Opinion
VIEWPOINT
Renee D. Boss, MD, MHS Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, Baltimore, Maryland. Carrie M. Henderson, MD Division of Pediatric Critical Care Medicine, Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, Jackson. Benjamin S. Wilfond, MD Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine, Seattle.
Corresponding Author: Renee D. Boss, MD, MHS, Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, 1809 Ashland Ave, Baltimore, MD 21287 ([email protected]).
Decisions Regarding Resuscitation of Extremely Premature Infants Should Social Context Matter? Even with full resuscitation efforts, 2 of 3 newborns delivered at 23 weeks’ gestation die. Approximately 90% of survivors have moderate to serious disability.1 These unpredictable and life-threatening outcomes inform professional standards that neonatal resuscitation is justified when the parents determine the risks are reasonable. To clinicians, similar treatment requests may feel more reasonable or less reasonable, given the particular family circumstances and the potential effect on the newborn’s interests. This issue raises an important question about whether social context should matter when responding to parents’ requests for resuscitation. In this Viewpoint, we present 2 hypothetical case scenarios based on our experience with these situations. Dr S is called for an urgent prenatal consult. The patient, Mrs G is in labor at 23 weeks’ gestation; the estimated fetal weight is 500 g. She is 37 years old, healthy, has had good prenatal care, and 3 prior miscarriages. Dr S discusses likely outcomes if this newborn delivers soon. Mr and Mrs G mourn their children who died before birth and feel this pregnancy is their last hope for a child. They express understanding of raising a child with neurodevelopmental impairment, having cared for a niece with intellectual disabilities. Hearing the options of nonresuscitation at birth or of withdrawing life support should their newborn do poorly after birth, they ask Dr S to do everything possible to keep their son alive. Hours later, Dr S is consulted again regarding a patient who is refusing tocolysis despite premature labor at 23 weeks. Dr S recognizes the patient as Ms B, recalling her last newborn’s hospitalization after premature birth at 28 weeks. At 24 years old, she has 4 children in state custody because of her ongoing substance abuse. Dr S explains that the degree of prematurity is more serious this time and efforts to halt labor will provide the best hope for this newborn. Ms B replies that she is sick of being pregnant and is sure the baby will be fine. Dr S shares all of the options including nonresuscitation at birth and withdrawing life support later. Ms B adamantly refuses to discuss limiting interventions and says, “No, he’s coming out, then you all will do what you do to take care of him.” Dr S struggles to make sense of these patients’ requests. Both have premature labor at 23 weeks and both newborns have only a small chance of surviving without severe disability. Yet the 2 requests to “do everything” feel so different. Although some hospitals may either compel or discourage resuscitation at 23 weeks’ gestation, most settings entrust physicians to incorporate parents’ requests into treatment plans.2 Parental discretion to steer
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serious medical decisions is easier to support when families appear to comprehend the expected outcomes and wish to build the best life possible for their child. However, their choices do not always seem genuinely reflective of intent or capacity to parent a newborn with complex medical needs. For some families, socioeconomic disadvantages, compounded by physical or mental health challenges, and chaotic living conditions exceed the parents’ abilities and community resources necessary to safely bring the newborn home. These circumstances do not preclude parents’ authority to request intensive medical interventions, even when their other decisions may undermine the success of those interventions. Ms B requested resuscitation but refused tocolysis, which could delay delivery and improve her newborn’s outcome. The likely result of her dissonant choices will be delivery of a newborn with chronic, complex medical needs requiring medical foster care. When parents’ choices seem incongruous, when they place their newborn at risk of harm yet request intensive medical interventions, how do physicians engage with them to forge care goals focused on the newborn? We believe that relationship building is essential to this process. Although training for this skill is rarely emphasized in medical education, the lens of narrative ethics suggests that physicians could begin by cultivating intentional curiosity about patients’ perspectives and about the motivations behind their behaviors and beliefs.3 Perhaps Ms B has been betrayed by people who should have protected her and she believes a good mother fights for her baby. Maybe she refuses tocolysis because it will prolong her hospitalization, jeopardizing her fragile support system. Perhaps her values reflect a community that suspects hospitals experiment on the poor. As a result of effective relationship building, the physician might come to appreciate how some of Ms B’s motivations may be rooted in hope and grief as in the circumstance of Mr and Mrs G. Uncovering and respecting these narratives, especially when they are very different from the physician’s own, may foster trust and expose preconceived notions.4 As a result, physicians may feel less distress in the face of parents’ choices and invest in ongoing dialogue. The effect of relationship building should not be underestimated. Still, authentic appreciation for motivations just begins the difficult work with parents who insist on decisional authority despite little practical accountability. For high-stakes decisions regarding medical interventions that pose a risk of substantial harm, should family context influence the physician’s approach to collaborative decision making? (Reprinted) JAMA Pediatrics Published online April 27, 2015
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Universite Laval User on 05/11/2015
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Opinion Viewpoint
We feel that the contextual realities of family circumstances should influence physician counseling, in an active way, toward directive counseling. Clinicians have a professional responsibility to consider how family circumstances modify the predicted burdens and benefits of requested interventions, thus allowing formation of individualized treatment recommendations that “direct paths of care to best promote a [child’s] overall well-being.”5 The different social circumstances of Mrs G and Ms B allow for endorsement of different treatment recommendations. Directivecounselingofwaryfamiliesplacescognitiveandrelational demands on clinicians. It requires clinicians to be clear about why options will or will not be endorsed.6 Delivering a monologue of medical detail and a menu of treatment options can seem a simpler path, as it did for Dr S in the cases we describe. Yet allowing the delivery of medical information to monopolize conversations with families, even in urgent situations, rarely affects parents’ immediate decisions. The first step in directive counseling must be intentional building of trust. It begins with gathering information about parents’ lives and about who they are as individuals. Physicians must carefully incorporate this nuanced understanding of parents into a tailored preARTICLE INFORMATION Published Online: April 27, 2015. doi:10.1001/jamapediatrics.2014.3813. Conflict of Interest Disclosures: None reported. REFERENCES 1. Tyson JE, Parikh NA, Langer J, Green C, Higgins RD; National Institute of Child Health and Human Development Neonatal Research Network. Intensive care for extreme prematurity: moving beyond gestational age. N Engl J Med. 2008;358 (16):1672-1681.
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sentation of medical details and treatment recommendations. Without genuine dialogue, directive counseling can become paternalistic. If recommendations are presented after really listening to parents, the resulting advice can better respect what is meaningful to them. Clinicians who routinely navigate these high-stakes decisions with parents need excellent communication skills. Medical training regularly imparts technical expertise with interventions of narrow therapeutic value, but often underemphasizes the skills to talk with families about these therapies. Graduating neonatology fellows report feeling unprepared to address conflicts between clinicians and families about medical management.7 An increasing evidence base suggests these skills can be taught and can build clinician capacity to join more closely with families.8 The recommendations offered in this Viewpoint may still result in incongruent opinions between the family and the clinical team. Clinicians must be prepared to accept these treatment requests. Yet, if physicians believe that their goal is not to shift one particular decision, but to set the stage for future therapeutic alliances, the whole health care team will be enabled to engage more successfully with parents.
2. Gallagher K, Martin J, Keller M, Marlow N. European variation in decision-making and parental involvement during preterm birth. Arch Dis Child Fetal Neonatal Ed. 2014;99(3):F245-F249. 3. Lossignol D. Narrative ethics in the field of oncology. Curr Opin Oncol. 2014;26(4):385-388. 4. Kopelman AE. Understanding, avoiding, and resolving end-of-life conflicts in the NICU. Mt Sinai J Med. 2006;73(3):580-586. 5. Blinderman CD, Krakauer EL, Solomon MZ. Time to revise the approach to determining cardiopulmonary resuscitation status. JAMA. 2012; 307(9):917-918.
6. Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16): 2221-2226. 7. Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist training to guide family decision making for critically ill infants. Arch Pediatr Adolesc Med. 2009;163(9):783-788. 8. Kelley AS, Back AL, Arnold RM, et al. Geritalk: communication skills training for geriatric and palliative medicine fellows. J Am Geriatr Soc. 2012; 60(2):332-337.
JAMA Pediatrics Published online April 27, 2015 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Universite Laval User on 05/11/2015
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VIEWPOINT
Renee D. Boss, MD, MHS Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, Baltimore, Maryland. Carrie M. Henderson, MD Division of Pediatric Critical Care Medicine, Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, Jackson. Benjamin S. Wilfond, MD Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine, Seattle.
Corresponding Author: Renee D. Boss, MD, MHS, Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, 1809 Ashland Ave, Baltimore, MD 21287 ([email protected]).
Decisions Regarding Resuscitation of Extremely Premature Infants Should Social Context Matter? Even with full resuscitation efforts, 2 of 3 newborns delivered at 23 weeks’ gestation die. Approximately 90% of survivors have moderate to serious disability.1 These unpredictable and life-threatening outcomes inform professional standards that neonatal resuscitation is justified when the parents determine the risks are reasonable. To clinicians, similar treatment requests may feel more reasonable or less reasonable, given the particular family circumstances and the potential effect on the newborn’s interests. This issue raises an important question about whether social context should matter when responding to parents’ requests for resuscitation. In this Viewpoint, we present 2 hypothetical case scenarios based on our experience with these situations. Dr S is called for an urgent prenatal consult. The patient, Mrs G is in labor at 23 weeks’ gestation; the estimated fetal weight is 500 g. She is 37 years old, healthy, has had good prenatal care, and 3 prior miscarriages. Dr S discusses likely outcomes if this newborn delivers soon. Mr and Mrs G mourn their children who died before birth and feel this pregnancy is their last hope for a child. They express understanding of raising a child with neurodevelopmental impairment, having cared for a niece with intellectual disabilities. Hearing the options of nonresuscitation at birth or of withdrawing life support should their newborn do poorly after birth, they ask Dr S to do everything possible to keep their son alive. Hours later, Dr S is consulted again regarding a patient who is refusing tocolysis despite premature labor at 23 weeks. Dr S recognizes the patient as Ms B, recalling her last newborn’s hospitalization after premature birth at 28 weeks. At 24 years old, she has 4 children in state custody because of her ongoing substance abuse. Dr S explains that the degree of prematurity is more serious this time and efforts to halt labor will provide the best hope for this newborn. Ms B replies that she is sick of being pregnant and is sure the baby will be fine. Dr S shares all of the options including nonresuscitation at birth and withdrawing life support later. Ms B adamantly refuses to discuss limiting interventions and says, “No, he’s coming out, then you all will do what you do to take care of him.” Dr S struggles to make sense of these patients’ requests. Both have premature labor at 23 weeks and both newborns have only a small chance of surviving without severe disability. Yet the 2 requests to “do everything” feel so different. Although some hospitals may either compel or discourage resuscitation at 23 weeks’ gestation, most settings entrust physicians to incorporate parents’ requests into treatment plans.2 Parental discretion to steer
jamapediatrics.com
serious medical decisions is easier to support when families appear to comprehend the expected outcomes and wish to build the best life possible for their child. However, their choices do not always seem genuinely reflective of intent or capacity to parent a newborn with complex medical needs. For some families, socioeconomic disadvantages, compounded by physical or mental health challenges, and chaotic living conditions exceed the parents’ abilities and community resources necessary to safely bring the newborn home. These circumstances do not preclude parents’ authority to request intensive medical interventions, even when their other decisions may undermine the success of those interventions. Ms B requested resuscitation but refused tocolysis, which could delay delivery and improve her newborn’s outcome. The likely result of her dissonant choices will be delivery of a newborn with chronic, complex medical needs requiring medical foster care. When parents’ choices seem incongruous, when they place their newborn at risk of harm yet request intensive medical interventions, how do physicians engage with them to forge care goals focused on the newborn? We believe that relationship building is essential to this process. Although training for this skill is rarely emphasized in medical education, the lens of narrative ethics suggests that physicians could begin by cultivating intentional curiosity about patients’ perspectives and about the motivations behind their behaviors and beliefs.3 Perhaps Ms B has been betrayed by people who should have protected her and she believes a good mother fights for her baby. Maybe she refuses tocolysis because it will prolong her hospitalization, jeopardizing her fragile support system. Perhaps her values reflect a community that suspects hospitals experiment on the poor. As a result of effective relationship building, the physician might come to appreciate how some of Ms B’s motivations may be rooted in hope and grief as in the circumstance of Mr and Mrs G. Uncovering and respecting these narratives, especially when they are very different from the physician’s own, may foster trust and expose preconceived notions.4 As a result, physicians may feel less distress in the face of parents’ choices and invest in ongoing dialogue. The effect of relationship building should not be underestimated. Still, authentic appreciation for motivations just begins the difficult work with parents who insist on decisional authority despite little practical accountability. For high-stakes decisions regarding medical interventions that pose a risk of substantial harm, should family context influence the physician’s approach to collaborative decision making? (Reprinted) JAMA Pediatrics Published online April 27, 2015
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Universite Laval User on 05/11/2015
E1
Opinion Viewpoint
We feel that the contextual realities of family circumstances should influence physician counseling, in an active way, toward directive counseling. Clinicians have a professional responsibility to consider how family circumstances modify the predicted burdens and benefits of requested interventions, thus allowing formation of individualized treatment recommendations that “direct paths of care to best promote a [child’s] overall well-being.”5 The different social circumstances of Mrs G and Ms B allow for endorsement of different treatment recommendations. Directivecounselingofwaryfamiliesplacescognitiveandrelational demands on clinicians. It requires clinicians to be clear about why options will or will not be endorsed.6 Delivering a monologue of medical detail and a menu of treatment options can seem a simpler path, as it did for Dr S in the cases we describe. Yet allowing the delivery of medical information to monopolize conversations with families, even in urgent situations, rarely affects parents’ immediate decisions. The first step in directive counseling must be intentional building of trust. It begins with gathering information about parents’ lives and about who they are as individuals. Physicians must carefully incorporate this nuanced understanding of parents into a tailored preARTICLE INFORMATION Published Online: April 27, 2015. doi:10.1001/jamapediatrics.2014.3813. Conflict of Interest Disclosures: None reported. REFERENCES 1. Tyson JE, Parikh NA, Langer J, Green C, Higgins RD; National Institute of Child Health and Human Development Neonatal Research Network. Intensive care for extreme prematurity: moving beyond gestational age. N Engl J Med. 2008;358 (16):1672-1681.
E2
sentation of medical details and treatment recommendations. Without genuine dialogue, directive counseling can become paternalistic. If recommendations are presented after really listening to parents, the resulting advice can better respect what is meaningful to them. Clinicians who routinely navigate these high-stakes decisions with parents need excellent communication skills. Medical training regularly imparts technical expertise with interventions of narrow therapeutic value, but often underemphasizes the skills to talk with families about these therapies. Graduating neonatology fellows report feeling unprepared to address conflicts between clinicians and families about medical management.7 An increasing evidence base suggests these skills can be taught and can build clinician capacity to join more closely with families.8 The recommendations offered in this Viewpoint may still result in incongruent opinions between the family and the clinical team. Clinicians must be prepared to accept these treatment requests. Yet, if physicians believe that their goal is not to shift one particular decision, but to set the stage for future therapeutic alliances, the whole health care team will be enabled to engage more successfully with parents.
2. Gallagher K, Martin J, Keller M, Marlow N. European variation in decision-making and parental involvement during preterm birth. Arch Dis Child Fetal Neonatal Ed. 2014;99(3):F245-F249. 3. Lossignol D. Narrative ethics in the field of oncology. Curr Opin Oncol. 2014;26(4):385-388. 4. Kopelman AE. Understanding, avoiding, and resolving end-of-life conflicts in the NICU. Mt Sinai J Med. 2006;73(3):580-586. 5. Blinderman CD, Krakauer EL, Solomon MZ. Time to revise the approach to determining cardiopulmonary resuscitation status. JAMA. 2012; 307(9):917-918.
6. Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16): 2221-2226. 7. Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist training to guide family decision making for critically ill infants. Arch Pediatr Adolesc Med. 2009;163(9):783-788. 8. Kelley AS, Back AL, Arnold RM, et al. Geritalk: communication skills training for geriatric and palliative medicine fellows. J Am Geriatr Soc. 2012; 60(2):332-337.
JAMA Pediatrics Published online April 27, 2015 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://archpedi.jamanetwork.com/ by a Universite Laval User on 05/11/2015
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