I walked into the Intensive Care Unit of a small hospital, responding to a consult request, and was escorted to a woman lying prostrate at the center of critical care cacophony. She was intubated and ventilated on 100% oxygen and PEEP 10 cm. Mrs. F was in addition sedated, pharmacologically paralyzed, and on vasopressor therapy for low blood pressure. Her X-ray showed white-out of both lungs, and even on such maximal support her oxygenation was barely adequate. All aspects portended a dismal prognosis for anyone regardless of age or disease, but Mrs. F had presented not with just any pre-existing condition. She had come in with a pre-existing death sentence – Amyotrophic Lateral Sclerosis, ALS. She thus lay victimized by nature’s cruelty many times over. Prior to this hospitalization, she was able to talk and eat just not able to ambulate. Now, she had massively aspirated.
Her husband had no illusions about her overall prognosis with ALS nor about how grim her acute status was but confirmed, in no uncertain terms, that his wife wanted “everything done.”
So, I did everything. Somehow, Mrs. F improved. Rising like a phoenix, first surmounting the ironic need for pharmacologic paralysis of someone already succumbing to a paralyzing disease, and then eventually resolving her pneumonia. Eventually, Mrs. F was discharged. Not to a nursing facility but discharged back home, complete with tracheostomy, ventilator, feeding tube, and worsening progression of her ALS. But back home.
I next met with her unexpectedly when she showed up to an outpatient visit for follow-up. No one had requested my services; her visit was simply coincidental with my schedule. There she was, virtually immobile and frozen in the vise of ALS, supported by her own mobile ICU – motorized wheelchair, ventilator, oxygen tanks, suction set-up, spare tubing, ambu bag, and feeding tube dangling. I conducted my evaluation and favored her sister and husband with a complete explanation of where she was at, how the ventilator needed adjustment, all the accoutrements of maintaining a ventilated outpatient. I felt I did Mrs. F proud, taking the time to inform all present with a clinical summary worthy of William Osler or any number of esteemed television physicians (sic). Nearing the end of my evaluation, I saw Mrs. F’s expression change for the first time – her anger was evident even through the mask that ALS had imposed on her stiffened facial features.
I looked questioningly not at her but at her sister and husband. “Is something wrong?” I asked. “Is she in pain?”
Her sister deadpanned, “She,” with unmistakable emphasis on the word, “…is your patient. Not me. She is not deaf, she is not mentally impaired. She’s very intelligent and understands everything you’re saying (I’m paraphrasing). So speak to her. You haven’t you even bothered to look in her direction.”
I looked at Mrs. F, who was glaring at me with an unblinking stare. A stare I would have mistaken as another unfortunate result of her disease were it not for the intensity of her gaze and the reprimand I had just heard. I felt my face flush as all self-confidence, self-assuredness, and pride came crashing down around me. How could I, a self-proclaimed paragon of compassion, have reduced a suffering patient to virtual invisibility? How many others had I dismissed while focusing on how extensive my clinical explanations had sounded? How had I failed to look past all the machinery and tubing when there was a patient was lying there in front of me the whole time?
That one epiphany schooled me for the remainder of my profession. I never again failed to address each patient personally, from those capable of hearing and understanding to the most cognitively impaired of adults and children. I never again took for granted that outward appearance did not necessarily equate to lack of understanding. Even if it did, even if someone’s child was so obviously impaired that comprehension of anything spoken was beyond him or her, the personal attention to that patient offered their accompanying loved one or caregiver a bit of hope or comfort. Refractory seizures, severe developmental delay, and permanent contractures may not be amenable to medications, but lost a little of their disheartening hold when the patient was accorded with dignity and respect.
Mrs. F and I went on to become friends. Eye rolls became unspoken responses to my jokes. I eventually made house calls for her, clinical events that turned into social visits. I viewed her garden, her Christmas decorations, her very full life that had broken through the prison of her disease. Despite the obvious medical-legal ramifications of something going wrong, I gave in to her wishes and performed tracheostomy changes at her home so as to spare her and her family the time- and effort- consuming trial of transporting her to the clinic. Years after her passing, her sister and I remain in contact, both of us holding her out as an everlasting inspiration.
I did the same for another woman also suffering with ALS, even younger than Mrs. F. She also remained silent behind her tracheostomy and ventilator, yet her expression nonetheless spoke volumes as she and I sat with each other during my home visits and clinic visits. Those two silent women taught me more, wordlessly but emphatically, than any longwinded lectures from medical school and residency. I resolved to treat and address each patient I saw as if he or she were the only patient I would see that day. It didn’t make me a model of physician compassion in a sea of white coat detachment – it made me simply willing to acknowledge how tone-deaf and delusional I had been regarding my treatment of “those less fortunate.”
There is a dignity inherent in being spoken to directly. Being included in and regarded during interaction, whether it be over chatty dinner discussions or during a physician’s office visit, is often taken for granted. Such recognition flies under the radar of daily priorities, unless one is never accorded such regard. Dignity, worthiness, is especially important for those who meet with unwarranted and often unintended neglect and condescension promoted by wheelchair dependence, communication difficulty, or cognitive impairment – none of which limit their sensitivity to such treatment.
The effort such consideration takes is a small thing. It requires no instrumentation or procedure, no added time in a rushed office visit, no additional CME credit or training. But at a time when vulnerability grips the already vulnerable even more tightly, acknowledging the message of silence can make the difference between trust and hope versus disheartening resignation. Whether for patient or caregiver, whether a prelude to actual medical intervention or simple intangible support, humanity and dignity offer additional salve for the suffering.
I remain schooled by my patients; I am their pupil, and they are my teachers.
Scott Eveloff MD is a practicing pulmonologist in Missouri
