My resident warns me, “Your new patient has been in the ICU for 18 days. Better read up on her.” Soon I learn that these 18 days have been a continuous sine wave of near death, pain, suffering, and physical debilitation. Takotsubos, sepsis, and near intraabdominal exsanguination, all on top of her baseline crippling rheumatoid arthritis and refractory achalasia, have put her in a severely malnourished state.
As an overwhelmed third-year student, what am I supposed to do? How can I possibly help someone with such a complex diagnosis? I quickly begin doubting my usual confidence in performing a simple H&P and wonder if I can do anything at all for this woman.
I enter a room roaring with noise—oxygen humidifier, air cushioned bed, suction tube, television, secretions, all blending into a constant gurgling, wheezing cacophony. Her joints appear grossly deformed and contracted, her toes necrotic and gangrenous, her lips cracked and caked with dried orange mucus. Her breath is pungent; it's unforgettable.
I ask her a few questions, but her voice is incomprehensible. Her husband, sitting in the corner, quickly becomes my escape. For the next three days, he is my sole source of information. He is everyone's oracle into this woman's desires and life. The ICU team, my pulmonary team, the nurses, even the palliative care team have placed her husband in control of whatever is to happen next. Why not? She is delirious and incapable of thinking clearly or communicating with us. He is the one who has pushed for her to be saved over and over again, convinced that she would want to keep on fighting.
Something is wrong with this situation, though. Is it pure luck or simply a medical student's luxury of excess time that drives my uneasiness with this situation? From the husband's denial of his wife's prognosis to the sister voicing her opinion that the patient would never want these extraordinary measures to continue, something is not right. I am compelled to question the prevailing diagnosis and subsequent treatments.
I ask her husband to leave his permanent post by her bedside, turn down the humidified oxygen, put my ear within inches of her mouth, and ask her my first question.
She speaks! With labored breathing over her tenacious secretions, she gasps, “Help me! Please help me!” Breath by breath, she struggles to give voice to words that have been trapped for far too long.
“Please help my husband. I love him... please help him to let me go.” Finally, with an ear to really listen, she desperately shares all that she has strength for.
What have we been doing this whole time? Among the deafening noises, there is a conscious human being begging for attention. I, we, have abandoned her from day one. She is locked-in. She has been locked in by all of us. Here is a dying woman, suffering in silence, against her will. This is a human in need of people committed to taking time, making time, to listen. She needs people ready and able to restore her life and dignity to its rightful owner. I am not going to abandon her again. Not this time.
How often do we create locked-in patients? Trach collars, ventilators, sedatives, anesthesia, head and neck surgeries.... How often is it not our patient's inability to communicate, but our inability to listen, that causes his or her wishes and desires to go unheard?
According to her wishes, aggressive support is suspended, pain relief is provided, and she dies peacefully a few days later. For the first time in my life, I have saved a life. No drugs, no needles, no scalpel.
Daniel E. Spratt
Michael Richardson, MD