Archives for category: Love
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.

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.

Vera and her daughter, Veronica, celebrating Christmas

Vera and her daughter, Veronica, celebrating Christmas

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.
Guidelines state:
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.
Guidelines state:
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

Marty and Gwen  Survivors

Marty and Gwen Survivors

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:

  1. 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.
  2. 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.
  3. 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.
Kathie and Fred at Kathie's Birthday party 11 months before the loss of Fred's leg.

Kathie and Fred at Kathie’s Birthday party 11 months before the loss of Fred’s leg.

After my friends experienced the initial shock and disbelief about the loss of my leg, as should be expected, they have gone back to their lives and their routines. Out of sight truly does result in out of mind.

Who is left to help pick up the fragments of my life? my wife Kathie.

Kathie is the one who had to place clean sheets on the couch because the cushions were too rough to lie on all day.

Kathie is the one who figured out I could attach my bladder catheter bag to a hanger placed under the couch cushion. She was the one who had to empty the urine four times per day.

It was Kathie who changed the dressing of my amputated leg. She wore sterile gloves and carefully placed the gauze along the incision to trap any drainage. She admits this was very hard, and after she removed her rubber gloves her hands were sweaty as a consequence of the stress associated with cleaning my wounds.

Kathie had to sleep in the guest room because I could only sleep one hour at a time because of the pain. My tossing, turning and intermittent subconscious groans made it impossible for her to sleep. We had our cell phones so that I could call if I had an emergency.

When my ace bandages, carefully wrapped in a figure-8 pattern to prevent residual limb swelling, slipped off in the middle of the night, it was Kathie who helped me re-wrap them.

I will never forget my 3 AM call in panic. I had tried to wheel to the bathroom and the lines of my pain pump got wrapped around the wheel of my walker. I tried to untwist the lines, but they were hopelessly tangled. I lay down on the floor and called. Kathie arrived rubbing her eyes, but with a gentle touch and a concerned expression she worked for 15 minutes before the lines were free. We laughed and cried with relief. We were both exhausted the next day.

For the first three months it was Kathie that had to bring my coffee and my meals, because I simply couldn’t do it myself. She patiently fulfilled my every request.

Did you ever try to carry coffee using a walker? The coffee spills all over the floor. I tried to carry a slice of pie to the couch using the walker, and guess where it ended up? upside-down on the floor.  Finally I figured out a routine. When Kathie isn’t home I eat all meals at our kitchen counter near the microwave and refrigerator. I can move plates and cups from counter to counter using my arms and avoiding using the walker. If I want to drink coffee on the couch, I now place the cup on the kitchen counter as close as possible to the couch coffee table. I wheel around to that side of the counter positioning my walker between the counter and the coffee table, and with a steady smooth movement of my arm and hand transport the cup from the counter to the coffee table. I then wheel to the couch, sit down and reach over to the end of the coffee table for my coffee. Drinking a cup of coffee on the couch used to be so simple, now it is a complex orchestrated operation.

Losing a leg is not a solo sport. I have realized it takes a team, and Kathie is my team. As I kidded with her last night, without her I would be F**ed (we thought people would think this is funny, but it’s true!).  Kathie has never complained. She cares so very much. As the plaque she has placed on our wall says “Most of all let love guide your life.” And Kathie follows the path of love every day.

Thank you my Kathie; without you my life without a leg would be unbearable.