NSHEN has developed this educational resource called Featured Article Summary. We will be choosing articles from recent health ethics literature that we think will be of interest to ethics committee members as well as others working in our health care system.
We will create a summary of each article we feature for those too busy to read it in its entirety.
New Summary
Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care.
by Guidry-Grimes, L, K. Savin, J.A. Stramondo, J.M. Reynolds, M. Tsaplina, T. Blankmeyer Burke, A. Ballantyne, E.F. Kittay, D. Stahl, J.Leach Scully, R. Garlan-Thomson, A. Tarzian, D. Dorfman, and J. J. Fins. Hastings Center Report 50(3): 28-32.
Short summary:
In this article Guidry-Grimes et al. argue for a shift in focus in crisis standards of care toward disability justice. With reference to the inequities encountered and exacerbated by the pandemic, the authors argue for full moral recognition of disabled people in development and modification of crisis standards of care. Practical suggestions are provided on basis of an elaboration of the four vision statements of the 2010 Institute of Medicine’s “Summary of Guidance for Establishing Crisis Standards of Care.”
Introduction
The 2010 Institute of Medicine’s “Summary of Guidance for Establishing Crisis of Standards of Care” – referred to as the IOM – outlines four elements in its vision statement: Fairness, equitable processes; community and provider engagement, education, and communication; and the rule of law. The authors interpret these elements from a disability justice perspective and argue for “substantive inclusion of disabled people in decision-making related to their interests.” (p. 28).
Key arguments:
• Fairness: Public health measures such as physical distancing are a challenge for disabled people living in congregate care settings, who are often heavily dependent on staff members to ensure their safety and well-being. Long term planning to increase safety for disabled people in public health crises should include investment in and design of congregate settings to reduce the risk of disease spreading in these facilities. The pandemic has also highlighted the vulnerability of people who are supported by home and community-based services to service disruptions and the need to take into account the risk to support workers in home and community settings. Other concerns about fairness raised by the authors relate to the application of Sequential Organ Failure Assessment scoring in triaging and reallocation of ventilators. Guidry-Grimes et al. argue that disabled persons should be directly engaged in developing crisis standards to minimize biases that may otherwise contribute to de-prioritization of disabled persons in the triaging process.
• Equitable processes: Crisis standards of care should incorporate the perspectives of disabled persons. An equitable process is best achieved if those who are impacted by the crisis standards of care are involved in the development and implementation of such standards. Suggested measures to mitigate the impact of personal biases in triage processes in hospitals and other institutions, include establishing a triage committee rather than a triage person. Moreover, triaging should involve assessment of every individual case, but without receiving any non-medically relevant information about patients that could invoke bias or stigma.
• Community and provider engagement, education, and communication: According to the IOM, crisis standards of care should be developed with direct involvement of the public and stakeholders. Guidry-Grimes et al. call for “formal inclusion of disability perspectives in institutional and governmental decision-making bodies.” (p.30). Attention must be paid to accessibility of communication to ensure the safety and well-being of people with disabilities. This includes ensuring appropriate access to communication devices in medical facilities and captioning of public health press conferences, for example. Direct involvement of the disability community is important to respond to emerging communication needs.
• The rule of law: According to the IOM, the rule of law involves the authority “to empower necessary and appropriate actions and interventions.” (p. 30). The authors argue that the need to allow health care providers the freedom to do their job during a time of crisis must be carefully balanced with the antidiscrimination mandate. With reference to the U.S Secretary of Health and Human Services’ letter of March 24, 2020, which called for deviation from standard of care during crisis, the authors highlight the risk of health care providers deprioritizing accommodation of disabled people. The authors also highlight implicit biases in the Glasgow Coma Scale, to illustrate how such biases contribute to disadvantaging disabled people.
Conclusion
The COVID-19 pandemic has highlighted vulnerabilities and systemic barriers to equitable care of disabled people during crises. The urgent need to address the pandemic threat should be carefully balanced with the need for intentional and preventative antidiscrimination efforts.
NSHEN Article Summary – Disability Rights as a Necessary Framework
Past Summaries
Pandemic and Beyond: Considerations When Personal Risk and Professional Obligations Converge by Daniel J. Benedetti, Mithya Lewis-Newby, Joan S. Roberts, and Douglas S. Diekema. The Journal of Clinical Ethics, 2021.
(Abstract)
Our Next Pandemic Ethics Challenge? – Allocating “Normal” Health Care Services by Jeremy R. Garrett, Leslie Ann McNolty, Ian D. Wolfe, and John D. Lantos. Hastings Center Report, 2020.
(Abstract)
Our Next Pandemics Ethics Challenge – Article Summary
Self-Inflicted Moral Distress: Opportunity for a Fuller Exercise of Professionalism by Jeffrey T. Berger, Ann B. Hamric, and Elizabeth Epstein, (2019), The Journal of Clinical Ethics, Volume 30:4; p.314-317.
(Abstract )
Self-Inflicted Moral Distress – Article Summary
Family-Centered Culture Care: Touched by an Angel by Jesus A Hernandez, (2019), Journal of Clinical Ethics; 30(4):376-383.
(Abstract )
Family Centered Culture Care – Full Artlcle Summary
Tho’ Much is Taken, Much Abides: A Good Life Within Dementia in Nancy Berlinger, Kate de Medeiros, and Mildred Z. Solomin (Edts.) What makes a Good Life in Late Life? Citizenship and Justice in Aging Societies, A Hastings Center Special Report, September-October 2018: S71-S74.
(Abstract )
Tho’ Much is Taken, Much Abides: A Good Life Within Dementia – Full Article Summary
Poverty – Not a Justification for Banning Physician-Assisted Death by Lindsey M. Freeman, Susannah L. Rose, and Stuart J. Youngner, The Hastings Center Report, 2018
Poverty – Not a Justification for Banning Physician-Assisted Death Article Summary
When Societal Structural Issues Become Patient Problems: The Role of Clinical Ethics Consultation by Aimee Milliken, Martha Jurchak, and Nicholas Sadovnikoff, Hastings Center Report, 2018
(Abstract)
When Societal Structural Issues Become Patient Problems-Article Summary
Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review by Andrea Rodriquez-Prat, Albert Balaguer, Iris Crespo, Christina Monforte-Royo, Bioethics, 2019
(Abstract)
Feeling Like a Burden to Others – Article Summary
Nursing Ethics Huddles to Decrease Moral Distress among Nurses in the Intensive Care Unit? by Marianne C. Chiafery, Patrick Hopkins, Sally A. Norton, and Margie Hodges Shaw, The Journal of Clinical Ethics, 2018
(Abstract)
Nursing Ethics Huddles – Article Summary
Capacity for Preference – Respecting Patients with Compromised Decision-Making by Jason Adam Wasserman and Mark Christopher Navin, The Hastings Center Report, 2018
Capacity for Preference – Article Summary
Narrative Symposium: Doctor in the Family: Stories and Dilemmas Surrounding Illness in Relatives by Joseph J. Fins, Kathleen N.Fenton, Amos Ritter, et al., Narrative Inquiry in Bioethics, 2018 (https://muse.jhu.edu/article/690220)
Narrative Symposium: Doctor in the Family: Stories and Dilemmas Surrounding Illness in Relatives
Can Rationing Through Inconvenience be Ethical? by Nir Eyal, Paul L Romain, and Christopher Robertson, Hastings Center Report, 2018
Can Rationing Through Inconvenience be Ethical? – Discussion Page
Workarounds Are Routinely Used by Nurses – But Are They Ethical? by Nancy Berlinger, The American Journal of Nursing, 2017
Workarounds Are Routinely Used by Nurses – But Are They Ethical?
How Long a Life is Enough Life? by D. Callahan & W. Gaylin, Hastings Center Report, 2017
How Long a Life is Enough Life?
Development of a Clinical Ethics Committee de Novo at a Small Community Hospital by Addressing Needs and Potential Barriers by Bonnie H. Arzuaga, The Journal of Clinical Ethics, 2017
Development of a Clinical Ethics Committee de Novo at a Small Community Hospital
After the DNR – Surrogates Who Persists in Requesting Cardiopulmonary Resuscitation by Ellen M. Robinson, Wendy Cadge, Angelika A. Zollfrank, M. Cornelia Crement, and Andrew M. Courtwright, The Hastings Centre Report, 2017
After the DNR – Surrogates Who Persists in Requesting Cardiopulmonary Resuscitation
Moral Agency, Moral Imagination, and Moral Community: Antidotes to Moral Distress by Terri Traudt, Joan Liaschenko and Cynthia Peden-McAlpine, The Journal of Clinical Ethics, 2016
Moral Agency Moral Imagination and Moral Community
The Nurse as the Patient’s Advocate: A Contrarian View by Sarah E Shannon, A Hastings Center Special Report, 2016
The Nurse as the Patient’s Advocate: A Contrarian View
Doctor Knows Best? Tubal Litigation in Young, Childless Women. Case study with commentaries by Kathryn Goldrath and Lauren B. Smith, The Hastings Center Report, 2016
Doctor Knows Best? Tubal Litigation in Young, Childless Women
How Can Clinical Ethics Committees Take on Organization Ethics? Some Practical Suggestions by James E Sabin.
How Can Clinical Ethics Committees Take on Organization Ethics? Some Practical Suggestions
Must We Be Courageous? by Ann B Hamric, John D Arras, and Margaret E Mohrmann.
On Not Taking “Yes” for an Answer by Alexander M. Capron.
On Not Taking “Yes” for an Answer
Reframing Conscientious Care. Providing Abortion Care When Law and Conscience Collide. By Mara Buchbinder, Dragana Lassiter, Rebecca Mercier, Amy Bryant, and Anne Drapkin Lyerly.
Reframing Conscientious Care. Providing Abortion Care When Law and Conscience Collide
Let’s not Forget about Clinical Ethics Committees! By Franco A. Carnevale.
Let’s not Forget about Clinical Ethics Committees!
Patient Satisfaction Surveys on a Scale of 0-10: Improving Health Care, or Leading It Astray? By Alexandra Junewicz and Stuart J. Younger.
The Ethics of Physicians’ Web Searches for Patients’ Information by Nicholas Genes and Jacob Appel.
The Ethics of Physicians’ Web Searches