City University of New York (CUNY) CUNY Academic Works Publications and Research CUNY Graduate Center 1986 Caring Choices: Decision-making about Treatment for Catastrophically Ill Newborns Betty Wolder Levin CUNY Graduate Center, School of Public Health, and Brooklyn College How does access to this work benefit ou?y Let us know! More information about this work at: https://academicworks.cuny.edu/gc_pubs/161 Discover additional works at: https://academicworks.cuny.edu This work is made publicly available by the City University of New York (CUNY). Contact: [email protected] CARING CHOICES: DECISION MAKING ABOUT TREATMENT POR CATASTROPHICALLY ILL NEWBORNS Betty Wolder Levin Submitted in partial'fulfillment of the requirements for the degree of Doctor of Philosophy under the Executive Committee of the Graduate School of Arts and Sciences COLUMBIA UNIVERSITY 1986 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. © 1986 BETTY WOLDER LEVIN ALL RIGHTS RESERVED Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. ABSTRACT CARING CHOICES: DECISION MAKING FOR CATASTROPHICALLY ILL NEWBORNS BETTY WOLDER LEVIN Decision making for catastrophically ill newborns has recently emerged as a social issue. Advances in biomedical technology and practice, and changes in other economic, social and political factors have led to controversy about norms to guide treatment choice. While much has been written on how such decisions should be made, there has been little social science research on how such decisions are actually made. The purpose of this dissertation is to elucidate the way that clinicians think about treatment decisions for catastrophically ill newborns. The focus is on decision making with respect to the limitation of treatment in those situations in which clinicians feel that an infant is terminally ill and/or severely impaired. The aim is to place the issue in its broad social context, explicate how clinicians categorize information, examine how clinicians utilize these categories in making decisions, investigate the process of decision making in the context of social change, and elucidate some of the ethical and policy questions. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. A major finding of this research is that treatment of catastrophically ill newborns is heavily influenced fay the way that clinicians conceptualize the issues involved in treatment choice. Rather than a clear cut choice "to treat" or "not to treat," decision making is a complex process in which clinicians, and sometimes parents, make decisions about which treatments are appropriate to give at a particular point in time. Clinicians conceptualize this as a choice about "the aggressiveness" of treatment. A model is derived to explain clinician decision making. Clinicians are seen to categorize characteristics of patient condition along the dimensions of quality of life, uncertainty, critical condition and social value; treatments are categorized according to aggressiveness, ordinary/extraordinary means, withholding and withdrawing treatment and passive/active euthanasia. Each of these dimensions is culturally determined. There is variation in clinician conceptualization of characteristics of patient condition and treatment, the goals of treatment, and the norms for decision making. The primary mode of research for this study was participant observation in a neonatal intensive care unit (NICU). Treatment choices in routine and problematic cases were observed and clinicians were interviewed to elicit information on factors relevant to the decision making process. In addition, clinicians from other NICUs were interviewed and meetings and conferences were attended. Documents in the clinical, legal, bioethical, social science, and popular literature were analyzed and a survey on treatment choice for catastrophically ill newborns was conducted. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. CARING CHOICES: DECISION MAKING ABOUT TREATMENT FOR CATASTROPHICALLY ILL NEWBORNS Table of Contents Abstract Table of Contents ....................................... 1 List of Tables .......................................... iv List of Figures ......................................... v Acknowledgements ........................................ vi Chapter I: Caring Choices: Introduction 1 Background to the Problem ............................... 2 Background to the Study ................................. 6 Statement of the Problem ................................ 8 Discussion of Terms ..................................... 9 Methodology and Description of the Site .................. 12 Significance ........................................... 24 Outline of Dissertation ................................. 25 Chapter II: Unplugging the Myth: Background to Withholding Treatment ...................... 28 Euthanasia: Cross Cultural and Historical Perspectives .... 29 Rise of the Technological Imperative: The Battle against Death ....................................... 33 The Crumbling of the Technological Imperative: Cultural Contradictions and Technological Choice ....... 36 Wider Social Concerns Impacting on the Use of Life Prolonging Technology ................................ 42 Decision Making about Withholding Treatment: Review of the Literature Concerning Adults ............. 54 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Chapter III: Treating Babies: Background to Care for Catastrophically 111 Newborns .............. 76 Cross Cultural Perspectives on Infanticide and Non­ treatment Decisions .......................... 77 Development of Medical Treatment Capabilities for Newborns ......................................... 81 Concerns about the Aggressiveness of Treatment For Newborns ......................................... 106 Chapter IV: Choice Thoughts: Cultural Categories and Decision Making ......................... 134 Eeview of the Medical Decision MakingLiterature ........... 135 A Decision Making Model ................................. 139 Decision Making about the Aggressiveness ofTreatment ...... 156 Summary................................................ 162 Chapter V : Examining Baby Data: Characteristics of Patient Condition ......................... 163 Quality of Life ......................................... 163 Uncertainty ............................................ 186 The Critical Condition .................................. 189 Social Value ........................................... 195 Summary ................................................. 212 Chapter VI: Extraordinary Care? Characteristics of Treatment ................................ 213 Aggressiveness .......................................... 214 Ordinary/Extraordinary Treatment ........................ 228 Withholding/Withdrawing Treatment ........................ 234 Passive and Active Euthanasia ............................ 241 Summary................................................. 248 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Chapter VII; Up to God or Mother Nature: Decision Making Goals, Norms, and Behavior ........... 249 Goals .................................................. 249 Norms for Decision Making ............................... 262 Translating from Cultural Categories to Behavior .......... 295 Summary................................................ 298 Chapter VIII: Rapidly Moving History: Change in Decision Making for Catastrophically 111 Newborns ............................. 299 Changes in the Treatment of Infants with Spina Bifida ..... 299 Treatment of Very Low Birthweight PrematureInfants ........ 307 The Baby Doe Regulations and Clinical Decision Making ..... 313 General Changes in Conceptualization and Treatment Behavior ............................................ 327 Summary................................................ 340 Chapter IX: To Treat or Not to Treat? That Is Not The Question: Conclusions ....................... 342 Summary of The Study .................................... 342 Major Conclusions of the Study .......................... 355 Issues for Future Research .............................. 358 Implications of the Study for Improving the Process of Decision Making and Devising Social Policy ............. 375 Bibliography ........................................... 390 Appendix Methodology ......................................... 430 Questionnaire Distributed in the Intensive Care Unit - Spring 1983 ......................................... 442 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. L IS T OF TABLES III - 1 INFANT SURVIVAL BY BIRTHWEIGHT GROUP............. 99 III - 2 TREATMENT OF CONGENITAL ANOMALIES AND SEVERE BIRTH DEFECTS IN NEWBORNS ............... 130 V - 1 IMPORTANCE OF SPECIFIC FACTORS FOR DECISION MAKING .............................. 168 V - 2 TREATMENT RESPONDENTS WOULD RECOMMEND ........... 173 VI - 1 TREATMENT RESPONDENTS WOULD RECOMMEND AND MEAN ORDINARY/EXTRAORDINARY SCORE .............. 220 VI - 2 COMPARISON OF RATINGS ON THE ORDINARY/ EXTRAORDINARY SCALE BY PATIENT CONDITION AND TREATMENT ................................ 232 VI - 3 RATINGS ON THE ORDINARY/EXTRAORDINARY SCALE BY RECOMMENDATIONS CONCERNING TREATMENTS FOR A BABY WITH DOWN'S SYNDROME