I haven’t posted in quite awhile. Why? Because for the last 6 months I have devoted over 125 hours to creating a course that will provide you with the tools to fix our healthcare delivery system. Every system is designed to produce the results it achieves, and unfortunately at this time our healthcare systems are inadvertently designed to harm patients. You will learn how to apply the principles that high performing manufacturing systems to continually improve quality, you will learn how to apply the lessons you learned in team sports to becoming an integral member of your healthcare team. When patients become part of the healthcare team they are far more likely to receive higher quality, safer and more efficient care. You will learn how to recognize impending errors and dangerous conditions so that you can avoid harm. One of the most important lessons I will be teaching is how you can become an adaptive leader, a leader who can bring about change, and goodness knows our health systems need to undergo dramatic changes. And finally I will teach you how to organize others to achieve the goal of continually improving healthcare delivery. The course is free and it is offered through the University of Florida and Coursera. The Institute of Healthcare Improvement with the help of Michael Briddon has generously offered a number of teaching modules that have been incorporated into our course. Upon completing the course you can become part of the solutions. If everyone makes one or two small improvements every week or month our systems of healthcare delivery will steadily improve. WE ALL CAN MAKE A DIFFERENCE.
As compared to Samuel Adams where are we in our campaign? Individuals have created service organizations that have provided support and contributing solutions. These organizations have been created by single individuals and then expanded. They have taken effective steps to support patients and families injured by medical errors. They have documented the types of medical errors, provided counseling, as well as advice on how to avoid being injured. They have created programs that allow patients and patient families to educate caregivers on how to improve the safety and quality of their care. Members of these organizations have attended the meetings of national healthcare safety and quality organizations and discussed their personal experiences in medical centers throughout the country. These efforts continue to bare fruit; however as the many comments of the over 1600 patients on the Probpublica patient harm facebook site reveal, patients continue to be injured, and the majority are angry and distrustful of our health care systems. How can we advance our campaign to reduce medical harm and improve how patients injured in our health systems are treated? A group of very involved patients and families who have suffered the consequences of medical harm now propose a national organization created by and for injured patients and patient families. We are working together as the outreach initiative within the Empowered Patient Coalition. The goals of our organization are in evolution; however, one of our first actions will be to hold a national meeting exclusively about and for those who have been injured in our health care systems. As our campaign progress diagram shows we have a long way to go, but thanks to the work of those who have gone before us we have an excellent foundation.
John and Julia Hallisy’s daughter Kate was first diagnosed with retinoblastoma of both eyes at the age of 5 months. She required 2 years of aggressive chemotherapy and radiation, as well as removal of her right eye. She appeared to be cancer free until age 8 when she developed severe pain in her right upper thigh. She quickly underwent a biopsy that confirmed the worst, she had a second tumor, osteosarcoma, a bone tumor that can on occasion accompany retinoblastoma.
Her surgeon planned to resect the tumor and leave sufficient bone to allow her to have a functioning leg. However, a preventable postoperative infection got in the way. Within 48 hours of her biopsy, Kate became hypotensive due to Staphyloccocus aureus sepsis resulting in respiratory and kidney failure. She underwent an incision and drainage of the infected biopsy site, received prolonged intravenous antibiotics, required ventilator support, and remained in the intensive care unit for 7 weeks. Painful bedsores also complicated her hospitalization.
The delay in treatment of her osteosarcoma resulted in continued growth of the tumor. As a consequence her leg had to be amputated above the knee two weeks after her discharge from the ICU. Kate’s parents were devastated, but John insisted, “We’re not going to mourn for her while she is still alive. We’ll have the rest of our lives for that. Our job is to make the most of every minute we do have.”
Kate’s last 19 months of life were extremely hard. Kate suffered from severe phantom limb pain, a well-known complication of amputation. The damage to her lungs during her septic episode reduced her ventilatory function to 70% of normal leaving her breathless when she tried to walk with her heavy prosthesis. She experienced severe post-traumatic stress from her intensive care experience frequently awaking after a nightmare or after wetting her bed. Through all her suffering Kate maintained a positive spirit and tried to look at the bright side of her predicament. After the loss of her leg she told her parents “You know, I will be able to walk again with a prosthetic leg. Some people lose both legs or a leg and an arm. I have it easier than they do.”
Julia and John will never forget their courageous and beautiful daughter. Following her daughter’s death Julia has been working as a patient advocate keeping Kate’s memory alive. Through her advocacy organization The Empowered Patient Coalition http://www.empoweredpatientcoalition.org she has reached out to other patients harmed by medical errors, and has documented over 500 hundred stories of pain and suffering.
Problem: Kate suffered a preventable Staphylococcus aureus infection following a “routine” biopsy that resulted in septic shock, respiratory and renal failure. The delays required to treat this infection prevented limb sparing surgery and necessitated an above the knee amputation.
Solution: It is likely that the skin overlying Kate’s biopsy site was not properly washed to remove surface Staphylococcus aureus. Prior to any invasive procedure the operative area should be thoroughly cleaned with Chlorhexidine. It is also possible that the biopsy instrument was contaminated with S. aureus and reliable procedures must be in place to assure that all surgical instruments are thoroughly heat sterilized.
We have a supermarket chain in Florida called Publix. George Jenkins founded this remarkable company in 1930 at Winter Park, Florida. The success of his company has always been based on customer service. As he told his employees at the end of each orientation, “If there is ever a customer you can’t handle, give them my phone number, because I will.”
Publix has a guarantee posted in every store that reads:
“Publix guarantees that we will never knowingly disappoint you. If for any reason your purchase does not give you complete satisfaction, the full purchase price will be cheerfully refunded immediately upon request. We have always believed that no sale is complete until the meal is eaten and enjoyed.”
Publix has been rated by Fortune Magazine as one of the top ten best companies to work for (2005–2008) and is one of Forbes Magazine’s top ten largest private companies (2009). Publix consistently scores higher than any other supermarket for customer satisfaction based on the national American Customer Satisfaction Index survey (1995–2010). (See Critically Ill: A 5-point plan to cure health care delivery)
Publix attributes its success to a continual focus on its customers. The key question arises, if Publix supermarkets can guarantee their food after it leaves the store shouldn’t our health care systems be willing to guarantee the care they provide to their patients after they leave the hospital or clinic? Stories like those of Jess, Carla, Marty, Veronica, and Georjean, would never have to be told. Imagine if each time a medical error occurred, the caregiver and health system immediately informed the patient, deeply and sincerely apologized, explained how the health system was taking steps to prevent the same error from harming others, and then fairly compensated the patient. Patients injured by medical errors would no longer feel as though they were being ostracized. They would no longer lose their trust in our medical system. They would no longer be suffering the financial hardship brought on by their injuries. After all, these injuries were not the fault of the patient. Why have the very institutions whose charge is to help those in need turned their backs on the patients who morally and ethically most deserve their help? When our health systems and caregivers make mistakes, shouldn’t they do everything in their power to help those they have injured?
In December of 2008 Georjean had robotic assisted laparascopic surgery to remove her kidney that contained a large tumor. The good news was that the tumor proved be noninvasive papillary transitional carcinoma and had not spread to her lymph nodes or to any other adjacent tissues. She was cured. The bad news was that immediately following the surgery she began experiencing severe abdominal pain. The physicians and nurses minimized her complaints. However, on the second day after her surgery Georjean became hypotensive (her blood pressure dropped). She looked into her husbands eyes and told him she was going to die. He called for help and the surgeons rushed her to operating room where they discovered her bowel had been nicked during her prior surgery and over a billion bacteria had leaked out of her bowel into her peritoneum and into her blood stream. Her severe abdominal pain and septic shock had been caused by what is called secondary peritonitis, a very dangerous and potentially fatal infection. The large collections of pus and bacteria were washed out, and drainage tubes were placed throughout her abdomen,
Her infection was complicated by respiratory failure requiring that she be intubated (a tube placed in her airway), supported by a mechanical respirator, and moved to the intensive care unit where she remained for 20 days. Soon after being moved to a regular floor she was discharged to her home with multiple drains, only to return 6 days later because of additional undrained abdominal abscesses. A total of 8 abscesses required drainage, and one was infected with a fungus in addition to bacteria requiring strong anti-fungal therapy in addition to intravenous antibiotics. After multiple procedures and prolonged antibiotic treatment requiring over 2 months in the hospital, she was again discharged to her home in mid-March. Here she required a special vacuum dressing and continued dressing changes for open wounds that finally healed 6 ½ months after her original surgery. As she became more active she developed large hernias in both inguinal areas (lower abdominal areas) as well as a large midline hernia.
Her surgeon elected to delay repair because of all her recent suffering. Unfortunately because of her illness she had lost her job, and soon lost her health insurance coverage. Now she could not longer afford to visit her surgeon and could not personally pay to have her hernias repaired, and by the time she was able to get Medicare coverage her surgeon was fearful of operating. He warned that surgery on her extensively scarred bowel could cause further bowel damage. Because of her poor bowel function Georjean eats a very limited diet and has to wear a special binder to reduce her hernias. Many physicians have discharged her from their care because “You ask too many questions.” Now she asks no questions and agrees with whatever the doctor says, but she wishes they would help her to fully regain her health.
Problem – Georjean underwent resection of her kidney using a laparascope. Laparascopes minimize the size of the incision and usually allow the patient to recover more quickly. However laparoscopy is technically more challenging and makes visualization during surgery more difficult. As a consequence the surgeon accidentally cut into her bowel causing severe peritonitis and septic shock.
Possible solution – Physicians who have not undergone extensive simulation training in laparoscopic surgery should utilize open abominal exploration to reduce the risk of a complication.
Problem – The nurses and physicians minimized Georjean’s complaints about abdominal pain. They thought she was a troublemaker,
Solution – Doctors and nurses should carefully listen to their patients’ complaints and order the appropriate tests to exclude a serious cause. In Georjean’s case she should have undergone surgical exploration and drainage within the first 24 hours. This would have reduced the severity of her infection, and probably preventing her from developing respiratory failure, as well as reduced the number and severity of her abdominal abscesses.
Problem – Georjean lost her job and her health insurance as a consequence of a surgical error.
Solution – Shouldn’t the health system and physician who made this mistake have assisted Georjean both medically and financially, rather than dropping her from their care? Is this how you would want to be treated? Anyone in her shoes would agree that hospitals and caregivers need a new approach to caring for patients who are injured by a medical or surgical error. Potential solutions will be discussed in my next post.
Vera’s illness began with a soft tissue infection called cellulitis probably brought on by a whirlpool bath treatment. She was hospitalized and treated with Intravenous antibiotics. She was discharged to home and told to stay off her foot, and while at bed rest developed pneumonia. She required readmission to the hospital. While being fed dinner she choked on her food and the food ended up in her lung. She required placement of a breathing tube, respirator support, and transfer to the ICU. Despite several attempts to take her off the respirator her thick secretions repeatedly led to worsening respiratory failure requiring replacement of the breathing tube. Because prolonged respiratory support was anticipated she underwent an elective tracheostomy.
At 90 years old Vera remained alert and very intellectually engaged. While in the ICU she listened to classical music and danced with her arms. After about 2 weeks, she had improved sufficiently to warrant transfer to a less acute facility where weaning her from the respirator could be completed. Soon she was managing up to 40 hours breathing on her own. On her 6th day in her new facility the nurses experienced some difficulty suctioning her thick mucous secretions and decided to take out her tracheostomy tube and replace it with a smaller one. This procedure was conducted without the supervision of an experienced physician. A little after midnight, without a physician’s order, her tracheostomy tube was again changed to an even smaller size.
Worried, her daughter Veronica called every two hours throughout the night, and each time was told her mother was stable. However the following morning while in church her daughter received bad news. Veronica was told her mother suffered an “event”. While being rolled over in bed her small tracheostomy tube came out, and Vera remained without significant oxygen for a prolonged period. As a consequence she suffered irreversible anoxic brain damage resulting in waxing and waning coma, and a loss of the ability to speak. Over the next 6 months Vera continued to require hospitalization. Her downhill course was complicated by a large and painful pressure ulcer (13cm, Stage Four ulcer that developed within 3 weeks of her brain injury), followed by C. difficile diarrhea, sepsis, renal failure and death.
Vera, an intelligent, talented and deeply loved mother was taken from her daughter by mismanagement of a tracheostomy tube. Veronica quit her job to take care of Vera. She lost her mother twice. First, after anoxic brain damage, and second after the many complications led to her death. Veronica remains a second victim suffering from depression and post traumatic stress syndrome. I hope that sharing her mother’s story will help Veronica to heal and to transform her into a survivor.
Lessons learned from Vera and Veronica’s experience:
Tracheostomy tube accidents are all too common. The number of injuries and deaths due to tracheostomy mismanagement is unknown. There were three major problems associated with the management of Vera’s tracheostomy:
Problem – The tracheostomy tube was replaced without the supervision of an experienced physician.
Solution – Guidelines from experts in the field recommend that an Ear, Nose and Throat (ENT) surgeon be present the first time a tracheostomy tube is changed. Tube exchange after a new tracheostomy (incision below the Adams apple that creates an air passage below the vocal cords) can result in the accidental closing off of the tracheostomy site and this complication may require emergent surgical intervention.
The Guidelines state, “An initial tracheostomy tube change should normally be performed by an experienced physician with the assistance of nursing staff, a respiratory therapist, medical assistant, or assistance of another physician.”
Problem – The tracheostomy tube came out and Vera could not be properly ventilated for a prolonged period. The tube was not properly tied down, and it is likely that the diameter of the tracheostomy tube was too small. These two conditions allowed the tube to be easily dislodged.
Solution – Tracheostomy tubes should always be anchored with a tie-down ribbon around the neck to prevent the tube from becoming dislodged. Guidelines specifically state “Tracheostomy tube ties should be used unless the patient recently underwent local or free flap reconstructive surgery or other major neck surgery.” Second, an ENT surgeon should have decided on the diameter of the tracheostomy tube. A number of factors need to be considered when deciding on the diameter and type of tracheostomy tube.
1. “When determining the appropriate diameter tracheostomy tube, lung mechanics, upper airway resistance, and airway clearance should be considered.”
2. “When determining the appropriate diameter tracheostomy tube, indications for the procedure, trachea size, and shape should be considered.”
3. “When determining the appropriate diameter tracheostomy tube, clearance for ventilation and communication/speech needs should be considered”
Problem: The exact events that resulted in Vera’s anoxic brain damage remain to be fully clarified; however based on the outcome it is clear that the emergency response was inadequate, and in all likelihood the caregivers were not properly trained in tracheostomy care.
Solutions: All caregivers and family members should be properly trained in how to manage tracheostomies, including emergency care.
1. “Utilization of a defined tracheostomy care protocol for patient and caregiver education prior to discharge will improve patient outcomes and decrease complications related to their tracheostomy tube.”
2. “Patients and their caregivers should receive a checklist of emergency supplies prior to discharge that should remain with the patient at all times”
3. “Patients and their caregivers should be informed of what to do in an emergency situation prior to discharge.”
Mitchell RB, Hussey HM, Setzen G, et al. Clinical consensus statement: tracheostomy care. Otolaryngol Head Neck Surg. Jan 2013;148(1):6-20
I will never forget the kind expression and deep concern of my vascular surgeon as he explained that I would require an above the knee amputation. He had reviewed every alternative and had considered radical surgical approaches; however the angiography of leg revealed no blood flow below the knee. An above the knee amputation was the only solution.
In preparation for my surgery the anesthesiologist and pain specialist explained the advantages of placing local catheters along my sciatic and femoral nerves and infusing a numbing agent. He was excited and enthusiastic about reducing my postoperative pain, and I agreed to have a local block. Immediately following surgery I was able to control my pain by changing the infusion rate of the local anesthetic. Because I was able to control my pain locally, I required no systemic narcotics which are notoriously addictive, and often cause nausea, sleepiness, and severe constipation not to mention respiratory arrest at high doses. The pain team came by each day to make sure my pump was working properly. I was and am impressed by their dedication to preventing pain, and their very caring approach. To me they rank up there with the saints. Thanks to their home infusion program I was able to be discharged 24 hours after my amputation.
Because my pain was so well controlled within 12 hours of my amputation, two physical therapist were able to teach me how to walk using a walker. I was able to ambulate over 200 feet on my first try. They also quickly trained me how to transfer from bed to chair, and balance on one leg. Their encouragement and positive attitude showered me with hope that I would be able lead a normal life without my leg.
During my three hospital stays my nurses fulfilled my every request and continually expressed their concern for my well being. I will never forget one of my nurse’s description of her fight to defend one of her patients from abuse at a chronic nursing care facility. She lost her job trying to do her best for her patient. I knew I was in great hands. My nurses were like air; they were always around, always hovering. I deeply admire their dedication to the well-being of all patients.
Upon leaving the hospital I was transferred to the care of an outpatient physical therapy team. They massaged my swollen residual limb, taught me strength exercises to build by gluteus muscles and to stretch my contracted ileopsoas muscle. As my strength improved I was finally able to wear a prosthetic limb. They coached me on how to walk. I felt like an infant, as I awkwardly took my first few steps. With each session my gait has improved. I am learning how to keep my hips parallel and drive off my toe by contracting my gluteus muscles. The closest analogy to walking with a prosthesis is cross-country skiing. My goal is to become an expert at my new sport (walking), and I have the best coaches an athlete could ever hope for. Their enthusiasm and positive attitudes are infectious, and their dedication to improving my life inspiring.
I have learned from other amputees that the most critical person in their lives is their prosthetist. If the prosthetic limb does not fit properly walking is a painful ordeal and life becomes very limited. The ideal prosthetist is patient and understanding, and continually adjusts the limb socket to assure the amputee is comfortable, and that is exactly what my prosthetists have done. Whenever I call with a problem, they respond immediately. They placed padding at sore spots, raised the height of my prosthesis, adjusted the resistance setting of my electronic knee, and continually offered sympathy and encouragement. What an important role they have played in my life and in the lives of others who have lost a limb. My lost limb now plays a very central role in my life. If I am unable to walk or have pain in my residual limb my whole day is ruined. A black cloud hovers over me, but through their careful adjustments, my prosthetists are able to quickly lift that cloud and create a sunny day.
After four surgeries and my prolonged illness I lost over 14 pounds. I was mere shell of my former self. I decided I needed strength training. However, when I tried to lift weights in the gym, I was unable to pick up the dumbbells and position myself on a bench using my walker. I needed a trainer. And fortunately I found the ideal trainer. Young, powerful and very athletic, this former University of Florida football player took on the challenge of bringing me back. The first few sessions I was fragile and demonstrated minimal endurance. During our third session I fainted. My limb pain combined with my tendency to hold my breath while lifting caused me to black out. Patiently he lay me down and gave me fluids. I quickly recovered. Twice a week at 6 AM I work with my trainer who has created a rigorous one hour program designed to improve my flexibility and strength: shoulder stretches, prone back extensions, forward planks, reverse planks, rope pulls, dumbbells, weight machines, push ups, pull ups, and dips. Each week I grow stronger, and I have regained my weight thanks to the patient and concerted efforts of my trainer.
When friends and colleagues greet me today they frequent say “Fred, you look so healthy. I can’t believe how well you look.” And I realize my recovery was only possible because of the dedicated efforts of my incredible healthcare team at UF&Shands, Hanger Clinic, and Gainesville Health and Fitness. I will always be grateful. When I add up all my teammates I count over 50 caregivers*. It takes a team to pick up the pieces. Putting me back together after my preventable injury has represented a herculean effort.
4 vascular surgeons
6 resident physicians
4 in hospital physical therapists
6 outpatient physical therapists
4 blood drawers
3 house maintenance people
1 fitness trainer
56 Total team members
**It is critical that each patient become an active member of his/her team