Duquesne University Duquesne Scholarship Collection Electronic Theses and Dissertations Spring 2018 An Ethics of Care Approach to Managing the Burden of Alzheimer's Disease Carrie L. Stott Duquesne University Follow this and additional works at: https://dsc.duq.edu/etd Recommended Citation Stott, C. L. (2018). An Ethics of Care Approach to Managing the Burden of Alzheimer's Disease (Doctoral dissertation, Duquesne University). Retrieved from https://dsc.duq.edu/etd/1453 This One-year Embargo is brought to you for free and open access by Duquesne Scholarship Collection. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Duquesne Scholarship Collection. For more information, please contact [email protected]. AN ETHICS OF CARE APPROACH TO MANAGING THE BURDEN OF ALZHEIMER’S DISEASE A Dissertation Submitted to the McAnulty College and Graduate School of Liberal Arts Duquesne University In partial fulfillment of the requirements for the degree of Doctor of Philosophy By Carrie L. Stott May 2018 Copyright by Carrie L. Stott 2018 AN ETHICS OF CARE APPROACH TO MANAGING THE BURDEN OF ALZHEIMER’S DISEASE By Carrie L. Stott Approved March 22, 2018 _____________________________ _______________________________ Gerard Magill, PhD Henk ten Have, MD, PhD The Vernon F. Gallagher Chair Director, Center for Healthcare Ethics Professor of Healthcare Ethics Professor of Healthcare Ethics (Dissertation Director) (Committee Member) ______________________________ ______________________________ Joris Gielen, PhD Henk ten Have, MD, PhD Associate Professor of Healthcare Ethics Director, Center for Healthcare Ethics (Committee Member) Professor of Healthcare Ethics ______________________________ James Swindal, PhD Dean, McAnulty College and Graduate School of Liberal Arts iii ABSTRACT AN ETHICS OF CARE APPROACH TO MANAGING THE BURDEN OF ALZHEIMER’S DISEASE By Carrie L. Stott May 2018 Dissertation supervised by Gerard Magill, PhD Alzheimer’s disease is a progressive, neurodegenerative disease for which there is currently no cure or effective treatments. The disease has devastating effects on the individuals whom it strikes and because its prevalence continues to rise, it significantly threatens the public good. Throughout its lengthy duration from diagnosis to death there are numerous ethical issues concerning patients individually as well as society generally. The management of the burdens of Alzheimer’s disease presents a formidable ethical challenge from the perspective of patients and society. The ethics of care is adopted to address this problem because of its flexibility to integrate personal care needs with public good. An ethics of care approach can facilitate effective management of the burden of Alzheimer’s disease when its two components, relational autonomy and social responsibility, are integrated and analyzed. iv From the earliest stages to the most severe stages of Alzheimer’s disease the ethics of care can help to incorporate personal care and the public good, providing high-quality care while enhancing public wellbeing. The ethics of care is attentive to the need to engage clinical ethics with organizational ethics for the proper management of the disease. From the perspective of clinical ethics, relational autonomy and social responsibility can address the ethical issues related to diagnosis in early stages to management in severe stages. From the perspective of organizational ethics, the focus upon relational autonomy highlights the organizational components underlying quality of care, and the focus on social responsibility highlights the need to control costs and improve access to care. The ethics of care approach combines clinical and organizational ethics to manage the burden of Alzheimer’s disease in a manner that unites personal care and the public good in a sustainable and effective manner. v DEDICATION To my husband Kyle, for turning my visions into reality. Your persistence and perseverance have made so many of my dreams come true. I am forever grateful for you. To my children Ethan and Lucianna, for allowing my adventure into healthcare ethics to also be your adventure. You both make the world a better, brighter place. To my parents Tom and Arlene Green, for instilling upon me the value of care for others and the community. Your actions of kindness and compassion have always spoken louder than words. vi ACKNOWLEDGEMENT My gratitude to so many of my friends and family members who have supported me through this doctoral program, your curiosity and encouragement provided me with continuous motivation. I am especially grateful for the friendships I have made at the Center for Healthcare Ethics, namely Christine Trani, Kate McCord, and Gary Edwards. To the faculty and staff at the Center for Healthcare Ethics, thank you for welcoming me into the program. I have benefited immensely from the center’s design as a place where clinicians can become academics, and academics can become clinicians. Regardless of where we come from, or where we hope to go, we all become a well-rounded group of ethics professionals well prepared to carry on the unique responsibilities of the field of bioethics. To the Gumberg Library staff, many thanks for all of the valuable services you provide. Words cannot express how my experience at Duquesne has benefited from all that you do. The volume of help you all provide in the friendliest way possible does not go unnoticed. vii TABLE OF CONTENTS Page Abstract ............................................................................................................................ ..iv Dedication .......................................................................................................................... vi Acknowledgement ............................................................................................................ vii Chapter One: Introduction…………………………………………………………………1 I. The Burden of Alzheimer’s Disease A. The Correlation between Mild and Severe Alzheimer’s Disease i. The Mild Stages of Alzheimer’s Disease ii. The Severe Stages of Alzheimer’s Disease B. Developing Organizational Ethics to integrate Personal Care with Public Good II. Improving Quality of Care i. Enhancing Wellbeing III. Systematic Analysis of the Ethics of Care for Alzheimer’s Disease A. Relational Autonomy i. Interdependence ii. Vulnerability B. Social Responsibility i. The Expanding Practice of Care ii. Care and Justice IV. The Ethics of Care During the Mild Stages of Alzheimer’s Disease A. Relational Autonomy: the Impact of Early Diagnosis for Patient Care i. Refocusing Medicalization to Include Psycho-Social Considerations ii. Preserving Quality-of-Life B. Social Responsibility: Benefits of Early Diagnosis for the Public Good i. Expanding Research Initiatives ii. Reducing Stigmatization V. The Ethics of Care during the Severe Stages of Alzheimer’s Disease A. Relational Autonomy: Vulnerability during Complete Care Dependence i. Caregiving ii. Medical Decision Making B. Social Responsibility: Benefits of Hospice and Palliative Care for Public Good i. A Multidisciplinary Approach to Care ii. Reducing Unnecessary Hospitalizations VI. Integrating Ethics of Care with Organization Ethics to Manage Alzheimer’s Disease A. Relational Autonomy: Improving Quality-of-Care for AD i. Promoting Patient and Family-Centered Care ii. Strengthening Professional Ethics B. Social Responsibility: Containing Costs and Improving Access Associated with AD for Public Good i. Setting Limits through Medical Policy ii. Standardizing the Use of Palliative Care and Hospice Chapter Two: The Burden of Alzheimer’s Disease ..……………………………………42 I. The Correlation between the Mild and Severe Stages of Alzheimer’s Disease A. The Mild Stages of Alzheimer’s Disease i. Human Dignity as an Intrinsic Value ii. The Attributes of Dignity, Autonomy and Agency viii B. The Severe Stages of Alzheimer’s Disease i. Personal Burdens Associated with Advanced Dementia ii. Societal Burdens Associated with Advanced Dementia II. Developing Organizational Ethics to Integrate Patient Care with Public Good A. Improving Quality-of-Life i. The Personal Importance of Quality-of-Life ii. Maintaining and Improving Quality-of-Life B. Enhancing Public Wellbeing i. The Societal Value of Wellbeing ii. Encouraging Wellbeing in Society III. Conclusion Chapter Three: Systematic Analysis of the Ethics of Care for Alzheimer’s Disease …...72 I. Relational Autonomy A. Interdependence i. Respect for Emotions ii. Formation of Trust B. Vulnerability i. Fairness among Unequals ii. The Value of Care Related Work II. Social Responsibility A. The Expanding Practice of Care i. Solidarity and Quality Care ii. Potential for Improvement B. Care and Justice i. Care as a Commodity ii. Refocusing Power III. Conclusion Chapter Four: The Ethics of Care during the Mild Stages of Alzheimer’s Disease ….120 I. Introduction to the Mild Stages A. Bioethics and the Mild Stages B. Neuroethics and the Mild Stages II. Relational Autonomy: the Impact of Early Diagnosis for Patient Care A. Refocusing Medicalization to Include Psycho-Social Considerations i. Benefits of Personal Narratives ii. Benefits of Advance Planning B. Preserving Quality-of-Life i. Cognitive Health ii. Emotional Health III. Social Responsibility: Benefits of Early Diagnosis for the Public Good A. Expanding Research Initiatives i. Beyond Pharmaceuticals ii. Patient Centered Research B. Reducing Stigmatization i. Implications of Alzheimer’s Related Stigma ii. Moving Past the Stigma