- Amy Agape
Who is Missing?: Disparity in End of Life Care
Updated: Jul 2, 2020
“Stand up. Look around at everyone in this room,” he said before pausing to allow us to follow his instructions. The 200 or so conference participants turned their heads, smiling at one another. Then he asked,
“Who is missing?”
The smiles slowly disappeared from our faces as we acknowledged the homogeneity of our group. Almost all of us were white. Where were our colleagues of color?
Several years ago, I sat with hundreds of end of life workers in a weekend conference dedicated to the theme of contemplative practices and end of life care. I was so excited to be there, to give a workshop called “Views from my Deathbeds”, and to meet others who brought contemplative practice into their work. We were at a well-respected Buddhist university weaving together workshops and keynote lectures with spiritual practice sessions and deep conversations about how our spirituality informed our professional life. I think many of us felt good about being there.
I know I did.
And then I got called out/in. In a panel on the state of hospice and palliative care, sociologist (now hospital chaplain) and researcher on hospice volunteerism as a contemplative practice John Baugher (please read more about his work here; it’s inspirational) asked that one essential question:
Who is missing?
Since that conference, I have learned so much about disparity, not just in end of life care but in our entire healthcare system, about its roots in centuries of discriminatory practices, constructed stereotypes, and systemic oppression.
I still have so much more to learn.
And I have so much more action to take to help change this situation in whatever ways I can.
Because I strongly believe that everyone deserves to have the option to be cared for by a dedicated team of professionals at the end of life. Because my greatest dream for decades has been to help create a world where each of us is able to die surrounded by loving support. Because I have dedicated my life to providing that kind of companionship for thousands of persons.
And “everyone” does not simply include folks who look or believe or live as I do.
Everyone means everyone.
African Americans use hospice services at far lower rates than whites and are more likely to experience untreated pain at the end of their lives, according to Duke geriatric researchers.
If you have been unaware of this news, here is a very basic look at the issue. And this article provides more information to consider as well as links to similar conversations about end of life care for Asians and Latinx folks in the US.
I think that each of us working in end of life care must ask these questions. But so too would it for wise for everyone involved with our entire healthcare system to ask these questions -- both those providing care and those receiving it. By beginning to ask the question my colleague used to call our conference attendees out -- Who is Missing? -- we call ourselves in. We call ourselves into the discussion, where we belong. We enter an investigation that can change the world not just for persons of color but for each of us. That question leads to so many other questions, many of them beginning with the word “Why”. Why has this happened? Why do some people deserve better care than others? Why do we treat people differently based on how they look?
Beginning to change this, to ensure that each of us has access to, education about, and is welcome to receive end of life care, requires that we approach this calamitous problem in critical care from a multitude of directions. Some of the questions essential to investigate are:
What are the institutional obstacles to persons of color receiving quality medical care?
What are the assumptions held by professionals in healthcare, conscious and unconscious, that prevent us from offering the same kind of care to black patients as they offer to white patients?
What beliefs might persons of color hold about our medical care system that prevent them from availing themselves of end of life care?
What cultural forces stand in the way of black people seeking hospice care?
What must be done to change the diversity of persons in healthcare professions?
My first hospice patient, whom I met nineteen years ago, was a black woman. I never called Violet my “patient”, because we did not use that terminology for folks receiving hospice care then. We used to call them “clients”, which reinforced the truth that we were hired to serve them. There are many things to be said about the medicalization of end of life care; no doubt I will share some of those in this and other spaces soon.
Both terms -- client and patient -- are problematic and may each demonstrate a substantial element in the disparity we find in end of life care. “Client” indicates a business relationship, one in which someone pays for goods. The economic inequality caused by racism and white supremacy is well-known but not being transformed quickly enough. And “patient” signifies a relationship embroiled within a healthcare structure that has not only been affected by systemic racism but has reified that same systemic racism.
Because my role is to simply sit with folks on hospice, to witness their experiences and listen to their stories, sometimes to pray with them and always to companion them, neither label really feels appropriate to my work. Instead, I call them my friends.
And these days, I must ask of this group of friends the exact question I need to ask of all the friends in my life:
Who is missing?
And once I notice whom that may be, it is my responsibility to find out what I can do to invite those missing to come sit with me and to honor their response.