Am Fam Physician. 2004 Sep 15;70(6):1058-1059.
When beginning a week on inpatient service, I always wonder what catastrophe might befall us—and today my fears are realized. Our first patient is a 21-year-old woman with type 1 diabetes who was transferred out of the intensive care unit yesterday after yet another bout of diabetic ketoacidosis. She has since become more breathless and now, on 100 percent oxygen, has a PO2 of 84 mm Hg with a normal chest x-ray. When I lay eyes on this young woman, she is breathing at a rate of 36 per minute. Alarmed, we rack our brains for a cause. Might it be a pulmonary embolism? Pneumocystis pneumonia? Sepsis? No explanation quite fits. Trying to complete a work-up, we trip over various obstacles. After an hour, all we have is a computed tomographic scan without contrast that our radiologist interprets as “consistent with Pneumocystis.” Then, while awaiting a desperately needed nuclear perfusion study, the patient begins writhing and clawing for air. She is intubated—and almost immediately goes into cardiac arrest. A cardiologist leads our resuscitation efforts, which fail. She has died, at age 21, under our care. What a terrible, terrible day. I review every choice I made during this nightmarish morning, wondering whether I could have done better, and then make a call to the grieving family. Would they agree to an autopsy?
It’s often said that troubles come in threes. Today, three of my patients are in the hospital, a state of affairs that I find disconcerting—and trying. It all began two weeks ago, when Mrs. Davis was intubated and admitted to the intensive care unit after suffering a myocardial infarction at dialysis. Next, Carmela Morro’s family brought her to the emergency room because this sweetly demented woman had stopped eating and become lethargic—“a definite case of the dwindles,” said a colleague—and was admitted in renal failure for intravenous rehydration. Then yesterday, Maria Ruiz, one of my favorite patients, who’s been carrying on for eight years despite an ejection fraction of 15 percent, was admitted with a bacterial pneumonia, despite having received a pneumococcal vaccine. Overnight she went into heart failure, and today she’s tugging for life, breathing at 40 respirations a minute. This usually cheerful, sweet little bird of a woman looks awful—and I feel awful. She gets a dose of furosemide as residents transfer her to the intensive care unit, where she will displace Mrs. Davis, who is unresponsive but medically stable. Is it something about the planetary alignments—it can’t be my care, can it?—that simultaneously made my patients so sick?
When I reach for the tissue box, it usually means a successful visit. Tears suggest that we’ve found where it really hurts. Today, a medical student presents a new patient: “Her name is Krista Deutsch. She’s 54 years old and very anxious.” The student goes on to tell me how Ms. Deutsch’s postprandial epigastric pain won’t go away, despite the best efforts of a capable gastroenterologist. When I meet the patient, she reminds me of television sitcom characters who draw laughs by masking their personal distress behind forced smiles and manic cheer. When she comes to a pause in her story, I offer a few moments of silence, then relay the student’s observation: “You seem a little anxious.” She bursts into tears. “I had a car accident and lost my job,” she gulps. “Then my father died. My husband left me …” She momentarily wrestles herself under control, then gives in to convulsive sobbing. I offer the box of tissues. Later, the student shares her amazement. “Her mood changed so quickly when you spoke with her!” I like such surprises, just as I like the gentle probing for buried pain. This woman thought she was coming to see the doctor about a sore belly, never realizing that just above her aching stomach lay a broken heart.
Carmela Morro went home today, a bittersweet moment. Carmela is 85 and has severe dementia. When her husband died five years ago, she seemed to notice his absence but could not verbalize it; by that point, she already inhabited a distant world of incoherent mumbles and odd gestures. Of late, Carmela had spiraled downhill—a seizure, a stroke, a pulmonary embolism. Now she’d stopped eating and drinking altogether. When we admitted her, she was in renal failure. Rehydrating her was easy enough, and her kidneys turned around, but now what? She was still spitting out food and drink. The family didn’t want a gastrostomy tube placed, but they weren’t ready to say goodbye, either. I had a number of conversations with her oldest daughter as she and her siblings warily circled a difficult decision. Finally, they all agreed to take her home without a single tube, line, or medication, fully realizing the inevitable outcome. They understand that she will die at home, in her bed, surrounded by her family. And she will not suffer. Late in the afternoon I receive a reassuring call from the hospice nurse, who tells me the family is coping well. “They’re very caring,” she says. “Yes,” I reply, remembering our many talks. “Mrs. Morro is very lucky.”
Every end-of-life story is different. Today, I hold a tense family meeting with Georgette Davis’s grown children. Mrs. Davis, 76, suffered a myocardial infarction and anoxic brain damage before being intubated two weeks ago while at dialysis. She hasn’t woken up since. Her eyes flicker, but don’t focus. Her hand doesn’t respond to a grasp, nor to pain. “Prognosis poor,” our consulting neurologist has written in her chart. When I gather with her children, their mood is somber and testy. A daughter angrily recalls the physician who said the situation was “hopeless.” A son resents that we transferred his mother out of the intensive care unit. They all wonder whether their mom is getting adequate nursing care. A daughter-in-law, a social worker, tosses me gentle openings. “Do you think that her care is affecting her recovery? What do you think her chances are?” I try to be honest about her bleak prognosis without trampling every glimmer of hope. After a discussion filled with long, edgy silences, the family seems to soften. They elect to continue the current course—including the placement of tracheostomy and gastrostomy tubes—and to reconvene in two weeks, at which point their love for their mom may lead them to consider other options.
While most of us—patients, family members, and that doctor in the mirror—get caught up in day-to-day events, our emotional universes reside in murky, subterranean spaces. I’m reminded of that today as we drive Ariel and a friend off to a sleep-away camp four hours from home. When we arrive, Ariel hurries us along while Diane and I sort out the various forms (medical history, desired group activities, emergency contacts, camper’s personal likes and dislikes …), wait in several lines, and pay the requisite fees. When we finally reach Ariel’s cabin, the counselors are cheery and welcoming, but her bunkmates are sitting on their beds like astronauts about to be launched on a rocket they know is defective. The air is thick with anxious gloom; a lavish goodbye is out of the question. We follow the script, trying our best not to embarrass Ariel too much. And then, after the final hug, we finally step outside and into our car. “She barely said good-bye to me,” complains our younger daughter Nikki. “I think Ariel was nervous and upset,” Diane explains. We all are, I reflect, as a silent, primitive howl of shock and loss echoes through the cavernous recesses (not described in any medical text) that my soul calls home.
In order to preserve patient confidentiality, the patients’ names and identifying characteristics have been changed in each scenario.
Copyright © 2004 by the American Academy of Family Physicians.
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