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How Deep the Sea Is

2018; Elsevier BV; Volume: 71; Issue: 3 Linguagem: Inglês

10.1016/j.annemergmed.2017.08.067

1097-6760

Fabrizio Elia, Ambra Fabbri, Franco Aprà,

Global Public Health Policies and Epidemiology

In the meantime, fishfrom which we all descendwitnessed with curiositythe common tragedy of this worldwhich they undoubtedly found eviland started to thinkin their big seahow deep is the sea—Lucio Dalla, Italian songwriter Diana is 20 years old. Originally from West Africa, she arrived in Italy on a boat crowded with other people. Many died during the desperate, dangerous journey across the sea. When she landed in Augusta, Sicily, Diana probably thought that she had finally made it. She could not have imagined that the hardest part of her journey had yet to begin. A few weeks after her arrival in Italy, Diana falls ill. However, a severe chronic kidney disease, nearly in its end stage, cannot keep her from crossing Italy, moving from the south up to Turin, searching for something she cannot identify. What she certainly did not expect to find was a dialysis machine, an obvious and immediate necessity when Diana arrives, sick and suffering, at our hospital. She is frightened, but convinces herself that the catheter in her jugular vein and that uncomfortable “green washing machine” could turn out to be useful. And for a while, they are, allowing her to eventually leave the hospital and to travel on toward an unknown destination. Shortly after being discharged from the hospital, however, Diana returns, confused and wracked by seizures. This is when the hardest part of her journey begins, a 90-day journey on a hospital bed, instead of a boat. There are many blood tests, injections in her back, even noisy machines that are able to peep into her brain. Encephalitis: this is what the doctors call the uncontrollable movement of my arms. Diana overcomes encephalitis, only to be faced by a dangerous new problem. First a bothersome itch, followed by a high temperature, then hypereosinophilia, and finally such severe liver failure that she is transferred to the ICU. Many medical tests are run in order to rule out rare diseases only found on the other side of the Mediterranean. Then comes DRESS, an acronym that expresses how the drugs that had been so helpful in controlling Diana’s epileptic crises have also caused her grave harm. For the second time in less than a year, Diana is close to death—not in the midst of the sea but in a hospital. Incredibly, though, Diana is able to survive once more, beginning a slow recovery, with her liver enzymes progressively decreasing and coagulation eventually working again. In the aftermath, however, a rift opens between us. After 3 months spent in the nephrology, intensive care, and subintensive care units, she is weak, plagued by fatigue, with a persistent itch and a still-burning mouth. Diana is exhausted. She refuses dialysis. I don’t need that machine; it takes my blood. That is not true, Diana; the dialysis machine is essential to keeping you alive; otherwise, your kidneys will not work. Your drugs poison me. Diana, without our medicines you would not be here; please, disregard the serious reaction you had to the antiepileptic drugs. I want nothing more. How so? Now your ordeal is finally ending; you can start a new life; there are many people who live well on dialysis. Look at my skin, my muscles. They will improve, trust us. I just want a shower. Perhaps she is confused, perhaps she is not able to realize what will be best for her, or perhaps her behavior is a consequence of encephalitis. This is not the case. Diana is entirely conscious; a neurologic examination returns perfect results. Totally isolated, with no friends, parents, relatives around her bed, we suggest that she call home for some comfort. She turns our offer down. After a delay, we try to involve cultural mediators and the local African community, but she is no longer willing to trust anyone. Diana begins to reject everything: food, drugs, dialysis, infusions. Over many days, countless physicians and nurses try to change her mind, attempting to convince her of the importance of treatment in order to save her life—until one morning, when Diana goes into cardiac arrest. She is resuscitated, her pericardium emptied of the fluid that has accumulated over many days without dialysis, but all our efforts are in vain. Less than 10 months after reaching Sicily, her journey in Italy is over. This dramatic story provokes many questions. As physicians, we are used to responding to clinical problems, as we did here. Judged from a clinical perspective, we have perhaps even done a good job. But clearly, this was not enough. We failed to cross the deep sea that stood between us; we failed to cross the cultural barriers that kept us from being able to communicate. This is not truly surprising; we were never taught communication skills during our studies, so we find ourselves sorely unequipped for these challenging moments. Ultimately, there is a great difference between the management of Diana as a patient or Diana as a person: Diana as a patient is one thing; Diana as a person, entirely another. It has something to do with psychology, as well as with anthropology and geography. Unfortunately, we do not know anything about these subjects. We are used to treating patients with a low life expectancy, such as the extremely elderly and patients with end-stage diseases or terminal cancer. We know that our treatments and efforts will in all likelihood have little to no impact on our patients’ possibilities of survival and their quality of life. This is what made it so difficult for us to accept that a young girl with a long life ahead of her would choose to reject treatment. But perhaps, on second thought, Diana was right. Even in a best-case scenario, what could we truly offer her? A discharge letter and a dialysis session 3 times a week. Nothing else. A lottery ticket of sorts. A whole world waited outside the walls of the hospital, a world dramatically different from what Diana had imagined she would find in Italy—a world that she would have had to face alone. Perhaps, with a healthy and strong body, I could have found a solution, but with those damaged kidneys, everything is more difficult. We were taught that the definition of health is “a state of complete physical, mental, and social well-being.” Dear Diana, medicine can unfortunately only deal with a single slice of that pie they call health. And often, as it was in your case, it is the smallest slice.