Justin's HOPE healthcare tumblelog
In loving memory of our precious child~by dale ann micalizzi
Healthcare Openness Professionalism Excellence
Contact and Comments to: micalizzidag@aol.com Justin's HOPE at the Task Force For Child Survival and DevelopmentCompassion in Healthcare-The Heart of Healing
ABC News: Underprivileged Kids Even on Keel-Row as One
The Hospitalist: Medical Mistakes, 10 Years Post-Op
Great insight into barriers to progress: “…Third is to be authentic about teamwork across professions. In the medical culture at large, there still is too much focus on turf issues between doctors and nurses. I believe in the long run new safety initiatives will be fostered by teams working at unprecedented levels of collaboration, reaching across traditional boundaries….”
Lack of teamwork is where I see much of the problem, as well. As I’m invited further into the behind the scenes work and healthcare conversations, there are still turfs and those that just won’t budge to let someone new or different step into their territory.
The orchestra isn’t playing in harmony. Wouldn’t it be awesome to establish new collaborations with artistic partners that get the right results. Here’s a lesson for students: http://artsedge.kennedy-center.org/content/3952/
Slate: It's So Hard To Say I'm Sorry
The financial and personal ramifications that come when a doctor apologizes to a patient. Wonderfully written article by Rahul Parikh. Thank you!
“…I didn’t know any of these things about disclosure or apologies when I was taking care of Andy. I just knew that I had to make amends. Soon after Andy recovered, I called his mother. I could hear the resentment in her voice when she picked up the phone. I swallowed hard and told her what she had already figured out—that I had missed the swelling in Andy’s eye. I said how sorry I was for what had happened and for my mistake. Most of all, I told her, I was sorry for putting Andy through any pain. After what happened, I spent a great deal of time reviewing photographs of papilledema and checked the eyes of every patient I could to make sure I knew what a normal optic disc was supposed to look like. I had no intention of making this mistake again…”
The power of apology by Marie Bismark MD, JD
Thanks to Marie Bismark, Robin Youngson, IHI and the New Zealand Medical Journal for spreading the word!
Please click on title and read and share Marie’s wonderful article with your staff. Have a discussion and use it in medical/nursing/pharmacy schools. I am honored to work with this wonderful group of compassionate leaders. Join our facebook group, as well, Compassion in Healthcare-The Heart of Healing. Robin is the founder of The Center for Compassion in Healthcare in New Zealand. http://www.compassioninhealthcare.org/
Marie writes: “An apology to the patient following an adverse event can bring comfort to the patient, forgiveness to the health practitioner, and help restore trust in their relationship. Yet, for many practitioners saying “I’m sorry” remains a difficult thing to do. This article explores the key elements of a full apology and when they should be used, and how to support practitioners in making an apology to patients who have been harmed.”
Joint Commission Resources: A Patient Safety Handbook for Ambulatory Health Care
Many thanks to the Joint Commission for including MH information in this new publication! Since I’m on the MHAUS Board of Directors, I’ve had the privilege of working with this wonderful group of professionals with patient safety as their top priority. I selfishly enjoy being privy to the case discussions on their listserv because it validates the kindness and compassion that these physicians feel following a hotline call, complication or a death. Their words are healing for me.
This new JC publication provides a case study on how the MHAUS MH Procedure Manual is used by an Ambulatory Surgery Center. Please purchase the book for your facilities and universities.
You can also find new patient/physician surveys or our MHAUS site or join us on facebook or twitter.
http://medical.mhaus.org/index.cfm/fuseaction/newsletter.view/newsletterId/34.cfm#article_128
After Errors, Hospital Must Put Video Cameras in ORs (WSJ)
“Patients will have to consent to having their procedures captured on video. The monitoring equipment will be used to analyze the hospital’s safety procedures. You can read all the details for yourself in this letter that the state health department sent to Rhode Island Hospital yesterday.”
Several of us have been advocating for this for years. We were told that physicians said that it would be an invasion of THEIR privacy…not the patients and they refused.
Dead by Mistake reviews our Modern Healthcare articles
…”Errors don’t erode trust. The way we act after the errors does.”
I’m beginning to think that the feeling of indifference plays a huge part in all this. The feeling that our loved ones don’t matter to those that we trusted to care for them and that this behaviour is accepted.
Following the release of another article that I assisted with, a physician wrote an op/ed to criticize its contents. The physician compared appeasing parents whose children had died to appeasing Hitler, stating that apologies and discussions were useless. What kind of mentality would even write such a comment? And, he’s a pediatrician in th UK.
Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.
Hopefully, those of us that expect better will continue to fight the good fight and we will win.
Changing course by Jean DerGurahian (Modern Healthcare Magazine)
Changing course
A few well-publicized cases of medical errors have led the hospitals involved to transform how they approach patient safety.
By Jean DerGurahian
Posted: November 2, 2009 - 5:59 am EDT (click on title for story-sub req)
This is the second part of a two-part series on the effects of patient-safety advocates. Part one of the series, which ran Sept. 7 (p. 6), described how three women went from parent to patient-safety advocate as a result of medical errors.
My friends have received some results after much hard work:
“…In the past five years, St. Luke’s has formalized a disclosure policy that calls for attending physicians to talk with families after care that resulted in unanticipated outcomes. It’s not an admission of guilt, and it’s not just about medical errors, but deals with any results that were unexpected, Hill said. That brings the human element back into patient care. “To do nothing about it is unconscionable….”
Sadly, our story has had little impact or connection with the involved hospital in Justin’s care so I have decided to change course, as the article states, after almost 9 years and focus on working with those that have an interest in change. Our waiting for CEOs, PR folks or physicians to return phone calls needs to stop so I can continue to be instrumental in my goal of saving more lives from harm. I’m done waiting.
Please join me. Changing a culture is difficult but your children and family are worth your effort. Dr. Peter Pronovost quotes Margaret Mead in his emails to me: “Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.”
Any other hospital in NY, or elsewhere, is more than welcome to contact me for guidance. I’ve consumed myself in this topic of safety and disclosure following adverse medical events and would love to help you move foward!
THE PATIENT SAFETY IMPERATIVE FOR HEALTH CARE REFORM: LUCIAN LEAPE INSTITUTE
“Never before in the history of the US healthcare system has there been a more opportune time to engage the full spectrum of stakeholders in a comprehensive effort to improve the manner in which we deliver health care to our citizens. The commitment of the Administration to health care reform affords a welcome opportunity to accelerate improvements in patient safety, a discipline that utilizes a systems approach to improving health care processes and, therefore, outcomes….”
Open Disclosure Resources Tom Gallagher presentations – June 2009
Tom is one of the experts in the field of disclosure following an adverse medical event and has written and presented on the topic globally.
Australian Commission on Safety and Quality in Heath Care shares his recent presentations:
“Dr Tom Gallagher is practising physician and Associate Professor of Medicine at the University of Washington and is renowned for his work in the field of open disclosure.” Informative ppts. (click on title for link)
IHI: Leadership Response to a Sentinel Event: Respectful, Effective Crisis Management
“IHI periodically receives urgent requests from organizations seeking help in the aftermath of a serious organizational event, most often a significant medical error. In responding to such requests, we draw on learning and examples assembled from many courageous organizations over the last 15 years who have respectfully and effectively managed these crises.”
Thank you!
Wachter's World: Can Patients Help Ensure Their Own Safety? More Importantly, Why Should They Have To?
I happen to agree with Bob on this post although I have often recommended patient empowerment books and organizations that promote that behavior. There is a difference between becoming partners in your care and becoming an activist that gets in the way of good care. I’ve seen/met both and I favor the partnering primarily because of my career in pediatric health. I’ve been there and even after all of the horific stories that I’ve heard, I know that there are still wonderful, caring people working in healthcare who know what they’re doing.
I understand when health caregivers are trying to do their job and an obnoxious relative is actually causing so much stress that more harm may be caused by the encounter than good. They’re always looking over their shoulder for the “intruder” to cause an incident at the expense of focusing on their profession and their patient.
Speaking up when you don’t feel that something is right is necessary or if you see the caregiver not washing their hands or using unsanitary practices, you MUST jump in respectfully. There is a fine line here and my hope is that patients and families will become aware but back off when they really don’t know what is best and trust the physician or nurse to do what they were trained to do.
Seeing too many skeptical relatives oversee care may just cause the opposite effect and more errors will be made. Tread lightly and be cautious but don’t think that you are the educated one in this complicated field of medicine when you’re not. The time has come to partner not destroy relationships totally. Ask questions, be prepared, research, ask questions again but don’t become the activist that makes providers turn away when they see you coming.
October celebrates Health Literacy Month, National Healthcare Quality Week
HC Pro Patient Safety Monitor Blog by Heather Comak is a great place for information on patient safety and other quality news! “The month of October brings us two health-related events to celebrate: Health Literacy Month and National Healthcare Quality Week (October 18-24). Both events give healthcare workers and their organizations a chance to think about current practices and how to improve in the name of patient safety.”
State checks on why few medical errors being reported By Eric Nadler Hearst Publications (click for link)
“…We need transparent, accurate, well understood information on hospital adverse events,” she added in a recent interview. “We need to be able to know what our hospitals are doing and how much they are improved. If you don’t have the data, you can’t measure improvement….”
![Schenectady Daily Gazette Sunday, October 4, 2009 (click on photo for link to publication)
Peter R. Barber Gazette Photographer
Memo: ‘We’re slowly having an impact. We’re kind of in our teenage years. We’re getting our ideas out there.’ DALE ANN MICALIZZI Patient safety advocate Son’s death leads woman to monitor patient safety
By Sara Foss Gazette Reporter sfoss@dailygazette.net
Every day, Rotterdam resident Dale Ann Micalizzi receives more than 100 e-mails and phone calls from distraught families who suspect something went wrong during their loved one’s medical care. Micalizzi knows what that’s like. In 2001, her 11-year-old son, Justin, died during a routine surgical procedure marred by errors and complications. In the years since, she has become an outspoken patient safety advocate, pushing hospitals to improve their quality of care and be open with patients and families if something goes wrong.
“I don’t want this to happen to somebody else,” said Micalizzi.
Today Micalizzi heads an organization, Justin’s HOPE, dedicated to improving pediatric health care. She regularly tells her story at conferences on patient safety and health care quality. Hospital CEOs contact her seeking advice on how to disclose medical errors to a grieving family; she tells them to “be open and honest and do it fairly.”
She also serves on the board of The SorryWorks! Coalition, an organization formed in 2005 that advocates for disclosure, apology and compensation after errors in medicine, business, insurance and the law. Along with her husband, Gary, she also leads a support group for parents whose children have died.
Micalizzi’s work is part of a broader movement that aims to bring more attention to the problem of preventable medical errors.
The movement is relatively new. But it’s grown significantly during the past decade, the result of advocacy by organizations such as the Cambridge, Mass., Institute for Healthcare Improvement, which was formed in 1991, and technological advances such as Facebook and e-mail that have made it easier for people like Micalizzi to connect with like-minded individuals and groups.
“We’re slowly having an impact,” Micalizzi said. “We’re kind of in our teenage years. We’re getting our ideas out there.”
Jim Conway, senior vice president at the Institute for Healthcare Improvement, agreed. “We’re hearing more about tragic errors, but we’re also seeing a much more dramatic engagement of consumers to change the system.” He called Micalizzi one of the movement’s “early pioneers. Dale has helped the conversation grow.”
LANDMARK REPORT
A watershed moment in the patient safety movement was the release of a landmark report, titled “To Err is Human,” in 1999 by the Institute of Medicine.
The study found that between 44,000 and 98,000 people die in hospitals each year as a result of medical errors that could have been prevented. “Even using the lower estimate, preventable medical errors in hospitals exceed attributable deaths to such feared threats as motor vehicle wrecks, breast cancer and AIDS,” the report says.
The study lists some common medical errors: “adverse drug events and improper transfusions, surgical injuries and wrong-site surgery, suicides, restraint-related injuries or death, falls, burns, pressure ulcers and mistaken patient identities. High error rates with serious consequences are most likely to occur in intensive care units, operating rooms and emergency departments.
“Beyond their cost in human lives, preventable medical errors exact other significant tolls,” the report says. “They have been estimated to result in total costs [including the expense of additional care necessitated by the errors, lost income and household productivity, and disability] of between $17 billion and $29 billion per year in hospitals nationwide. Errors also are costly in terms of loss of trust in the health care system by patients and health professionals.”
Conway became IHI’s senior vice president four years ago, after serving as chief operations officer at the Dana-Farber Cancer Institute in Boston. At Dana-Farber, Conway worked to improve health care quality, meeting with people who had been victims of medical error and implementing reforms.
This effort was partly in response to the 1994 death of Boston Globe health columnist Betsy Lehman after a young doctor accidentally prescribed four times the intended dose of breast cancer medication.
Medical errors are far too common, Conway said. “If I give a talk, I ask the audience whether they or any of their family members have experienced a medical error in the past two years,” he said. “Between 30 to 50 percent of the hands go up. People are starting to understand that for all the good stuff that goes on in health care, there’s a lot of suffering and waste.”
BAD SYSTEMS
Most mistakes are the result of bad systems, not bad people, Conway said. Too much information is still conveyed on “index cards and Post-It Notes,” rather than through computers. A lot of errors occur at “transfer points” — when a patient is being moved to a new location, such as a nursing home, or discharged. “We haven’t had good, reliable systems to ensure that handoff [is successful].” He said more transparency is needed. “Not that long ago, hospitals didn’t disclose medical errors,” he said. But that culture and fear of litigation is changing.
“What the Dana-Farber board learned is that we have a moral and ethical responsibility to disclose,” Conway said.
One of the people working for change is Kelly O’Connor, a graduate student at the School of Public Health at the University at Albany. A year ago, she founded an IHI chapter on campus. “It’s primarily targeted toward students in the health professions so that they can become agents of change in health care improvement,” O’Connor said.
She became interested in health care improvement while working as a clinical research coordinator at Dana-Farber, where she observed how medical errors get made first-hand. She said that sometimes patients would have blood drawn twice because it wasn’t done properly the first time. “I hated to see that.” Many of the system’s failures were the result of poor communication.
scholarship money
Through Justin’s HOPE, Micalizzi raises money for a scholarship that is awarded to caregivers who served the “underprivileged and underserved pediatric populations globally.” These scholarships cover the cost of attending an annual conference on quality improvement in health care sponsored by IHI.
Micalizzi said she knew something had gone wrong with Justin’s care almost immediately. But she didn’t know what, and explanations were not forthcoming.
“I just wanted people to sit down and talk to us.”
Justin was a healthy child. But one day he came home from school complaining of ankle pain and a slight temperature. The Micalizzis visited a pediatrician, who gave Justin medication. But the boy’s condition didn’t improve. He was nauseous. He vomited. That evening, his parents decided to take him to take him to St. Peter’s Hospital to have his septic ankle drained. They were told the procedure would take about 10 minutes, but the wait was much longer. Finally, the orthopedic surgeon informed them that Justin had hemorrhaged and gone into cardiac arrest on the operating table. The boy was transported to the pediatric intensive care unit at Albany Medical Center, where he died.
Dissatisfied with St. Peter’s response to their questions, the Micalizzis eventually filed a lawsuit, hoping to learn what happened during the discovery process. “We weren’t interested in money,” Micalizzi said. “We didn’t want to retaliate. We just wanted answers.” In 2003, they dropped the case.
A state Department of Health investigation did yield some answers — a resident had performed Justin’s surgery, not, as they’d believed, a surgeon — but not enough. To this day, the Micalizzis still do not understand why Justin died.
“We still don’t know what caused it,” said Gary Micalizzi. “We don’t know.”](http://1.media.tumblr.com/tumblr_kr0b4gOp0h1qz7ma3o1_100.jpg)
Schenectady Daily Gazette Sunday, October 4, 2009 (click on photo for link to publication)
Peter R. Barber Gazette Photographer
Memo: ‘We’re slowly having an impact. We’re kind of in our teenage years. We’re getting our ideas out there.’ DALE ANN MICALIZZI Patient safety advocate Son’s death leads woman to monitor patient safety
By Sara Foss Gazette Reporter sfoss@dailygazette.net
Every day, Rotterdam resident Dale Ann Micalizzi receives more than 100 e-mails and phone calls from distraught families who suspect something went wrong during their loved one’s medical care. Micalizzi knows what that’s like. In 2001, her 11-year-old son, Justin, died during a routine surgical procedure marred by errors and complications. In the years since, she has become an outspoken patient safety advocate, pushing hospitals to improve their quality of care and be open with patients and families if something goes wrong.
“I don’t want this to happen to somebody else,” said Micalizzi.
Today Micalizzi heads an organization, Justin’s HOPE, dedicated to improving pediatric health care. She regularly tells her story at conferences on patient safety and health care quality. Hospital CEOs contact her seeking advice on how to disclose medical errors to a grieving family; she tells them to “be open and honest and do it fairly.”
She also serves on the board of The SorryWorks! Coalition, an organization formed in 2005 that advocates for disclosure, apology and compensation after errors in medicine, business, insurance and the law. Along with her husband, Gary, she also leads a support group for parents whose children have died.
Micalizzi’s work is part of a broader movement that aims to bring more attention to the problem of preventable medical errors.
The movement is relatively new. But it’s grown significantly during the past decade, the result of advocacy by organizations such as the Cambridge, Mass., Institute for Healthcare Improvement, which was formed in 1991, and technological advances such as Facebook and e-mail that have made it easier for people like Micalizzi to connect with like-minded individuals and groups.
“We’re slowly having an impact,” Micalizzi said. “We’re kind of in our teenage years. We’re getting our ideas out there.”
Jim Conway, senior vice president at the Institute for Healthcare Improvement, agreed. “We’re hearing more about tragic errors, but we’re also seeing a much more dramatic engagement of consumers to change the system.” He called Micalizzi one of the movement’s “early pioneers. Dale has helped the conversation grow.”
LANDMARK REPORT
A watershed moment in the patient safety movement was the release of a landmark report, titled “To Err is Human,” in 1999 by the Institute of Medicine.
The study found that between 44,000 and 98,000 people die in hospitals each year as a result of medical errors that could have been prevented. “Even using the lower estimate, preventable medical errors in hospitals exceed attributable deaths to such feared threats as motor vehicle wrecks, breast cancer and AIDS,” the report says.
The study lists some common medical errors: “adverse drug events and improper transfusions, surgical injuries and wrong-site surgery, suicides, restraint-related injuries or death, falls, burns, pressure ulcers and mistaken patient identities. High error rates with serious consequences are most likely to occur in intensive care units, operating rooms and emergency departments.
“Beyond their cost in human lives, preventable medical errors exact other significant tolls,” the report says. “They have been estimated to result in total costs [including the expense of additional care necessitated by the errors, lost income and household productivity, and disability] of between $17 billion and $29 billion per year in hospitals nationwide. Errors also are costly in terms of loss of trust in the health care system by patients and health professionals.”
Conway became IHI’s senior vice president four years ago, after serving as chief operations officer at the Dana-Farber Cancer Institute in Boston. At Dana-Farber, Conway worked to improve health care quality, meeting with people who had been victims of medical error and implementing reforms.
This effort was partly in response to the 1994 death of Boston Globe health columnist Betsy Lehman after a young doctor accidentally prescribed four times the intended dose of breast cancer medication.
Medical errors are far too common, Conway said. “If I give a talk, I ask the audience whether they or any of their family members have experienced a medical error in the past two years,” he said. “Between 30 to 50 percent of the hands go up. People are starting to understand that for all the good stuff that goes on in health care, there’s a lot of suffering and waste.”
BAD SYSTEMS
Most mistakes are the result of bad systems, not bad people, Conway said. Too much information is still conveyed on “index cards and Post-It Notes,” rather than through computers. A lot of errors occur at “transfer points” — when a patient is being moved to a new location, such as a nursing home, or discharged. “We haven’t had good, reliable systems to ensure that handoff [is successful].” He said more transparency is needed. “Not that long ago, hospitals didn’t disclose medical errors,” he said. But that culture and fear of litigation is changing.
“What the Dana-Farber board learned is that we have a moral and ethical responsibility to disclose,” Conway said.
One of the people working for change is Kelly O’Connor, a graduate student at the School of Public Health at the University at Albany. A year ago, she founded an IHI chapter on campus. “It’s primarily targeted toward students in the health professions so that they can become agents of change in health care improvement,” O’Connor said.
She became interested in health care improvement while working as a clinical research coordinator at Dana-Farber, where she observed how medical errors get made first-hand. She said that sometimes patients would have blood drawn twice because it wasn’t done properly the first time. “I hated to see that.” Many of the system’s failures were the result of poor communication.
scholarship money
Through Justin’s HOPE, Micalizzi raises money for a scholarship that is awarded to caregivers who served the “underprivileged and underserved pediatric populations globally.” These scholarships cover the cost of attending an annual conference on quality improvement in health care sponsored by IHI.
Micalizzi said she knew something had gone wrong with Justin’s care almost immediately. But she didn’t know what, and explanations were not forthcoming.
“I just wanted people to sit down and talk to us.”
Justin was a healthy child. But one day he came home from school complaining of ankle pain and a slight temperature. The Micalizzis visited a pediatrician, who gave Justin medication. But the boy’s condition didn’t improve. He was nauseous. He vomited. That evening, his parents decided to take him to take him to St. Peter’s Hospital to have his septic ankle drained. They were told the procedure would take about 10 minutes, but the wait was much longer. Finally, the orthopedic surgeon informed them that Justin had hemorrhaged and gone into cardiac arrest on the operating table. The boy was transported to the pediatric intensive care unit at Albany Medical Center, where he died.
Dissatisfied with St. Peter’s response to their questions, the Micalizzis eventually filed a lawsuit, hoping to learn what happened during the discovery process. “We weren’t interested in money,” Micalizzi said. “We didn’t want to retaliate. We just wanted answers.” In 2003, they dropped the case.
A state Department of Health investigation did yield some answers — a resident had performed Justin’s surgery, not, as they’d believed, a surgeon — but not enough. To this day, the Micalizzis still do not understand why Justin died.
“We still don’t know what caused it,” said Gary Micalizzi. “We don’t know.”
