Robert Neel IV, MD, found his humanity caring for patients with amyotrophic lateral sclerosis (ALS). It’s a journey laden with hard conversations and difficult treatment options along with moving memories of patients who are robbed of their motor functions and abilities, but not necessarily their spirit.
Neel, director of the ALS Clinic at UC Health and associate professor in the UC College of Medicine, gave students a peek into the impact of the disease on his career during a keynote address at the 22nd annual White Coat Ceremony for first-year medical students held at the Aronoff Center in downtown Cincinnati. The college presented white coats, a gift from the UC Foundation, to 173 newly admitted medical students to mark their entry into the medical profession. The garment is a symbol of the compassion, honesty and care physicians and those in training must aspire to when serving patients.
Students, along with their family and friends, were also welcomed by William Ball, MD, Christian R. Holmes Professor and Dean of the UC College of Medicine and senior vice president for health affairs while words of congratulation were offered by UC President Neville Pinto, PhD. Remarks were also offered by U.S. Rep. Brad Wenstrup, DPM (R-OH).
"ALS is a progressive neurodegenerative disease,” explained Neel. "It involves dying of the upper motor neurons and the lower motor neurons. It causes slow progressive painless weakness, eventually bulbar dysfunction and finally death. The disease is universally fatal. There is no cure. We don’t even really understand what causes the disease. I do this all day every day and I am asked by my peers multiple times: ‘How do you do this? Don’t you get depressed? Doesn’t this take a toll on you? How do you do it day in and day out?’
"I really reflected on this, and I thought about a concept that helped me in my day-to-day practice,” said Neel. "So, what I want to share with you is a concept called care endurance.”
Care endurance isn’t something discussed in medicine, but more likely in the military.
"The way I like to think of it is care endurance and the practice of medicine are like running,” said Neel. "We have the capacity to run, some of us better than others. But in order to make that endurance better, we need to exercise it.
"You don’t go running two miles, three times a week, to running a 26-mile marathon without slowly and gradually building up to it without practicing. It is the same in healthcare. We have to slowly and continually increase our exposure to the disease and the people we care for. See your patients as much as possible and talk to them, and see them in more than one setting, and even do home visits at some point during your training and for the remainder of your career. Be willing to go into tough situations even when you are afraid. Have tough discussions. Be uncomfortable and be willing to cry. It’s definitely okay to cry.”
"A caveat I have for all of you is that many people confuse care endurance or emotional endurance for coldness and detachment,” Neel continued. "They are definitely not the same thing. You still must feel and you still must cry. You don’t run a marathon and expect to be sore afterwards. It’s not just physiologic, but I will tell you that over time, you learn how to cope with it.”
Neel also asked medical students to acknowledge their need for a "selfishness quota.” It’s the realization that everyone has a need for attention, rest and pleasure.
"Part of this selfness quota is taking advantage of your own time,” says Neel. "What gives you joy and recharges you in your life? Do not regret spending time with family. Do not regret spending time with friends. Don’t regret exercising. Don’t regret being in the garden. Don’t regret great meals. Don’t regret vacations. Don’t regret a great bourbon, and don’t regret reading a non-medical book. These are all life’s pleasures, and these are the rest periods between the long distance runs you will face as you go through this life.”
Humor is another important coping mechanism, he said.
"Without laughter, I would not survive during the day,” said Neel. "As I age, I still remain that little boy that giggles about bodily function. I can’t say words like ‘flatus’ or ‘vagina’ without easily biting the inside of my lip. But I will tell you that having that sense of humor will help you through many different things.
"Laugh at little things, and laugh a lot. Laugh at yourself as much as possible, and definitely enjoy the laughter of patients. Don’t expect to always find laughter, but trust me, you will find it there. Accept the part of their life that brings them humor and bring humor to the rest of the world.”
Talking to peers in healthcare and supporting each other is important along with remembering some key ethical principles of medicine, said Neel. He urged students to value autonomy and to remember this is your patient’s life and not yours, remain benevolent and always do good for your patients, use non-maleficence and try not to harm anyone and when you feel justice kick in don’t be afraid to fight constructively for change.
Neel also asked students to accept and mourn relationships that are lost. He shared the story of a former patient and close friend named Leann. She was an intensive care nurse who developed ALS but bonded with the doctor over baseball.
"As she went through this horrible disease, I watched it rob her of her function, but I will tell you it never robbed this women of her spirt,” says Neel. "She had a lust for life. I allowed myself to get to know her more, and we became friends. I think that both being in healthcare made it easier for me to form that connection.”
Her favorite topic was baseball—something that Neel knew nothing about.
"She could quote statistics that would make my father proud,” said Neel, teasing that Leann was the son his father never had. "She went to spring training with the Reds every year. One of my favorite memories of her was she would find ways to sneak into the locker room to see half-dressed spring players between games.”
"Again, a wonderful woman,” said Neel as the audience laughed. "She was my friend. She had my cell phone number, as many of my patients do, and she would text me pictures at night when she would go out with family or friends. I would text her sometimes and when I did something baseball- related. I still cry when I think about her. I remember that spirit and life and how many people she touched.”
Neel said physicians are cautioned against getting too close to patients, but he warned that the walls physicians build up to protect themselves mean they can miss out.
"I do not have a magical formula for how to make this work or how to navigate this treacherous path,” said Neel. "Each of us must find a way, but find it. Your life will be richer for it. It made me stronger to know her and to suffer her loss. It makes me take care of my patients like my brothers and sisters.”