It is not uncommon to hear about disappointments in Hospice Care at home, even though surveys show that 80-86% of people say it is their preference to die at home if faced with a terminal illness. It’s been explored in this newsletter before that most barriers to making this happen are not medical. It is the day to day care, caregiver burn out, and then ultimately perhaps a lack of familiarity with changes in the body and the kind of support needed at the end of life. How can family and caregivers know if they are up to the task, when they haven’t been told what to expect, or even if they have been told, have never experienced anything like it before? In those cases, wanting the environment of a nursing home or inpatient hospice for your loved one seems like the more compassionate choice. We tell ourselves, “I’m not capable. I need to leave it to professionals.”
Even professionals can fall short. Just last week, NPR reported HHS Inspector General Finds Serious Flaws In 20% Of U.S. Hospice Programs. Government inspectors cited 87% of hospices for deficiencies. Time and Kaiser Health News published their findings of an investigation that revealed situations where family members and caregivers felt unsupported by their home hospice agency, resulting in last moments at home appearing horrible and traumatic for those sitting at the bedside. In one harrowing anecdote, a loved one was told bluntly, “No one is coming.”
The death doula movement encourages an increase in the number of non-medical, trained guides who are familiar with the dying process. People who are familiar with end of life issues either through personal or professional experience, can act as resources in our own communities to make it feel less like we have to do this alone. Numerous links to books, local businesses, and online resources have been shared in previous editions of this newsletter.
Yes, we can and should continue to advocate for improvements and funding for the medical side of hospice care, and healthcare in general. But that does not mean we are powerless in showing up for one another right now.
At the last potluck, Gabriel was asked if the feeling of suffocation was common at the end of life. He was able to share his experiences as a hospice nurse, describing how body systems fail, and what we may perceive on the outside as “suffocation” can be the normal process of dying. Other concerns might include the fear of hastening death with too much medication, or on the flip side, not enough medication and prolonging suffering. It is up to us to not shy away from questions and fears, and make sure our friends and family at least know our wishes, if they aren’t in writing.
What can we do to empower ourselves and our communities in this less than ideal world? It can begin with connecting to your community, way before a need arises, and not shy away from issues of disability, aging, illness, and death. It can look like factoring in Universal Design and accessibility to your construction and remodels, regardless of your or your current friend group’s ages and abilities. It can look like being willing to be vulnerable and ask for help from your circles, and be willing to expand those circles. By fostering relationships and connections early and often, we may be surprised at who steps up to share time, resources, skills, knowledge, and experience. They will be coming.
A view of the inside of Erik and Yvette’s Carrot Cake