“The way we deal with loss shapes our capacity to be present to life more than anything else. The way we protect ourselves from loss may be the way in which we distance ourselves from life.”
–Rachel Naomi Remen, MD
DATE OF SERVICE: 10/12/2019
SUBJECTIVE: Patient reports that she hates her BiPAP; patient also reports that she has no friends or family that she stays in touch with or that care about her; her body revolts against her and sends pain signals to her brain whenever she requests movement; she is waiting for the medical system to turn her life around and fix her chronic conditions, and until then she will spend her time watching youtube; she would like all life saving measures in the case of a code. OBJECTIVE: Patient has been wheelchair bound for years—needing assistance even to bathe and go to the bathroom; she has only just started adulthood and needs money from disability insurance to live; she is on ever-increasing amounts of opiates and gabapentin just to make it through each day; her heart is breaking down from years of CHF and her brain is chronically, dangerously inundated with CO2 from her chronic COPD and lack of respiratory ability; she becomes upset at most nurses that step in her door for answering questions that she did ask and failing to give her information that she did not ask for; did I mention she hates her BiPAP machine (?)—like really hates it. ASSESSMENT: Medical school did not prepare me for this. PLAN: Consult a source with more empathy than the UpToDate article on COPD… appreciate recs; continue BiPAP.
When I met this patient, just months into the wards, doctors told me she was a “fighter.” Despite so many setbacks and so much suffering, she and they still valiantly fought to make it through—trying every treatment and sparing no expense. She did not know her prognosis; she did not know what doctors thought about her chances of recovery. These topics were too emotional, and doctors had already heard what they needed to hear: “full code.”
DATE OF SERVICE: 10/19/2019
SUBJECTIVE: Patient reports she still hates her BiPAP; she is doing well this morning… wait, now she adamantly reports she hates being here and is frustrated with all of her medical staff and lack of answers… wait, now she is doing well again; I think the patient is conveying she still wants all interventions in case of a code; “Am I… dying?” she questions, suddenly on the verge of an emotional breakdown; we panic and fall back on our medically-complex uncertainty—hoping only to stabilize the situation; “No?! Then why did you scare me like that?!” OBJECTIVE: Patient grows slightly more somnolent day by day as CO2 continues to rise; it is either BiPAP or intubation at this point and consulting docs have already recommended the latter; patient has not been too keen on the BiPAP thus far; of course the patient is dying, but we did not adequately convey that—clearly no doctor has broached the subject. ASSESSMENT: Are we even providing care? Or are we pouring resources and false hope into this patient, trying to avoid the honest conversation? PLAN: Continue BiPAP.
I would not spend time in palliative medicine for over a year, and I would not hear doctors use the words “worry,” “wish,” and “wonder” until then. I worry that we all did our patient on BiPAP a disservice by labelling her as a “fighter” in a situation that has no winner, loser, or grit—only degrees of awareness, acceptance, and support. I wish her story could have been different—that someone with compassion and patience could have really heard her and cultivated a conversation about goals of care as well as realistic prognosis. I wonder how her treatment plan and her quality of life might have changed if she had known choosing to lessen suffering is not “losing” and that befriending mortality is not the same as giving up on life. No, unfortunately, we did not do any of this whether by ignorance, inconvenience, or fear. Instead, we continued BiPAP.