[Editor’s note: The following was originally published in the March 2023 newsletter of the North Sound Collaborative Action Network. This has been published with their permission.]
In mid-February, former President Jimmy Carter opted for hospice care, and the media immediately began writing eulogies and obituaries, as if entering hospice means that death is imminent. In the statement from the family, “the decision was made after a series of short hospital stays.” It reminded me of my dad, who also chose hospice after a hospital stay where he realized that for him at 96, there was no cure for what was happening with his body. He wanted to be seen as a whole human being, and not as a patient who was dying. He wanted to live the rest of his life in peace, with family, in comfort, surrounded by caring individuals. He enrolled in hospice and lived for another 16 months. Eight years earlier my mom also chose hospice, but she had to advocate for it within her health system, and was so relieved after doing so. The reason she had to fight for it: her clinical team was afraid that she would give up her will to live if hospice was presented to her as an option.
I think sometimes we forget that being inside of a medical-treatment and cure-focused system is exhausting and takes its own toll on those who want a more peaceful arc to their lives. I’ve been thinking of the Carter family a lot this week, especially with the more recent news that the former president is ‘doing well’ in hospice, and I applaud their bravery in sending these messages out publicly.
How does this relate to North Sound ACH and its themes of belonging, targeted universalism, and equity? It is about how we belong to and with another, how we provide care and nourishment to each other, and how we make each person be seen in their total humanity, leaving space for our uniqueness and our commonality.
Imagine if we could do that in all facets of our lives, not just the final days, but every day? If those themes of caring, without thinking of cures, could extend to our policies around housing, employment, food security, immigration, transportation, health, and yes – even health care. If we can bridge themes of leading with belonging, humanity and love, we can accomplish so much more than by crafting more boxes, eligibility criteria, and rules that allow some people access while denying access to others.
Our histories differ, our current situations differ, and our access to meeting our vital needs differ. What we hold in common is our humanity, the fact that we are here and part of the fabric of our communities, and we will not heal if we allow portions of that fabric to continue to fray. For us to create a space where all belong, we must truly see and welcome everyone in the common space.