Like many folks in professions that deal with death and emergencies, I am prone to gallows humor. When discussing starting this blog, I was reminded that sometimes my audience has a much more immediate and personal reaction to the subject at hand.
Which leads me to a story of a failure on my part that still bothers me today.
I was living and working in end of life care in Native Health in Alaska, helping to put together some protocols and resources in home care. We were doing a lot of education and teaching, and I was asked to do a presentation for the annual meeting of the Village Health Aides who were gathered.
Village Health Aides in Alaska villages are something special. They function as somewhere between a Medical Assistant in a doctor’s office, a Paramedic, a midwife, a pharmacy tech, plus whatever else is needed. These folks are often the sole medical trained people in a village, and are supported via telephone or computer to a doctor and RN in Anchorage. Some villages will actually have an NP or PA, but many have only the Health Aide covering it all.
Because more and more people from the villages were requesting to be allowed to go back home when they were told they were terminal, Aides were needing more help and information on caring for them at home.
I am very enthusiastic about what I do. I love being able to care for people at the end of life, and to help families do the very hard work of caring for folks at home. When I did the presentation to the gathered Aides, I provided a lot of information with great enthusiasm. I addressed them as fellow caregivers who were going to be going into homes and helping out families to care for a dying patient. I discussed what potential crises they should keep in mind that they might not want to share with families but should be aware of. My talk was not dissimilar to one I was giving to those we were training for Hospice Nurse Certification.
It was an unmitigated disaster.
The organizer informed me that they had multiple complaints and never wanted me to return. I had someone come up afterwards and tell me how traumatized everyone at the table she was sitting at had been. I had screwed up completely. Why? Because I failed to understand who I was talking to . Yes – these folks are the medical providers in their villages. But more importantly, these are the mothers, sisters, children and relations of their patients. All the people they take care of are folks they have known their whole lives. What they needed was what I would offer for family members, and the reassurance of having someplace they could contact if they needed help. Not a deep dive into the various specifics of end stage disease processes. Because one of the differences between us as care providers and the caregivers themselves is that we get to go home. We can sit down on the sofa, scratch the dog, and decompress from our day – even if that day has involved attending multiple deaths, and patient visits.
All I can do now is try to do better. What you will mostly find here is intended to be addressed to those who are caregivers. Although there will certainly be stuff that I think will benefit care providers as well! And I will do my best to keep my enthusiasm for my subject within parameters of good taste. Mostly.