“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. 

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

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.

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.

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.