“I’ve never seen you before, you’re early, and you have a short white coat on. You must be a medical student?” inquired the lead doctor as she smiled and introduced herself. I was secretly excited and impressed that my role had been recognized so quickly. “We’ll meet as an interdisciplinary team before Huntington’s clinic officially starts.” At the meeting, there were a multitude of specialties represented including a speech pathologist, dietician, social worker, physical therapist, and occupational therapist. “Wow, it’ll be cool to witness how each specialist works as an integral part of this care team,” I thought to myself.
Huntington’s disease is one of those classic genetic conditions you learn about in medical school – the infamous CAG trinucleotide repeat. The disease presents earlier and earlier in age with subsequent generations. I had never seen a patient with Huntington’s prior and was excited to meet my first patient. I took a deep breath and opened the door to my patient’s room.
“Has anything changed since your last visit?” I asked the patient who was about my age. As I went through my list of questions, it was impossible to ignore the uncontrollable, ataxic movements evident in my patient’s arms and feet. “Touch your finger to your nose. Now touch my finger. Nose. Finger…Good!” I chimed. I went through a few more physical examination exercises, then returned with an attending – one of the lead doctor’s colleagues.
“It is so very good to see you all,” said the attending as he addressed the patient and her guardians in the room. He proceeded to sit down on a stool, ensuring he was directly facing her and that the gap between him and the patient was small. His white moustache curled up, and the number of wrinkles on his face increased as he smiled. “Now, we’re going to play a few games” the doctor stated in a soothing cadence. “First, I want you to close your eyes,” he instructed as he gently held her hands. While he observed her movements intently, I noticed a sense of calm befall the patient for the first time, overcoming her previous restlessness. “Next, I want you to touch your finger to your nose. Now touch my finger. Nose. Finger. Nose…,” the doctor continued as he finished the rest of the patient’s visit. The interaction between physician and patient that I had witnessed was undoubtedly tender and ethereal, clearly contrasting the bland but similar checklist of questions I had just asked the same patient minutes prior.
“I want to be a doctor like that one day,” I thought to myself with both admiration and frustration at the unavoidable growing pains of perfecting the art of medicine.
After I had finished working with that particular attending, the lead doctor pulled me aside and said, “Hey, let me show you something.” She unrolled a long scroll which seemed to stretch 3/4 of the length of the team center – easily over 10 feet. Its edges were frayed and color dulled. On it were numerous pedigrees illustrating generations worth of families impacted by Huntington’s disease in the state of Minnesota. “This is what really gets my blood going. I’ve taken care of the parents of many of the patients you saw in clinic today. We try to provide the best counseling we can regarding family planning. And because this community is so close, I could probably pick out a person in Minnesota who has been affected by Huntington’s disease off the street just by inquiring about their last name and looking at the color of their hair. I’m hoping that by the end of my career, my research will have contributed towards a cure for this terrible disease.”
“Wow, it’s truly incredible how deeply she cares for and knows her patients,” I thought to myself.
When the last patient was seen, another interdisciplinary meeting was held to debrief the cases of the day. “There is one patient I want to discuss,” said the lead doctor. “I talked with one patient, severely affected by Huntington’s disease, who has decided to voluntarily stop eating and drinking (VSED). She was accompanied by her partner and does not appear to be depressed or actively suicidal. In fact, they had recently toured multiple national parks across the country, acknowledging this would be their last vacation together – a final parting gift. The doctor paused with tears in her eyes but quickly regained composure saying, “This was something they had both clearly discussed and had been planning for a long time. As physician-assisted suicide is not legal in Minnesota, I told the couple that VSED is a very reasonable choice in deciding not to prolong death. Does anyone have any ethical concerns or disagreements about my decision?”
No one objected, but one of the nurses added, “It’s the compassionate thing to do.”
“You know, there seems to be a common theme between the few Huntington’s patients I’ve seen who have chosen VSED. They always appear to have an indescribable sense of acceptance and assurance. It’s an aura unlike the sadness or distress evident in those suffering from depression or active suicidal ideation,” responded the doctor.
“They experience peace. This is a way they can take control of their own life,” the physical therapist answered.
I left the clinic that day feeling confused and conflicted. On one hand, I had been so incredibly touched by the trust and connection that could be made by a physician and his/her patient in the face of a chronic, terminal disease. On the other hand, the limits of medicine were so blatantly real. It was magical witnessing interdisciplinary care in action; and yet, I can’t imagine the flip-side where every long visit is a subtle reminder to patients (and their families) that they are really sick. The only conclusion I could muster was not to minimize the importance of various subtleties in the art of medicine: physical touch, cadence of speech, and the respect for patient autonomy. In a scenario where life versus death is not an option, subtleties may truly make all the difference.