Children, Ethics, and Modern Medicine

Children, Ethics, and Modern Medicine

by Richard B. Miller
Children, Ethics, and Modern Medicine

Children, Ethics, and Modern Medicine

by Richard B. Miller

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Overview

Argues that doctors must become part of a "therapeutic alliance" with families of children undergoing medical care to arrive at the best course of treatment. The book will be an invaluable resource for medical ethicists and practitioners in pediatric care, as well as forparents struggling with ethical issues in the care and treatment of their children.


About the Author:
Richard B. Miller is Professor in the Department of Religious Studies at Indiana University, where he serves as departmental chair. He is the author of Interpretations of Conflict: Ethics, Pacifism, and the Just-War Tradition (1991) and Casuistry and Modern Ethics: A Poetics of Practical Reasoning (1996). He has edited War in the Twentieth Century: Sources in Theological Ethics (1993) and has written articles in social philosophy and religious ethics. He has recently completed a fellowship year in professional ethics at Harvard University.


Product Details

ISBN-13: 9780253109927
Publisher: Indiana University Press
Publication date: 06/18/2003
Series: Medical Ethics
Sold by: Barnes & Noble
Format: eBook
Pages: 328
File size: 565 KB

About the Author

Richard B. Miller is Director of the Poynter Center for the Study of Ethics and American Institutions and Professor in the Department of Religious Studies at Indiana University, Bloomington. He is the author of Interpretations of Conflict: Ethics, Pacifism, and the Just-War Tradition (1991) and Casuistry and Modern Ethics: A Poetics of Practical Reasoning (1996). He has edited War in the Twentieth Century: Sources in Theological Ethics (1993) and has written articles in social philosophy and religious ethics.

Read an Excerpt

Children, Ethics, and Modern Medicine


By Richard B. Miller

Indiana University Press

Copyright © 2003 Richard B. Miller
All rights reserved.
ISBN: 978-0-253-34222-5



CHAPTER 1

Parental Responsibility in Fear and Trembling


MORAL POETICS AND THE HEALER'S ART

When Adrienne St. Jacques left her home in Lucian Heights one clear, cold January morning, the easier part of her day was over. She had dressed and fed two of her children and sent them off to school. Her husband, Michael, was out the door and heading for work, not to return until after dinner. Adriennes thoughts about a job for herself would have to be put aside, at least for the time being. She would inquire about the listing for a nurse's aide later in the month. For now, it was time to go to see her infant son, Jean, a patient in the intensive care unit (ICU) at Baylin Pediatric Medical Center. She checked her purse for her small Bible, found a subway token, and headed downtown.

Jean lay atop a small metal stand, tiny, frail, and asleep, surrounded by a coterie of nurses, respiratory therapists, residents, fellows, and an attending physician, all of whom were monitoring his medications, feedings, metabolism, blood flow, and ventilation. When he was born in September, Jean was two months premature and weighed less than two pounds. After staying for eight weeks in a neonatal ICU, Jean went home for twenty-eight days before his pulmonary system was attacked by a virus, sending him to Baylin's ICU in January with respiratory problems. He was soon placed on extracorporeal membrane oxygenation (ECMO) that extracted his blood and sent it through an oxygenating filter before returning it to his body. For more than two weeks, Jean was unconscious, heavily sedated, and connected to ECMO, an IV, and numerous monitors. His first X-rays showed diminished lung fields, a condition that slowly (and unexpectedly) improved. After eighteen days, Jeans hose-size tubes became infected with fungus, and he developed a clot in his inferior vena cava. Worried that the ECMO was allowing the fungus to grow, house staff switched Jean to a high-rate oscillating ventilator to keep his weak lungs open. He quickly began to show signs of improvement. Within a week, he was placed on a conventional ventilator, his feedings were increased, and he was briefly taken off antibiotics.

"I come here every day," Adrienne says slowly and methodically in her thick French-Haitian accent. "You cannot not come. Definitely you have to come. But you don't know who you are anymore. You cannot say anything. You lose your faith. You are not conscious. I just come and face the situation. I open the Bible to whatever passage is there. It gives me hope and I can see Jean is getting better. I want God to give me my son back. To listen to me, to answer me. The doctors and nurses are doing a very great job. Jean is in their hands. I ask them to give me my son back. My hope for Jean, I would like to have him back. Back home sleeping with him, feeding him, playing with him. I want him back the same way as before."

Throughout his stay in the ICU, Jeans condition remained precarious. His nutritional situation left his bones so brittle that his hip and shoulder were fractured on separate occasions during routine examinations. Moreover, house staff feared that removing ventilation support would require him to burn up much-needed calories in his attempt to breathe, thereby diminishing his low body weight. Adrienne and Michael were routinely confronted with bad news: Jean did not do well on ECMO; his bowel appeared to be necrotizing at one juncture; his blood oxygen levels dropped during the early stages of conventional ventilation; he spiked a temperature immediately after coming off antibiotics, suggesting an underlying immune deficiency, a nagging infection, or both; and, it was (wrongly) suspected, he contracted renal tubular acidosis, a condition in which the kidneys are unable to excrete the normal amount of the body's acid, leading to an excess level of acid in the bloodstream. It would be months and perhaps years before anyone would know whether or how much Jean had been neurologically compromised by his ECMO treatment.

Adrienne was not a blind optimist about her son's circumstances or about those working on his behalf. Early in Jean's admission, house staff implicated her in his situation. "In the first week, they asked me to take the HIV test. That made me very, very angry. I was insulted. I have never been with any man but my husband. You know, no other man. We meet in Haiti. I had to tell him, they ask me the test. They think Jean maybe has HIV from me. So I sleep on it and say okay. The test, it turn up negative. I say to you, you are never ready. You cannot prepare yourself for this. I had two other children premature. One left the hospital at four pounds, the other five pounds. Before, I thought I was a mother. But I did not become a mother until I had Jean. I was not a mother until now.

"In my country," she added, "it is bad luck if you have a dream about marriage when a family member is sick. When Jean came here [to Baylin], I had a dream of getting married, and the man goes to another church. I grabbed him and go to that other church, too. [After the dream:] Then, the next day, I know I'm going to lose my baby. I put everything away. I called the Salvation Army to give away my crib. Then I talk to the priest. He say God is going to give Jean back, that my dream means something different [here] than in my country. He say that God is creator. He [God] build his home for him [Jean]. Now I have more hope. Jean has been different since then."

Adrienne's remarks emphasize the importance of diagnosing and coordinating a child's care within the interstices of parental anguish, cultural and ethnic heritage, and religious tradition. Health care providers must not only treat a patient's disease, but also attend to personal and social context as these bear on the patient's medical condition. In this respect, pediatric contexts can be demanding, for they require health care providers to work with children and with those who are responsible for making medical decisions in their child's basic interests.

That is to say, proper medical care of children is guided not only by moral norms and the skill to connect them to experience. Equally important, medicine requires the healer's art, the ability to understand how illness assaults a patient's and family's identity, affecting their rhythms, hopes, self-understandings, and interpersonal relationships. For pediatric care providers, the healer's art includes skills of discerning how well a patient is coping with the challenge of illness, and how family members are shouldering the weight of decision-making responsibilities regarding their child's wellbeing. Those decisions often take place in the context of disappointment, self-blame, cultural and ethnic pluralism, and indeterminacy about future outcomes.

The healer's art, among other things, is a diagnostic talent, an excellence of discernment and discriminating judgment. It is a metavirtue, a "virtue of virtues," on which sound professional practice relies. The art of caring for others is a nonformalized skill, not easily distilled into principles or recipes for action. Accordingly, it is shaped less by well-wrought procedures than by symbols and images that illumine how health care providers ought to care for patients and families as persons. Images and symbols inform professionals' perceptions of clients and contexts; they enable practitioners to interpret a patient's overall condition, thereby assisting in diagnosis and treatment.

I want to devote this chapter to thinking in symbolic and imagistic terms, recognizing that such an approach stands somewhat apart from the more straightforward philosophical arguments that will follow in this book. I will do that out of the conviction that medical ethics must aim not only to provide guidelines for policy and action, but also to articulate the healer's art. That is to say, there are matters of seeing moral reality in a certain way that are important for ethical action and reflection. Medical ethics thus requires a moral poetics — the art of configuring experience so as to highlight its morally relevant features, existential challenges, cultural variables, and, when relevant, its religious dimensions. The healers art is informed by the ethicist s moral art and the need to inform the imagination.

The symbols and images to which I will turn come from a religious tale, the story of Abraham and Isaac, aspects of which I want to discuss here with an eye to the moral poetics of pediatric care. Widely known outside the Jewish and Christian communities in which it is regularly narrated, this controversial story seems wildly irrelevant to issues that are associated with medical care in general and pediatric medicine in particular. I will address those reservations in passing as we proceed in this chapter. For now, I want to focus on a feature of that narrative that provides an important backdrop for imagining the ordeals that parents such as Adrienne often face when confronted by their child's infirmity. Indeed, these challenges are so important and profound that they invite religious interpretation. Norms and paradigms for pediatric medical ethics I subsequently develop in this book are framed by the poetics of parental responsibility that is exercised in fear and trembling.

As told in Genesis 22, the story of Abraham and Isaac is as follows:

God tested Abraham. He said to him, "Abraham!" And he said, "Here I am." He said, "Take your son, your only son Isaac, whom you love, and go to the land of Moriah, and offer him there as a burnt offering on one of the mountains that I shall show you." So Abraham rose early in the morning, saddled his donkey, and took two of his young men with him, and his son Isaac; he cut the wood for the burnt offering, and set out and went to the place in the distance that God had shown him. On the third day Abraham looked up and saw the place far away. Then Abraham said to his young men, "Stay here with the donkey; the boy and I will go over there; we will worship, and then we will come back to you." Abraham took the wood of the burnt offering and laid it on his son Isaac, and he himself carried the fire and the knife. So the two of them walked on together. Isaac said to his father Abraham, "Father!" And he said, "Here I am, my son." He said, "The fire and the wood are here, but where is the lamb for a burnt offering?" Abraham said, "God himself will provide the lamb for a burnt offering, my son." So the two of them walked on together. When they came to the place that God had shown him, Abraham built an altar there and laid the wood in order. He bound his son Isaac, and laid him on the altar, on top of the wood. Then Abraham reached out his hand and took the knife to kill his son. But the angel of the lord called to him from heaven, and said, "Abraham, Abraham!" And he said, "Here I am." He said, "Do not lay your hand on the boy or do anything to him; for now I know that you fear God, since you have not withheld your son, your only son, from me." And Abraham looked up and saw a ram, caught in a thicket by its horns. Abraham went and took the ram and offered it up as a burnt offering instead of his son. So Abraham called that place "The lordwill provide"; as it is said to this day, "On the mount of the lord it shall be provided." (Gen. 22:1-14, NRSV).


The story of Abraham and Isaac is not instructive to the healers art because pediatricians routinely encounter families who believe that God has commanded them to sacrifice their children. There is no parallel between parents who believe they have been divinely authorized to kill their child and parents who respond with care to their child's infirmity. Nor do I want to valorize an image of divine and human relations as patriarchal, hierarchical, and arbitrary; endorse a divine command morality that is morally offensive; or impute such beliefs to parents such as Adrienne. As Soren Kierkegaard reminds us in his classic midrash of this tale, Fear and Trembling the trial of Abraham should not be interpreted literally. Exactly how it ought to be interpreted to illumine situations such as Adrienne's involves several steps and disclaimers.

In Kierkegaard's mind, the story of Abraham and Isaac is a story about the trials of faith and commitment — about trusting powers and purposes that lie beyond human understanding. In large part, the story is about how God tests Abraham's faith. In addition, it raises issues of adult responsibility and care: What are Abraham's obligations toward Isaac? How is he properly to care for him as his father? How can he exercise the virtues and duties entrusted to him as Isaac's parent? To whom does Isaac finally belong, and where does Abraham fit in Isaac's life?

In response to God's command, Abraham acts "on the strength of the absurd," without calculating benefits and burdens to himself or to Isaac, and without doubting that God would not take Isaac from him. For Kierkegaard, Abraham represents the rare "knight of faith," a person who courageously hurls himself trustingly into a void of unknown and unconditional commitment, thereby expressing an "absolute commitment to the absolute." Abraham expresses a double movement: He is willing to give up Isaac in obedience to God, but he remains confident that he will not lose Isaac as his son. Kierkegaard contrasts Abraham's faith with that of other individuals, whom he calls "knights of infinite resignation" — persons who are willing to give up worldly inclinations and attachments, but who cannot believe that all things are possible, that our expectations are constrained by our own finitude, that it is possible to get Isaac back.

Kierkegaard emphasizes Abraham's capacity for acting on unconditional terms, focusing on the religious psychology of commitment and trust. If taken literally, Fear and Trembling seems to encourage belief in miraculous intervention and supernaturalism (which is neither Kierkegaard's intention nor Adrienne's expectation). Later in this book, I will indicate why such a belief can run contrary to basic features of pediatric medical ethics and how it can lead to unwarranted decisions. Using Kierkegaards language, we might say that sometimes it is necessary for pediatric care providers to enable knights of faith to become (only) knights of infinite resignation about their child's prospects. That fact points to other features of Abrahams (and Adrienne's) trial that I want to highlight here. Rather than enjoining trust in divine intervention or asking us to consider the ethics of child sacrifice, the story of Abraham and Isaac points to the tasks of parenthood and the existential gravity of making decisions, sometimes about life and death, on childrens behalf.

To see this point, it is important to focus not on miraculous possibilities but on the fact that relinquishing ones child to another's powers, or recognizing that the child is beyond the reach of curative powers, enters parents and families into a void of indeterminacy and potential culpability in wrongdoing. At the very least, Abraham learns that his authority over Isaac is limited; Isaac's life is not for Abraham to dispose of as he wishes, for he would never have chosen to sacrifice him. But the limits on Abraham's authority are marked by his confrontation with an incomprehensible and hostile power. A medical midrash of Abraham and Isaac must attend to the fact that his parental responsibilities must confront powers of destruction that seem so arbitrary and absurd as to shatter any sense that the universe is benignly ordered. Both Abraham and Adrienne are forced to reckon with the basic question of theodicy: Is a world that allows the suffering of innocent children truly just? How is a parent to act in a universe that seems uncaring — indeed, malevolent? Abraham's duties to Isaac, like Adrienne's to Jean, are suddenly overpowered by contingencies whose magnitude is immeasurable. Except for the most routine pediatric examinations, any discussion of moral norms and practical reasoning in pediatric medicine must be framed by Abraham's challenge. When a child's welfare is seriously at risk, responsible parents such as Adrienne face decisions of Abrahamic proportions. And in the direst of situations, they must reckon with the unfathomable horror of losing a child.

I realize that parental decision making about pediatric care often involves much more than acting or omitting action in life-and-death situations. Less dramatic, more quotidian examples than Abraham's or Adrienne's abound, especially in the context of primary care medicine. Decisions of Abrahamic proportions might describe the tragedies or triumphs of tertiary care medicine, but they obscure the more frequent though less controversial interactions between care providers and families in settings of lower intensity.


(Continues...)

Excerpted from Children, Ethics, and Modern Medicine by Richard B. Miller. Copyright © 2003 Richard B. Miller. Excerpted by permission of Indiana University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Introduction

Part I. Moral Contours

1. Parental Responsibility in Fear and Trembling

2. The Duty to Care

3. Pediatric Paternalism

4. Representing Patients

5. Basic InterestsPart II. Practical Cases

6. A Fighter, Doing God's Will: Technologically Tethered, RetainingFluids, on Steroids, Sedated, and Four Years Old

7. Respecting Jackson Bales's Religious Refusal: On What Grounds?

8. Ericka's Sepsis, Lia's Convulsions, and Cultural Differences

9. (Properly) Marginalized Altruism: Screening Kidney Donations fromStrangers

10. The Politics and Ethics of a Hospital Ethics Committee

11. Ethical Issues in Pediatric ResearchConclusion: On Liberal Care

Notes

Index

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