This post is part of our two-week series commemorating the 10-year anniversary of the seminal IOM Report "To Err Is Human." To see all posts in the series, please click here.
Last July 26 started out like a typical summer Sunday; pancakes with the family, talk about an afternoon at the neighborhood pool. Instead, I spent the day at the ER, suddenly and horribly ill with pyelonephritis and bacteremia. I was lucky; four days of IV antibiotics knocked back the bad bugs (thank you, Cipro!). But I spent those days in the hospital worrying about more than when I’d be back home cooking dinner for the family. As I watched the IV drip, hour after hour, I fretted. Was I being given the right medication? The right dose? How could I tell if there was a medication error? As a journalist who has covered health care quality for years, I knew what I should do: Check medications and doses; ask questions; recruit a family member to be my advocate. Did I do those things? Nope. Afraid that I’d be labeled a nutcase or a troublemaker by the busy nursing staff if I voiced my fears, I clammed up.
My tiny medical drama ended happily. But each year, tens of thousands of patients aren’t so lucky. Ten years after the publication of the landmark Institute of Medicine Report “To Err Is Human,” patients remain subject to errors in medical treatment that threaten their health and their lives. The federal government, hospitals, foundations, and health care providers have made concerted efforts to educate patients on their role in protecting themselves from medical errors. I’ve done my part, too, writing about successful experiments to reduce medical errors, as well as “News You Can Use” articles intended to help patients and their families advocate for safer, better care. Yet too often, patients like me still feel powerless, rather than empowered.
That powerlessness is not indifference. Survey after survey over the past 10 years has shown that Americans remain deeply concerned about the risk of medical error, and almost half say they or a loved one has been affected. When “To Err is Human” was released, 51 percent of the public followed the report closely, according to the Kaiser Family Foundation. At the time, polls revealed that most people thought the solution was to weed out incompetent providers. But the IOM report made it clear that most medical errors are caused not by bad apples, but by systems failures. Telling sick, scared patients that they need to confront the American health care system in order to fix it seems audacious at best.
Surely I’m not the only patient who bristles at well-meaning statements that seem to imply that we patients should quit being ignorant wimps: “When patients and their families are educated and understand why and how they need to actively participate in their care, and when they feel empowered to do so, their involvement can help to prevent medical errors and enhance safety.” (Patients as Partners: How to Involve Patients and Families in Their Own Care, Joint Commission Resources, 2006) Patient empowerment may be a noble goal, but for now it too often sounds like being handed responsibility without power.
Indeed, family members often say they feel wracked with guilt for not preventing medical errors. A 2007 perspective in the New England Journal of Medicine quotes one woman interviewed for a documentary about medical errors whose brother died after being mistakenly given morphine, despite the family’s repeated warnings that he had had life-threatening reactions in the past. “The feeling was impotence, because you can’t stay with a patient 24 hours a day. That’s why you rely on hospitals – you rely on nurses. You feel like you failed your family in terms of ‘I should have been there.’ That’s a guilt that everyone shares.” Other patients interviewed say they feared retribution, including withdrawal of medical care, if they pointed out mistakes. And patients and family members who do speak up say they are often shunned by doctors and nurses.
But just as health care systems are experimenting with novel technologies to reduce medical errors, patients are seizing new technologies that make it possible for them to collaborate and interact with each other in order to ferret out medical errors and make informed decisions. I recently interviewed participants in PatientsLikeMe.com, a database of symptoms and treatments created by patients themselves. They control their own data, and can use the collaborative database to evaluate their own medical care, and comment on others’. As a result, patients have discovered that they were misdiagnosed or misprescribed, and have changed their care for the better. I’ve interviewed patients who use do-it-yourself genetic testing through sites like DNADirect to find out if they have the BRCA gene variant for breast cancer and ovarian cancer, then update their insurance and estate planning before meeting with their doctor to develop a treatment plan. On the website Diabetes Mine, patients vigorously debate the merits of glucose meters and insulin pumps, and veterans share hard-won knowledge with newbies. Diabetes Mine founder Amy Tenderich writes in the new Journal of Participatory Medicine: “Every day, networks for interacting with others online are getting better at affording patients the opportunity to collectively communicate with medical providers and with the drug industry that caters to them.”
Many of the new tools being touted for patient-driven participatory medicine are little more than snake oil with a url, demanding much work (such as typing in my family’s entire medical record) with little reward. But as the tools that let people collaborate with each other get cheaper, better, and easier to use, we patients stand a much better chance of being able to find the information and support we need, and participate in our health care as co-equals. I know I’m not the only patient who has lain in a hospital bed worrying about medical errors, but stayed silent. Connecting with other patients like me could have given me the information and confidence to speak out if I needed to, or the reassurance that I could relax and get well.
This post is written by Nancy Shute, a contributing editor for US News & World Report, and vice president of the National Association of Science Writers. Contact her at nancy@nancyshute.com.
Last July 26 started out like a typical summer Sunday; pancakes with the family, talk about an afternoon at the neighborhood pool. Instead, I spent the day at the ER, suddenly and horribly ill with pyelonephritis and bacteremia. I was lucky; four days of IV antibiotics knocked back the bad bugs (thank you, Cipro!). But I spent those days in the hospital worrying about more than when I’d be back home cooking dinner for the family. As I watched the IV drip, hour after hour, I fretted. Was I being given the right medication? The right dose? How could I tell if there was a medication error? As a journalist who has covered health care quality for years, I knew what I should do: Check medications and doses; ask questions; recruit a family member to be my advocate. Did I do those things? Nope. Afraid that I’d be labeled a nutcase or a troublemaker by the busy nursing staff if I voiced my fears, I clammed up.My tiny medical drama ended happily. But each year, tens of thousands of patients aren’t so lucky. Ten years after the publication of the landmark Institute of Medicine Report “To Err Is Human,” patients remain subject to errors in medical treatment that threaten their health and their lives. The federal government, hospitals, foundations, and health care providers have made concerted efforts to educate patients on their role in protecting themselves from medical errors. I’ve done my part, too, writing about successful experiments to reduce medical errors, as well as “News You Can Use” articles intended to help patients and their families advocate for safer, better care. Yet too often, patients like me still feel powerless, rather than empowered.
That powerlessness is not indifference. Survey after survey over the past 10 years has shown that Americans remain deeply concerned about the risk of medical error, and almost half say they or a loved one has been affected. When “To Err is Human” was released, 51 percent of the public followed the report closely, according to the Kaiser Family Foundation. At the time, polls revealed that most people thought the solution was to weed out incompetent providers. But the IOM report made it clear that most medical errors are caused not by bad apples, but by systems failures. Telling sick, scared patients that they need to confront the American health care system in order to fix it seems audacious at best.
Surely I’m not the only patient who bristles at well-meaning statements that seem to imply that we patients should quit being ignorant wimps: “When patients and their families are educated and understand why and how they need to actively participate in their care, and when they feel empowered to do so, their involvement can help to prevent medical errors and enhance safety.” (Patients as Partners: How to Involve Patients and Families in Their Own Care, Joint Commission Resources, 2006) Patient empowerment may be a noble goal, but for now it too often sounds like being handed responsibility without power.
Indeed, family members often say they feel wracked with guilt for not preventing medical errors. A 2007 perspective in the New England Journal of Medicine quotes one woman interviewed for a documentary about medical errors whose brother died after being mistakenly given morphine, despite the family’s repeated warnings that he had had life-threatening reactions in the past. “The feeling was impotence, because you can’t stay with a patient 24 hours a day. That’s why you rely on hospitals – you rely on nurses. You feel like you failed your family in terms of ‘I should have been there.’ That’s a guilt that everyone shares.” Other patients interviewed say they feared retribution, including withdrawal of medical care, if they pointed out mistakes. And patients and family members who do speak up say they are often shunned by doctors and nurses.
But just as health care systems are experimenting with novel technologies to reduce medical errors, patients are seizing new technologies that make it possible for them to collaborate and interact with each other in order to ferret out medical errors and make informed decisions. I recently interviewed participants in PatientsLikeMe.com, a database of symptoms and treatments created by patients themselves. They control their own data, and can use the collaborative database to evaluate their own medical care, and comment on others’. As a result, patients have discovered that they were misdiagnosed or misprescribed, and have changed their care for the better. I’ve interviewed patients who use do-it-yourself genetic testing through sites like DNADirect to find out if they have the BRCA gene variant for breast cancer and ovarian cancer, then update their insurance and estate planning before meeting with their doctor to develop a treatment plan. On the website Diabetes Mine, patients vigorously debate the merits of glucose meters and insulin pumps, and veterans share hard-won knowledge with newbies. Diabetes Mine founder Amy Tenderich writes in the new Journal of Participatory Medicine: “Every day, networks for interacting with others online are getting better at affording patients the opportunity to collectively communicate with medical providers and with the drug industry that caters to them.”
Many of the new tools being touted for patient-driven participatory medicine are little more than snake oil with a url, demanding much work (such as typing in my family’s entire medical record) with little reward. But as the tools that let people collaborate with each other get cheaper, better, and easier to use, we patients stand a much better chance of being able to find the information and support we need, and participate in our health care as co-equals. I know I’m not the only patient who has lain in a hospital bed worrying about medical errors, but stayed silent. Connecting with other patients like me could have given me the information and confidence to speak out if I needed to, or the reassurance that I could relax and get well.
Wow - as a doctor who strongly encourages patients to take a role in helping to ensure quality of care and prevent medical error, I am astonished that patients are resorting to "non-professional" websites to diagnose and treat disorders.
ReplyDeleteI do understand, however, your reluctance to speak up about your own care. I do believe there is a way to do it so that you do not come off as untrusting or hostile. I expect patients to know what medications they are getting and hope they ask questions rather than keep quiet in fear. We are not the enemy! We want you to get better!
I have even developed a "patient safety" kit for patients to keep at their bedside to "gently" remind nurses and doctors to wash their hands and clean their stethoscopes before examining them.
Patients and doctors need to work together as a team. The fractionation of healthcare--for a variety of reasons--has served as a disservice to us all.
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When I was in the hospital undergoing chemo treatment for AML, my Doctor's number one rule was "Do not assume that ANYONE knows what they are doing". He always made it a point to tell me any time that he was going to change anything and what to expect. Over the time that I was in the hospital, This prevented my getting medications for the patient next door and a double dose of one of the chemo treatments, among a few other things.
ReplyDelete"Surely I’m not the only patient who bristles at well-meaning statements that seem to imply that we patients should quit being ignorant wimps." - YES. Thank you. I'm fine with patients wanting to do all they can to ensure good medical care, but the responsibility ultimately lies with the doctor. When it comes down to it, the only real way patients have power is once they talk to medical malpractice lawyers about pursuing legal action.
ReplyDelete