Over the next weeks, Jean Robey, MD will be exploring the complexities of finding self-worth as a physician working within our broken healthcare system in a series of four essays.
I don't think patients come to doctors in this day and age because we have technical information. Procedures and drugs are our gateway to healing, but information is ubiquitous.
I think patients come for counsel and compassion.
And I think the most important attribute they need is experience. As doctors, we tend to undervalue our lifetime of experience. The library we have within us creates a reference point and gauge as we navigate through webs of illness with our patients. We can translate odds and potential. We can assuage fears and give courage. We can validate. We have seen many cycles of human existence. In our experiences we pay attention to grow our skill set and we provide for our patients a kind of insight they cannot find anywhere else.
My badge is a shiny laminant; the hallways are a fresh coat of paint. A bright new hospital logo goes up to welcome me to the formidable. The air makes the hospital seem more like God's sad waiting room as doctors navigate through a system that is systematically eroding the availability for tender times. I'm a new graduate to the world of Nephrology. I feel as if I'm a hippie since I want us all to hold hands. I feel nurses smugly judging my efforts as disingenuous.
I round the corner and meet my match. I may be green with naiveté, but I will turn to a shade of weathered moss meeting Mr. Anderson.
Mr. Phillip Anderson is a 78 year old African American man who lost his wife 12 years ago to breast cancer. He had settled into a life of solitude with the exception of a circle of close friends. At the point when Mr. Anderson developed kidney failure and was placed on dialysis, he moved into a nursing home where he had befriended the staff and fellow residents. Over time his small circle of friends grew even smaller, as one by one long time friends and fellow residents moved or died and staff changed over several times.
When I rounded the corner into his life that day, he had become bedridden and his days consisted of merely going from dialysis to his room three times a week. His illness made it an endeavor to even move from bed to wheelchair and back. In his exhaustion, he had stopped trying to make friends.
"I want to stop dialysis," he told the nurse.
I was fresh out of training and truly never had cared for anyone long enough to be at the end of a long journey of dialysis. I had seen people die or die without dialysis or choose to quit because dialysis wasn't helping keep them alive, but I had not met my match. I was full of a will to live and a sense of purpose to keep myself alive. I met Mr. Anderson and he was ready to let it all go.
Dialysis for him was effective but uneventful. It may have been keeping him alive, but for Mr. Anderson dialysis was no longer affording him time he could use.
I entered ready to begin the hard conversation about a seemingly premature exit. I knew I needed to secure his mental faculties. In medicine wanting to die is not acceptable and letting someone die is forbidden. How do you rationalize medicine stepping aside to let death come?
I introduced myself and in the privilege that doctoring affords me I launched into very intimate words. "Mr. Anderson I was told you wanted to stop dialysis. Is that true?" I opened.
He did not stir. His gaze stayed direct but soft. His hands were folded together resting on his chest. He sat like we were having a talk on a warm day out on the porch together. "Yes," he replied.
I gauged the tone, cadence, speed, and volume of his answer. I weighed whether he was depressed, crazy, or perhaps had become wiser to the game of death. Death comes for us all. Maybe he was coming after death first. Run death. Run.
Mr. Anderson told me all the details of his evaporating life on Earth and I listened. I was beside him when his wife was diagnosed with cancer and underwent treatment. I was there with him as he came home to an empty house when she passed. I was there when he finally went out with friends and dared to laugh. I was sitting next to him staring at his glossed over face, listening to the doctor tell him his kidneys had failed. I saw his blood circulate outside his body to clean him on dialysis. I was there when he packed his things and moved out of a house with lime green linoleum and brown matted carpet where the furniture had laid unmoved for decades. I had been there on move in day at the nursing home when the nice staff had hung a welcome sign and began a systematic decoration of his room. I had gone with him back and forth to dialysis three times a week and come back to the nursing home where holiday banners changed and residents and staff turned out and over. I missed funerals of friends with him because of weakness till there was no one to call to give our condolences. I had finally laid in his bed with him staring at a wall and concluding how it had been a ride finally coming to an end.
"No one I know is alive anymore," he said.
I could feel his world lay distant in the horizon. I wasn't going to push my meager optimism onto him with feeble banalities such as, "Hey! Come on! Make new friends! Be mine!" The thought of such an exchange embarrassed me and felt woefully inadequate. When I offered him my subdued condolences, he appeared to actually feel sorry for me.
"It's ok," he counseled.
After a pause I did my duty. "I'm sorry I have to ask you if you feel depressed," I said. He replied that he was not.
I considered the gravity in his answer and apologized for the fact that a psychiatrist would still be required to ask the same questions and validate his answers, but I touched him so that he knew I believed he was of sound mind.
Mr. Anderson thanked me for coming; I thanked him for sharing the thoughts behind a hard decision.
As I walked out he turned to the window and I wondered if he saw anything that he might miss. In my head I heard his voice again: "No one I know is alive". I imagined the people in his past fading as they no longer existed except in memories. I looked over my shoulder and saw him in a one last time frame.
He left later that day never to have dialysis again. He left on his terms and welcomed moving on.
A short year later I happened upon another such patient situation. I had adopted a patient Cecilia who had been on dialysis some 11 years. She was not a transplant candidate since the scleroderma had ruined also her lungs. At the age of 35, she already had a lifetime of hardship behind her, and for a year we journeyed together through monthly rounds. Her treatments were going smoothly and there was no cause for concern. Then one day I got a call. She wanted to stop dialysis.
Cecilia had no children, like Mr. Anderson, but she did have plenty of family including a mom and sisters. She was calm as we spoke after I called her into my office. "I want to stop dialysis," she shared.
"Did something happen? Has something changed?" I asked.
"No," she said. Her voice matched the tone, cadence, speed, and volume of a familiar voice. Mr. Anderson was in the room with us.
I listened to her recant the years and these last months of reflection. She wasn't depressed or worthless. She just was tired and felt she did her tour on dialysis. She had no major complaints. She just felt it was time to go.
Death was shocked and began to run.
"I just wanted to know how long it would take to pass and I guess I wanted you to say, well, that I'm not crazy," Cecilia said.
I worked her through the logistics then asked her what her family thought.
"My family all sees what I've gone through. They say it's my choice," she said though her eyes waited expectantly for my response. I inhaled. Then I began to paint her a picture.
I told her about Mr. Anderson. I told her he was my first patient to challenge the idea of stopping treatment that was effective for him. I told her most patients don’t choose this path, how many choose to stay and wait. I told her I trusted her intuition. "You're not crazy. You're very brave," I reassured her.
By then I had learned that all I could give was my own experience and knowledge and trust in another's intuition.
Receiving the permission she sought, Cecilia ran one last run of dialysis. The treatment was reminiscent of a farewell drive down Main Street. Everyone at the unit knew it was her last. I met up with her at the dialysis unit to make sure her tour was complete. Then she went to inpatient hospice.
When I went to visit Cecilia the next day, I found her in a warm room surrounded by her family. She sat up in bed looking soft and pretty. I could feel that she was happy.
"I'm sorry," I said. That was all I could find.
How does one say good bye to someone so alive who was soon dying, soon to be gone? Should you exit the room with your back to the person, or walk out backwards so you can savor that last human contact? I eventually left the quiet, comfortable facility and we parted ways.
Three days later I heard she passed into the arms of next.
In my experience, doctors should always pride themselves on their experience.
Mr. Anderson needed me to hear him. Cecilia needed me to hear Mr. Anderson because one day Cecilia needed to meet Mr. Anderson through me. Death was beaten by choice and choice was afforded by experience. I was just a conduit of that experience.
Experience is invaluable. It is the experience of suffering and unpredictable outcomes, buffered by the moments of surprise and constant learning that keeps doctors truly irreplaceable.
As we move towards a less physician-patient centric practice we are losing this crucial asset. I fear that at some point we will succumb to this and society we will not have the true answers it seeks from us physicians.
Jean Robey, MD is a practicing Nephrologist in Arizona. She is a mother, wife, writer, and poet. She writes to pay homage to her beloved patients and to share the experiences of her profession with all.
Aptly named, Enclothed Cognition is the official Medelita blog for medical professionals interested in topics relevant to a discerning and inquisitive audience. Medelita was founded by a licensed clinician who felt strongly about the connection between focus, poise and appearance.