in practice
Fond of My Patient by David Drummond and Julie Starck
A
lthough I am not supposed to have a favorite patient, she is one. Arissa is a three-year-old girl. Her parents, natives of Comoros, had illegally immigrated to the French department of Mayotte. When she was two months old, Arissa developed shortness of breath and a febrile diarrhea associated with an enlarged liver and spleen. Her first diagnosis was a cytomegalovirus infection, but the symptoms persisted despite treatment, and she was transferred to Paris, while her parents remained in hiding in Mayotte. Finally, pulmonary alveolar proteinosis was diagnosed when she was ten months old. As in many cases of this lung disease in patients from Comoros, multiple body systems were affected: she acquired lung damage following the accumulation of lipoproteinous materials in her pulmonary air sacs, a chronic inflammation leading to progressive fibrosis, and a hepatic impairment due to chronic liver fibrosis. Multiple therapeutic lung lavages had resulted in some improvement in her condition, and she was transferred to an intermediate care home when she was thirteen months old, with frequent visits to the hospital for further treatment. When I met Arissa, we had spent the same amount of time in hospitals: she was two years old, and I had been a resident for two years. The similarities stopped there. Arissa was living in a world of women who had known and coddled her since she was ten months old: nurses, nurse aids, and the two July-August 2014
godmothers appointed by a humanitarian nongovernmental organization because she was separated from her parents. I was a stilted young man with square glasses and a classic side part, and I saw her as a time bomb. I met her when she was in respiratory distress, at the beginning of my internship when I did not even know of the disease “pulmonary alveolar proteinosis.” I could not find the reason for her respiratory distress in three volumes and five hundred pages of medical records, and I discovered that Arissa had earned a loyalty card from the intensive care unit, having visited several times. For the first two weeks, I examined her as if I were manipulating an antipersonnel mine. Certainly, it takes time for a physician and patient to build a relationship. And time we have had plenty of. Arissa had a string of complications from her disease, leaving her in a narrow bed, kept alive by her oxygen tube for five months. Day after day, clinical exam after clinical exam, companions in misfortune, we became fond of each other. As an exemplary little patient, she lifted her shirt when I entered her room to listen to her lungs; she showed me where the diapers were when I took too long to find them; and finally, she opened her arms, asking me for a hug. Being a young resident, I examined her every morning, looking for her huge smile that would give me enough energy to take care of all my other patients. When I was on duty during the weekend, I took her with
her oxygen bottle and her four liters per minute to the hospital’s garden, where she shouted after the pigeons. Five months flew by until the morning when I discovered Arissa shivering. Twelve hours after another therapeutic lung lavage, she developed high fever. At that point, I knew her very well; I had no doubt that she was not experiencing the peak of fever that follows 20 percent of therapeutic lung lavages. She was in septic shock. At 9:30 a.m., she was administered a rapid intravenous transfusion; at 9:45 a.m., antibiotics. Her hemodynamic parameters were worsening—her circulatory system was failing. At 10:00 a.m., the intensivist was called. At 10:30 a.m., she was administered a continuous intravenous infusion of vasopressor. At 11:00 a.m., she was transferred to an intensive care unit. At 8:00 p.m., a nurse came to tell me that an intensivist was trying to call me. I held my breath and picked up the phone, fearing the worst. “Your patient is still deteriorating. I may need to start dialysis, but I have read her medical record, and I wonder whether I should: she has no family in France, a serious disease with pulmonary and hepatic involvement, psychomotor retardation; she has been stuck in her bed for five months . . . . What do you think?” I wanted to answer, “Fight to the end!—she is my favorite patient!” But I thought that I did not have the necessary distance to answer the question. I looked for a senior, but it was late in the day and no one answered. I wanted to run away, but the nursing team was staring at me, waiting for the opinion I would give the intensivist. Fortunately, a senior called me back. I was relieved to pass him the buck and not to be involved any more for the patient I was fond of. He answered the intensivist that the patient was “full code,” as some patients with the same disease had completely recovered after a difficult childhood. I could start to breathe again.
s s s
H AS TI N GS C E N TE R RE P O RT
7
The American Academy of Pediatrics’ Committee on Bioethics states that “compassionate and empathetic care for the child historically has been balanced with the need to remain objective and avoid becoming overinvolved.”1 Although we have presented the experience that one of us (David Drummond) had with Arissa to convey how intimate the doctor-patient relationship can feel, we both, like many of our fellow residents, know what it is to be overinvolved with a patient and know the temptation to get rid of difficult decisions by hiding behind a senior. But when a critical care decision must be made about a patient we are overinvolved with, is it better to hand the patient over to a senior colleague? Among many determinants influencing the decisions about limiting pediatric life support, two of the most prominent are the physician’s age and experience: the older and more experienced the doctor is, the more he or she will tend to limit treatment.2 So, are our senior colleagues more objective than we are? Arguably, no one is fully objective since everyone views the world from a particular, subjective perspective. One way of thinking about objectivity, then, is to consider it as the sum of several subjectivities. To deal with Arissa’s case, asking senior physicians for a collegiate discussion would have been wise. By
8 HASTIN G S C E N T E R R E P ORT
multiplying the stakeholders and the perspectives, a discussion among colleagues about a treatment plan decreases the risk of a personal and subjective decision based on one’s preexisting opinions. As an opportunity to listen to and understand colleagues’ opinions, this kind of discussion allows the resident to come out of his or her own perspective and benefit from others’ views. To do this, the resident needs to stay open-minded. If one is too blinded by emotions to listen to others, then he or she is probably overinvolved. A collegial discussion about Arissa could have been an experience of broadening the mind or feeling too keenly the heart’s sway over it. But at least trying to take part in such a discussion would have been better than handing over responsibility for the patient. The guidelines of the Groupe Francophone de Réanimation et Urgences Pédiatriques state, “No one can claim to possess alone all the clues about the medical, human and social situation of a child.”3 This assertion explains why it is valuable to involve residents in treatment decisions, even decisions about life-sustaining pediatric care. Residents have a special place among the physicians in a hospital setting. They are likely the ones who spend the most time with the patient; they are well placed to hear the discussions within a family and to uncover difficult social situations.
Furthermore, at the beginning of their hospital careers, they have a special capacity to understand their patients’ needs. How many times has a patient, parent, or guardian asked us to translate in “normal words” the explanations given by the head of the department? In difficult decisions, residents’ relatively limited medical knowledge prevents them from focusing merely on the medical aspects of a case and enables them to consider instead the patient as a whole. Thus, even when inexperienced, with a lack of objectivity and still in our residency, we have a duty to share our medical, human, and social knowledge about the patients that we take care of in order to allow for and participate in decision-making about them. No matter how fond we are of our patients. 1. M. E. Fallat, J. Glover, and the Committee on Bioethics, “Professionalism in Pediatrics,” Pediatrics 120, no. 4 (2007): e1123-33. 2. D. J. Cook et al., “Determinants in Canadian Health Care Workers of the Decision to Withdraw Life Support from the Critically Ill: Canadian Critical Care Trials Group,” Journal of the American Medical Association 273, no. 9 (1995): 703-708. 3. P. Hubert et al., “Limitations et arrêts de traitements actifs en réanimation pédiatrique: Recommandations du GFRUP,” Archives de Pédiatrie 12, no. 10 (2005): 1501-508. The GFRUP is a French-speaking group of pediatric intensive and emergency care physicians. DOI: 10.1002/hast.322
July-August 2014
Fond of My Patient by David Drummond and Julie Starck
A
lthough I am not supposed to have a favorite patient, she is one. Arissa is a three-year-old girl. Her parents, natives of Comoros, had illegally immigrated to the French department of Mayotte. When she was two months old, Arissa developed shortness of breath and a febrile diarrhea associated with an enlarged liver and spleen. Her first diagnosis was a cytomegalovirus infection, but the symptoms persisted despite treatment, and she was transferred to Paris, while her parents remained in hiding in Mayotte. Finally, pulmonary alveolar proteinosis was diagnosed when she was ten months old. As in many cases of this lung disease in patients from Comoros, multiple body systems were affected: she acquired lung damage following the accumulation of lipoproteinous materials in her pulmonary air sacs, a chronic inflammation leading to progressive fibrosis, and a hepatic impairment due to chronic liver fibrosis. Multiple therapeutic lung lavages had resulted in some improvement in her condition, and she was transferred to an intermediate care home when she was thirteen months old, with frequent visits to the hospital for further treatment. When I met Arissa, we had spent the same amount of time in hospitals: she was two years old, and I had been a resident for two years. The similarities stopped there. Arissa was living in a world of women who had known and coddled her since she was ten months old: nurses, nurse aids, and the two July-August 2014
godmothers appointed by a humanitarian nongovernmental organization because she was separated from her parents. I was a stilted young man with square glasses and a classic side part, and I saw her as a time bomb. I met her when she was in respiratory distress, at the beginning of my internship when I did not even know of the disease “pulmonary alveolar proteinosis.” I could not find the reason for her respiratory distress in three volumes and five hundred pages of medical records, and I discovered that Arissa had earned a loyalty card from the intensive care unit, having visited several times. For the first two weeks, I examined her as if I were manipulating an antipersonnel mine. Certainly, it takes time for a physician and patient to build a relationship. And time we have had plenty of. Arissa had a string of complications from her disease, leaving her in a narrow bed, kept alive by her oxygen tube for five months. Day after day, clinical exam after clinical exam, companions in misfortune, we became fond of each other. As an exemplary little patient, she lifted her shirt when I entered her room to listen to her lungs; she showed me where the diapers were when I took too long to find them; and finally, she opened her arms, asking me for a hug. Being a young resident, I examined her every morning, looking for her huge smile that would give me enough energy to take care of all my other patients. When I was on duty during the weekend, I took her with
her oxygen bottle and her four liters per minute to the hospital’s garden, where she shouted after the pigeons. Five months flew by until the morning when I discovered Arissa shivering. Twelve hours after another therapeutic lung lavage, she developed high fever. At that point, I knew her very well; I had no doubt that she was not experiencing the peak of fever that follows 20 percent of therapeutic lung lavages. She was in septic shock. At 9:30 a.m., she was administered a rapid intravenous transfusion; at 9:45 a.m., antibiotics. Her hemodynamic parameters were worsening—her circulatory system was failing. At 10:00 a.m., the intensivist was called. At 10:30 a.m., she was administered a continuous intravenous infusion of vasopressor. At 11:00 a.m., she was transferred to an intensive care unit. At 8:00 p.m., a nurse came to tell me that an intensivist was trying to call me. I held my breath and picked up the phone, fearing the worst. “Your patient is still deteriorating. I may need to start dialysis, but I have read her medical record, and I wonder whether I should: she has no family in France, a serious disease with pulmonary and hepatic involvement, psychomotor retardation; she has been stuck in her bed for five months . . . . What do you think?” I wanted to answer, “Fight to the end!—she is my favorite patient!” But I thought that I did not have the necessary distance to answer the question. I looked for a senior, but it was late in the day and no one answered. I wanted to run away, but the nursing team was staring at me, waiting for the opinion I would give the intensivist. Fortunately, a senior called me back. I was relieved to pass him the buck and not to be involved any more for the patient I was fond of. He answered the intensivist that the patient was “full code,” as some patients with the same disease had completely recovered after a difficult childhood. I could start to breathe again.
s s s
H AS TI N GS C E N TE R RE P O RT
7
The American Academy of Pediatrics’ Committee on Bioethics states that “compassionate and empathetic care for the child historically has been balanced with the need to remain objective and avoid becoming overinvolved.”1 Although we have presented the experience that one of us (David Drummond) had with Arissa to convey how intimate the doctor-patient relationship can feel, we both, like many of our fellow residents, know what it is to be overinvolved with a patient and know the temptation to get rid of difficult decisions by hiding behind a senior. But when a critical care decision must be made about a patient we are overinvolved with, is it better to hand the patient over to a senior colleague? Among many determinants influencing the decisions about limiting pediatric life support, two of the most prominent are the physician’s age and experience: the older and more experienced the doctor is, the more he or she will tend to limit treatment.2 So, are our senior colleagues more objective than we are? Arguably, no one is fully objective since everyone views the world from a particular, subjective perspective. One way of thinking about objectivity, then, is to consider it as the sum of several subjectivities. To deal with Arissa’s case, asking senior physicians for a collegiate discussion would have been wise. By
8 HASTIN G S C E N T E R R E P ORT
multiplying the stakeholders and the perspectives, a discussion among colleagues about a treatment plan decreases the risk of a personal and subjective decision based on one’s preexisting opinions. As an opportunity to listen to and understand colleagues’ opinions, this kind of discussion allows the resident to come out of his or her own perspective and benefit from others’ views. To do this, the resident needs to stay open-minded. If one is too blinded by emotions to listen to others, then he or she is probably overinvolved. A collegial discussion about Arissa could have been an experience of broadening the mind or feeling too keenly the heart’s sway over it. But at least trying to take part in such a discussion would have been better than handing over responsibility for the patient. The guidelines of the Groupe Francophone de Réanimation et Urgences Pédiatriques state, “No one can claim to possess alone all the clues about the medical, human and social situation of a child.”3 This assertion explains why it is valuable to involve residents in treatment decisions, even decisions about life-sustaining pediatric care. Residents have a special place among the physicians in a hospital setting. They are likely the ones who spend the most time with the patient; they are well placed to hear the discussions within a family and to uncover difficult social situations.
Furthermore, at the beginning of their hospital careers, they have a special capacity to understand their patients’ needs. How many times has a patient, parent, or guardian asked us to translate in “normal words” the explanations given by the head of the department? In difficult decisions, residents’ relatively limited medical knowledge prevents them from focusing merely on the medical aspects of a case and enables them to consider instead the patient as a whole. Thus, even when inexperienced, with a lack of objectivity and still in our residency, we have a duty to share our medical, human, and social knowledge about the patients that we take care of in order to allow for and participate in decision-making about them. No matter how fond we are of our patients. 1. M. E. Fallat, J. Glover, and the Committee on Bioethics, “Professionalism in Pediatrics,” Pediatrics 120, no. 4 (2007): e1123-33. 2. D. J. Cook et al., “Determinants in Canadian Health Care Workers of the Decision to Withdraw Life Support from the Critically Ill: Canadian Critical Care Trials Group,” Journal of the American Medical Association 273, no. 9 (1995): 703-708. 3. P. Hubert et al., “Limitations et arrêts de traitements actifs en réanimation pédiatrique: Recommandations du GFRUP,” Archives de Pédiatrie 12, no. 10 (2005): 1501-508. The GFRUP is a French-speaking group of pediatric intensive and emergency care physicians. DOI: 10.1002/hast.322
July-August 2014
