The story is long, but it is one of perseverance, belief, and the mystery and beauty of the unknown. It is the story of Mr. M, a man far from home yet safe in the hands of strangers and of the complexity and failures of the “big picture.”
Many immigrants from less-developed countries arrive in America with hopes of a new life far from the emotional poverty of authoritarian and tyrannical governments that denigrate the value of an individual and malign the egalitarian traits that we all desire. Mr. M was just such a person. A slightly built, 69-year-old émigré from Sudan, Mr. M was employed in a convenience store where he stocked shelves and operated the cash register in an effort to establish an American identity and provide money for his family in Sudan. According to emergency department records, a man entered the convenience store and attempted to shoplift several items—Mr. M struggled with the thief and, in so doing, fell and suffered a tibial plateau fracture. He was taken to the hospital, treated, and discharged home, but in a matter of days, he found himself rehospitalized in a medical intensive care unit (MICU) on a ventilator with acute respiratory distress syndrome (ARDS), sepsis, and acute renal failure. After a few weeks of diligent searching by hospital staff, several cousins and nephews were located in various states around the country and summoned to the hospital. Upon their arrival, a dismal prognosis was presented and discussion held as to the presence of any verbal or written documentation of Mr. M's previously voiced opinion regarding resuscitation or withdrawal of life-sustaining therapy. The assembled family stated that they could not make any decisions and requested that no changes in therapy be made until Mr. M's brother arrived from Sudan in 3 to 4 days—they believed he would best know what Mr. M would want—and because Mr. M was a devout Muslim, the family assured us that Allah would provide all the answers, maybe not now but certainly with time. So the MICU medical team dutifully waited.
Three days later, Mr. M's brother arrived, and after allowing him time to adjust to the debilitated appearance of his brother, the MICU attending physician, along with the palliative care consultant and psychiatric resident, sat down with Mr. M's brother, two cousins, and a Sudanese translator on the telephone (Mr. M's brother could not speak English). After careful presentation of Mr. M's history, including the probability of prolonged, if not lifelong, hemodialysis and the attending physician's belief that it would be difficult if not impossible to wean him from the ventilator because of ARDS-related pulmonary fibrosis, his brother was asked about goals of care and what Mr. M would want in such a situation. It was explained that, during one point in Mr. M's long stay in the MICU, he was alert enough to proclaim that he “was tired” and had “had enough” and that, in the United States, a patient felt to have decision-making capacity could legally and ethically elect to withdraw life-sustaining therapy, even if it meant a hastened death. Mr. M's brother said little during the presentation, but as tears slid down his cheeks, he began a long monologue intermittently deciphered by the distant translator. He stated that we were not to listen to his brother, that in such a tenuous condition his brother could not make a coherent and balanced decision, that Allah would determine what would happen, and that withdrawing life-sustaining therapy was against their Muslim beliefs. He reiterated this argument over and over, then asked that we keep “doing everything” for his brother. We acknowledged his anguish and grief and the horrible tragedy that had befallen Mr. M and assured him that, for now, the MICU medical team would continue aggressive care, but in a discussion among medical and nursing staff, comments were made that Mr. M's brother did not understand the “big picture” and that he was instead focusing on an unrealistic small picture. Frustration reigned, and several staff outwardly voiced that the meeting had been a failure.
Throughout the following weeks in the MICU, Mr. M's brother was by his side, praying and invoking the kindness of Allah. Then, something remarkable happened—Mr. M began to slowly improve, and then an event that seemed impossible just a few weeks earlier happened. Mr. M was transferred out of the MICU to a medical floor. Then, ever so slowly, he gained strength, and again, what was thought impossible just a few weeks earlier, happened once more—he was weaned from the ventilator.
Then one day, Mr. M was sitting in a chair, a feat he had not accomplished in more than 3 months, then he was walking with assistance, and then finally, eating—a testament not only to Allah, but also to the technology of medicine and the wonderful healing provided by all the personnel who provided care during Mr. M's long hospitalization. But one thing remained: Hemodialysis, a painful reminder of that ill-fated day in the convenience store when a decision made in the blink of an eye changed his life forever. But the final coup d'état occurred a few weeks later, a joyous event attended by no more than four or five people; Mr. M was discharged home with his brother as caretaker, his smile filling the hallway as he triumphantly exited the hospital that had saved his life in a land so far from home.
As I look back on Mr. M's time in the hospital and that fateful family meeting in which we were asked to abide by the will of Allah and continue life-sustaining therapy, I now realize that Mr. M's brother did in fact get the big picture—a picture far bigger than any of us could envision or understand. In medicine, we preach the value of the big picture, to look globally at the situation so that we may preclude a clouding of expected outcomes and, in turn, ensure an objective and impartial decision-making process when considering the benefit of various, and oftentimes controversial, treatment options. But what we often forget is that the big picture is complex and convoluted, with twists and turns framed by religion, ethnicity, personal values, and family history. In Mr. M's case, the big picture was muddled and fragmented and colored by a culture and religion we knew little about. In reality, it was us, the medical staff, who failed to get the big picture, and contrary to prior accusations that Mr. M's brother saw only the small picture, it was us who saw the small picture—a very small picture.
(The details have been minimally changed to protect the identity of the patient.)