Decision Making in the Face of Pediatric Incurable High Grade Gliomas: A Qualitative Ethical Analysis Open Access

Lanzel, Ashley (Spring 2018)

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Decision making for children and young adults with incurable high grade gliomas (HGGs), like diffuse intrinsic pontine glioma (DIPG) or glioblastoma multiforme (GBM), is difficult, complex, and ethically challenging. 

A longitudinal, qualitative study was completed from April 2017 to February 2018 to evaluate factors that play into decision making for children and young adults with HGGs, their families and clinicians.  Twenty four of 36 eligible patients were approached.  Seventeen enrolled and two withdrew for transfer of care and unavailable, consenting interpreter.  Key decision making visits (e.g. MRI reviews) and semi-structured interviews with parents and/or patients were serially audio-recorded.  Field notes from clinician meetings, chart notes, and oncologist questionnaires were obtained.  Discussions and interviews were transcribed, coded, and analyzed manually and with MAXQDA software until thematic saturation. 

An average of 5 encounters, or 2.5 hours, were recorded per patient. Parent and patient interview themes included 1) hope (for a cure, prolonged life, and quality of life), 2) importance of physician recommendations, 3) importance of support systems (family, community, social media), 4) food (as cancer etiology, intervention) 5) finances (personal, research funding), 6) communication (with medical providers, family, community), 7) death, and 8) God (beliefs, prayer, existential questions).  While patients, families and physicians all hoped for treatment efficacy, they balanced it with the known poor prognosis. Physicians consistently hoped for patients to live as long as possible as well as possible.  Patients and families transitioned more slowly to this hope.  Clinician attempts to preserve hope differed between oncologists and palliative care specialists. 

From these results, decisions made in this setting are multi-factorial, ultimately reflecting the competing values of decision makers.  Optimism about treatment is held in tension with poor prognosis, allowing for functional hope for patients and families.  Acknowledging shifting hopes of patients and families allows for changes in goals of care and shared decision making. 

Principlism is used to ethically analyze the decision making process, beginning with who makes the decisions to what decisions are made.  A clinician communication guide was developed to aid in the multiple difficult conversations for children and young adults with HGGs.

Table of Contents

Table of Contents


Dedication. iv

Acknowledgements. iv

Preface. 1

Chapter 1: Introduction: Overview of High Grade Gliomas and Ethical Concerns. 6

Poor Prognostic Pediatric Brain Tumors: Focus on High Grade Gliomas. 6

Palliative Care and Quality of Life. 9

HGGs, Goals of Care and Decision Making. 11

Figure 1: Options of Care for Poor Pediatric Prognostic Brain Tumors. 12

Figure 2: Decision Making Flow Chart from Diagnosis Through Progression. 13

Controversies in Care: Medical Dilemmas. 14

Overview of Ethical Dilemmas. 17

Ethical Challenges and Principlism.. 32

Chapter 2: Empirical Study: Purpose and Methodology. 35

Learning from the Decision Makers: Description of the Qualitative Study. 35

Purpose. 35

A Priori Objectives. 35

Hypotheses. 35

Methodology. 36

Figure 3: Experimental Design. 38

Eligible Participants and Enrollment 39

Figure 4: Patient Enrollment 40

Chapter 3: Results and Brief Discussion. 42

Table 1: Patient Characteristics. 42

Table 2: Options of Care Patients Received. 43

Table 3: Parent Interview Participant Characteristics. 44

Table 4: Patient Interview Participant Characteristics. 45

Table 5: Neuro-Oncologist Characteristics. 46

Results. 47

Figure 5: Audio-Recorded Visits Per Patient 47

Figure 6: Palliative Care Consultations Per Patient 48

Figure 7: Audio-Recording Time Per Patient 49

Figure 8: Symptom Focused Medications Patients Received^. 51

Figure 9: Patient/Parent Reported Symptoms^. 51

Figure 10: Themes, Codes, and Subcodes. 52

Interview Themes. 53

Patient and Parent Responses to Interview Questions. 53

Table 6: Patient and Parent Responses. 54

Review of Oncologist Responses. 65

Table 7: Neuro-Oncologist Questionnaire Responses. 66

Review of Palliative Care Responses. 75

Table 8: Palliative Care Questionnaire Responses. 76

Figure 11: Comparison of Oncology and Palliative Care Responses on Hope. 84

Figure 12: Summary of Communication Training Recommendations. 85

Limitations and Considerations. 85

Summary of Results. 86

Chapter 4: Difficult and Distressing Decisions for Care. 88

Decisions to Make. 88

Decisional Priority. 88

Figure 13: Representation of the Patient/Parent Priority Spectrum.. 89

Doing Everything’: The Physician’s Fear and the Parents’ Desire. 96

Chapter 5: Hope Preservation. 100

Chapter 6: Ethical Reflections and Analysis with Principlism.. 104

Principlism.. 104

Figure 14: Ethical Principles. 105

Autonomy: Respecting Persons. 105

Beneficence. 114

Nonmaleficence. 116

Justice. 119

Balancing Autonomy with Justice. 122

Balancing Autonomy with Beneficence and Nonmaleficence. 123

Ethical Dilemmas. 129

Chapter 7: Conclusions and Implications for Patient/Family Care & Practice. 130

Loci of Control Amidst Chaotic Decision Making for Children with High Grade Gliomas. 135

Implications and Communication Framework for the Longitudinal Decision Making Processes. 137

Figure 15: Framework of Communication for Decision Making for Children with HGGs. 140

Appendix A: Interview Guide for Patients/Families. 141

Appendix B: Physician Questionnaires. 142

Bibliography. 143



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