This is the introductory video of Reflections: Inequities; Deepening the Conversation, Informing Action, with Terry Altilio, Anne Kelemen and Vickie Leff.
7:25 min.
The intention of these conversations is to honor patients and families who have shared aspects of their lives which invite us to teach each other and learn from their voices, enrich our work - the tone and depth of our voice and actions. The following links to a 7 minute video summary of the intention of this project.
https://seriousillnessconversations.org/conversations
We will follow up in a few days with the link to the first "Reflections Episode" - a 35 minute discussion which highlights the work and perspective of Keith Wailoo, PhD, Henry Putnam University Professor of History and Public Affairs at Princeton University. We will talk about his presentation "Whose Pain Matters: Reflections on Race, Social Justice and COVID-19: Revealed Inequities” (link on the website) which engages ethics, policy and practice and highlights values and concepts at the core of our profession. We hope you will join us.
Reflections: Inequities; Deepening the Conversation, Informing Practice.
Join Terry, Anne and Vickie in a conversation about the video from Dr. Wailoo.
36:42 min.
Keith Andrew Wailoo is Henry Putnam University Professor of History and Public Affairs at Princeton University where he teaches in the Department of History and the School of Public and International Affairs. He is former Chair of the Department of History, the former Vice Dean of the School of Public and International Affairs, and current President of the American Association for the History of Medicine.
Presentation begins at timestamp: 7:29.
Gaither et al. (2018) Disparities in Discontinuation of Long Term Opioid Therapy Following Illicit Drug Use among Black and White Patients. Drug and Alcohol Dependence.192(1):371-376
Burgess D. J. (2011). "Addressing racial healthcare disparities: how can we shift the focus from patients to providers?" Journal of General Internal Medicine, 26(8), 828–830.https://doi.org/10.1007/s11606-011-1748-z
Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301. https://doi.org/10.1073/pnas.1516047113
Byrne, J. LCSW, CADC, Clancy, K. MSW, and Ciszewski, I. LCSW (August 2020)Should the Location of a Patient’s Home Inform Physicians’ Opioid Prescription Practices. Retrieved from https://journalofethics.ama-assn.org/article/should-location-patients-home-inform-physicians-opioid-prescription-practices/2020-08
Chapman, E. N., Kaatz, A., & Carnes, M. (2013). Physicians and Implicit Bias: How Doctors May Unwittingly Perpetuate Health Care Disparities. Journal of General Internal Medicine, 28(11), 1504–1510https://doi.org/10.1007/s11606-013-2441-1
Warrach, Haider. (July 11, 2020). Racial disparities seen in how doctors treat pain, even among children. Washington Post. Retrieved from https://www.washingtonpost.com/health/racial-disparities-seen-in-how-doctors-treat-pain-even-among-children/2020/07/10/265e77d6-b626-11ea-aca5-ebb63d27e1ff_story.html
Washington, H. A. (2006). Medical apartheid: the dark history of medical experimentation on Black Americans from colonial times to the present (1st ed.). Doubleday.
Wailoo, K. (2014). Pain : a political history. Johns Hopkins University Press.
The second Episode of Reflections 2020: Inequities will focus on the delegitimizing of pain in women and people of color. We capture the voice of Dr. Susan Moore whose living and dying experience with COVID-19 is reflected in a Facebook posting from her hospital bed and commentary by Drs Camara Phyllis Jones, a family physician and former president of the American Public Health Association and Joia Crear-Perry, president of the National Birth Equity Collaborative. We are also providing a link to a John Oliver segment done with Wanda Sykes and Larry David titled “Bias in Medicine” from August 2019, focused on gender and racial bias.
John Oliver’s work is replete with humor, satire and language choices not always appropriate for children and elders- so be cautious. While the humor may feel incongruent with our current world, this segment reflects history, the poignant experience of patients and grieving families linking to the voice of Dr. Moore who brings us to “now.”
In the words of Dr. Crear-Perry, there are “through lines” within the Dr. Moore and “Bias in Medicine” videos that we discuss in our second episode which is posted on -
http://www.seriousillnessconversations.org/.
As always, the intention of these conversations is to honor patients and families who have shared aspects of their lives which invite us to teach each other and learn from their voices, enrich our work - the tone and depth of our voice and actions. We intend for these short discussions (20 minutes) to stand on their own so please join whether or not you have time to view the videos.
We reference the following videos and also provide a link to a physician who “fact checks” the 2019 video of John Oliver – an internet celebrity who adds further context.
Reflections 2020: Conversations
Terry, Anne & Vickie talk about Bias in Medicine after viewing the John Oliver episode, Dr. Mike's review of the Oliver episode and discussion about Dr. Susan Moore on Democracy Now.
19:03 min.
Crear-Perry, J., Maybank, A., Keeys, M., Mitchell, N., & Godbolt, D. (2020). Moving towards anti-racist praxis in medicine. Lancet, 396(10249), 451-453. https://doi.org/10.1016/S0140-6736(20)31543-9
Núñez A, Madison M, Schiavo R, Elk R, Prigerson HG. (Apr. 14, 2020) Responding to Healthcare Disparities and Challenges With Access to Care. Health Equity. 4(1):117-128. doi: 10.1089/heq.2020.29000.rtl. PMID: 32368710; PMCID: PMC7197255.
van Ryn, M., Burgess, D.J., Dovidio, J.F., Phelan, S.M., Saha, S., Malat, J., Griffin, J.M., Fu, S.S., Perry, S. (Apr. 1, 2011) The Impact of Racism on Clinician Cognition, Behavior and Clinical Decision Making. Du Bois Rev. 8(1):199-218. doi: 10.1017/S1742058X11000191. PMID: 24761152; PMCID: PMC3993983
Elk R, Emanuel L, Hauser J, Bakitas M, Levkoff S. (Mar. 26, 2020) Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community. Health Equity. 4(1): 52-83. https://pubmed.ncbi.nlm.nih.gov/32258958/
This 25 minute discussion calls attention to history - of the illness, the hospitalization and institutional behaviors within the community and to discovery of the potential for trauma and inconsistent messaging and experiences within relationship and institution over weeks in hospital that support trust or situational mistrust. Within the context of the video "The Danger of the Single Story" the potential of social work to link "just give me a week" to Samuel's roles and responsibility within the family, the "meaning" of patient and the illness within the family legacy and the perceptions and unique demands on clinicians are linked to opportunities for advocacy. Resources are provided related to trauma and "trauma focused" interventions. Articles written for medical colleagues are included as resources to broaden the understanding of how inequities have been "baked into" basic structures such as algorithms that support medical decision making. Links to articles on decision-making fatigue are included to invite thoughtfulness about the effect of ongoing, cognitive and emotionally complex decision-making on patients and families.
As always, the intention of these conversations is to honor patients and families who have shared aspects of their lives which invite us to teach each other and learn from their voices, enrich our work - the tone and depth of our voice and actions. We intend for these short discussions to stand on their own so please join whether or not you have time to view the videos.
Reflections 2020 Conversations
Episode 3 of Reflections 2020 is focused around a narrative of a 78 year old Black patient, Miss Cora who was admitted for resection of a brain tumor. Medical complications result in a hospital stay of 45 days.
26:17 min.
Chimamanda Ngozi Adichie offers a compelling TedTalk about the dangers of a single story.
Sjoding, M. W., Dickson, R. P., Iwashyna, T. J., Gay, S. E., & Valley, T. S. (2020) Racial Bias in Pulse Oximetry Measurement. N Engl J Med, 383(25), 2477-2478. https://doi.org/10.1056/NEJMc2029240
Moorhouse, A. (2020). Decision fatigue: less is more when making choices with patients. Br J Gen Pract, 70(697), 399. https://doi.org/10.3399/bjgp20X711989
Vyas, D. A., Eisenstein, L. G., & Jones, D. S. (2020). Hidden in Plain Sight - Reconsidering the Use of Race Correction in Clinical Algorithms. N Engl J Med, 383(9), 874-882. https://doi.org/10.1056/NEJMms2004740
Plumer, B., Popovich, N. (Aug. 24, 2020) How Decades of Racist Housing Left Neighborhoods Sweltering. New York Times. Retrieved from https://www.nytimes.com/interactive/2020/08/24/climate/racism-redlining-cities-global-warming.html
National Institute for Health Care Management. (Oct. 10, 2020) Systemic Racism Is a Public Health Crisis. Retrieved from https://nihcm.org/publications/systemic-racism-is-a-public-health-crisis
“I was trying to advocate for my brother, I was seen as being aggressive, I was viewed as being angry. They never got to know that I’m advocating for my brother, I’m also in grad school for social work. Nobody really knew who he was, who we were as a family. There is distrust everywhere.” Kay Hudson
Episode 4 revolves around a video titled Race Matters: Ethnic, Cultural and Spiritual Considerations in Aid in Dying. Yet it is not focused on the ethical and policy aspect of AID in Dying. Rather it invites a look at aid in dying within the framework of racism, marginalized populations and historical events linking and challenging foundational palliative and social work concepts including advance directives, autonomy, trust and relationship. Readings and an additional video are provided to enhance and broaden the lens through which we consider a policy and clinical practice such as aid in dying.
Episode four of Reflections 2020 talks about the many issues that arise in an interesting video called: Race Matters. Ethnic, Cultural and Spiritual Considerations in Aid in Dying . With Terri Laws, Tracey Bush & Alan Elbaum.
22:59 min.
Race Matters. Ethnic, Cultural & Spiritual Considerations in Aid in Dying. Presented by the National Clinicians Conference on Medical Aid in Dying; with Terri Laws, Tracey Bush, Alan Elbuam. 2020.
Please follow this link to watch the video on Vimeo. https://vimeo.com/396806694
Elbaum, A. (2020). "Earning Patient Trust: More Than a Question of Signaling." Hastings Cent Report 50(1): 29-31.
Sullivan, L. S. (2020). "Trust, Risk, and Race in American Medicine." Hastings Cent Rep 50(1): 18-26.
Barness, et.al. (2020) Societies Position Statements on Physician Assisted Suicide & Euthanasia. BMC Med Ethics 21:111.
Kagawa Singer, M. and L. J. Blackhall (2001). "Negotiating cross-cultural issues at the end of life: "You got to go where he lives"." JAMA 286(23): 2993-3001.
Halpern, J. “From idealized clinical empathy to empathic communication in medical care.” Medicine, Health Care and Philosophy. Summer, 2013.
Laws, T. (2019) "How Race Matters in the Physician-Assisted Suicide Debate." Religion and Politics. Retrieved from https://religionandpolitics.org/2019/09/03/how-race-matters-in-the-physician-assisted-suicide-debate/
Elbaum, A. (2020). "Black Lives in a Pandemic: Implications of Systemic Injustice for End-of-Life Care." Hastings Center Report 50(3): 58-60.
Morrison, Sean (2021) Debate on Advance Directives: Advance Care Planning is Wrong GeriPal.org
Not Dead Yet: https://notdeadyet.org/
Reflections 2020 began in the spring of 2021 and while these postings will come to an end with episode 5, the thoughtfulness, action and commitment they honor can never end. Consistent with the past 4 postings, this episode is introduced by a family quote leading to a video discussion to enhance learning, thoughtfulness and practice related to inequities, social justice and racism. The goal has been to deepen our understanding and discover varied paths to healing and joining in the work of mitigating inequities and creating trustworthiness within our institutions and ourselves.
This longer video not only introduces the 5 th episode but also serves to provide a snapshot of the ideas and perspectives of the past 4 episodes highlighting some of the authors, videos, resources that may enrich the landscape within which we view inequities, violence and systemic racism.
Bilyj, B. (2021). Bridging disparities through health equity. American College of Radiology. Retrieved from https://www.acr.org/Practice-Management-Quality-Informatics/Imaging-3/Case-Studies/Changemakers/Efren-Flores
Lamas, D. ( 11/24/2021). Who deserves a lifesaving organ? New York Times. Retrieved from https://www.nytimes.com/2021/11/24/opinion/organ-transplant.html
Lamas, D. (10/6/2021). ‘You’re dying’, I told my patient. I wish I hadn’t. Retrieved from Opinion | Why a Patient in Denial Is So Tough for Doctors - The New York Times (nytimes.com)
Mount, G. E. (2016). Is post traumatic slave syndrome stamped from the beginning. Black Perspectives. Retrieved from https://www.aaihs.org/is-post-traumatic-slave-syndrome-stamped-from-the-beginning/
Nichols, E. Model for the Philosophical Aspects of Culture. Adapted by Karen Trader. Retrieved from https://aiforeducators.files.wordpress.com/2011/04/ed-nichols-cultural-philosophies.doc
(2021). Read until you understand The profound wisdom of Black life and literature Retrieved from https://www.readlearnlivepodcast.com/read-until-you-understand-ep-93-with-farah-jasmine-griffin/
This video begins with a recap of the project. Briefly reviewing the first four episodes.
At 14:13 Episode Five begins.
This 5th and final episode introduces the work of three provocative thinkers. Dr Edwin Nichols, a clinical industrial psychologist has developed a paradigm Philosophical Aspects of
Cultures which links historical world views of ethnic groups to values, ways of knowing and
systems of logic – which all can be related to aspects of palliative practice. Dr Joy Angela
DeGruy, a social worker with a Bachelor of Science in communication, a Master's Degree in Social Work and in Clinical Psychology and a PhD in Social Work Research authored Post Traumatic Slave Syndrome: America’s Legacy of Enduring Injury & Healing, after 12 years of research. Her work addresses the residual impacts of generations of slavery, linking strengths from the past to healing in the present. Not without controversy, the posting includes a critique by Ibram X. Kendi and a response by author Guy Emerson Mount. Her discussions of cognitive dissonance; and descriptions of the real life impact of racism and chattel slavery are instructive and profound. Lastly the African American Transplant Access Program at Northwestern University built by Dr. Dinee Simpson, a transplant surgeon highlights the work of a Black social worker Shimere Harrington LICSW and health literacy coach Zaundra Boyd and is offered as a model for action to move beyond words and thought to mitigate disparities.
Leary, J. D. (2005). Post traumatic slave syndrome: America's legacy of enduring injury and healing. Milwaukie, Oregon: Uptone Press.
Wailoo, K. (2014). Pain: a political history: John Hopkins University Press.
Bilyj, B. (2021). Bridging disparities through health equity. American College of Radiology. Retrieved from https://www.acr.org/Practice-Management-Quality-Informatics/Imaging-3/Case-Studies/Changemakers/Efren-Flores
Lamas, D. ( 11/24/2021). Who deserves a lifesaving organ? New York Times. Retrieved from https://www.nytimes.com/2021/11/24/opinion/organ-transplant.html
Lamas, D. (10/6/2021). ‘You’re dying’, I told my patient. I wish I hadn’t. Retrieved from Opinion | Why a Patient in Denial Is So Tough for Doctors - The New York Times (nytimes.com)
33:10 min.
0 - 14:13 summarizes the first four episodes
14:13 Begins Episode 5
Philippe SHOCK Matthews Show. 4/18/2018
Philippe SHOCK Matthews Show. Jan. 18, 2021
March 2, 2017
The aces aware video on racism.