Understanding your audience

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.

Photo by the Author

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.

Hi, nice to meet you. Let’s talk about death.

I’m here to talk about death. Yours, mine, the deaths of people we know and love. The common experience that all of us are going to have (unless you are a Greenland Shark, in which case please keep the smug comments to yourself) sooner or later. We will talk about how to think about and plan for your own demise, and also offer help and advice in caring for loved ones who are dying. I want to cover the stuff I think it is important for you to know even though you don’t know it yet, the stuff that you think is important, and the stuff you may think is important that isn’t as important as you thought. Do I have a point of view? Oh HELL yes. I have so much POV that I need several semi-trailers just to store them in between rants. But the most important part of my job, and the job of any of us caring for others is that our POV is irrelevant most of the time because our role is to be supportive of the family and the patient. We need to understand our views and prejudices, our beliefs and fears – but that is so that we can recognize when they might be trying to assert themselves inappropriately. We are here to witness, to support, to share our knowledge and expertise in the mission of providing comfort and peace to the dying in their own terms. Of course this is my blog so what I am going to share is a LOT of my POV and opinions. I am going to do my very best to offer plenty of examples and quite a few of those will illustrate alternative views and unexpected or even undesired outcomes.
My goal is to post starting with an intro to the concepts and what they look like in the US (which is what I am familiar with), discussions of advanced directives, discussing care plans and talking a lot about common misconceptions regarding medicine and end of life care. Then advance into some specific discussions about what the end stage of various disease processes look like, what things we watch for in each case, and particular symptom management (in a general sense). General caregiving tips and things to watch for and recognize as the dying process progresses. The biggest thing you are going to see is weasel words. So. Many. Weasel. Words. Because YMMV does not even begin to cover it. I will also provide resources and links to help both before and after a death. I feel very strongly about my responsibility not just to my patients, but to families and loved ones. I have seen again and again how the experiences that folks have, especially traumatic ones, become a part of the fabric and lore of that family. Misunderstandings or bad experiences become the wisdom that families use to make decisions later on. So it is important to me to point out and explain things that I have seen misinterpreted in the past.
Things I won’t talk about: specific patients or any experiences of family, friends or acquaintances without specific permission. Any cases I discuss will be composites of patients with all names changed. I do not get into discussions about “what is the worst death”, “what is the worst you have seen”, “what diagnosis would you kill yourself if you got” or any such nonsense. Because A. That is nobody’s business and B. Why the HELL would I scare people who might get whatever diagnosis I spouted off about? Besides, my job is ensuring people are as comfortable as they choose to be (more on that later) no matter what their diagnosis is. Part of my responsibility is to consider everyone who is listening to what I say and how the information I provide is going to be carried forward in their lives. This will come up again in discussing advanced directives.
My other goal is to provide a place to ask questions and look for resources. So please feel free to comment. Comments will be moderated for relevance, content and respect. So don’t be a dick. And take a look at the ‘about me’ as well as the disclaimer page.