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.