Program

The 28th Annual Medical Ethics Conference
This conference will explore how “quality of life” is defined, measured, and used in various healthcare contexts—from pediatrics to long-term care to hand transplantation—as well as research on healthcare outcomes. It will examine how the field of contemporary bioethics emerged in response to concerns about quality of life, and how bioethics and disability studies can be brought into conversation with each other to develop more nuanced understanding of the concept of quality of life and to appreciate how individuals view their own quality of life. The conference will feature morning lectures with time for discussion, followed by concurrent sessions in the afternoon that include panels, talks, discussion, and consideration of cases.

8:00 – 8:30 am

Registration and Continental Breakfast

8:30 – 8:35 am

Welcome
Lisa S. Parker, PhD*
Professor of Human Genetics
Director, Center for Bioethics & Health Law
University of Pittsburgh

8:35 – 9:10 am

Opening Plenary Lecture

 

Quality of Life: What is it, how is it measured, and how are the results used?

Joel Tsevat, MD, MPH
Professor of Medicine
Joaquin G. Cigarroa, Jr., MD, Distinguished Chair
Director, ReACH Center
Director, KL2 Program, UT Health San Antonio
Professor of Population Health, Dell Medical School, UT Austin

Abstract: Quality of life is a simple yet complex paradigm, with philosophers, ethicists, sociologists, psychologists, economists, theologians, clinicians, health services researchers, and lay persons all having different conceptualizations. As such, numerous measures of quality of life have been developed. This presentation will compare various definitions, concepts, measures, and uses of quality of life, with a particular focus on healthcare.

9:10 – 9:50 am

Panel

Disciplinary Perspectives on Quality of Life 

Intellectual history:
Jeff Aziz, PhD**
Lecturer II, Department of English
University of Pittsburgh

Religious Studies:
Clark Chilson, PhD**
Associate Professor of Religious Studies
University of Pittsburgh

Bioethics:
Mark Wicclair, PhD*
Professor, Center for Bioethics & Health Law
University of Pittsburgh

Abstract: On this panel, University of Pittsburgh faculty, drawn from different disciplines of the humanities, will trace the history of the concept of quality of life, discuss how the concept is employed in their disciplines, and examine the role played by “quality of life” in bioethical debates and decisions.

9:50 – 10:00 am

Break

10:00 – 11:00 am

Ira R. Messer
Lecture

Can We Avoid Death with Dementia?

Dena S. Davis, JD, PhD
Presidential Chair in Health
Professor of Bioethics
Lehigh University

Abstract: For many Americans, dementia is incompatible with an acceptable quality of life. However, advance directives and death-with-dignity laws make it difficult if not impossible to shorten one’s life if one has dementia but is physically healthy. Is there any way out?

11:00 am – noon

Keynote Lecture

Accessing Justice: Reassessing “Quality of Life” through Disability Studies 

Robert McRuer, PhD
Department of English
George Washington University

Abstract: This talk will examine the connections between an increasingly-global movement for what has been termed “disability justice” and the interdisciplinary field of disability studies.  It will place particular emphasis on the workings of ableism in culture, considering how bioethicists and disability studies scholars can work together to counter ableism.

12:00 – 1:00 pm

Lunch on your own

1:00 – 2:00 pm

Concurrent break-out sessions #1 – 3

Session #1

Life Immeasurable: The temptation to quantify quality

Jessica Benham, MA
Doctoral candidate in the Department of Communication
Master of Arts Program in Bioethics
University of Pittsburgh

Robert McRuer, PhD
Department of English
George Washington University

Candace Skibba, PhD**
Associate Teaching Professor
Carnegie Mellon University

Abstract: In an era defined by measurable outcomes and metrics, heavily mediated by technology, has quality of life been over-quantified? This panel will attempt to disrupt the “metric crutch” by prompting discussions regarding the immeasurable aspects of quality of life, discrepancies between patient and doctor evaluations of QoL, and practical strategies for understanding QoL outside a quantifiable framework. 

Session #2

Spiritual Dimensions of Quality of Life

 

Rev. John C. Welch, M.Div., PhD
Vice President for Community Engagement & Student Services and Dean of Students
Pittsburgh Theological Seminary

Clark Chilson, PhD**
Associate Professor of Religious Studies
University of Pittsburgh

Joel Tsevat, MD, MPH
Professor of Medicine
Joaquin G. Cigarroa, Jr., MD, Distinguished Chair
Director, ReACH Center
Director, KL2 Program, UT Health San Antonio
Professor of Population Health, Dell Medical School, UT Austin

Moderated by:

Valerie Satkoske, MSW, PhD**
Director of Ethics, Wheeling Hospital
Assistant Professor of Medicine and Associate Director of the Center for Health Ethics & Law, West Virginia University

Abstract:

Session #3

Quality of Life in Chronic Illness: When patient and caregiver appraisals differ

Jennifer Lingler, PhD, RN**
Professor of Community & Health Systems
School of Nursing
University of Pittsburgh

Amar D. Bansal, MD
Assistant Professor of Medicine
Section of Palliative Care and Medical Ethics
University of Pittsburgh

Marci Nilsen, PhD, RN**
Assistant Professor of Acute & Tertiary Care
School of Nursing
University of Pittsburgh

Abstract: Chronic illness affects the physical, psychological, and social domains of life for persons with chronic illness. Quality of life assessments by patients or their family caregivers (as proxy raters) can be used in both research and clinical practice to evaluate patient needs, measure the effect of interventions, and guide decision-making about care.  However, patients and their caregivers may not provide concordant appraisals of the patient’s quality of life, thus raising questions about how and by whom quality of life should be assessed.  In this session we will present findings from a study of quality of life assessments for patients with early stage Alzheimer’s disease, which compares patients’ self-assessments to assessments made by their family caregivers.  Panelists with expertise in diverse chronic illness populations will offer a response to issues raised by the findings presented, including the possibility that caregivers’ appraisals can be influenced by how the patient’s condition has impacted their own quality of life.  A moderated panel discussion will address the implications of this work for research, decision-making and clinical care.

2:00 – 2:10 pm

Break

2:10 – 3:10 pm

Concurrent break-out sessions #4 – 6

Session #4

Decision-making on behalf of children: Complexity is in the eye of the beholder

Ika and Charlie Lozinger
Parents

Alexander R. Nesbitt, MD
Medical Director
UPMC Susquehanna Hospice and Palliative Care

Abstract: We will discuss the ethics of decision-making and complex situations that parents and healthcare professionals face when working with children with complex needs. What causes burden to families, with what unwitting biases do well-meaning clinicians muddy the water, and how/why might our best clinical intentions be misaligned or possibly harmful to patients and families?

Session #5

Quality of Life in Hand Transplantation: Empirical and ethical challenges after 20 years of human experiments

Emily Herrington, MS
Doctoral candidate in the Department of Communication
Master of Arts Program in Bioethics
University of Pittsburgh

Jessie Soodalter, MD, MA**
Clinical Instructor of Medicine
University of Pittsburgh

Warren Breidenbach, MD, MSc
The Metis Foundation
San Antonio, TX

Abstract: The very notion that enhancing quality of life (QoL) could be the primary goal of what was deemed the ultimate life-saving intervention has been called “a quiet revolution in organ transplantation ethics” by prominent bioethics scholars. Nevertheless, twenty years after the first speculative discussions of the risks and benefits of hand transplantation, the specific nature of the tradeoffs among health, longevity, and QoL are still unclear. Despite having paved the way for face transplants, womb transplants, and penis transplants, fewer than 100 hand transplants have been performed to date, which complicates efforts to evaluate the results “objectively.” In this panel we will discuss challenges to understanding QoL-related effects of hand transplantation and the importance of developing integrated assessment and evaluation tools in this still evolving field of reconstructive transplantation.

Session #6

Quality of Life in Long-term Care: Mandates and measures

Howard Degenholtz, PhD*
Associate Professor of Health Policy and Management
University of Pittsburgh

Tara McMullen, PhD, MPH
Centers for Medicare & Medicaid Services

Rollin M. Wright, MD, MS, MPH, MA
Assistant Professor of Geriatric Medicine
University of Pittsburgh

Abstract: Nursing homes may seem like the last place to seek quality of life.  Traditionally, the medical model has focused on quality of care to the exclusion of quality of life.  However, the introduction of preference items into the MDS 3.0, a health status assessment tool used in nursing homes, as well as tools for delivering person-centered care, have made quality of life not just objectively measurable, but achievable.  This session will discuss the ethical challenges inherent in defining ‘the good life’ for people with varying levels of physical and cognitive function. It will also address national and state models for improving quality of life, and explore the opportunities and potential pitfalls of incentivizing nursing homes to prioritize quality of life relative to quality of care.

3:10 – 3:20 pm

Break

3:20 – 4:20 pm

Concurrent break-out sessions #7 – 9

Session #7

Inauspicious Beginnings: Perceptions and misconceptions regarding the quality of life of medically complex children

Michael A. Freeman, MD, MA
Assistant Professor of Pediatrics and Humanities
Penn State Hershey Children’s Hospital
Penn State College of Medicine

Abstract: When making care decisions in medically complex infants and children, we must rely upon shared decision-making between families and healthcare teams, influenced by our incomplete understanding of issues such as prognosis and the expected burdens and benefits of treatment, that is to say the quality of life. Unfortunately, research has suggested that healthcare providers and families often have a divergent view of the quality of life in these children, which in turn has a profound influence on counselling and medical decision-making.   Furthermore, decision-making may be different in the very young as compared to older children and adults, a finding which demonstrates the complex influence of relationship and concepts of “personhood” in medical decision-making. In this presentation we will review some of the research on this topic, explore the practical and ethical implications of these issues, and examine the influence of these issues within the context of children with kidney failure.

Session #8

What Matters Most—Understanding and honoring our patients’ highest goals

Alexander R. Nesbitt, MD
Medical Director
UPMC Susquehanna Hospice and Palliative Care

Abstract: This discussion will address the care of individuals with serious illness. Specifically, we will consider how those involved in their medical care ask about, understand, document, and work toward helping to achieve what matters most to the individual. We will discuss the “Serious Illness Conversation,” and the concept of “Goal Identification and Scaling.” We will work to address the theoretical importance of focusing on patients’ goals and the practical considerations of developing systems of care that routinely and thoroughly incorporate values-based discussions into the system of care.

Session #9

Ethical Implications of Decisions Made in Constructing Quality of Life Measures

Janel Hanmer, MD, PhD
Assistant Professor of Medicine
Medical Director, UPMC Patient Reported Outcomes Center
University of Pittsburgh

Barry Dewitt, MSc, PhD
Postdoctoral Research Scientist
Engineering and Public Policy
College of Engineering
Carnegie Mellon University

Abstract: Preference-based health-related quality of life measures are used in healthcare technology assessment like cost-effectiveness analyses.  Summarizing health-related quality of life into a single summary score requires that the developers make several design decisions that have ethical implications. In this presentation we will discuss three of these decisions: how to aggregate heterogeneous preferences, how to incorporate the utility of death, and if/how to apply exclusion criteria to survey responses.

4:20 – 4:30 pm

Wrap-up and Evaluation

Lisa S. Parker, PhD*
Professor of Human Genetics
Director, Center for Bioethics & Health Law
University of Pittsburgh

4:30 pm

Conference Adjournment

*Center for Bioethics & Health Law faculty member
**Center for Bioethics & Health Law affiliated faculty member
 

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