During my years as an internal medicine resident in New York City, there was an oncology attending who had a reputation of doing every test and trying every treatment for his patients living with cancer — even when they had no chance for survival or a meaningful recovery.
This physician eventually assumed the care of his wife when she was diagnosed with breast cancer. Stories of him becoming so involved with her treatment that he was doing chest compressions on her while she coded in the ICU became mythological resident folklore, and presented a cautionary tale about the dangers of medical providers “micromanaging” the healthcare of family or loved ones. It seemed illogical to our youthful cohort of healers that someone could not neatly separate being a clinician from being a concerned family member when the time came.
I’ve thought of this oncologist often since I returned to upstate New York a couple of months ago. My father, an 87 year old retired general and vascular surgeon, was struggling with blockages to the blood flow in his left leg that caused excruciating pain to the point where he had to sleep sitting up. He underwent a vascular bypass to restore the blood flow to his leg on October 11th, and since then it’s been a weekly parade of inpatient hospital stays, rehab facilities, physical and occupational therapy, wound care, medications, and countless outpatient clinic visits.
It’s been a lot for him. I don’t know how he does it.
It’s also a reminder of how amazing my mother is as his wife of over 52 years and current primary caretaker. What that woman does on a daily basis continues to astound me.
After my father’s surgery, a new ulcer developed on the heel of the same leg he just had surgically repaired. This unwelcome visitor has progressed in size and depth despite meticulous wound care and antibiotics. Amputation, while initially discussed as a last resort, is surely not an option at this point. Yet the pain this ulcer causes compounds the persistent discomfort of two frozen shoulders, diffuse osteoarthritis, and ambulatory restrictions due to a previous stroke, pulmonary embolism, and coronary bypass. My father’s functionality and quality of life are a faint shadow of what he enjoyed as chief of surgery years ago.
Dad mentions his pain often, but he doesn’t trust other doctors over his own personal and professional experience. That distrust has been both a saving grace and a pitfall as he has struggled to cope with the medical complexities that come with aging and the stark reality of a physician becoming the patient.
He follows up with a palliative care specialist, an empathetic and brilliant family medicine physician who he trained when they were both younger. This gentleman came by the house once to discuss my father’s goals and wishes, and even completed the paperwork that allowed me to request the time off from work.
This morning we discussed the upcoming occupational therapy home visit and bringing him to the wound center later to ensure the ulcer hasn’t mutated into a bone infection. With every ache and pain my father mentioned, I was quick to propose a solution, like any good internal medicine doctor would — medications, physical therapy, tens units, injections, you name it. Yet as if he were at a skeet shooting competition, my father would blast out of the air every suggestion I threw at him.
It wasn’t long before I found myself getting frustrated.
“Dad, you need to speak to the palliative care doctor. I can’t be your physician with all this, especially if you aren’t going to listen to what I recommend,” I pleaded to him.
“OK then, I just won’t bring it up anymore,” he mumbled with all the Haitian guilt he could muster.
I looked at my mother, exasperated. She shrugged her shoulders as if to say “welcome to my world son.” We ate breakfast in silence as my father gazed out the window. I broke the stillness.
“Dad. I’m sorry. I’m just too close to you. It’s hard for me to treat you like I would a patient and I don’t wanna do that.”
I still didn’t get it.
My father looked at me as he typically does before launching into what I used to see as lectures, but now appreciate as lessons.
“You know son, this is not fun for me. To wake up every day with a different pain in a different part of my body. It’s not fun.” he sighed.
“I’m not afraid of death, but it does make me melancholy. When I go to bed at night, I don’t know if I will wake up and be reincarnated into one of the squirrels that runs around the yard, or if I will come back as an eagle soaring in the sky. Maybe I will be reunited with my mother and grandmother in the mountains of Haiti. I don’t know.
What I do know is I want to be around for your mother. I want to see your niece and nephew get married and what they do with their lives. I would like to see if you continue on the career path you love, and witness all the amazing accomplishments your sister will make in hers.
I want to enjoy the simple things, like going on the computer and watching that Netflix show on Versailles. It helps me forget about everything. It serves as a distraction from the pain. Then I go to bed, but when I wake up, I feel every articulation, every part of my body aching, and it starts all over again.”
His eyes became misty but he never shed a tear.
I did. Many.
My father knows he should say all of this to the palliative care doctor when he sees him in a couple of days. Right now, though, he needs more from me, something different from the oncologist who didn’t seem to know how to stop being a physician when it came to his loved ones. I now understand why that doctor had trouble coping with the reality of a family member’s illness. When you have the medical training at your disposal, you want to do everything in your power to save them. But there’s a fine line between being involved and being engaged. My father needs me to be the latter.
He doesn’t need another doctor. He doesn’t need me to “fix” things or simply offer my advice on various prescriptions, tests, and treatments.
He just needs his son.
He needs his son to empathize with him when he has to vent about the physical and emotional toll this whole process is having on his day-to-day life.
So I will shut up, listen, and try to hear and support him the best I can as he navigates the most difficult part of his life’s journey.
That’s what really matters, and the real reason why I came up here in the first place.