1624302541 Bruce Ramshaw

    Unlike the aviation industry which is primarily a complex, mechanical system (with a minor human factors component), healthcare is a very complex biologic (adaptive) system. The solutions for improving safety are therefore different and will require a disruptive innovation in how we deliver healthcare. By reallocating resources around definable patient groups and care processes, we would see significant and sustainable improvement in the value and safety of patient care. I think the lack of effort is a result of the lack of understanding of systems science that allows us to understand that a solution is possible, but not without a significant change in how we deliver care.

  • Docbart

    Medical errors are certainly a major problem. I think, though, that the numbers presented are very much conjecture, and influenced by the agenda of those who present them.
    That being said, the causes are multifactorial. We are human, and thus fallible. There is a rush to see more patients and spend less time, and to have care rendered by NP’s and PA’s, who have less training, all for financial reasons. There is also a culture of cover-up- not documenting issues that adversely affect care and not telling patients about them, for fear of lawsuits. If medicine emulated the airline industry, with “black boxes” that record all and there were less fear of litigation, we might make more progress and achieve a safety record closer to that of the airlines.

  • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

    We expect clinicians to see older more complex patients in less time. We have separate in patient physicians and out patient physicians with poor handoffs. Nurses on traditional floors may have eight patients to care for. Instead of putting more nurses and caregivers on the floor hospitals are forced to put bean counters on the floor monitoring for compliance with rules and regs put in place by self serving organizations like JCAHO. Patients medications are changed routinely by their health insurance drug plans without actually learning first if the change has been previously tried and been successful or if the new drugs unique properties won’t fix the problem. The patients are primarily interested in the cost so if they actually have a doctor who questions the decision, the patient complains that the doctor is jacking up their medication costs. These are the tip of the iceberg reasons why mistakes occur in a system created by insurers and employers to save cost yet they are actually creating havoc and more cost.

  • Jim Jaffe

    great post. I’m mad as hell, too. but what is to be done?

    there was a definable community containing many healthy people that was threatened by the AIDS issue. They were already mobilized for political purposes and responded well to this shared threat.

    that may have been an unusual situation that defies replication. sick people and their families are too involved with their own problems to raise broader questions. few survivors of really horrible situations have successfully lobbied for some procedural changes. but most of us hope we’ll stay well and hope further that we’ll be among the majority of patients who aren’t harmed by the quality of care. once we learn we weren’t lucky enough to get sorted into that group, we’re too distracted to go out and organize

  • http://twitter.com/ssnbn1 Susan Borden

    I remember sweet little 90-something year old patients that entered the hospital for the 1st or 2nd time in their otherwise healthy lives. Their stated history was no, or one, medication daily. By the end of the shift the docs had 12-18 drugs to give them. They always left in body bags. As good as pharmaceuticals can be at saving/prolonging lives, they can be deadly killers by the hundreds of thousands, especially when given as cocktails. I still mourn those losses. I always practice a big dose of skepticism with Big Pharma, and encourage every one I know to do so.

  • buzzkillerjsmith

    Crisis. And yet life expectancy continues to go up and up. Go figure.

    • http://www.facebook.com/robert.luedecke Robert Luedecke

      As an anesthesiologist, I know for a fact this article is right on the money. Hospitals are just now starting to identify ways we can improve our systems so we accidentally kill fewer people in hospitals. My specialty has been the first to put into action systems that make medical care safer and it shows in the falling rate of anesthesia deaths. Medicine is so complex that we can all try as hard as we can, and there will still be mistakes, because we are all human. The airlines have few problems because of system improvements, not hiring more careful people. Our life expectancy is still rising, but it is not because we are not killing many people in hospitals with mistakes, but only that we are not killing enough to affect our average life expectancy.

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