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Death by decree
ESSAY
Essay
Death by decree Jyotsna Sahni 0748 h I arrived at the hospital on Tuesday morning expecting the usual ravages of age, illness, and organism. Instead, I faced a personal and professional challenge that would alter my identity as a physician. I found my fellow resident whispering to an older gentleman in the neurosurgical intensive-care unit. He stood at his wife’s bedside. His face was tear-stained and he was wringing his hands. My colleague took me aside and told me her story. This man’s wife, with her multitude of medical problems, had awakened in the middle of the night with a headache. Feeling nauseous, she made her way to the bathroom, where she vomited twice and then lost consciousness. Her husband was there to catch her fall. She was rushed to hospital where an immediate computedtomography scan was done; the diagnosis—“massive cerebral haemorrhage”. Although the neurosurgeon raced to drain the haemorrhage, the patient’s mental status had deteriorated so rapidly that by the time he arrived she was comatose. When the neurosurgeon revealed her dismal prognosis to her distraught husband, they agreed to wean her terminally from the ventilator. Now I understood the pain on this man’s face. 0800 h I introduced myself to Mr F. He told me that he hoped it would all be over by noon. 1130 h When my pager went off with the digital message “2492”, a number well known to me as the neurosurgical intensivecare unit, I thought I was being summoned to pronounce Mrs F dead. But I was wrong. Mrs F’s nurse had approached Mr F with the difficult but state-mandated question about organ donation. He had agreed that his wife would want to be a donor. The nurse had contacted the Center for Organ Recovery and Education (CORE) and its representative, Steve, was present. I was informed that the neurosurgeon had stopped the ventilatory wean, requested the necessary laboratory tests, and begun the tedious paperwork needed for brain-death determination. 1 h later, with normal liver-function results, normal blood urea nitrogen/creatinine, and electrolytes in hand, we now only needed to declare Mrs F officially brain-dead to qualify her for organ donation. To make the diagnosis of brain death, a paradoxical state of legal death but biological life, two board-certified physicians must undertake examinations at least 2 h apart that meet exacting criteria of non-responsiveness and absent
Lancet 2000; 355: 223–24 7990 East Snyder Road, Tucson, AZ 85750, USA (J Sahni MD)
THE LANCET • Vol 355 • January 15, 2000
brainstem reflexes. We consulted another neurosurgeon. I was present for the cold calorics testing; the neurosurgeon, in classic surgical fashion, pimped me on the fast and slow components of nystagmus, but I held my own. So did Mrs F, who stubbornly refused to submit to any component of nystagmus. I drew the arterial blood sample after 30 min of apnoea, and the partial pressure of carbon dioxide had risen dutifully above 60 mm Hg. We were finished, we thought. 1400 h On the brain death criteria form, the neurosurgeon who had seen the patient at 0500 h had left unchecked a single box—“drug toxicity”. Since certain drug overdoses can mimic brain death, we needed to rule out an overdose as a potential cause of Mrs F’s depressed neurological state. We scanned the emergency-room records, which documented that she took lorazepam and haloperidol in small doses on a regular basis. Indeed, the urine toxicology screen had come back positive for benzodiazepines. This was hardly surprising, since the patient ingested these drugs routinely, but because the urine screen is merely a qualitative test to show the presence of a drug rather than its concentration, we needed a true quantitative result to rule out a drug overdose. Although the aetiology of this woman’s demise was obvious from a passing glance at the computed-tomography scan of her head, in matters of organ transplantation rigid criteria needed to be met. We rushed serum for measurements of benzodiazepine and haloperidol concentrations to a toxicology referral laboratory. I spoke to Mr F and his family. They agreed to the unfortunate delay. We postponed Mrs F’s death. 1600 h The external laboratory notified us that the haloperidol blood concentration needed to be sent to California. “California, Pennsylvania?” I asked, hopefully. After all, that was only 1 h away in rush-hour traffic from our Pittsburgh hospital. “No, California state” I was told. There would be no results until tomorrow at the earliest. I was starting to get anxious. Mr F had told me that morning that he wanted everything to be over by noon. I guess that those stereotypes about the genius of brain surgeons are true, because ours thought over this legal and logistic dilemma for a few moments and figured out a way to prove brain death without the need for drug concentration results; he suggested a cerebral blood-flow study. If the results showed no cerebral perfusion, the patient was legally brain-dead and we were free to proceed with organ donation. I explained the delay to Mr F, who was dubious but willing to follow our recommendations. I accompanied my patient and her nurse down to the nuclear study, watching. The technicians were perturbed. No-one had ordered a cerebral blood-flow study in 7 years.
223
ESSAY
Seizing my opportunity, I had them make an extra copy for me, but I had no idea what the fuzzy shadows meant. The radiologists reviewed the images: “Inconclusive. There is a suggestion of minimal flow in the sinuses.” We could not declare Mrs F brain-dead. I, along with the neurosurgeon, nurses, nurse aides, secretary, and Steve the CORE representative, had been following this saga all day. I didn’t want to talk to Mr F. I was hungry and my head ached. “Are you sure you even want her organs?” I asked Steve. “She’s old and sick.” Steve, who had been a quiet yet omnipresent force all day, spoke to me. He told me that her liver could be used in a child, that her kidneys could rescue two people from the unrelenting need for dialysis, that her corneas could restore sight from blindness; she had lived a long life and although it was ending abruptly by this unexpected event, she could provide health to others. I was moved by his words and ready to speak with Mr F. I entered his wife’s room, where he had sat for most of the day. They were alone. His face looked drawn and weak; he sat holding her hand. The nurse gathered his family. Within 5 min there were eight people in the small room. I told them that the cerebral blood-flow study was inconclusive. Mr F interrupted me immediately; “Are you saying there is hope, doctor?” I was momentarily off balance. I hadn’t expected this, but I should have been able to predict it. I mentally cursed all radiologists, pathologists, and anyone else who ended their reports with “Cannot exclude . . . clinical correlation is suggested.” We, the doctors and nurses, knew that for this woman, with her massive bleed and rapid clinical deterioration, there was no hope, but I briefly forgot that for this grieving husband and loving family who had waited patiently all day—hope was all they wanted. I spoke gently and carefully. When I was finished, Mr F understood that in fact I was not offering any hope; rather, I was asking for a mere extension of his wife’s existence, in limbo on the ventilator, until certain technical details were in order and she could be allowed to die. He finally lost his composure; he began to cry and wring his hands, as I had seen him do almost 12 h earlier. His children flocked around him, murmuring words of comfort and support. He told me that he had tried, he had waited, but he couldn’t endure it anymore. I could not blame him; I told him I would respect his wishes. When I left his room, Steve’s anxious eyes were on me. I told him I was sorry, but my first responsibility was to my patient. My head was aching again; had I tried hard enough? Should I have said something differently? The thought of the paediatric liver transplant gnawed at my stomach for only a moment; I was summoned to the emergency room, where I was distracted by the urgent needs of another patient. 2000 h After admitting the new patient with septic shock to the intensive-care unit, I headed back to Mrs F’s room to see how things were progressing. To my surprise, Steve had found a laboratory that would process the blood within 1 h, and had spoken to the family. The neurosurgeon had reversed the terminal wean. But Mrs F’s death was approaching inexorably, irrespective of the plans we made for her. Her body temperature had dropped, and she now required an electric warming blanket. Intravenous fluids ran at a rapid rate to sustain her falling blood pressure. Again we were waiting, but this time we were hoping to
224
delay her natural death until brain death could be confirmed. I wondered what Steve had said, what arguments he had used, whether he had begged. Shortly afterwards, the laboratory called with the results: “undetectable” haloperidol and “subtherapeutic” benzodiazepine concentrations. Now that all criteria were acceptable, we could formally pronounce her brain-dead and turn her care over to CORE, who would set up an operating room and call in the team of transplant surgeons to harvest her organs. Things would move quickly from here. With the laboratory results in hand, the nurses paged the neurosurgeon while I went to Mrs F’s room to pronounce her dead with Mr F beside me. I realised instantly that establishing absence of heart and breath sounds in a woman with a beating heart and breathing lungs made no sense—that is why we were going through all this trouble— but I examined her anyway because Mr F was waiting expectantly for my pronouncement. “Time of death is 9 pm, July 21, 1999”, I stated aloud for the record. Mr F, who had obviously regained his composure during my earlier absence and attacked the vigil with new resolve after speaking with Steve, now burst into tears, threw himself over his wife’s body, kissed her, and told her he loved her and that he would miss her. Tears welled up in my own eyes as I watched him, but I also felt puzzled. What allowed my mere words to alter this man’s reality? After all, nothing had really changed. His wife was just as dead or just as alive as she had been moments before. But to Mr F, I had in my official capacity as a physician pronounced his wife dead. For him, the technicalities and legalities were inconsequential; his wife was dead and his own life would never be the same. After offering my condolences to Mr F, I took a moment to gather my thoughts. Much of my day had been spent feeling out of control. With my long white coat and my stethoscope in hand, I had the trappings of a real doctor, but like many residents do, I had experienced responsibility without autonomy. The rigour of the braindeath protocol put me at odds with myself, the patient, and her family. Her dying process had become unnatural and strongly convoluted. Why had we sacrificed the art of medicine in this patient’s care to that of merely following rules? I was troubled. I felt that if I could not heal my patients, my next responsibility was to provide comfort. Had we obeyed the time-honoured dictum, “First, do no harm”? 2130 h When the neurosurgeon called back and I told him what had transpired, he reminded me that only a board-certified physician could pronounce Mrs F brain-dead. If I were board certified, I wouldn’t be a resident, he gently scoffed. He was on his way. Before he hung up, he added, “Isn’t your shift over yet?” My shift was over and my replacement, the same resident from that very morning, listened carefully as I relayed the story of the day’s events. I signed out my other patients, wondering if I had been careful with my words and actions, hoping that I had been the physician I want to be. My friend assured me that she would take good care of everyone and told me to get a good night’s sleep. I would try. It had certainly been a long day. And soon tomorrow would be here and I had to be ready for it.
THE LANCET • Vol 355 • January 15, 2000
Essay
Death by decree Jyotsna Sahni 0748 h I arrived at the hospital on Tuesday morning expecting the usual ravages of age, illness, and organism. Instead, I faced a personal and professional challenge that would alter my identity as a physician. I found my fellow resident whispering to an older gentleman in the neurosurgical intensive-care unit. He stood at his wife’s bedside. His face was tear-stained and he was wringing his hands. My colleague took me aside and told me her story. This man’s wife, with her multitude of medical problems, had awakened in the middle of the night with a headache. Feeling nauseous, she made her way to the bathroom, where she vomited twice and then lost consciousness. Her husband was there to catch her fall. She was rushed to hospital where an immediate computedtomography scan was done; the diagnosis—“massive cerebral haemorrhage”. Although the neurosurgeon raced to drain the haemorrhage, the patient’s mental status had deteriorated so rapidly that by the time he arrived she was comatose. When the neurosurgeon revealed her dismal prognosis to her distraught husband, they agreed to wean her terminally from the ventilator. Now I understood the pain on this man’s face. 0800 h I introduced myself to Mr F. He told me that he hoped it would all be over by noon. 1130 h When my pager went off with the digital message “2492”, a number well known to me as the neurosurgical intensivecare unit, I thought I was being summoned to pronounce Mrs F dead. But I was wrong. Mrs F’s nurse had approached Mr F with the difficult but state-mandated question about organ donation. He had agreed that his wife would want to be a donor. The nurse had contacted the Center for Organ Recovery and Education (CORE) and its representative, Steve, was present. I was informed that the neurosurgeon had stopped the ventilatory wean, requested the necessary laboratory tests, and begun the tedious paperwork needed for brain-death determination. 1 h later, with normal liver-function results, normal blood urea nitrogen/creatinine, and electrolytes in hand, we now only needed to declare Mrs F officially brain-dead to qualify her for organ donation. To make the diagnosis of brain death, a paradoxical state of legal death but biological life, two board-certified physicians must undertake examinations at least 2 h apart that meet exacting criteria of non-responsiveness and absent
Lancet 2000; 355: 223–24 7990 East Snyder Road, Tucson, AZ 85750, USA (J Sahni MD)
THE LANCET • Vol 355 • January 15, 2000
brainstem reflexes. We consulted another neurosurgeon. I was present for the cold calorics testing; the neurosurgeon, in classic surgical fashion, pimped me on the fast and slow components of nystagmus, but I held my own. So did Mrs F, who stubbornly refused to submit to any component of nystagmus. I drew the arterial blood sample after 30 min of apnoea, and the partial pressure of carbon dioxide had risen dutifully above 60 mm Hg. We were finished, we thought. 1400 h On the brain death criteria form, the neurosurgeon who had seen the patient at 0500 h had left unchecked a single box—“drug toxicity”. Since certain drug overdoses can mimic brain death, we needed to rule out an overdose as a potential cause of Mrs F’s depressed neurological state. We scanned the emergency-room records, which documented that she took lorazepam and haloperidol in small doses on a regular basis. Indeed, the urine toxicology screen had come back positive for benzodiazepines. This was hardly surprising, since the patient ingested these drugs routinely, but because the urine screen is merely a qualitative test to show the presence of a drug rather than its concentration, we needed a true quantitative result to rule out a drug overdose. Although the aetiology of this woman’s demise was obvious from a passing glance at the computed-tomography scan of her head, in matters of organ transplantation rigid criteria needed to be met. We rushed serum for measurements of benzodiazepine and haloperidol concentrations to a toxicology referral laboratory. I spoke to Mr F and his family. They agreed to the unfortunate delay. We postponed Mrs F’s death. 1600 h The external laboratory notified us that the haloperidol blood concentration needed to be sent to California. “California, Pennsylvania?” I asked, hopefully. After all, that was only 1 h away in rush-hour traffic from our Pittsburgh hospital. “No, California state” I was told. There would be no results until tomorrow at the earliest. I was starting to get anxious. Mr F had told me that morning that he wanted everything to be over by noon. I guess that those stereotypes about the genius of brain surgeons are true, because ours thought over this legal and logistic dilemma for a few moments and figured out a way to prove brain death without the need for drug concentration results; he suggested a cerebral blood-flow study. If the results showed no cerebral perfusion, the patient was legally brain-dead and we were free to proceed with organ donation. I explained the delay to Mr F, who was dubious but willing to follow our recommendations. I accompanied my patient and her nurse down to the nuclear study, watching. The technicians were perturbed. No-one had ordered a cerebral blood-flow study in 7 years.
223
ESSAY
Seizing my opportunity, I had them make an extra copy for me, but I had no idea what the fuzzy shadows meant. The radiologists reviewed the images: “Inconclusive. There is a suggestion of minimal flow in the sinuses.” We could not declare Mrs F brain-dead. I, along with the neurosurgeon, nurses, nurse aides, secretary, and Steve the CORE representative, had been following this saga all day. I didn’t want to talk to Mr F. I was hungry and my head ached. “Are you sure you even want her organs?” I asked Steve. “She’s old and sick.” Steve, who had been a quiet yet omnipresent force all day, spoke to me. He told me that her liver could be used in a child, that her kidneys could rescue two people from the unrelenting need for dialysis, that her corneas could restore sight from blindness; she had lived a long life and although it was ending abruptly by this unexpected event, she could provide health to others. I was moved by his words and ready to speak with Mr F. I entered his wife’s room, where he had sat for most of the day. They were alone. His face looked drawn and weak; he sat holding her hand. The nurse gathered his family. Within 5 min there were eight people in the small room. I told them that the cerebral blood-flow study was inconclusive. Mr F interrupted me immediately; “Are you saying there is hope, doctor?” I was momentarily off balance. I hadn’t expected this, but I should have been able to predict it. I mentally cursed all radiologists, pathologists, and anyone else who ended their reports with “Cannot exclude . . . clinical correlation is suggested.” We, the doctors and nurses, knew that for this woman, with her massive bleed and rapid clinical deterioration, there was no hope, but I briefly forgot that for this grieving husband and loving family who had waited patiently all day—hope was all they wanted. I spoke gently and carefully. When I was finished, Mr F understood that in fact I was not offering any hope; rather, I was asking for a mere extension of his wife’s existence, in limbo on the ventilator, until certain technical details were in order and she could be allowed to die. He finally lost his composure; he began to cry and wring his hands, as I had seen him do almost 12 h earlier. His children flocked around him, murmuring words of comfort and support. He told me that he had tried, he had waited, but he couldn’t endure it anymore. I could not blame him; I told him I would respect his wishes. When I left his room, Steve’s anxious eyes were on me. I told him I was sorry, but my first responsibility was to my patient. My head was aching again; had I tried hard enough? Should I have said something differently? The thought of the paediatric liver transplant gnawed at my stomach for only a moment; I was summoned to the emergency room, where I was distracted by the urgent needs of another patient. 2000 h After admitting the new patient with septic shock to the intensive-care unit, I headed back to Mrs F’s room to see how things were progressing. To my surprise, Steve had found a laboratory that would process the blood within 1 h, and had spoken to the family. The neurosurgeon had reversed the terminal wean. But Mrs F’s death was approaching inexorably, irrespective of the plans we made for her. Her body temperature had dropped, and she now required an electric warming blanket. Intravenous fluids ran at a rapid rate to sustain her falling blood pressure. Again we were waiting, but this time we were hoping to
224
delay her natural death until brain death could be confirmed. I wondered what Steve had said, what arguments he had used, whether he had begged. Shortly afterwards, the laboratory called with the results: “undetectable” haloperidol and “subtherapeutic” benzodiazepine concentrations. Now that all criteria were acceptable, we could formally pronounce her brain-dead and turn her care over to CORE, who would set up an operating room and call in the team of transplant surgeons to harvest her organs. Things would move quickly from here. With the laboratory results in hand, the nurses paged the neurosurgeon while I went to Mrs F’s room to pronounce her dead with Mr F beside me. I realised instantly that establishing absence of heart and breath sounds in a woman with a beating heart and breathing lungs made no sense—that is why we were going through all this trouble— but I examined her anyway because Mr F was waiting expectantly for my pronouncement. “Time of death is 9 pm, July 21, 1999”, I stated aloud for the record. Mr F, who had obviously regained his composure during my earlier absence and attacked the vigil with new resolve after speaking with Steve, now burst into tears, threw himself over his wife’s body, kissed her, and told her he loved her and that he would miss her. Tears welled up in my own eyes as I watched him, but I also felt puzzled. What allowed my mere words to alter this man’s reality? After all, nothing had really changed. His wife was just as dead or just as alive as she had been moments before. But to Mr F, I had in my official capacity as a physician pronounced his wife dead. For him, the technicalities and legalities were inconsequential; his wife was dead and his own life would never be the same. After offering my condolences to Mr F, I took a moment to gather my thoughts. Much of my day had been spent feeling out of control. With my long white coat and my stethoscope in hand, I had the trappings of a real doctor, but like many residents do, I had experienced responsibility without autonomy. The rigour of the braindeath protocol put me at odds with myself, the patient, and her family. Her dying process had become unnatural and strongly convoluted. Why had we sacrificed the art of medicine in this patient’s care to that of merely following rules? I was troubled. I felt that if I could not heal my patients, my next responsibility was to provide comfort. Had we obeyed the time-honoured dictum, “First, do no harm”? 2130 h When the neurosurgeon called back and I told him what had transpired, he reminded me that only a board-certified physician could pronounce Mrs F brain-dead. If I were board certified, I wouldn’t be a resident, he gently scoffed. He was on his way. Before he hung up, he added, “Isn’t your shift over yet?” My shift was over and my replacement, the same resident from that very morning, listened carefully as I relayed the story of the day’s events. I signed out my other patients, wondering if I had been careful with my words and actions, hoping that I had been the physician I want to be. My friend assured me that she would take good care of everyone and told me to get a good night’s sleep. I would try. It had certainly been a long day. And soon tomorrow would be here and I had to be ready for it.
THE LANCET • Vol 355 • January 15, 2000