Perspectives
The art of medicine The library card There was a library card and a pre-paid cell phone. The library card had a woman’s name listed on it. The phone revealed the patient’s final actions: he had called 911 twice. The rest of the details we knew from the emergency medical services report. They had found the patient gasping for air. He seemed to be having an allergic reaction so they gave him epinephrine and steroids. His respiratory distress worsened and they tried to intubate him, but were unsuccessful. He had been without a pulse for about 10 minutes when they did an emergency cricothyrotomy to access his airway. The patient arrived in our intensive-care unit (ICU) with nothing else; just a library card, a cell phone, and a slim medical report of what had happened. No one knew his name, his age, or the names of any family. The ambulance had picked him up at a boarding house where he had lived for less than a week. While the patient was in the ICU, the social worker tracked down the phone number of the woman listed on the library card. “She doesn’t really know him”, the social worker said. “He was just an acquaintance who lived in her apartment building. She’s not even sure what his official Vietnamese name is.” Ultimately, we uncovered the numbers that had been called from the patient’s cell phone in the months leading up to his admission to hospital. Rare details about the patient emerged: he had been a temp worker for Vietnamese restaurants. No one knew his formal name. No one knew him. After 2 weeks in the ICU the patient stabilised and was transferred to the medical floor on my service. The ICU recommended that he be transitioned to comfortmeasures-only (CMO) because of his poor outlook. The patient had no evidence of cortical activity, and, after 6 months, would probably be in a persistent vegetative state. I stared at my nameless, story-less patient. With the exception of the tracheostomy, he looked perfectly fine. He blinked occasionally, which created a feeling that he might be responding, but in serial exams with the Vietnamese interpreter and on repeat brain imaging and electroencephalogram it was clear that he had lost all cortical function. Without a story, I wasn’t sure what was best for the patient. Would he have wanted to live like this, stuck in a hospital, on “life support”? Would a CMO approach preserve his dignity, as the ICU doctors had suggested? Or was he someone who would have wanted to be kept “alive” at all costs? I talked with the doctors in the ICU, the hospital lawyers, and the hospital’s ethicist. “At this hospital we err on the side of life”, the ethicist said. But what kind of life? “He’ll just end up living in the hospital until he dies if we 766
don’t make him CMO”, several of my colleagues told me. “It’s a terrible use of resources.” Even though a life on machines wasn’t what I would wish for myself or my family, I just didn’t feel that I could “pull the plug” on a nameless patient. I needed some proof of his life before the life he was now trapped in. The acquaintance listed on the library card had told the social worker that the patient might have a son in Vietnam. We decided to follow that lead and by subpoenaing older phone records we were able to call the son. “He and his son were estranged”, said my Vietnamese-speaking colleague, shrugging his shoulders after speaking with the patient’s son. “His son didn’t really know his dad. He hadn’t seen him in almost 20 years.” The patient’s son didn’t feel comfortable helping to make decisions about goals of care, and he referred us to the patient’s estranged brother who deferred to his daughter, an anaesthesiologist in Vietnam. “The niece who is an anaesthesiologist gets what we’re saying about quality of life and that the patient probably won’t recover any brain function, but she says her dad isn’t ready to accept that”, the same colleague told me. “But she did ask that if the patient dies, could we please send the ashes to Vietnam?” The weeks slipped by, and the patient’s condition remained the same. His outlook, grim from the onset, grew bleaker as he passed the 6-month mark that made his persistent vegetative state even less likely to improve. One day the team realised that it had been weeks since our last contact with the patient’s family, and we tried to call his son. When there was no answer, we tried again and again over the next few days. We finally reached out to the anaesthesiologist niece, who advised us to keep trying the son at the same phone number. Patients who have never identified a surrogate decision-maker before losing their own decision-making capacity are typically referred to as unbefriended or unrepresented patients. None of my patient’s friends or family knew him well enough to predict his preferences, and his unbefriended status became clear as his family and friends stopped answering the medical team’s phone calls. Soon it had been months since we had been able to reach anyone in Vietnam. We called in the morning and evening, but there was no answer. We emailed the son at an address that he had responded from before, but again did not receive an answer. If a surrogate decision maker is not in place, hospitals can go to court to request a court-appointed guardian to act as health-care decision maker. In this patient’s case the hospital’s lawyers sought a court-appointed guardian when the patient’s family stopped answering calls. The differences between the patient and his guardian were striking: the www.thelancet.com Vol 385 February 28, 2015
patient was from another culture and impoverished, whereas the guardian bore more semblance to the medical team. The patient, however, was lucky to receive a court-appointed guardian. In many places guardians are voluntary and scarce, and physicians must act as surrogates even though hospital policies often forbid this because of conflicts of interest. The patient was fortunate to have a surrogate appointed who was not an employee of the hospital, and who was less invested in whether the patient remained hospitalised indefinitely. Still, there was little to guide the guardian’s decision making. Narrative medicine and medical ethics can help clinicians navigate difficult decision making with patients, but how do we advocate for narrative-less, unbefriended patients? Even with a guardian in place, should a doctor advocate for a patient’s perceived dignity? Should we aim to keep patients alive as long as possible by whatever means if we don’t know anything about their values or traditions? Modern medical ethics steers clinicians with four guiding principles—autonomy, beneficence, non-malfeasance, and justice. By contrast, narrative ethics, a newer field, proposes that a patient’s life story should inform moral decision making. However, both ethical approaches, one anchored in abstract frameworks, the other predicated on the truth behind a personal history, rely heavily on interpretation driven by the cultural background and mores of the surrogate decision maker. Our hospital’s ethicist suggested that the patient’s story indicated that he had tried to “live off the grid” by losing touch with his family, working as a temp, and keeping few contacts. But this interpretation of the available fragments of narrative fails to explore the tensions of the patient’s socioeconomic background and potential reality. In abject poverty, is it easy to maintain ties with faraway family? What if he meant to send remittances, but couldn’t? His life as a restaurant temp, travelling between cities, may have been motivated by a number of forces, some unimaginable to us. As the weeks passed and more staff became involved in the patient’s care, rumours emerged that seemed to be the product of a quiet patient and curious caretakers. Someone wrote in the medical chart that the patient “may have been involved in the human slave trade”, and in another place someone noted that “the patient’s family is ashamed that he is here as an undocumented immigrant, so they haven’t returned our phone calls”. It was narrative medicine gone awry, with false assumptions and confabulations born out of a relationship with a patient whose silence was troublesome and whose background couldn’t be discovered. The patient’s narrative was especially fraught— fragmented and incoherent—and did not give us any clues about the overriding values or traditions that the patient may have prioritised. Was he someone who valued his independence or was he socially isolated? We couldn’t know. Narrative ethics provides a vocabulary for www.thelancet.com Vol 385 February 28, 2015
Corbis
Perspectives
interpreting life histories, but my patient’s story was like a post-modern collage, open to endless speculation. Ultimately, the patient’s trajectory will be determined inside a courtroom, and not a hospital. The guardian, his medical advisers, and a judge will try to piece together both the medical and social narratives, and identify an outcome that preserves the patient’s autonomy, and encourages beneficence. Whether that means stopping tube feedings and starting a morphine drip, or continuing with the current care plan, is uncertain, but either approach will underscore the lack of the patient’s voice, despite everyone’s best efforts. I’m still troubled by my decision to pursue further care for the patient. Did I prolong his suffering? He had a gastrostomy tube placed for enteral feeding, and occasionally he gets antibiotics for pneumonia. His breathing is stable on a trach-mask. He has now been living in the hospital for a year, with no end in sight. He looks comfortable, but I can’t really know how he feels. In fact, even though I think he will remain unconscious, unable to comprehend suffering, there is a small chance that he might still experience pain through peripheral pain receptors. It’s this slight possibility of suffering that makes me want to withdraw all life-sustaining treatments like nutrition and hydration, and yet the idea of letting the patient die is profoundly sad. His life story, whether one of proud independence or social isolation, will end on a note of alienation, with no family or friends involved. I keep coming back to the library card. Why did he have it? What did he do at the library? Did he surf the Internet, or check out books? Did he look at newspapers? Or did he just go to the library to escape the elements, to sit in a quiet place, where everything was calm?
Grace Farris Department of Medicine, Beth Israel Deaconess Medical Center, Boston MA 02215, USA [email protected]
767
The art of medicine The library card There was a library card and a pre-paid cell phone. The library card had a woman’s name listed on it. The phone revealed the patient’s final actions: he had called 911 twice. The rest of the details we knew from the emergency medical services report. They had found the patient gasping for air. He seemed to be having an allergic reaction so they gave him epinephrine and steroids. His respiratory distress worsened and they tried to intubate him, but were unsuccessful. He had been without a pulse for about 10 minutes when they did an emergency cricothyrotomy to access his airway. The patient arrived in our intensive-care unit (ICU) with nothing else; just a library card, a cell phone, and a slim medical report of what had happened. No one knew his name, his age, or the names of any family. The ambulance had picked him up at a boarding house where he had lived for less than a week. While the patient was in the ICU, the social worker tracked down the phone number of the woman listed on the library card. “She doesn’t really know him”, the social worker said. “He was just an acquaintance who lived in her apartment building. She’s not even sure what his official Vietnamese name is.” Ultimately, we uncovered the numbers that had been called from the patient’s cell phone in the months leading up to his admission to hospital. Rare details about the patient emerged: he had been a temp worker for Vietnamese restaurants. No one knew his formal name. No one knew him. After 2 weeks in the ICU the patient stabilised and was transferred to the medical floor on my service. The ICU recommended that he be transitioned to comfortmeasures-only (CMO) because of his poor outlook. The patient had no evidence of cortical activity, and, after 6 months, would probably be in a persistent vegetative state. I stared at my nameless, story-less patient. With the exception of the tracheostomy, he looked perfectly fine. He blinked occasionally, which created a feeling that he might be responding, but in serial exams with the Vietnamese interpreter and on repeat brain imaging and electroencephalogram it was clear that he had lost all cortical function. Without a story, I wasn’t sure what was best for the patient. Would he have wanted to live like this, stuck in a hospital, on “life support”? Would a CMO approach preserve his dignity, as the ICU doctors had suggested? Or was he someone who would have wanted to be kept “alive” at all costs? I talked with the doctors in the ICU, the hospital lawyers, and the hospital’s ethicist. “At this hospital we err on the side of life”, the ethicist said. But what kind of life? “He’ll just end up living in the hospital until he dies if we 766
don’t make him CMO”, several of my colleagues told me. “It’s a terrible use of resources.” Even though a life on machines wasn’t what I would wish for myself or my family, I just didn’t feel that I could “pull the plug” on a nameless patient. I needed some proof of his life before the life he was now trapped in. The acquaintance listed on the library card had told the social worker that the patient might have a son in Vietnam. We decided to follow that lead and by subpoenaing older phone records we were able to call the son. “He and his son were estranged”, said my Vietnamese-speaking colleague, shrugging his shoulders after speaking with the patient’s son. “His son didn’t really know his dad. He hadn’t seen him in almost 20 years.” The patient’s son didn’t feel comfortable helping to make decisions about goals of care, and he referred us to the patient’s estranged brother who deferred to his daughter, an anaesthesiologist in Vietnam. “The niece who is an anaesthesiologist gets what we’re saying about quality of life and that the patient probably won’t recover any brain function, but she says her dad isn’t ready to accept that”, the same colleague told me. “But she did ask that if the patient dies, could we please send the ashes to Vietnam?” The weeks slipped by, and the patient’s condition remained the same. His outlook, grim from the onset, grew bleaker as he passed the 6-month mark that made his persistent vegetative state even less likely to improve. One day the team realised that it had been weeks since our last contact with the patient’s family, and we tried to call his son. When there was no answer, we tried again and again over the next few days. We finally reached out to the anaesthesiologist niece, who advised us to keep trying the son at the same phone number. Patients who have never identified a surrogate decision-maker before losing their own decision-making capacity are typically referred to as unbefriended or unrepresented patients. None of my patient’s friends or family knew him well enough to predict his preferences, and his unbefriended status became clear as his family and friends stopped answering the medical team’s phone calls. Soon it had been months since we had been able to reach anyone in Vietnam. We called in the morning and evening, but there was no answer. We emailed the son at an address that he had responded from before, but again did not receive an answer. If a surrogate decision maker is not in place, hospitals can go to court to request a court-appointed guardian to act as health-care decision maker. In this patient’s case the hospital’s lawyers sought a court-appointed guardian when the patient’s family stopped answering calls. The differences between the patient and his guardian were striking: the www.thelancet.com Vol 385 February 28, 2015
patient was from another culture and impoverished, whereas the guardian bore more semblance to the medical team. The patient, however, was lucky to receive a court-appointed guardian. In many places guardians are voluntary and scarce, and physicians must act as surrogates even though hospital policies often forbid this because of conflicts of interest. The patient was fortunate to have a surrogate appointed who was not an employee of the hospital, and who was less invested in whether the patient remained hospitalised indefinitely. Still, there was little to guide the guardian’s decision making. Narrative medicine and medical ethics can help clinicians navigate difficult decision making with patients, but how do we advocate for narrative-less, unbefriended patients? Even with a guardian in place, should a doctor advocate for a patient’s perceived dignity? Should we aim to keep patients alive as long as possible by whatever means if we don’t know anything about their values or traditions? Modern medical ethics steers clinicians with four guiding principles—autonomy, beneficence, non-malfeasance, and justice. By contrast, narrative ethics, a newer field, proposes that a patient’s life story should inform moral decision making. However, both ethical approaches, one anchored in abstract frameworks, the other predicated on the truth behind a personal history, rely heavily on interpretation driven by the cultural background and mores of the surrogate decision maker. Our hospital’s ethicist suggested that the patient’s story indicated that he had tried to “live off the grid” by losing touch with his family, working as a temp, and keeping few contacts. But this interpretation of the available fragments of narrative fails to explore the tensions of the patient’s socioeconomic background and potential reality. In abject poverty, is it easy to maintain ties with faraway family? What if he meant to send remittances, but couldn’t? His life as a restaurant temp, travelling between cities, may have been motivated by a number of forces, some unimaginable to us. As the weeks passed and more staff became involved in the patient’s care, rumours emerged that seemed to be the product of a quiet patient and curious caretakers. Someone wrote in the medical chart that the patient “may have been involved in the human slave trade”, and in another place someone noted that “the patient’s family is ashamed that he is here as an undocumented immigrant, so they haven’t returned our phone calls”. It was narrative medicine gone awry, with false assumptions and confabulations born out of a relationship with a patient whose silence was troublesome and whose background couldn’t be discovered. The patient’s narrative was especially fraught— fragmented and incoherent—and did not give us any clues about the overriding values or traditions that the patient may have prioritised. Was he someone who valued his independence or was he socially isolated? We couldn’t know. Narrative ethics provides a vocabulary for www.thelancet.com Vol 385 February 28, 2015
Corbis
Perspectives
interpreting life histories, but my patient’s story was like a post-modern collage, open to endless speculation. Ultimately, the patient’s trajectory will be determined inside a courtroom, and not a hospital. The guardian, his medical advisers, and a judge will try to piece together both the medical and social narratives, and identify an outcome that preserves the patient’s autonomy, and encourages beneficence. Whether that means stopping tube feedings and starting a morphine drip, or continuing with the current care plan, is uncertain, but either approach will underscore the lack of the patient’s voice, despite everyone’s best efforts. I’m still troubled by my decision to pursue further care for the patient. Did I prolong his suffering? He had a gastrostomy tube placed for enteral feeding, and occasionally he gets antibiotics for pneumonia. His breathing is stable on a trach-mask. He has now been living in the hospital for a year, with no end in sight. He looks comfortable, but I can’t really know how he feels. In fact, even though I think he will remain unconscious, unable to comprehend suffering, there is a small chance that he might still experience pain through peripheral pain receptors. It’s this slight possibility of suffering that makes me want to withdraw all life-sustaining treatments like nutrition and hydration, and yet the idea of letting the patient die is profoundly sad. His life story, whether one of proud independence or social isolation, will end on a note of alienation, with no family or friends involved. I keep coming back to the library card. Why did he have it? What did he do at the library? Did he surf the Internet, or check out books? Did he look at newspapers? Or did he just go to the library to escape the elements, to sit in a quiet place, where everything was calm?
Grace Farris Department of Medicine, Beth Israel Deaconess Medical Center, Boston MA 02215, USA [email protected]
767
