PERSPECTIVE LIFE OR DEATH FOR THE DEAD-DONOR RULE in a dead person. In non-dona- the concepts of death and crite- ing donation consent rates by en tion circumstances, the precise ria for determining it in both hancing family education and moment separating alive from DBDD and DCDD, reviews of communication, optimizing end dead is usually inconsequential, professional and public opinion of-life care for donors while sup- because physicians declaring death from several studies reveal strong porting grieving families, and have the luxury of time. In the support for the DDr. Indeed, developing state donor registries circumstances of donation, tim- the DDR is so clearly regarded as to authorize first-person donor ing is critical to minimize warm an axiom that survey questions consent. Recognizing that the ischemic exposure of the organs assume its essential role and in- harms of abandoning the DDR being transplanted. Thus, a rea- quire whether the protocols for exceeded the benefits, John Rob- soned judgment must be made DCDd or DBDD violate it. 4 ertson proposed a two-part pru- about the moment of death that I believe that the DDR is an dential test for assessing pro is conceptually coherent, physio- indispensable ethical protection posed changes to the rule, asking logically plausible, and socially for dying patients who plan to what effect they would have on acceptable donate organs and one that the protection of vulnerable per- Physicians should apply the strengthens public trust and con- sons and on preserving the pub- circulatory criterion for death fidence in our voluntary system lic trust. 2 These essential questions similarly whether or not organs of organ donation. Public sup- need to be answered conclusively are intended to be donated. port for organ donation is broad before our society considers aban When a dying patient with a but shallow. It remains precari- doning the DDr. do-not-resuscitate (dnr order ous and can be shaken dramati inclosure forms provided by the author is not an organ donor, death is cally by highly publicized dona- are available with the full text of this arti. usually declared at the moment tion scares such as those following cle at NEJM or of asystole, a time when it still a BBC Panorama expose in 1980, might be possible to resuscitate CBS's 1997 report on 60 Minutes he Departments of Neurology and ne. Geisel School of Medicine at the patient if cardiopulmonary about the Cleveland Clinics con- uth. Hanover NH resuscitation(CPR) were attempt- sideration of a DCDD protocol ed. Thus, physicians require only and the story of the California 1. Morrissey PE. The case for kidney dona. the permanent cessation of circu- transplant surgeon who allegedly 2012: 12: 1-8 lation in order to declare death. wrote terminal care orders for an 2. Robertson JA. The dead donor rule. Hast clared when circulation has per- ple harbor a fear that physicians dono r frep1999:29(): 6 In DCDD donors, too, death is de- organ donor in 2006. Many peo- ings cent rug RD, Brock DW. The dead manently ceased. Permanence is have a greater interest in procur- Med Philos 2010,35: 299-3 4. Bastami S. Matthes o Krones T. Biller. that sufficient time has elapsed welfare. They need the reassur- toward donation after cardiac death amon after the occurrence of asystole ance provided by the DDR. In healthcare providers and the general public to assure that circulation will not 2006. the Institute of Medicine Crit Care Med 2013: 41: 897-905 restart spontaneously(autoresus- supported the DDR as a protec- determining death in critical care. nat re citation)and that CPR will not be tive standard necessary to instill Neurol 2013: 9:164-73 Do:10.1056/NEMp1308078 Although public-survey data I favor strategies to increase Copyrighto2013Massachusetts Medical Society. consistently reveal confusion over the organ supply such as improv- What Would you do if it Were your kid? David n. krones md know we're not supposed to though her curly brown hair had tumor recurred, her parents and have favorites, but Lizzy was long since fallen out because of I knew she would ultimately die one of mine. She was 8 years old. radiation and chemotherapy for a of her disease. But she felt fine, Her eyes still sparkled, even malignant brain tumor. When the and it was impossible not to give ENGLJMED 369: 14 NEJM.ORG OCTOBER 3, 2013
n engl j med 369;14 nejm.org october 3, 2013 PERSPECTIVE 1291 Life or Death for the Dead-Donor Rule? in a dead person. In non-donation circumstances, the precise moment separating alive from dead is usually inconsequential, because physicians declaring death have the luxury of time. In the circumstances of donation, timing is critical to minimize warm ischemic exposure of the organs being transplanted. Thus, a reasoned judgment must be made about the moment of death that is conceptually coherent, physiologically plausible, and socially acceptable. Physicians should apply the circulatory criterion for death similarly whether or not organs are intended to be donated. When a dying patient with a do-not-resuscitate (DNR) order is not an organ donor, death is usually declared at the moment of asystole, a time when it still might be possible to resuscitate the patient if cardiopulmonary resuscitation (CPR) were attempted. Thus, physicians require only the permanent cessation of circulation in order to declare death. In DCDD donors, too, death is declared when circulation has permanently ceased. Permanence is established by two conditions: that sufficient time has elapsed after the occurrence of asystole to assure that circulation will not restart spontaneously (autoresuscitation) and that CPR will not be administered.5 Although public-survey data consistently reveal confusion over the concepts of death and criteria for determining it in both DBDD and DCDD, reviews of professional and public opinion from several studies reveal strong support for the DDR.4 Indeed, the DDR is so clearly regarded as an axiom that survey questions assume its essential role and inquire whether the protocols for DCDD or DBDD violate it.4 I believe that the DDR is an indispensable ethical protection for dying patients who plan to donate organs and one that strengthens public trust and confidence in our voluntary system of organ donation. Public support for organ donation is broad but shallow. It remains precarious and can be shaken dramatically by highly publicized donation scares such as those following a BBC Panorama exposé in 1980, CBS’s 1997 report on 60 Minutes about the Cleveland Clinic’s consideration of a DCDD protocol, and the story of the California transplant surgeon who allegedly wrote terminal care orders for an organ donor in 2006. Many people harbor a fear that physicians have a greater interest in procuring their organs than in their welfare. They need the reassurance provided by the DDR. In 2006, the Institute of Medicine supported the DDR as a protective standard necessary to instill public confidence. I favor strategies to increase the organ supply such as improving donation consent rates by enhancing family education and communication, optimizing endof-life care for donors while supporting grieving families, and developing state donor registries to authorize first-person donor consent. Recognizing that the harms of abandoning the DDR exceeded the benefits, John Robertson proposed a two-part prudential test for assessing proposed changes to the rule, asking what effect they would have on the protection of vulnerable persons and on preserving the public trust.2 These essential questions need to be answered conclusively before our society considers abandoning the DDR. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Departments of Neurology and Medicine, Geisel School of Medicine at Dartmouth, Hanover, NH. 1. Morrissey PE. The case for kidney donation before end-of-life care. Am J Bioeth 2012;12:1-8. 2. Robertson JA. The dead donor rule. Hastings Cent Rep 1999;29(6):6-14. 3. Miller FG, Truog RD, Brock DW. The dead donor rule: can it withstand critical scrutiny? J Med Philos 2010;35:299-312. 4. Bastami S, Matthes O, Krones T, BillerAndorno N. Systematic review of attitudes toward donation after cardiac death among healthcare providers and the general public. Crit Care Med 2013;41:897-905. 5. Bernat JL. Controversies in defining and determining death in critical care. Nat Rev Neurol 2013;9:164-73. DOI: 10.1056/NEJMp1308078 Copyright © 2013 Massachusetts Medical Society. What Would You Do if It Were Your Kid? David N. Korones, M.D. I know we’re not supposed to have favorites, but Lizzy was one of mine. She was 8 years old. Her eyes still sparkled, even though her curly brown hair had long since fallen out because of radiation and chemotherapy for a malignant brain tumor. When the tumor recurred, her parents and I knew she would ultimately die of her disease. But she felt fine, and it was impossible not to give
PERSPECTIVE WHAT WOULD YOU DO IF IT WERE YOUR KID> second-line therapy a try. Things us, to make our involvement per- and not ever having stood where did not go well. Within 2 months, sonal. They re entreating us to my patient's family stands, I'm Lizzy had a worn and vacant approach them or their relative not certain how I'd react. Then I stare, and her normally animated not just as another case, but as a say, " But here is what I think I ace was expressionless human being with as much value would do Q. Then, during an MRI, she in- as our own sons and daughters, edge the extraordinarily stressful plicably went into respiratory mothers and fathers. It's another decision they're wrestling wit istress and was whisked away way of asking for guidance, a plea while providing some guidance to the emergency department. I to share with them, as a partner, by answering their question. Fam- saw her in the trauma bay, labor- the heavy burden of decision ilies deserve an answer however ing to breathe, her eyes ablaze making difficult it may be for us to pro- with fear and confusion. She They may not appreciate, how- vide it. would die if she wasn't intubat- ever. that when it comes to mak- But what if what we're recom ed. But should she be? We went ing medical decisions for our own mending for our patient is differ- back and forth: she would ulti- families, we may draw on our ent from what we would do for mately die of her disease, and emotions at least as much as the our own child or spouse? Do we perhaps that was happening now. objectivity required for sound share that information? Or is it But it was so sudden, and what if medical decisions. In addition, acceptable to be less than truth the problem was something fix- medical decisions, particularly re- ful? I recall meeting with the able - a pulmonary embolus or garding goals or limits of care, parents of a 9-month-old with aspiration pneumonia? On the are seldom straightforward and progressive neurodegenerative dis- other hand, how much more depend on the medical scenario, order who was beginning to should a dying child have to en- the patient, the family, and their cough and choke when fed. The dure? Yet those of us who loved culture and philosophy of care. discussion centered on whether a Lizzy were ill prepared to let What I might want for my daugh- G-tube should be placed in this ter(and what she might want) infant whose prognosis would be To escape the chaos of the may be very different from what very poor either way. The par- mergency department, I sat with Lizzy and her family want. rventionist Lizzy's parents squeezed into a So how do we answer? How were inclined to let things take storage room crowded with moni- do we balance our professional their natural course. But the tors and IV poles. We discussed judgment with the very personal feeding issue was hard for them. the pros and cons of intubation, judgments that such a question My sense was that they didn't and through tears her mother asks us to make? We could avoid want to have the G-tube inserted asked me, "What would you do if answering altogether, explaining and were looking for permission that since we're not in the same not to do it then the father suppose we've all been asked situation we cannot possibly know asked, "What would you do if that question: What would you do what we would do. But though were your kid, doc? if it were your child, your mother, there may be truth in that answer, My mind raced: "What would your brother, your husband? Some- it denies our patients an impor- I do, what would I do times I've asked people what they tant piece of information that this were my child, I thought, I mean by this question and may help them make an agoniz- would want the G-tube. But isn't been answered by puzzled looks ing decision. Another option is to that the father in me, making a saying, "What do you mean what answer as honestly as possible. decision based on my own family, do I mean? i just want to know I often combine these ap- culture, philosophy, values, and kid!"People may ask this ques- be presumptuous to think I could the physician's recommenatGn oa what you would do if it were your proaches, explaining that I would emotions? Is this man seeking tion because they reasonably as- say with confidence what I would or the father's -or is he even sume that the option we 'd choose do if it were my child, because considering that distinction? If I for those we love the most is the when it comes to my child, my tell him what I would do if it best option and therefore the thinking is more emotional than were my kid, might I inadvertent- most appropriate for them. They rational. In that situation, I'm a ly put some pressure on this fam- ay also be seeking to humanize father more than a physician, ily to do what their instinct tells 1292 N ENGL J MED 369: 14 NEJM.ORG OCTOBER 3, 2013
PERSPECTIVE 1292 n engl j med 369;14 nejm.org october 3, 2013 second-line therapy a try. Things did not go well. Within 2 months, Lizzy had a worn and vacant stare, and her normally animated face was expressionless. Then, during an MRI, she inexplicably went into respiratory distress and was whisked away to the emergency department. I saw her in the trauma bay, laboring to breathe, her eyes ablaze with fear and confusion. She would die if she wasn’t intubated. But should she be? We went back and forth: she would ultimately die of her disease, and perhaps that was happening now. But it was so sudden, and what if the problem was something fixable — a pulmonary embolus or aspiration pneumonia? On the other hand, how much more should a dying child have to endure? Yet those of us who loved Lizzy were ill prepared to let her go. To escape the chaos of the emergency department, I sat with Lizzy’s parents squeezed into a storage room crowded with monitors and IV poles. We discussed the pros and cons of intubation, and through tears her mother asked me, “What would you do if it were your kid?” I suppose we’ve all been asked that question: What would you do if it were your child, your mother, your brother, your husband? Sometimes I’ve asked people what they mean by this question — and been answered by puzzled looks saying, “What do you mean what do I mean? I just want to know what you would do if it were your kid!” People may ask this question because they reasonably assume that the option we’d choose for those we love the most is the best option and therefore the most appropriate for them. They may also be seeking to humanize us, to make our involvement personal. They’re entreating us to approach them or their relative not just as another case, but as a human being with as much value as our own sons and daughters, mothers and fathers. It’s another way of asking for guidance, a plea to share with them, as a partner, the heavy burden of decision making. They may not appreciate, however, that when it comes to making medical decisions for our own families, we may draw on our emotions at least as much as the objectivity required for sound medical decisions. In addition, medical decisions, particularly regarding goals or limits of care, are seldom straightforward and depend on the medical scenario, the patient, the family, and their culture and philosophy of care. What I might want for my daughter (and what she might want) may be very different from what Lizzy and her family want. So how do we answer? How do we balance our professional judgment with the very personal judgments that such a question asks us to make? We could avoid answering altogether, explaining that since we’re not in the same situation we cannot possibly know what we would do. But though there may be truth in that answer, it denies our patients an important piece of information that may help them make an agonizing decision. Another option is to answer as honestly as possible. I often combine these approaches, explaining that I would be presumptuous to think I could say with confidence what I would do if it were my child, because when it comes to my child, my thinking is more emotional than rational. In that situation, I’m a father more than a physician, and not ever having stood where my patient’s family stands, I’m not certain how I’d react. Then I say, “But here is what I think I would do . . . .” I thus acknowledge the extraordinarily stressful decision they’re wrestling with, while providing some guidance by answering their question. Families deserve an answer, however difficult it may be for us to provide it. But what if what we’re recommending for our patient is different from what we would do for our own child or spouse? Do we share that information? Or is it acceptable to be less than truthful? I recall meeting with the parents of a 9-month-old with a progressive neurodegenerative disorder who was beginning to cough and choke when fed. The discussion centered on whether a G-tube should be placed in this infant whose prognosis would be very poor either way. The parents, of a noninterventionist bent, were inclined to let things take their natural course. But the feeding issue was hard for them. My sense was that they didn’t want to have the G-tube inserted and were looking for permission not to do it. Then the father asked, “What would you do if it were your kid, doc?” My mind raced: “What would I do, what would I do . . . ?” If this were my child, I thought, I would want the G-tube. But isn’t that the father in me, making a decision based on my own family, culture, philosophy, values, and emotions? Is this man seeking the physician’s recommendation or the father’s — or is he even considering that distinction? If I tell him what I would do if it were my kid, might I inadvertently put some pressure on this family to do what their instinct tells What Would You Do if It Were Your Kid?
PERSPECTIVE HAT WOULD YOU DO IF IT WERE YOUR KID them not to do? Or should I lie? be intubated, and I told her par- question. We should remember Should I tell them what I think ents so. That was clearly their that our patients ask it because they were hoping to hear, know- wish as well, and it made the they re seeking guidance, not a ing there is no clear right or most sense to all involved. We menu of options, and I believe wrong, no single standard of care? hoped that if we had a little more we should answer as honestly as The father must have seen panic time to figure out the problem, possible. Perhaps it's not such a in my eyes, because he didn't her condition might be stabilized bad thing if our perspective as a push me to answer, mercifully long enough for her to say good- parent or a spouse is a part of moving on to something else. bye. And that's what happened. our answer. Sharing a little piece ourselves with patients an would have said, "If this were my came out, and she and her family families humanizes us at a time child, I would decide on the basis said their goodbyes before she when they need us to be human of comfort. If I could ensure that died. Her parents still hold onto and sends the message that we he'd get enough to eat and drink that rally as their gift from Lizzy. are all in this together. to remain comfortable. I would The "What would you do? Disclosure forms provided by the author forgo the G-tube. But if he con- question is daunting but com- are available with the full text of this article tinued to cough and choke and mon. Though sometimes the per- at NEJM.org seemed irritable and hungry de- sonal and professional answers spite his medical team's best ef converge, other times the ques- From the Dep matrics and the forts, i would consider the g-tube" tion creates conflict for In Lizzy s case, answering the cians. Perhaps before we passionNet question was not so much hard difficult decisions with in Rochester. NY as tragic. If she'd been my daugh- or families, we should ask our- DOl: 10.1056/NEJMp1304941 ter, I would have wanted her to selves how we would answer that Copyright o 2013 Massachusetts Medical Society ENGLJMED 369: 14 NEJM.ORG OCTOBER 3, 2013 1293
n engl j med 369;14 nejm.org october 3, 2013 PERSPECTIVE 1293 them not to do? Or should I lie? Should I tell them what I think they were hoping to hear, knowing there is no clear right or wrong, no single standard of care? The father must have seen panic in my eyes, because he didn’t push me to answer, mercifully moving on to something else. Had he pushed, I probably would have said, “If this were my child, I would decide on the basis of comfort. If I could ensure that he’d get enough to eat and drink to remain comfortable, I would forgo the G-tube. But if he continued to cough and choke and seemed irritable and hungry despite his medical team’s best efforts, I would consider the G-tube.” In Lizzy’s case, answering the question was not so much hard as tragic. If she’d been my daughter, I would have wanted her to be intubated, and I told her parents so. That was clearly their wish as well, and it made the most sense to all involved. We hoped that if we had a little more time to figure out the problem, her condition might be stabilized long enough for her to say goodbye. And that’s what happened. Lizzy briefly rallied, the tube came out, and she and her family said their goodbyes before she died. Her parents still hold onto that rally as their gift from Lizzy. The “What would you do?” question is daunting but common. Though sometimes the personal and professional answers converge, other times the question creates conflict for clinicians. Perhaps before we discuss difficult decisions with patients or families, we should ask ourselves how we would answer that question. We should remember that our patients ask it because they’re seeking guidance, not a menu of options, and I believe we should answer as honestly as possible. Perhaps it’s not such a bad thing if our perspective as a parent or a spouse is a part of our answer. Sharing a little piece of ourselves with patients and families humanizes us at a time when they need us to be human and sends the message that we are all in this together. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Department of Pediatrics and the Division of Palliative Care, University of Rochester Medical Center; and the CompassionNet Program, Lifetime Care — both in Rochester, NY. DOI: 10.1056/NEJMp1304941 Copyright © 2013 Massachusetts Medical Society. What Would You Do if It Were Your Kid?