They Named Her "Miracle": Understanding and Responding to the Hope for Miracles in Pediatric Medicine
Led by Trevor Bibler, Ph.D., MTS, Baylor College of Medicine, Houston, TX and Alex Lion, DO, MPH, Indiana University School of Medicine, Pediatric Hematology-Oncology.
How should pediatric clinicians respond when the guardians of sick children hope that a divine miracle will heal their child? In pediatric medicine, hopes for a return to health, or even survival, are often intensified by the patient’s youth. Within many religious traditions, particularly Christianity, faith in the miraculous power of God is foundational. A guardian’s hope for the miraculous recovery of a child, however, can cause significant consternation for clinicians whose practice is more empirically grounded. The hope for a “miracle” often contains theological and moral subtleties that clinicians may unintentionally miss or purposefully ignore. Just what a guardian might mean by “miracle” varies. Failing to attend to the facets of such invocations can lead to conflict and psycho-spiritual harm that may mar the last days of a child’s life and leave guardians shattered. Balancing pediatrician’s obligation to minimize harm to the child while recognizing the guardians’ role in patient care makes miracle-language a persistent challenge in pediatric medicine. With this workshop, we offer practical advice that will assist pediatricians, pediatric clinicians, clinical ethicists, and spiritual care professionals in finding this balance.
To assist in this process of understanding and responding to those hope for a miracle, we propose a workshop with three related sections. In the first section, we offer a taxonomy of miracle-invocations that often occur in pediatric medicine. This taxonomy includes the following kinds of invocations: innocuous, shaken, strategic, and integrated. With an innocuous invocation, miracle-language is present, but is not meant to influence clinical care. The guardians may have a vague idea or tentative beliefs of what good care may be, but the hope for a miracle is not a reflection of long-standing theological beliefs; nor is the language an attempt at reconciling the child’s suffering with an established understanding of the world. Shaken invocators, on the other hand, are actively attempting to reconcile the illness of their child with their values, experiences, and conceptions of the Divine. Not all who use miracle-language, however, have been so shaken by their experiences. Strategic invocators often use religious language to leverage the course of care that they deem appropriate for their child.
Each kind of invocation will be described and a dramatic reading of representative dialogue will demonstrate the distinct variety of miracle-language in the pediatric context. Participants will also be given the opportunity to provide feedback and will be prompted to consider examples that do not fall into the taxonomy. In the second section of the workshop, we will analyze some of the most essential theological, ethical, and professional aspects of miracle-language in pediatric medicine. We will discuss the impulse to appeal to “best-interests” while also elucidating some short-comings of this appeal. Additionally, we will detail the theological complexity that can undergird each kind of invocation. In the most challenging instances, the hope for a miracle often places competing conceptions of good patient care and wellbeing against each other: on the one hand, the patient’s guardians may argue that the infant’s wellbeing (and their own spiritual desires) are best served by waiting for a miracle of some kind. The pediatric care team, on the other hand, may argue that waiting merely prolongs the infant’s inevitable death. An appeal to best-interests will only provide a broad analysis. What is needed, we argue, is attention to the specific kinds of interests involved. Several questions can prompt reflection and make manifest latent assumptions about wellbeing and religious belief. For example: what are the guardians’ specify psycho-social-spiritual interests? How are the patient’s physiological/bodily interests being served by continued interventions? What counts as “harm” in this context? What are the team’s professional interests and obligations? By answering these questions, important ethical, professional, and theological considerations will be illuminated. We will walk-through our analysis with an example from the taxonomy.
Once we ensure all have a shared understanding of common ethical theological issues that arise, with the third section we describe proper responses to miracle-invocations. To respond properly, we need to analyze the interests at stake. However, such an analysis will be of little value unless the clinician engages in, what we label, “empathetic imagining.” With empathetic imagining, the clinician intends to gain a better understanding of the guardians’ perspectives on good care and the importance of spiritual and religious beliefs and actions. We will describe the steps and limits of this process, emphasizing the importance of listening and open-reflection. Regarding specific responses, we suggest engaging in constructive dialogue to facilitate open reflection about important aspects of self-care and self-understanding. Often chaplains, family support counselors, and ethicists can assist in this process. Integrated invocators often respond positively to discussions of spiritual and existential issues; however, since they rely on their communities for support, bringing community authorities into the conversation can establish a trusting relationship. In this setting, mutual trust can begin building. Strategic invocators often respond with hostility to the presence of any team member discussing religious belief and practice. Traditional mediation techniques that include time-limited trials, active listening, naming the conflict, and cultivating an atmosphere of equality can show respect to guardians who often feel unheard. Dramatic readings of suggested responses will show the workshop participants how to implement the responses. We recognize that our suggested practices will not always put an end to conflict or lead to win-win resolutions. Therefore, we conclude this section with recommendations for institutional policies that might lead to a process-based, fairer resolution with conflict remains intractable.
One of the most challenging aspects of the conversation between medicine and religion relates to the question of engagement, to which the Conference theme attests. This workshop creates a space for constructive engagement that attempts to integrate professional commitments with serious consideration of expressions of religious faith. Our hope is that our analysis and suggested practices create the conditions for conversation without diminishing the importance of professional integrity or distorting spiritual wellbeing. A workshop is the best format for this project. A workshop will allow the presenters to provide insight into the nature and function of miracle-language in pediatric medicine, while also engaging the audience with dramatic readings, direct interaction, and a robust Q/A session. The presenters are all experienced clinical ethicists with doctorate degrees in religious studies. Additionally, one of us is a practicing pediatrician. Two of the presenters have published on the topic of miracle-language in adult medicine and all have published in the areas of pediatrics and medical ethics. Our topic, our methods, and our professional experience would lead to an informative and novel workshop, we believe.
How should pediatric clinicians respond when the guardians of sick children hope that a divine miracle will heal their child? In pediatric medicine, hopes for a return to health, or even survival, are often intensified by the patient’s youth. Within many religious traditions, particularly Christianity, faith in the miraculous power of God is foundational. A guardian’s hope for the miraculous recovery of a child, however, can cause significant consternation for clinicians whose practice is more empirically grounded. The hope for a “miracle” often contains theological and moral subtleties that clinicians may unintentionally miss or purposefully ignore. Just what a guardian might mean by “miracle” varies. Failing to attend to the facets of such invocations can lead to conflict and psycho-spiritual harm that may mar the last days of a child’s life and leave guardians shattered. Balancing pediatrician’s obligation to minimize harm to the child while recognizing the guardians’ role in patient care makes miracle-language a persistent challenge in pediatric medicine. With this workshop, we offer practical advice that will assist pediatricians, pediatric clinicians, clinical ethicists, and spiritual care professionals in finding this balance.
To assist in this process of understanding and responding to those hope for a miracle, we propose a workshop with three related sections. In the first section, we offer a taxonomy of miracle-invocations that often occur in pediatric medicine. This taxonomy includes the following kinds of invocations: innocuous, shaken, strategic, and integrated. With an innocuous invocation, miracle-language is present, but is not meant to influence clinical care. The guardians may have a vague idea or tentative beliefs of what good care may be, but the hope for a miracle is not a reflection of long-standing theological beliefs; nor is the language an attempt at reconciling the child’s suffering with an established understanding of the world. Shaken invocators, on the other hand, are actively attempting to reconcile the illness of their child with their values, experiences, and conceptions of the Divine. Not all who use miracle-language, however, have been so shaken by their experiences. Strategic invocators often use religious language to leverage the course of care that they deem appropriate for their child.
Each kind of invocation will be described and a dramatic reading of representative dialogue will demonstrate the distinct variety of miracle-language in the pediatric context. Participants will also be given the opportunity to provide feedback and will be prompted to consider examples that do not fall into the taxonomy. In the second section of the workshop, we will analyze some of the most essential theological, ethical, and professional aspects of miracle-language in pediatric medicine. We will discuss the impulse to appeal to “best-interests” while also elucidating some short-comings of this appeal. Additionally, we will detail the theological complexity that can undergird each kind of invocation. In the most challenging instances, the hope for a miracle often places competing conceptions of good patient care and wellbeing against each other: on the one hand, the patient’s guardians may argue that the infant’s wellbeing (and their own spiritual desires) are best served by waiting for a miracle of some kind. The pediatric care team, on the other hand, may argue that waiting merely prolongs the infant’s inevitable death. An appeal to best-interests will only provide a broad analysis. What is needed, we argue, is attention to the specific kinds of interests involved. Several questions can prompt reflection and make manifest latent assumptions about wellbeing and religious belief. For example: what are the guardians’ specify psycho-social-spiritual interests? How are the patient’s physiological/bodily interests being served by continued interventions? What counts as “harm” in this context? What are the team’s professional interests and obligations? By answering these questions, important ethical, professional, and theological considerations will be illuminated. We will walk-through our analysis with an example from the taxonomy.
Once we ensure all have a shared understanding of common ethical theological issues that arise, with the third section we describe proper responses to miracle-invocations. To respond properly, we need to analyze the interests at stake. However, such an analysis will be of little value unless the clinician engages in, what we label, “empathetic imagining.” With empathetic imagining, the clinician intends to gain a better understanding of the guardians’ perspectives on good care and the importance of spiritual and religious beliefs and actions. We will describe the steps and limits of this process, emphasizing the importance of listening and open-reflection. Regarding specific responses, we suggest engaging in constructive dialogue to facilitate open reflection about important aspects of self-care and self-understanding. Often chaplains, family support counselors, and ethicists can assist in this process. Integrated invocators often respond positively to discussions of spiritual and existential issues; however, since they rely on their communities for support, bringing community authorities into the conversation can establish a trusting relationship. In this setting, mutual trust can begin building. Strategic invocators often respond with hostility to the presence of any team member discussing religious belief and practice. Traditional mediation techniques that include time-limited trials, active listening, naming the conflict, and cultivating an atmosphere of equality can show respect to guardians who often feel unheard. Dramatic readings of suggested responses will show the workshop participants how to implement the responses. We recognize that our suggested practices will not always put an end to conflict or lead to win-win resolutions. Therefore, we conclude this section with recommendations for institutional policies that might lead to a process-based, fairer resolution with conflict remains intractable.
One of the most challenging aspects of the conversation between medicine and religion relates to the question of engagement, to which the Conference theme attests. This workshop creates a space for constructive engagement that attempts to integrate professional commitments with serious consideration of expressions of religious faith. Our hope is that our analysis and suggested practices create the conditions for conversation without diminishing the importance of professional integrity or distorting spiritual wellbeing. A workshop is the best format for this project. A workshop will allow the presenters to provide insight into the nature and function of miracle-language in pediatric medicine, while also engaging the audience with dramatic readings, direct interaction, and a robust Q/A session. The presenters are all experienced clinical ethicists with doctorate degrees in religious studies. Additionally, one of us is a practicing pediatrician. Two of the presenters have published on the topic of miracle-language in adult medicine and all have published in the areas of pediatrics and medical ethics. Our topic, our methods, and our professional experience would lead to an informative and novel workshop, we believe.