When I was a medical resident, my father was stricken ill with a deadly infection called Ascending Cholangitis. It's a primary infection of the bile duct that drains your gall bladder. Untreated, it is certain death. With treatment, the mortality rate is 50%. A coin toss that determines whether I will lose or keep my father.
I flew back from Boston to California to be at his bedside. I remembered poring over his medical records, looking for anything that the treating physicians may have missed. I was paranoid and desperate to influence that unfathomable statistic. Are you treating his anemia? What is the antibiotic level in his blood? Shouldn't you repeat the liver ultrasound? I appreciated the efforts of his treating physicians who were very much in an intellectual struggle balancing surgical and medical treatment options. Experts were consulted. It was a war campaign against the bacteria that persisted within the bloodstream. And in the middle was my ailing father watching and listening to everything - helpless, quietly afraid and trusting without much choice.
After about a week of antibiotics, his symptoms had stabilized. He underwent surgery to remove his gallbladder and it seemed like the worst was over. I was able to breath again.
Towards the latter end of his ordeal, I remember talking to him - somewhat trying to appreciate the life and death struggle that we had endured and won. I reflected on the intellectual challenges and risks - I remember thinking I would be a better physician because of this experience.
But my father had a different perspective.
Each night, a medical resident - similar to my level of training - visited my father. She had no agenda other than to ask if my father had any questions. He told me that she sat with him just to chat. My father is a man of little words, but he found himself opening up to her. Each night he was in the hospital, she would stop by his room and listen to his thoughts. Initially he would ask questions about his medical care but later the conversation evolved into his feelings of uncertainty and insecurity. His thoughts became stories, reflecting on his circumstance and his life leading up to his hospitalization. He opened up to her in ways that surprised even himself.
At that moment, I remember with vivid alacrity the look that my father gave me. He looked me in the eyes and took my hand. He said "Son, that's the kind of doctor I want you to be."
In reflection, amidst the challenging clinical decision-making and true life-and-death struggle, my father appreciated being listened to the most.
The medical resident that listened to my father was no expert. In my initial glance, I did not think she was contributing meaningfully to the care that ultimately saved my father. She was a trainee much like myself. But I was wrong. She taught me one of the most valued lesson that has shaped how I practice medicine today.
It's the same lesson that I teach my residents: Listen to your patients. Listening builds trust. Listening shows compassion. Listening addresses needs that are unmet. Listening will make your medical delivery more effective. Listening heals.
Every time I say it, I think of that medical resident that truly cared for my father.
*****
Juli Clover
In early 2010, my grandmother was diagnosed with pulmonary fibrosis. Her condition deteriorated at a pace that left us all stunned, and in July of 2010 she began the process for a lung transplant.
By October 2010, she had a collapsed lung, which landed her in the hospital. She was on oxygen 24/7, and after that incident, she was in and out of the hospital for the next month.
While it was a total nightmare in terms of getting her testing done, getting her medications, pursuing the transplant, and dealing with insurance, she had a great pulmonary doctor, or so we thought.
He saw her regularly while she was in the hospital and spearheaded the testing for the transplant. Early testing revealed pulmonary hypertension, a symptom that can disqualify patients from transplants, especially at facilities like UCSD (where she was being treated), which shy away from risky cases.
At no point did this pulmonologist indicate that she might not qualify for a transplant at UCSD, even though I knew from research that it was going to be unlikely. As an optimistic guy, he made it sound like they would approve her, and we trusted him because she liked him so much and he seemed to be relaying accurate information.
It was mid-November of 2010 by this point, and my grandma's health was declining on a day by day basis. We waited for the UCSD approval, with our doctor telling us that she would be moved to the hospital as soon as it went through.
In early January of 2011 we were informed that she had been turned down for a transplant, and she wouldn't be going to UCSD - she would, instead, be transferred to an acute long term care facility, where her own mother-in-law had been sent to die.
When this happened, she was critically ill. She could no longer move from her bed without her oxygen levels dropping to the low 50s, and most importantly, she was now far too sick to be transported elsewhere.
Her doctor, while friendly and optimistic, never told us the truth about the transplant or about how sick she was. He promised her she would be all right. He promised her she would be approved. Had he been upfront, we would have been able to contact transplant centers in the U.S. that do indeed take on high risk patients at a time when she was still able to travel.
All the same, he told her that he would contact UCLA, and I began looking in to air ambulances. I got in contact with other transplant centers, because now, in the first weeks of January, we had so little time left.
Though we told her that we weren't giving up and that we were working on other solutions as quickly as we could, she was so sick and so disappointed that she was rejected by UCSD that she was losing all hope.
Instead of being at UCSD, she was suddenly thrust into a long term care facility and it happened so fast that we couldn't fight it. She hated it there.
On Sunday, January 16 2011, she had been in the new place for a few days. Her doctor, who was affiliated with the facility, promised her that he would come and see her that morning to watch some of the football game that was on. She was looking forward to this.
When mid morning rolled around, and it became clear that her doctor was not going to show up after all, she gave up. Completely.
She decided to die on that day. Up until then she had not been on pain medication because it suppressed her breathing too much, and she was so ill that she had to use two sources of oxygen. She requested morphine and removed her oxygen mask.
She died within two hours.
We never saw her doctor again. We never heard from her doctor again.
So if I had 15 minutes to speak to him, I would tell him not to make promises that he cannot or will not keep.
The same goes for all doctors. Tell it like it is. We need compassion, but we also need the truth and the information to make the right choices. I appreciated his optimism and friendliness, but in the end, it gave us all false hope that led to far more mental and physical suffering for her.
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