Archives for category: medical errors

Resilieincebook

I was asked by our psychiatry department to give a talk on recovering from the loss of my leg. I tried to decline several times, but they kept insisting that I give a talk. But I didn’t really know how I recovered, I just did it. For some reason resilience seemed to be part of my being. How was I going to explain to the psychiatry department how I recovered?  My brother Steve had just completed a book on Resilience. I had read sections while he was writing his book and made editorial suggestions, but now I read the book with an eye toward applying what I read to my own experience. I discovered that Steve’s book allowed me to structure my talk and explain how I recovered.

How do psychiatrists define resilience or ehe ability to “bounce back” : The process of adapting well in the face of adversity, trauma, tragedy, threats, and significant stress (family problems, health problems, workplace and financial stress). I also learned that their 8 components to bouncing back:

1. Optimism

2. Courage to face your fears

3. Having a strong moral compass: meaning, purpose and growth

4. Religion and spirituality

5. Social support

6. Role models

7. Cognitive and emotional flexibility

8. Physical fitness and strengthening – competitive sports

Over the next series of posts ,with the help of my brother Steve, I will describe how I bounced back with the hopes that you can apply my experiences and strategies to your own life’s challenges.

You can watch my talk by hitting the title of my talk:  Overcoming the loss of my leg: My Path to Recovery

 

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.

https://www.coursera.org/course/fixinghealthcare

March 2013 with the help of my friends I am finally back on the water.

March 2013 with the help of my friends I am finally back on the water.

As I described in my second post “How has my life changed?”, my first trip to the lake was an unhappy experience. I tripped on the grass and strained my back, never reaching the lake’s shore. I returned home discouraged and depressed. So you may have wondered, did I ever return to rowing? The short answer is “Yes!”.

The longer answer is not quite that simple. In early March of 2013 after 6 months of intensive physical therapy and weight training I asked my prosthetist Kyra to design a rowing leg. She created a simple prosthetic knee that could be submerged in the water. The knee was free swinging allowing me to straighten the knee by flexing with my gluteus maximus (large butt muscle). To make sure that I wouldn’t tip over my narrow rowing shell, I  attached pontoons to  the riggers of my boat. The equipment was ready. But could I actually row? I searched for videos on YouTube of AKA rowers, but found only a few who had rowed on ergometers (land-based rowing machines). Was rowing a 2 foot wide rowing shell without one leg even possible?

The big day had arrived. My daughter Ashley drove with me to the lake and she tried to lift the boat and place it on the wagon I had planned to use to wheel the boat to the lake (about 300 yards from the storage shed). The boat, 26 feet in length, was impossible for her to maneuver. She nearly dropped the delicate boat, and my neighbor Buddy rushed over to save her from falling. He lifted the boat onto the wagon and then the three of us wheeled the boat toward the lake. Meanwhile two more neighbors Nancy and Mark came to the rescue.

I realized the shore where I had previously launched my boat was filled with vegetation. Mark lifted the boat and carried it to the sandy beach of our next door neighbor. With crutches I was able to reach the water, wade to the boat and sit on the seat. With Mark’s help I set the oars in the oarlocks, next I swung my rowing leg into the boat, and then strapped the prosthetic foot over the shoe using a Velcro strap. As I tried my first stroke my heart rate jumped, and tears came to my eyes. I was back on the lake! I nervously balanced the boat as I began rowing. The boat glided forward with surprising speed. My friends all cheered as I sped across the lake. I was back on the water!

Rowing with my prosthesis on Lake Santa Fe

Rowing with my prosthesis on Lake Santa Fe

Soo is on the right holding one of her two children. Her Dad is in the center.

Soo is on the right holding one of her two children. Her Dad is in the center.

Meet Soojin Jun. She wants the world to learn from her Dad’s encounter with our health care system:

A morning walk in a fog reminded me how my Dad would have felt when he was ill. Cold, unclear, and alone…I was there but I couldn’t be there. When it came to death, only my Dad was called, not me.

I would have never known that the medical systems in US killed my Dad if I didn’t go to pharmacy school after my Dad lost his life; he died a week before his flight to S. Korea in an attempt to get better and more affordable care. Here’s the story of my Dad’s healthcare nightmare.

My Dad lost his appetite and couldn’t swallow well. He was diagnosed with esophageal cancer stage III. It was due to his 30+ years of smoking and drinking. The surgeon gave my Dad two choices: chemotherapy or surgery. Both options were presented as comparable options. My Dad chose chemotherapy. In hindsight it probably was a wrong choice, although no one could prove that; however, the option of surgery quickly disappeared when my Dad lost so much weight due to the chemotherapy and his inability to swallow food. By the time we decided he needed surgery, the surgeon told us it was too dangerous now and reprimanded my Dad for not trying to eat enough food and for making a wrong choice. During his 2 month hospitalization he had a G-tube placed and was diagnosed with diabetes. When his insurance refused to pay for additional hospital time, my Dad’s primary doctor suggested moving to the psychiatry ward to extend the hospital stay, and suggested this would be no different than being in a general hospital. My Dad was very unhappy during his 2-day stay and requested discharge. He was then placed in a nursing home.

After a month stay in a nursing home, his insurance again refused to pay for a longer stay because he was able to walk . My Dad didn’t want to burden me and he chose to stay at nursing home at a personal cost of $10,000/month. After a month, I brought my Dad to my home, his bank account depleted. A visiting nurse came once per week to our home. She gave me the list of 20 drugs and instructed me what to give and when. A friend suggested getting the second opinion and introduced us to a doctor at MD Andersen. The doctor told us further treatment would cost at least $40,000 and insurance wouldn’t cover out of state medical costs. My Dad chose not to get the second opinion. He wanted to live and turned to natural foods known to fight cancer, supplements, and acupuncture. He became anxious as he lost more weight and he decided to seek treatment in his home country of S. Korea. He booked a flight and we were all hopeful. We knew a second opinion and comprehensive diagnostics, treatments, and hospitalization would all be cheaper there.

While waiting for his flight, he suffered two episodes of hypoglycemia requiring ER visits, followed by severe abdominal pain that also required that we take him to the ER. As I watched my Dad suffering with severe pain, I realized he was going to die. Even in his pain, he didn’t forget to thank the nurse who injected the painkiller. The nurse placed her hand on my Dad’s forehead and told that he wasn’t in place that expected a thank you, but she seemed grateful that he did say thank you. She was the only healthcare professional who actually cared for my Dad, during this prolonged nightmare. We believe he died of a ruptured esophagus or bowel, but it was never suggested that we request an autopsy. I will never know the exact cause of my Dad’s death

A few months after his death, we received two bills: one from the psychiatry ward (the insurance denied coverage) and one from MD Andersen. We appealed these bills. The physician had insisted on the psychiatry ward charge despite my Dad’s reticence. He suffered those two days on a psychiatry ward for what reason? The hospitalization wasn’t even covered. Despite choosing not to travel to MD Andersen, we were charged a $500 registration fee. We spent months of writing letters, and these letters proved as painful to write as receiving the bills. We would have loved to have used their services, if only we had the money.

As a pharmacy student who now understands health care Soo has a number of concerns and suggestions that could have prevented her Dad’s experience.

Problem: The cultural/language barriers complicated the crucial time of decision-making and my Dad chose chemotherapy. We had no idea that the esophagus could lose reflexes following chemotherapy; and I now realize how wrong that surgeon was in telling my Dad to try to eat. In retrospect surgery probably would have been the best alternative.

Solution: My Dad would have benefited so much more if he had clear explanations of his options and consequences of the options.

Problem: With one exception none of those who treated my Dad seemed to care. And did I mention no follow up, no explanation, and no support was provided during the transitions of his care? If only one healthcare professional took enough time to talk to us and gave us clear idea, he could have lived little longer. All this combined with our mere trust in healthcare led to disaster.

Solution: If that nurse by his ER bedside could have appeared in the beginning or even the middle of his care, a healthcare professional that actually cared for patients with empathy, he might have been here today. Lack of continuity and coordination of care is a major issue for many patients. One caregiver needs to take responsibility for the coordination of each patient’s care. This takes teamwork and communication. If my Dad had been cared for by a true team, who knows, he might be with us today.

Final Comments: I will never forget my Dad’s experience. These memories will live on for the rest of my life, and that is why I will continue to fight for patients because we will all be patients someday, and we all have the right to get the right care. Aren’t you scared that you will be cared for like my Dad? It is the time to stand up together and fight against nonsense, ironic, and paradoxical healthcare in the US.

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.