The Unopened Invitation: A call to our communities about support at life’s end
The end of life can carry with it many challenges. Journeying alongside someone who is dying can also be incredibly arduous, with effects that extend far beyond the moment of death itself.
As if either burden were not enough to carry, death even tests some of our most deeply held beliefs about life. Like a bulldozer through rubble, it can reveal our beauty, compassion, fear, and pain in ways that might otherwise remain hidden behind the veil of less definitive circumstances. Whatever it reveals, none of us truly understand it until we face our own mortality or are thrust into the role of caregiver. In the meantime, as we exist on both sides of this experience, loved ones do their best to meet uncertainty together.
Death doulas seek to support these moments, joining communities as we walk the path we must all take, despite it being the one we least understand.
In what is referred to as “death-positive” culture, we sincerely aim to honor the role that death plays in the human experience. We respect the process seemingly written into the code of nature for all living beings, and we seek to offer education and awareness that reduces the stigma and fear associated with it. As doulas, we honor that death is no less significant than our entry to the world at birth. While we respect the nature of life’s cycle, we simultaneously honor the struggle it can engender. The sacred process of death can never be generalized or simplified, for in doing so, we dishonor it. Instead, it is so important to acknowledge that, for those who have loved and live on, death takes on a dynamic persona. Our feelings about it can, and most likely will, change over time. From making peace with endings, to warring with its unfairness, death challenges us in ways we can’t prepare for. This is why support is paramount and accepting care is equally as essential.
The limitless expanse of human experience in relationship to death, reminds me that presence is a most essential gift in providing care. I have a saying: “Hands Open, More Empathy,” which I use to spell out the acronym H.O.M.E. When we engage sincerely in support, I believe that we can help create a shelter for one another when times are anything but certain. However, it is never easy. Despite providing safe space, we must also acknowledge that healthcare practices have created fearful experiences for many that prevent the acceptance of available care. The past has left deep wounds of distrust for some, that impact how they engage death care services—even if those servicescould be extremely helpful.
Medical mistrust among African Americans, for example, has deep historical roots.
Abuse was ingrained in their experience, from the “Mothers of Gynecology” (Anarcha, Betsey, and Lucy), who suffered nonconsensual and unanesthetized medical procedures, to the U.S. Public Health Service’s Tuskegee Syphilis Study, to the exploitation of Henrietta Lacks’s cells and other traumatic experiences. Fears of abuse have also been reinforced by documented unequal treatment in healthcare and research. Empirical studies link this legacy, along with ongoing provider bias, toconcrete harms: Black patients are less likely to receive adequate pain assessment and treatment, and some clinicians and laypeople still hold false biological beliefs that contribute to undertreatment (Hoffman, Trawalter, & Oliver, 2016). The historical and contemporary factors help explain why outreach for end-of-life and palliative services must prioritize trust-building, culturally competent communication, and partnership with trusted community leaders to improve access and acceptance.
“To all my colorful brothers and sisters across all races, there is still hope in a world of marginalizing experiences that leave people feeling unseen, unsupported and unwelcome.”
There are services available that we sometimes miss due to lack of access or awareness, but we can change this. We can build communities that are bolstered by care and a deep honor for life. I think this starts with genuinely active care and authenticity. By “genuinely active,” I mean showing up and spending time in ways that respond to the human being and not simply to the failing body. Humans thrive on love, and I believe that all families deserve support that honors their experiences and personalizes presence in a meaningful way. As a doula, this means addressing my own fears, realizing that I do not have all the answers, and coming with a heart prepared to hold space—one that has been expanded intractably, for the love for my neighbor. I strive to bring that heart to the kitchen table conversations, laughter at the bedside, intentional silence in moments of deep reflection and reckoning, and even a simple yet powerfully stabilizing hand—or gaze, held.
It’s about being with someone and sharing time, not just because they are dying, but because they are living!
You both are experiencing meaningful human moments together. As the veil of separation lifts between the caregiver and the person who is actively dying, we can tap more deeply into what makes us genuinely human. That, in my view, has the power to not only shift perspectives, but to powerfully transform patterns of behavior in a difficult world.
Our human legacy throughout life’s stages is created by the living, for the living. We do this in large part, because we die. My greatest hope is that we, as people, learn to give ourselves more permission to journey together. That we may consecrate our shared moments without feeling as though we are making a pact with giving up or letting go. There is no love like that which is lived and expressed, and life is never more bearable than when we move through it together. To have an end-of-life doula is to have a partner in the challenge of holding your loved one close. Whether we continue living or pass on through death, our willingness to be held and supported need not be challenged by the beautifully natural, and very human fears that come with often unwelcome, and life-altering change.
References:
K.M. Hoffman, S. Trawalter, J.R. Axt, & M.N. Oliver (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites, Proc. Natl. Acad. Sci. U.S.A. 113(16) 4296-4301, https://doi.org/10.1073/pnas.1516047113.
