Beyond Limitations: Disability and Quality of Life

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When you hear the phrase quality of life, what comes to mind? Having dinner with family, learning a language, watching a movie with friends? Or, does the image of a patient struggling to perform basic tasks such as bathing or getting dressed, or someone who is reliant on a ventilator to breathe come to mind? Despite its inherently subjective and multifaceted nature, quality of life is a term that is widely used in healthcare, particularly for making critical decisions that have life-altering consequences. It is a complex construct that encompasses a wide range of factors that affect a person’s overall sense of well-being, including their physical health, emotional state, social connections, and financial stability.

In this all new in-depth episode of EthicsLab, with our guests we explore how the concept of quality of life is used in medical decision making and shed light on the challenges this brings, especially to those in the disability community. We offer several solutions to how these challenges can be overcome.

Our guests in this episode include: 

  • Dr. Devan Stahl, bioethicist and Assistant Professor of Religion at Baylor University specializing in clinical ethics and disability ethics.  
  • Melissa Crisp-Cooper (with support from husband Owen Cooper as her revoicer), Health Advocate at UCSF focused on educating clinicians on the needs of people with disabilities and how to interact with them as patients
  • Dr. Clarissa Kripke, Clinical Professor of Family and Community Medicine at UCSF and Director of Office of Developmental Primary Care, a program dedicated to improving outcomes for people with developmental disabilities across the lifespan with an emphasis on adolescents and adults.

Additional resources relating to or referenced in this episode:

  1. Misuses of “Quality of Life” Judgments in End-of-Life Care, Stahl Devan
  2. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, Albert Jonsen, Mark Siegler, William Winslade
  3. Principles of Biomedical Ethics, Tom Beauchamp and James Childress 
  4. Who Defines My Quality of Life?: Perspectives from Disability-Advocates and Caregivers (White Paper) 
  5. Office of Developmental Primary Care 
  6. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority, Bruno, Marie-Aurélie, et al.
  7. Using quality of life measures in the clinical setting, Higginson, Irene J., and Alison J. Carr
  8. Measuring quality of life: who should measure quality of life, Hall, A. J., and L. Kalra