Archives for category: medical harm

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

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.