Campaign Time Line Horizontal axis = time Vertical axis = campaign

Campaign Time Line
Horizontal axis = time
Vertical axis = campaign

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.

Time line for Samule Adams' campaign for American independence. Horizontal axis = time, vertical axis the degree of campaign activity

Time line for Samuel  Adams’ campaign for American independence. Horizontal axis = time, Vertical axis the degree of campaign activity

The founding father most responsible for encouraging the colonist to seek independence from Great Britain is Samuel Adams. While he was in college at Harvard his father, a brewer and successful businessman, was driven to bankruptcy by a capricious ruling by the British Parliament. From that day on Samuel Adams dedicated his every hour to convincing his fellow colonists that our country needed to seek independence from the intrusive governance of the British.

As he began his efforts the Massachusetts Bay colonists were complacent. They were prospering and did no have to expend money for military protection. Their trade with the British was lucrative. All was well, why change? It took 17 years for Samuel to convince his fellow countrymen to act. How did he convert them from complacency to urgency?  He used 5 approaches:

  1. One-on-one meetings – He met individually with his countrymen to discuss British rule and to share his vision for an independent America. Using personal narrative and sharing the misfortune of his father he recruited those with a shared vision to join his campaign for American independence.
  2. Assembled a leadership group – Through his one-on-one meetings and through his membership in the Caucus club he identified young and influential members of the community to form a leadership team to create strategies and tactics for the campaign for independence. He also helped to create the “Sons of Liberty”.  Among his recruits were his younger cousin John Adams, and a highly successful merchant John Hancock.
  3. Editorials in the Boston Gazette and Public Advertiser.  These anonymous editorials warned of the danger of taxation without representation. When British soldiers shot 5 colonist for throwing snowballs, he labeled the event the “Boston Massacre” and had Paul Revere create an engraving and distributed the posters depicting the massacre throughout the Massachusetts Bay Colony
  4. Organized large gatherings beneath the Liberty Tree, Faneuil Hall and the Boston Harbor.  It was here that his fiery oratory aroused his audience and created an urgency to act.
  5. Created effective strategies and tactics that countered the British Government’s every move to manipulate the colonists. When the Stamp Act taxed colonists’ commercial activities Adams convinced his fellow countrymen to institute the “nonimportation” of British goods (100 years later this tactic received the name “boycott”). The refusal of American merchants to buy British products led British merchants to complain to their Parliament and encouraged the Parliament to rescind the tax.

The ultimate event and culmination of Samuel Adams campaign for independence came I773 when he organized the gathering of over 7,000 people (over half of the population of the Massachusetts Bay Colony) at the Boston Harbor to protest the unloading of tea by the British ship the Dartmouth. He had previously orchestrated a unanimous ruling by the colonial North End Caucus forbidding the unloading of British tea in Boston Harbor. This act was in response to a ruling by the British Parliament allowing the East India Tea Company to import their tea directly to the colonist, bypassing the American Merchants. The captain of the Dartmouth came to this large gathering and requested that he be allowed to unload his tea because the British Parliament had mandated that all cargo must be unloaded in American ports within 20 days and the 20th day had arrived. Samuel Adams instructed the Captain to go to the governor and request an exception to leave the port without unloading his tea. The captain beseeched the governor to make an exception, but he refused.

The captain returned to the huge gathering and informed Samuel Adams of the governor’s order. What should Samuel Adams do? Should he insight a riot, be labeled a traitor, and be immediately jailed? He implored the crowd “This meeting can do nothing more to save our country” and disbanded the crowd. As though on cue, 40 men dressed in Indian outfits yelled out “Boston Harbor a tea-pot tonight”, marched to the British ships unopposed, and with hatchets split open 342 chests of tea and dumped them into the harbor.

This act infuriated the British who blockaded the harbor, and sent 4 infantry regimens to Boston. These events precipitated the Battle of Lexington and Concord, the first Continental Congress, the Declaration of Independence, and the Revolutionary War.

Nothing is more American than organizing fellow countrymen to act. And those of us who have been injured by medical errors should follow the example of Samuel Adams to create a sense of urgency among our caregivers and our health systems. We should follow the example of this great founding father so that others will not suffer our fate, and to assure that those who have been injured by medical errors receive the care and compensation they so justly deserve.

For more about Samuel Adams read Chapter 6, “Culture is Nothing More than Group Habit” in Critically Ill, A 5-point plan to cure healthcare delivery.

John kissing his beloved daughter Kate

John kissing his beloved daughter Kate

Kate with Julia and John at her side. She is holding her first place trophy after winning her school's speech contest.

Kate with Julia and John at her side. She is holding her first place trophy after winning her school’s speech contest.

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.

A true change causes significant disequilibrium and those resistant to change try to reduce disequilibrium by either attacking the leader of change or delaying the change.

A true change causes significant disequilibrium and those resistant to change try to reduce disequilibrium by either attacking the leader of change or delaying the change.

This week I learned about the story of a family medicine resident who discovered a nearly fatal medical error and questioned the senior physicians about how to prevent future patients from suffering similar harm. As a consequence of his questioning of his superiors he was labeled as a trouble maker who did not respect authority. He has been suspended from his residency for the past 5 months, and as a consequence of reaching out to the press he has escalating a private disagreement into a public firestorm.

What went wrong? This resident is a member of the millennium generation, a generation that was raised differently than past generations. Parents of the millennium generation have treated their children more as colleagues and explained to them the reasoning behind each rule and family decision. These children have been closely supervised and encouraged to participate in formal activities such as sports teams, music lessons, dance lessons, acting lessons, and many other supervised activities. Their close supervision has encouraged an acceptance of authority and of institutions. As a consequence of the recommendations by the famous pediatrician Dr. Benjamin Spock, this generation has been nurtured, and rewarded for their every achievement. Everyone on the children’s soccer and baseball team received a trophy. Most people in this generation have been raised to think that they are special.

What does this mean for health care? These young people are not about simply following orders and deferring to those in authority. Rather, they want their work and the systems they work in to have meaning and purpose. They want to know the reasons behind every decision. The millennium generation asks “Why?”.

In my view this generation has the potential to transform health care. They promise to be the leaders of change. Because they have no stake in the status quo, they are far more likely to challenge it. They have altruistic goals and want to improve our society. Whenever someone tries to bring about a change in the way things are done, he or she is an adaptive leader. Health care badly needs adaptive leaders because the status quo (over 100,000 deaths and over 1 million life-altering injuries per year in the United States caused by preventable medical errors) is not and never should have been acceptable.

The dangers associated with adaptive leadership are well known. This quote by Noccolo Machiavelli, 1515 insightful describes the age old impediments to change:

There is nothing more difficult to carry out, nor more doubtful of success, nor more dangerous to handle, than to initiate a new order of things. For the reformer has enemies all who profit by the old order, and only lukewarm defenders in all those who would profit from the new order. This lukewarmness arises partly from fear of their adversaries who have the law in their favor; and partly from the incredulity of mankind, who do not truly believe in anything new until they have had actual experience of it.

Whenever a meaningful change in the way things are done is attempted disequilibrium occurs. Those in favor of the status quo feel a sense of loss. As shown in the figure above, they try to reduce the discomfort of change by attacking the leader who is trying to bring about the change, or by delaying the change. The key to effective adaptive leadership is to maintain the degree of disequilibrium in the productive zone. If there is no discomfort meaningful change is not being achieved. However, too much disequilibrium can lead to outright rebellion. If leadership can moderate the degree of disequilibrium eventually the change will become the new “way it is” and will be regarded as the status quo (far right of the figure).  Those in charge should avoid punishing those who are leading change because punishment will serve to maintain the status quo. Adaptive leaders need to be protected and rewarded. Our patients are counting on them!

To read more about adaptive leadership please go to:
Critically Ill: A 5-point plan to cure healthcare delivery (Chapter 5) by Frederick Southwick also available in Kindle

Leadership on the Line Staying Alive Through the Dangers of Leading by Ronald Heifetz and Marty Linsky

Image of a knee infected with Staphylococcal Aureus Accompanied by a microscopic image of the Staphylococcus organisms

Image of a knee infected with Staphylococcal Aureus Accompanied by a microscopic image of the Staphylococcus organisms

Judy’s terrible experience began with a routine meniscus repair in January, 2007, performed by a respected orthopedic surgeon at a world renowned hospital. She scheduled the surgery early in the year so that she would have time to recover for Spring outdoor activities.  As she pointed out “It could have waited–this was certainly not an emergency.” Unbeknownst to her the hospital where the procedure would be performed was experiencing a sudden increase in the number of infections following arthroscopic surgery. She later learned there was a problem with the equipment sterilizer. And much to her dismay she also subsequently learned that the surgeons and other hospital personnel were aware of the problem, but chose to continue to perform anthroscopies despite an increased risk for infection.  As Judy noted “In signing the forms authorizing the surgery, I basically consented to a risk without knowing the full extent of that risk.”

Two weeks later she was readmitted with joint infection caused by Staphylococcus aureus, an often aggressive organism that can quickly cause serious tissue damage. as well as sepsis. During the surgery to clean out her knee she suffered an aspiration pneumonia requiring intubation (tube in her trachea) and mechanical respiratory support. She awoke to find her hands and arms tied down with a tube in her throat. This experience haunts her to this day. The pulmonary specialist who cared for her apologized for “everything we did to you.” She was discharged from the hospital with an intravenous line for the delivery of vancomycin that she received for 6 weeks. The good news is the vancomycin eliminated the infection; however, the bad news is she suffered a known complication of vancomycin – tinnitus or ringing of ears. She continues to experience this “high-pitched machine like noise from which there is no escape.”

As Judy notes “I walked into that hospital a perfectly healthy person with a minor problem; and have suffered the consequences of really bad medical decisions, errors, and practices for the rest of my life. That all of these mistakes were preventable haunts me.”

Problem: The hospital failed to discontinue surgery in the face of an outbreak of Staph infections.

Solution: We in health care can learn from Toyota. At their manufacturing plants all frontline assembly workers have a rope called the andon cord that they can pull if they detect a defect in the car they are working on. The assembly line stops until the cause of the defect is clarified and corrected.  Health care providers need to apply the same approach. When an error is detected, in this case a defect in the sterilization of surgical instruments, elective surgery should be discontinued until the cause of the defect is clarified and corrected. If this had happened in Judy’s case she would not have suffered a post-operative infection, pneumonia and permanent ringing in her ears.

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?

Georjeanfinal
A recent picture of Georjean

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.