Decision Making in the Face of Pediatric Incurable High Grade Gliomas: A Qualitative Ethical Analysis 公开
Lanzel, Ashley (Spring 2018)
Abstract
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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