7th Bengt Robertson Memorial Lecture Neonatology 2015;107:317–320 DOI: 10.1159/000381115
Published online: June 5, 2015
Ethics of Birth at the Limits of Viability: The Risky Business of Prediction Eric S. Shinwell Department of Neonatology, Ziv Medical Center, Bar-Ilan University, Tsfat, Israel
Abstract Infants born at the limits of viability present neonatologists in particular and society in general with difficult challenges. Ethical and legal considerations establish a framework for action, although this varies between countries, departments and individuals and shows dynamic changes over time. This brief review includes a vignette telling a familiar story. In this case, the parents ask searching questions and the caring, knowledgeable neonatologist uses up-to-date information to offer empathic and thoughtful guidance – a challenge for all. © 2015 S. Karger AG, Basel
Introduction
The management of pregnancy at the limits of viability, currently accepted to be 22–24 weeks of gestation, is fraught with difficulties. Ethical challenges arise in neonatology consultations both before birth and at critical junctures in the infant’s postnatal course. Determination of the best course of action demands constructive dialogue, containing accurate, up-to-date information together with appropriate respect for the needs, desires and © 2015 S. Karger AG, Basel 1661–7800/15/1074–0317$39.50/0 E-Mail [email protected] www.karger.com/neo
rights of the parents, who are hopefully acting in the best interests of the child. Decision making is mostly based on predictions of estimated prognosis for mortality and long-term outcome, particularly neurodevelopmental. However, prognostication is a decidedly inexact science that leaves room for the imposition of the moral and ethical value sets of both the physician and the family before a decision may be reached [1]. In particular, the conflicting imperatives of the sanctity of life and future quality of life are the ‘elephant in the room’ with which we struggle. Ethical principles guide physicians meeting this challenge. Beneficence, the aim to benefit the sick, is partnered with nonmaleficence, the desire to do no harm. Recognition of the autonomy of the patient or parent is a lofty principle that physicians aim to follow despite difficulties. Finally, justice requires that all similar cases be treated in an equitable way. The combination of these principles represents the model of the ethical neonatologist. The following narrative provides a basis for the discussion of some of these difficulties, combining clinical and ethical perspectives.
A Vignette
Mary and Tom were frantic with worry. Mary’s labor pains had begun a few hours earlier and now they were holding hands in the delivery room waiting for someone Prof. Eric S. Shinwell Department of Neonatology, Ziv Medical Center, Bar-Ilan University Rambam Street IL–13100 Tsfat (Israel) E-Mail eric.s @ ziv.health.gov.il
Downloaded by: University of Pennsylvania 198.143.38.1 - 7/15/2015 11:18:38 PM
Key Words Limits of viability · Ethics · Prediction · Neurodevelopmental outcome
318
Neonatology 2015;107:317–320 DOI: 10.1159/000381115
Mary was astonished and quickly made it clear that she thought differently. ‘If our daughter has a chance of surviving, we need to do everything we can, I mean with the docs and nurses and so on. And, if she turns out to have problems then we’ll just have to learn to cope.’ Alex realized that she had to clarify things. ‘I think I ought to explain that by law it is possible to go down either of the routes you suggested, but I really need the three of us to come to an agreement so that I know what to do when she is born. I’m going to leave you now and we’ll talk again in a little while.’ Baby Caroline was born in a poor condition a few hours later and was treated actively in the delivery room and transferred to the NICU in accordance with the guidelines agreed on by the parents and Alex. The first 2 days were stormy, with Caroline needing a lot of help, including ventilation and oxygen, dopamine and antibiotics. On day 3, Alex went to update the parents on the latest piece of bad news. So far, each conversation seemed worse than the previous and this time she found Mary and Tom huddled in the corner of the parents’ room looking even more distraught than before. ‘How are you guys doing?’, Alex ventured hopefully. ‘Coping?’ ‘Not really’, said Mary, tearfully. ‘How is she doing today?’ Alex took a deep breath and launched into a long explanation of the state of each of Caroline’s body systems. Her lungs were underdeveloped and she needed some help from the ventilator, while her blood pressure also still needed support with medication. She left the bad news to last as she garnered enough courage to tell these poor parents. ‘I’m afraid Caroline’s ultrasound this morning was really not good. She has some bleeding in her brain.’ Tom interrupted, ‘Oh no! I’ve been reading about that on the net. What grade is it? Just don’t say 4.’ ‘I’m sorry but it is grade 4 on the right but on the left there is only a tiny grade 1 bleed.’ Alex quickly hurried on. ‘This degree of bleeding might threaten her life over the next few days. But, if she does survive, she may well have brain damage that will cause her problems in the future. As I mentioned before the birth, this could include motor problems such as cerebral palsy or being retarded mentally. She could also have problems with her vision and hearing, but this is less likely.’ ‘How much of a risk?’, Mary asked, in shock. ‘It’s a bit early to predict because we need to see how the bleed progresses. Also, there are many studies looking at the long-term outcome of very premature babies who Shinwell
Downloaded by: University of Pennsylvania 198.143.38.1 - 7/15/2015 11:18:38 PM
to explain things. This was her first pregnancy and they knew that contractions at 23 weeks could be dangerous – the anxious faces of the staff were not reassuring. Meanwhile, at the nursing station, Alex, the attending neonatologist, was not looking forward to her next consultation. Discussions with families in crisis were often challenging and impending deliveries at 23 weeks often raised a range of unsettling questions in her mind. What would she do if ever she were faced with such a situation? Not to mention that there was quite a range of opinions among the NICU staff. Gathering her inner strength, she headed to the room and a conversation that would define her next few days and perhaps the fate of two young parents and an unborn child. ‘Hi, I’m Dr. Foster from the Neonatal Unit’, Alex said as she closed the door. ‘I want to bring you up to date with what’s going on.’ Tom answered irritably, ‘About time too.’ Mary glared pointedly at her husband. She had enough to worry about at the moment without Tom’s moods. ‘The OB docs tell me that your contractions are serious and your cervix is 3 cm dilated. They have started you on a drug to try and slow the contractions. The injection you had was to speed up the development of the baby’s lungs, in case you do go on to deliver the baby soon’, Alex explained gently. Mary asked about the baby’s chances if she were to deliver today. She had read on the Internet that even the tiniest premature babies could be saved today and she certainly did not intend to give up on her baby daughter after all the cycles of IVF that she had gone through just to get pregnant. ‘Well’, Alex began, ‘our national statistics suggest only about a 20–30% chance of survival if the baby is born alive – some don’t survive the delivery [2]. And then, you need to take into account all the complications that can happen in each body system – lungs, heart, gut, kidneys, brain and others.’ ‘Yes, I read that they can have brain damage’, Mary said, with a slight tremble in her voice. ‘You are right. Up to about half of the babies born at 23 weeks who survive will have some sort of developmental problem, such as cerebral palsy, mental retardation or problems with seeing or hearing’ [3], Alex continued. Tom interrupted, ‘So, you are saying that we only have about a 10% chance at best of having a normal child. With odds like that and our luck, our lives are really going to be messed up! Do you have to do absolutely everything when the baby’s born or can you not just let nature take its course?’
ferent hospitals and even within a particular hospital over time [7, 8]. She also pointed out that there were many factors influencing these decisions other than just the medical facts. These included the variations in laws in different countries, social and economic factors and, of course, religious positions [9, 10]. She told them of a recent report from a group of prominent experts from around the world who, when faced with a number of situations like this in tiny babies, could not come to any agreement on what was the best or most ethical way to deal with the dilemmas that arose [11]. She slowly and compassionately went through the options open to Mary and Tom. They could continue all treatment but withhold emergency treatment such as resuscitation or simply not add any new treatments or investigations. This would probably lead to Caroline dying of some metabolic imbalance or other, but this was not guaranteed. They could continue general care and just withdraw life-saving drugs. In this country, but not everywhere, the law allows the NICU staff to take a baby off the ventilator and even give some sedation in order to prevent suffering, even knowing that this might speed up the death. In some countries, it is possible to administer drugs with the clear purpose of ending life, but that is really active euthanasia and not considered acceptable here. After explaining that all of these options aimed to prevent a future dominated by a very poor quality of life, Alex added that this lofty purpose provided the moral justification for knowingly abstaining from prolonging the baby’s life by the use of modern intensive care. As she went on, Alex realized that she needed to balance their options and emphasize that she could not be sure of baby Caroline’s future. Even though the bleed in her brain was large on the right, her general condition was not too bad and she now needed only gentle respiratory support. If they decided to withhold or withdraw care, there was no absolute guarantee that Caroline would die and she may even survive with more brain injury. Alex told them of a recent study from Australia that looked at what happened after discussions like this about limitation of treatment. Some of the children who survived, particularly those with a unilateral brain bleed, were either normal or mildly impaired later in life [12]. Mary and Tom asked for some time to think and finally decided that they did not want baby Caroline to suffer any more but would not take her off the ventilator. Treatment was limited, but it soon became clear that Caroline was a real little fighter and began to grow and move away from the danger zone. Her parents slowly grew attached to her and came to terms with their new future as parents.
Ethics of Birth at the Limits of Viability: Prediction
Neonatology 2015;107:317–320 DOI: 10.1159/000381115
319
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have brain bleeds and the results vary quite a bit. That said, Caroline probably has about a 50–70% risk of having either cerebral palsy or retardation or both’ [1, 2]. ‘What does that actually mean for us?’, Tom panicked. ‘We really don’t want a child who’s going to be a vegetable!’ Alex thought for a moment and decided that she needed to provide some solid data to help the parents to move forward. ‘A child with cerebral palsy will often have slow motor development which can mean trouble walking and with the use of her hands and will need help with physiotherapy, occupational therapy and so on. The extent of the limitations that Caroline might have varies a lot between the studies [4, 5]. For example, although about 70% may have cerebral palsy, after they learn to adapt to their disability, only about a third have a motor problem that affects day-to-day functions like walking and manual dexterity [5]. Also, more than 60% have an IQ in the normal range, if you take their prematurity into account [6]. If you feel it would help, I can provide you with some reading material on all of this.’ ‘So, for the moment you’re still doing everything you can to save her, right?’, Mary asked. ‘Or have you already given up on her?’ Tom added, ‘Anyway, who decides? Don’t we have a say in this? After all, we’re the ones who would have to bring up a retarded, paralyzed child if you just go ahead and keep doing all these heroics to keep her alive! I want you to stop all this and let us get on with our lives. Surely, it’s our right to decide?’ Although Mary had her doubts, she was beginning to come round to Tom’s way of thinking. Admittedly, letting baby Caroline go would be very difficult and terribly sad and would put her straight back in the IVF clinic, but maybe that was for the best? Mary did not realize that she was actually talking through her haze of distress. ‘And what would Caroline wish for?’, Alex added almost in a whisper. ‘What would be in her best interest?’ Mary and Tom, together for the first time, exclaimed. ‘She wouldn’t want to live a life of horrible suffering!’ Mary went on, ‘I know I was all in favor of doing everything when she was born and even talked Tom into this, but now things are different. I, actually we, want to know what our options are. Can we decide on what we want you do? Can you take her off the ventilator, and then what would happen?’ Tears were streaming down Mary’s face while Tom looked choked up – Mary was speaking for both of them. Alex knew that this was the most delicate part of the whole discussion. She carefully explained that approaches varied markedly between different countries and dif-
Epilogue: 15 Years Later
‘Hello, Mary, this is Dr. Alex Foster from the NICU. Do you remember me?’, Alex asked somewhat tentatively. ‘Of course, I do. How could I ever forget the person who helped us navigate through the hardest days of our lives? What can I do for you?’, said Mary. ‘How is Caroline?’, Alex ventured. ‘She is great. She has some weakness on her left side and has to walk with a stick, so she can’t play sports. Also, she has some help in class but manages to get reasonable grades. Her life is difficult, but don’t tell her that! In her eyes, she is happy and contented with who she is. We’re the ones who are always concerned about her quality of life. Actually, I read on the Internet that the medical staff and the parents tend to rate the child’s quality of life worse than the children themselves and even more so as they grow up’ [13, 14]. Mary was pensive for a moment before going on. ‘When Caroline was 2 days old and had her bleed in her brain, you gave us all the options and told us that predicting her future was a risky business. For years, I felt guilty about the decisions we made and I have never told Caro-
line what happened … perhaps for the best. I guess we all came to terms with our reality over time – even Tom. Thanks again, Alex.’
Summary and Discussion
This short tale highlights just some of the challenges that continue to face the ethical neonatologist. The ethical, social, religious, and legal framework surrounding the care of infants born close to the limits of viability is immensely complex. Much of the discussion is based to a large extent on our ability to predict the future with a fair degree of certainty. Recent evidence suggests that predicting a single infant’s future based on population statistics is a risky business and, accordingly, the ethical neonatologist must employ a generous dose of humility when using a crystal ball.
Disclosure Statement The author has no conflict of interest to disclose.
References
320
5 Bassan H, Limperopoulos C, Visconti K, Mayer DL, Feldman HA, Avery L, et al: Neurodevelopmental outcome in survivors of periventricular hemorrhagic infarction. Pediatrics 2007;120:785–792. 6 Leversen KT, Sommerfelt K, Ronnestad A, Kaaresen PI, Farstad T, Skranes J, et al: Prediction of neurodevelopmental and sensory outcome at 5 years in Norwegian children born extremely preterm. Pediatrics 2011; 127:e630–e638. 7 Eventov-Friedman S, Kanevsky H, Bar-Oz B: Neonatal end-of-life care: a single-center experience in Israel over a decade. Pediatrics 2013;131:e1889. 8 Cuttini M, Nadai M, Kaminski M, Hansen G, de Leeuw R, Lenoir S, Persson J, Rebagliato M, Reid M, de Vonderweid U, Lenard HG, Orzalesi M, Saracci R: End-of-life decisions in neonatal intensive care: physicians self-reported practices in seven European countries. EURONIC Study Group. Lancet 2000;355:2112– 2118. 9 Shinwell ES, Shinwell AR: Reorientation of care in the NICU: a Jewish perspective. Semin Fetal Neonatal Med 2008;13:314–315.
Neonatology 2015;107:317–320 DOI: 10.1159/000381115
10 Gatrad AR, Muhammad BJ, Sheikh A: Reorientation of care in the NICU: a Muslim perspective. Semin Fetal Neonatal Med 2008; 13: 312–314. 11 Fanaroff JM, Hascoet JM, Hansen TWR, Levene M, Norman M, Papageorgiou A, Shinwell E, van de Bor M, Stevenson DK; International Perinatal Collegium (IPC): The ethics and practice of neonatal resuscitation at the limits of viability: an international perspective. Acta Paediatr 2014;103:701–708. 12 Brecht M, Wilkinson DJC: The outcome of treatment limitation discussions in newborns with brain injury. Arch Dis Child Fetal Neonatal Ed 2015;100:F155–F160. 13 Dinesen SJ, Greisen G: Quality of life in young adults with very low birth weight. Arch Dis Child Fetal Neonatal Ed 2001;85:F165–F169. 14 Saigal S, Stoskopf BL, Feeny D, Furlong W, Burrows E, Rosenbaum PL, Hoult L: Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA 1999;281:1991–1997.
Shinwell
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1 Mann PC, Woodrum DE, Wilfond BS: Fuzzy images: ethical implications of using routine neuroimaging in premature neonates to predict neurologic outcomes. J Pediatr 2013;163: 587–592. 2 Costeloe KL, Hennessy EM, Haider S, Stacey F, Marlow N, Draper ES: Short-term outcomes after extreme preterm birth in England: comparison of two birth cohorts in 1995 and 2006 (the EPICure studies). BMJ 2012;345:e7976. 3 Moore T, Hennessy EM, Myles J, Johnson SJ, Draper ES, Costeloe KL, Marlow N: Neurological and developmental outcome in extremely preterm children born in England in 1995 and 2006: the EPICure studies. BMJ 2012;345:e7961. 4 Roze E, Van Braekel KN, van der Veere CN, Maathius CG, Martijn A, Bos AF: Functional outcome at school age of preterm infants with periventricular hemorrhagic infarction. Pediatrics 2009;123:1493–1500.
Published online: June 5, 2015
Ethics of Birth at the Limits of Viability: The Risky Business of Prediction Eric S. Shinwell Department of Neonatology, Ziv Medical Center, Bar-Ilan University, Tsfat, Israel
Abstract Infants born at the limits of viability present neonatologists in particular and society in general with difficult challenges. Ethical and legal considerations establish a framework for action, although this varies between countries, departments and individuals and shows dynamic changes over time. This brief review includes a vignette telling a familiar story. In this case, the parents ask searching questions and the caring, knowledgeable neonatologist uses up-to-date information to offer empathic and thoughtful guidance – a challenge for all. © 2015 S. Karger AG, Basel
Introduction
The management of pregnancy at the limits of viability, currently accepted to be 22–24 weeks of gestation, is fraught with difficulties. Ethical challenges arise in neonatology consultations both before birth and at critical junctures in the infant’s postnatal course. Determination of the best course of action demands constructive dialogue, containing accurate, up-to-date information together with appropriate respect for the needs, desires and © 2015 S. Karger AG, Basel 1661–7800/15/1074–0317$39.50/0 E-Mail [email protected] www.karger.com/neo
rights of the parents, who are hopefully acting in the best interests of the child. Decision making is mostly based on predictions of estimated prognosis for mortality and long-term outcome, particularly neurodevelopmental. However, prognostication is a decidedly inexact science that leaves room for the imposition of the moral and ethical value sets of both the physician and the family before a decision may be reached [1]. In particular, the conflicting imperatives of the sanctity of life and future quality of life are the ‘elephant in the room’ with which we struggle. Ethical principles guide physicians meeting this challenge. Beneficence, the aim to benefit the sick, is partnered with nonmaleficence, the desire to do no harm. Recognition of the autonomy of the patient or parent is a lofty principle that physicians aim to follow despite difficulties. Finally, justice requires that all similar cases be treated in an equitable way. The combination of these principles represents the model of the ethical neonatologist. The following narrative provides a basis for the discussion of some of these difficulties, combining clinical and ethical perspectives.
A Vignette
Mary and Tom were frantic with worry. Mary’s labor pains had begun a few hours earlier and now they were holding hands in the delivery room waiting for someone Prof. Eric S. Shinwell Department of Neonatology, Ziv Medical Center, Bar-Ilan University Rambam Street IL–13100 Tsfat (Israel) E-Mail eric.s @ ziv.health.gov.il
Downloaded by: University of Pennsylvania 198.143.38.1 - 7/15/2015 11:18:38 PM
Key Words Limits of viability · Ethics · Prediction · Neurodevelopmental outcome
318
Neonatology 2015;107:317–320 DOI: 10.1159/000381115
Mary was astonished and quickly made it clear that she thought differently. ‘If our daughter has a chance of surviving, we need to do everything we can, I mean with the docs and nurses and so on. And, if she turns out to have problems then we’ll just have to learn to cope.’ Alex realized that she had to clarify things. ‘I think I ought to explain that by law it is possible to go down either of the routes you suggested, but I really need the three of us to come to an agreement so that I know what to do when she is born. I’m going to leave you now and we’ll talk again in a little while.’ Baby Caroline was born in a poor condition a few hours later and was treated actively in the delivery room and transferred to the NICU in accordance with the guidelines agreed on by the parents and Alex. The first 2 days were stormy, with Caroline needing a lot of help, including ventilation and oxygen, dopamine and antibiotics. On day 3, Alex went to update the parents on the latest piece of bad news. So far, each conversation seemed worse than the previous and this time she found Mary and Tom huddled in the corner of the parents’ room looking even more distraught than before. ‘How are you guys doing?’, Alex ventured hopefully. ‘Coping?’ ‘Not really’, said Mary, tearfully. ‘How is she doing today?’ Alex took a deep breath and launched into a long explanation of the state of each of Caroline’s body systems. Her lungs were underdeveloped and she needed some help from the ventilator, while her blood pressure also still needed support with medication. She left the bad news to last as she garnered enough courage to tell these poor parents. ‘I’m afraid Caroline’s ultrasound this morning was really not good. She has some bleeding in her brain.’ Tom interrupted, ‘Oh no! I’ve been reading about that on the net. What grade is it? Just don’t say 4.’ ‘I’m sorry but it is grade 4 on the right but on the left there is only a tiny grade 1 bleed.’ Alex quickly hurried on. ‘This degree of bleeding might threaten her life over the next few days. But, if she does survive, she may well have brain damage that will cause her problems in the future. As I mentioned before the birth, this could include motor problems such as cerebral palsy or being retarded mentally. She could also have problems with her vision and hearing, but this is less likely.’ ‘How much of a risk?’, Mary asked, in shock. ‘It’s a bit early to predict because we need to see how the bleed progresses. Also, there are many studies looking at the long-term outcome of very premature babies who Shinwell
Downloaded by: University of Pennsylvania 198.143.38.1 - 7/15/2015 11:18:38 PM
to explain things. This was her first pregnancy and they knew that contractions at 23 weeks could be dangerous – the anxious faces of the staff were not reassuring. Meanwhile, at the nursing station, Alex, the attending neonatologist, was not looking forward to her next consultation. Discussions with families in crisis were often challenging and impending deliveries at 23 weeks often raised a range of unsettling questions in her mind. What would she do if ever she were faced with such a situation? Not to mention that there was quite a range of opinions among the NICU staff. Gathering her inner strength, she headed to the room and a conversation that would define her next few days and perhaps the fate of two young parents and an unborn child. ‘Hi, I’m Dr. Foster from the Neonatal Unit’, Alex said as she closed the door. ‘I want to bring you up to date with what’s going on.’ Tom answered irritably, ‘About time too.’ Mary glared pointedly at her husband. She had enough to worry about at the moment without Tom’s moods. ‘The OB docs tell me that your contractions are serious and your cervix is 3 cm dilated. They have started you on a drug to try and slow the contractions. The injection you had was to speed up the development of the baby’s lungs, in case you do go on to deliver the baby soon’, Alex explained gently. Mary asked about the baby’s chances if she were to deliver today. She had read on the Internet that even the tiniest premature babies could be saved today and she certainly did not intend to give up on her baby daughter after all the cycles of IVF that she had gone through just to get pregnant. ‘Well’, Alex began, ‘our national statistics suggest only about a 20–30% chance of survival if the baby is born alive – some don’t survive the delivery [2]. And then, you need to take into account all the complications that can happen in each body system – lungs, heart, gut, kidneys, brain and others.’ ‘Yes, I read that they can have brain damage’, Mary said, with a slight tremble in her voice. ‘You are right. Up to about half of the babies born at 23 weeks who survive will have some sort of developmental problem, such as cerebral palsy, mental retardation or problems with seeing or hearing’ [3], Alex continued. Tom interrupted, ‘So, you are saying that we only have about a 10% chance at best of having a normal child. With odds like that and our luck, our lives are really going to be messed up! Do you have to do absolutely everything when the baby’s born or can you not just let nature take its course?’
ferent hospitals and even within a particular hospital over time [7, 8]. She also pointed out that there were many factors influencing these decisions other than just the medical facts. These included the variations in laws in different countries, social and economic factors and, of course, religious positions [9, 10]. She told them of a recent report from a group of prominent experts from around the world who, when faced with a number of situations like this in tiny babies, could not come to any agreement on what was the best or most ethical way to deal with the dilemmas that arose [11]. She slowly and compassionately went through the options open to Mary and Tom. They could continue all treatment but withhold emergency treatment such as resuscitation or simply not add any new treatments or investigations. This would probably lead to Caroline dying of some metabolic imbalance or other, but this was not guaranteed. They could continue general care and just withdraw life-saving drugs. In this country, but not everywhere, the law allows the NICU staff to take a baby off the ventilator and even give some sedation in order to prevent suffering, even knowing that this might speed up the death. In some countries, it is possible to administer drugs with the clear purpose of ending life, but that is really active euthanasia and not considered acceptable here. After explaining that all of these options aimed to prevent a future dominated by a very poor quality of life, Alex added that this lofty purpose provided the moral justification for knowingly abstaining from prolonging the baby’s life by the use of modern intensive care. As she went on, Alex realized that she needed to balance their options and emphasize that she could not be sure of baby Caroline’s future. Even though the bleed in her brain was large on the right, her general condition was not too bad and she now needed only gentle respiratory support. If they decided to withhold or withdraw care, there was no absolute guarantee that Caroline would die and she may even survive with more brain injury. Alex told them of a recent study from Australia that looked at what happened after discussions like this about limitation of treatment. Some of the children who survived, particularly those with a unilateral brain bleed, were either normal or mildly impaired later in life [12]. Mary and Tom asked for some time to think and finally decided that they did not want baby Caroline to suffer any more but would not take her off the ventilator. Treatment was limited, but it soon became clear that Caroline was a real little fighter and began to grow and move away from the danger zone. Her parents slowly grew attached to her and came to terms with their new future as parents.
Ethics of Birth at the Limits of Viability: Prediction
Neonatology 2015;107:317–320 DOI: 10.1159/000381115
319
Downloaded by: University of Pennsylvania 198.143.38.1 - 7/15/2015 11:18:38 PM
have brain bleeds and the results vary quite a bit. That said, Caroline probably has about a 50–70% risk of having either cerebral palsy or retardation or both’ [1, 2]. ‘What does that actually mean for us?’, Tom panicked. ‘We really don’t want a child who’s going to be a vegetable!’ Alex thought for a moment and decided that she needed to provide some solid data to help the parents to move forward. ‘A child with cerebral palsy will often have slow motor development which can mean trouble walking and with the use of her hands and will need help with physiotherapy, occupational therapy and so on. The extent of the limitations that Caroline might have varies a lot between the studies [4, 5]. For example, although about 70% may have cerebral palsy, after they learn to adapt to their disability, only about a third have a motor problem that affects day-to-day functions like walking and manual dexterity [5]. Also, more than 60% have an IQ in the normal range, if you take their prematurity into account [6]. If you feel it would help, I can provide you with some reading material on all of this.’ ‘So, for the moment you’re still doing everything you can to save her, right?’, Mary asked. ‘Or have you already given up on her?’ Tom added, ‘Anyway, who decides? Don’t we have a say in this? After all, we’re the ones who would have to bring up a retarded, paralyzed child if you just go ahead and keep doing all these heroics to keep her alive! I want you to stop all this and let us get on with our lives. Surely, it’s our right to decide?’ Although Mary had her doubts, she was beginning to come round to Tom’s way of thinking. Admittedly, letting baby Caroline go would be very difficult and terribly sad and would put her straight back in the IVF clinic, but maybe that was for the best? Mary did not realize that she was actually talking through her haze of distress. ‘And what would Caroline wish for?’, Alex added almost in a whisper. ‘What would be in her best interest?’ Mary and Tom, together for the first time, exclaimed. ‘She wouldn’t want to live a life of horrible suffering!’ Mary went on, ‘I know I was all in favor of doing everything when she was born and even talked Tom into this, but now things are different. I, actually we, want to know what our options are. Can we decide on what we want you do? Can you take her off the ventilator, and then what would happen?’ Tears were streaming down Mary’s face while Tom looked choked up – Mary was speaking for both of them. Alex knew that this was the most delicate part of the whole discussion. She carefully explained that approaches varied markedly between different countries and dif-
Epilogue: 15 Years Later
‘Hello, Mary, this is Dr. Alex Foster from the NICU. Do you remember me?’, Alex asked somewhat tentatively. ‘Of course, I do. How could I ever forget the person who helped us navigate through the hardest days of our lives? What can I do for you?’, said Mary. ‘How is Caroline?’, Alex ventured. ‘She is great. She has some weakness on her left side and has to walk with a stick, so she can’t play sports. Also, she has some help in class but manages to get reasonable grades. Her life is difficult, but don’t tell her that! In her eyes, she is happy and contented with who she is. We’re the ones who are always concerned about her quality of life. Actually, I read on the Internet that the medical staff and the parents tend to rate the child’s quality of life worse than the children themselves and even more so as they grow up’ [13, 14]. Mary was pensive for a moment before going on. ‘When Caroline was 2 days old and had her bleed in her brain, you gave us all the options and told us that predicting her future was a risky business. For years, I felt guilty about the decisions we made and I have never told Caro-
line what happened … perhaps for the best. I guess we all came to terms with our reality over time – even Tom. Thanks again, Alex.’
Summary and Discussion
This short tale highlights just some of the challenges that continue to face the ethical neonatologist. The ethical, social, religious, and legal framework surrounding the care of infants born close to the limits of viability is immensely complex. Much of the discussion is based to a large extent on our ability to predict the future with a fair degree of certainty. Recent evidence suggests that predicting a single infant’s future based on population statistics is a risky business and, accordingly, the ethical neonatologist must employ a generous dose of humility when using a crystal ball.
Disclosure Statement The author has no conflict of interest to disclose.
References
320
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