Written & Photograph By Megan Schlorff – c2018
*To protect patient privacy, names were altered in the retelling of this story.
I entered the room behind Dr. McDonald and introduced myself to John and his wife. They were an older couple – likely in their 70s – who seemed pleasant. Dr. McDonald hadn’t briefed me about John’s background and history before we entered, so I listened and watched attentively as the appointment began.
John’s wife, Claire, responded to the questions and guided the direction of the interview while he sat quietly opposite her, providing only the rare nod. Claire inquired about a trial for a new Lewy body dementia treatment, and I was made aware of the reason for John’s visit today.
Claire had brought hope with her to this routine appointment in the form of a piece of paper with details about a medication trial. The knowledge of this trial instilled Claire with the idea of possibly stopping the progression of the disease and perhaps even bringing her husband back home to her.
The medication trial was news to Dr. McDonald, and he searched it online to learn more. Claire waited in eager anticipation, and Don continued to sit contently in his chair wearing his freshly pressed clothes, tied shoes, and ball cap – all signs of Claire’s love for him.
“You know, he’s started calling me Larry,” Claire said as Dr. McDonald scanned the reports about the drug in question. “He’s not remembering my name anymore.” She didn’t seem to expect a reply; she just needed to share.
And with one sentence from Dr. McDonald, Claire’s hope vanished from the room. “It doesn’t look like this new drug is an option for John,” Dr. McDonald said softly, knowing the impact of his words. He allowed for silence as Claire processed the statement and reflected.
“There’s only been a single twelve person clinical trial so far and recruitment is only happening at large hospitals in the States,” said Dr. McDonald, gently providing additional information and answering Claire’s questions.
I looked at Claire and John and the only question on my mind was: Why them? This disease was something they had never asked for, never expected, and almost certainly didn’t deserve. It was a single diagnosis changing the entire course of their story as it continued to progress.
I’m typically the type person who smiles my way through the day and waits until I’m behind closed doors to let the emotions flood out. However, that day, I sat in the exam room feeling tears form behind my eyes as I witnessed this couple’s journey and felt their heartbreak. Today, John was sitting in that chair, but the reality was that it could have just as easily been one of my family members or friends. So many of our lives are woven with stories of medical inflictions experienced by us or our loved ones for which relief is unattainable.
The appointment was near complete. John didn’t have any major changes, and there weren’t currently any new options to try. Dr. McDonald would see him again in three months.
“Oh, does John want to get a flu shot today?”
A vaccine was all we could offer him.
“John, do you want one?”
Sure, we had conveyed empathy during the check-up and the reassurance that nothing new had developed. But, medicine could offer nothing more – just a flu shot with varying effectiveness and potential side effects.
I briefly left the room to retrieve a vaccine from the fridge and returned to administer it. All of ten seconds, and the inoculation was complete. The extent of our “deliverables” had been reached.
All we administered was a flu shot. Would John benefit from it? Perhaps he would be shielded from the wrath of some untimely pathogens and subsequent illness and discomfort. But it would do absolutely nothing to help him – and Claire and their family and friends – better live with Lewy body dementia. It wouldn’t help him remember his wife’s name.
I felt useless. Medicine felt useless. In this field, we rejoice in the discoveries and interventions. What happens when there simply isn’t anything else to do or try?
It’s reflexive to repress the moments that don’t offer us hope.
But, those unhopeful moments, they need to be recognized; they are innumerable in medicine. I don’t think we have to fight back tears every time they happen, like I, the inexperienced and naïve medical student did. I think we can find beauty in the unhopeful moments – the beauty of humanity evolving in all of its imperfect forms. We bear witness to stories of all kinds; regardless of whether there is hope or positive news, these experiences are real and provide us with a glimpse into someone’s life. There are few things more beautiful than that.
This is all easier said than done. We strive for medicine to be equal parts comfort and care but, if required to be described by one adjective alone, could probably be summed up as uncertain. But, so is life and the stories of the patients we encounter.
I’m learning that our practice as physicians extends beyond providing treatment and striving to attain results. We are behooved to enter into the sacred story and personal narrative of each person. Our patients, and their families, are living with a diagnosis, not necessarily suffering from it. What a privilege to bear witness – as they continue living – and observe all that their life encompasses: families, friends, hobbies, jobs, and homes, among others.
In the cases when we can do “nothing” there is indeed something to do. Yes, that something could be a seasonal flu vaccine, which is an important suggestion to help prevent infection. But, after meeting John and Claire, I think that “something” is multi-faceted and involves much more. For each patient we care for, it’s acknowledging limitations, emphasizing listening, making space for connections, and, most importantly, honouring the human experience.