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.
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.
Meet Marty and Gwen
Marty is a master carpenter who for years molded wood into the most magnificent heirloom furniture imaginable. He had a thriving architectural woodworking business and was always in demand. Gwen worked as a fund raiser and health policy advocate for a university health system.
In 2001, as Marty was turning 50, he was examined because he had some blood in his stool. During his colonoscopy a polyp was found near the rectum and was removed. In retrospect the polyp base had not been completely removed. He was told the polyp had cancer cells, but he was never scheduled for a follow-up colonoscopy. In the following seven years no one in whose care he was under ever recommended that he be seen every year.
In September 2005 Marty complained to his primary care physician that he had noticed blood in the rectal area. He was examined and told this was due to a hemorrhoid. Again in 2006 he noted blood on the toilet paper, and again he was told it was caused by a hemorrhoid. He trusted his physician, after all it was “not his place to question or quibble”. In mid-2007 he called the physician’s office complaining of globs of blood from the rectum and again was told it was just his hemorrhoid.
In July 2008 he was diagnosed with a malignant neoplasm of the rectum, stage IV cancer, meaning the cancer had spread to his lymph nodes. Marty was devastated. He had trusted his physicians. But he soon learned that he had not received the standard of care he deserved. Rectal bleeding should have been taken more seriously. An entire academic health center had failed him.
He was told by the first surgeon he saw that he had the worst colon cancer she had ever seen, and that he would be required to wear a colostomy bag for the remainder of his life. She demonstrated no empathy for his situation. Discouraged Marty thought about giving up, but Gwen would have not part of surrender. Through her connections they identified an outstanding surgeon, oncologist and radiation therapist. After extensive surgery, high dose chemotherapy that resulted in the loss of sensation in Marty’s hands and feet, as well as extensive radiation that resulted in delayed wound healing requiring 14 months of dressing changes, Marty recovered. He is now cancer free.
Marty could have sat at home angry and depressed over what had happened to him. However, having grown up in the 60’s he remembered the words of Bob Dylan’s song The Times They Are-A Changing: “Shake your windows. And rattle your walls”. And that is exactly what Marty has done. He met the the Chancellor of the Medical Center that had failed him in the hopes of preventing similar events from happening to others. He has spoken to healthcare providers (strike on this link to watch his eloquent presentation) describing in vivid detail both the worst and the best that our health systems have to offer.
Marty wants to be a force for change, and I hope that you will join Marty and me in our quest to reduce errors in our health care systems. The sharing of our stories can and will make a difference.
Lessons learned from Marty’s and Gwen’s experience:
- Problem – Marty was not provided with proper follow up instructions after his 2001 colonoscopy.
Solution – All colonoscopy reports should include recommendations for follow up. In Marty’s case a colonoscopy should have been recommended within 3 years or earlier if he experienced rectal area pain, bleeding or anemia.
- Problem – His primary care physician ignored his complaints about rectal bleeding. She attributed blood on his toilet paper to a hemorrhoid, which she misdiagnosed. She made a common reasoning mistake. Her diagnosis became anchored and she was unwilling to change her diagnosis despite additional input from Marty. She failed to listen to the concerns of her patient.
Solution – All physicians must be aware and guard against anchoring their diagnoses. An expert diagnostician keeps an open mind, takes in new information, and changes his or her leading diagnosis accordingly. All clinicians should also consider the worst case scenario, and exclude the most dangerous diseases that could harm their patients.
- Problem – When Marty presented his complaints to the Chancellor of the Medical Center, the administration and physicians circled the wagons. They never apologized and claimed Marty’s illness was a complication that could not have been prevented. This forced Marty to take legal action increasing the settlement costs to the medical center and causing great emotional stress to Marty and Gwen.
Solution – When an error occurs the caregiver and medical center administration should immediately acknowledge their error and sincerely apologize, describe the ways they will prevent similar errors from hurting patients in the future, and offer a fair monetary settlement for the harm they have caused.
Meet Tanya. Her 17 year old daughter Jess died as consequence of medical errors. She had fainting spells for 4 years and neurologists claimed they were seizures. The family found out about the prolonged QT syndrome, but the doctors refused to listen to them. Finally Jess was seen by a cardiologist who claimed she did not have prolonged QT syndrome. Five of her tests were misread. After Jess died the cardiologist reviewed the Holter monitor, and it revealed she had the syndrome. Genetic analysis revealed her father carried the gene.
Jess died because her doctors refused to LISTEN and failed to properly review her tests. Patients and families can serve as an effective resource by researching possible causes of the patient’s illness, as Tanya and her family did. Physicians and families have the same goal to heal the patient. In the ideal world they should form a true interdependent team. In effective teams all members are respected and their opinions valued. Imagine if the physicians who cared for Jess had been open to the family’s suggestion that she had prolonged QT syndrome, and allied with the family to explore this possibility. Jess would be alive today. I have found so often that effective healthcare is not about aptitude, but about attitude.
Tanya has dedicated the last 6 years to driving changes in the Canadian health system and she will never stop. Every day she thinks about her beautiful daughter Jess. And she will continue her quest until our systems of healthcare delivery are healed. View her website to understand how she is trying to improve patient care www.projectjessica.ca
Watch her video. I agree with every recommendation! And I will never forget Jess. After you watch this video you also will carry her story in your heart.
We all must work together to end stories like Jess’s.