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On Justice, Resource Access, and End-of-life Care

photo by Noemi Jimenez @ Unsplash

I've been thinking.

There are lots of windows that open into a dialog about social justice, diversity, and access to adequate end-of-life care. For context, here are a few examples of conversation starters:

  • the intergenerational have/have-not consequences of good death care

  • end of life care for people without access to family support

  • ongoing harms caused by systemic racism in American medicine

  • respect for transgender & genderqueer people's names/pronouns/bodies

  • access to affordable funeral options

  • culturally appropriate bereavement support

In my version of a better world, every death care practitioner (in ALL related professions) would have ongoing training for dismantling white supremacy, developing multi-cultural fluency, and understanding the impacts of social class on healthcare access (because if you've never been poor you have no idea how hard being well is, let alone dying). But we're not there yet. We are barely having the conversation, because it is uncomfortable and takes time. We have to do better. Because when we lean in and listen well, sometimes what might be a miserable ending finds instead a path to a redemptive lift.

In the Fall of 2020 I had a call with a woman who had read about death doulas in a magazine article and went looking online for someone to help her. She explained that her elderly mother with cancer and late stage dementia was in a nursing home in another state. She was prone to combative outbursts towards facility staff and her two children alike. She often accused her caregivers of trying to kill her. It was a 5 hour drive each way to visit. Every two weeks she'd make an appointment to sit with her mother for 15 minutes, outdoors with a covid-safe plastic barrier between them. They could not touch. Her mother had trouble hearing and was confused by the separation which caused her to rage even more. I said to my new client, who was weary to the bone, “Cognitive challenges aside, it is not irrational for an elderly Black woman in the United States to fear for her life while residing in a health care facility.” To which her daughter replied, “Oh good, I don't have to explain to you.”

And then, because she had called me for holistic doula support, we explored ways she could anchor her own well being while she navigated the treacherous shoals of her mother's end-of-life care and transition. She made an action plan that included getting her mother evaluated for and established on hospice care (which the daughter had not known is available and covered through Medicare for patients in skilled nursing facilities). And because she described feeling constant anguish and guilt she made another action plan to buy herself flowers more often and to set aside a few minutes to light a candle and listen to favorite music and take a breath, to remember her mother whole, and be grounded for a while in the blessing of enough.

We followed up once via email, and then my next message bounced and because we are living in the 'covidiverse' I got worried that she had become ill. I hoped I would hear from her again and then one morning a few months later I got an email:

Thank you Dina. My mom passed peacefully yesterday in hospice at a nursing home. I’m so glad I took your advice and got her hospice care. They allowed me in to see her as of Thursday last week because they said she was in the transition phase. I visited every day until the end. On the last day, someone from the nursing home called my brother and said the end was near, so I got there as fast as I could. I was there about 2 hours before it happened. Her eyes were open (they were closed in the days before) and she just took fewer and fewer breaths. I was the one who informed the nurse to get the PA. We listened to gospel music. Thank you for explaining the benefits of hospice and for sending me supportive energy.

The respected Hospice elder and death educator Barbara Karnes reminds us often that until last breath we are living. As a death doula my work is to remove obstacles and reduce suffering as people navigate the liminal shoals at end of life. With a growing understanding of the inequities built into American health care delivery and the crushing impacts of systemic racism on patients and the families of dying people, I hope to contribute to better care, to more just (and gentle) deaths.

Every person deserves the best quality end of life care. Systemic bias', racial hatred, homophobia, and economic terrorism place a heavy burden on people who are not well and whose resources are already spread thin. It is therefor incumbent on health care providers who are not racist, transphobic, anti-gay, classist, or misogynist to make ourselves obvious so our people can find us. This choice, not hiding, makes us vulnerable and available, engaging us in radical kinship. It shouldn't be a happy accident when our clients don't have to explain that racism in health care is a deadly thing. Each dying person deserves practitioners who will advocate for best care and provide resources that mitigate and mend systemic harms. Because, until last breath and beyond, death work is in service to the living.

Resolve obstacles ~ reduce suffering. In this way the world is mended.

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