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Compassion & Choices President Barbara Coombs Lee made a comment during an end-of-life (EOL) panel discussion that resonated fully: to help more people die in peace we need to “redefine the standard of care at end of life.”
Think about this. Redefine the standard of care at end of life.
This compact statement is everything required to support us all in achieving the peaceful demise virtually all of us say we want, yet barely an inverse number achieve. It’s so simple, and so profound.
Barbara’s phrase takes the act of redefining language—my launching point when conceiving and discussing how to advocate when hospitalized, and how to achieve a peaceful demise—to a fully dimensional place. Because language, no matter it’s power, is less dimensional than action. Language, as powerful as it is in framing our expectations and thoughts, merely informs action. Action in medicine equals treatment. Treatment is fully dimensional. We act on language; we experience treatment. We die, and survivors live, with the results of treatment choices we make, or fail to make.
The advent of life support technologies in the 1960s and development of a home for them (the intensive care unit, or ICU) has its clinically logical extension in the chronic ICU facility, with floors of beds for dozens or hundreds of comatose bodies maintained on life support).
Applying this technology endlessly, some would say mindlessly, at the end of life has evolved into the standard of care. But by whose definition?
The irony of American culture is that we seem to pay homage to the notion of individuality yet in many matters, especially how we exit this planet, we traipse along like lemmings. Medicine has defined the EOL standard of care. By and large citizens have acquiesced to medicine’s definition, even with survivors from family after family recoiling from their experiences.
My mantra bears repeating: we actually have to do something in order to increase the likelihood of dying in peace. I begin to articulate what it is we must do here and here.
Part of my language assessment is that our experience of treatment does not feel like or equate to care. Yet providers believe that the treatment they offer equals care. Now, we’ll never strip the letters ‘care’ from the healthcare conversation, for evident reason. But we can examine and clarify obfuscating language so as not to lose the first week of a terminal (or any) hospitalization to bewilderment over what is not happening and what is happening.
What constitutes the standard of care has been invisible, like the air in a flotation device. The device is nothing without the air, yet we never think or speak in terms of that air, only the floaty. But redefining the standard of care is something we can act on and influence. Because that’s about agreement, and consent or refusal to consent. That’s our personal, social, and legal right. The right to informed consent at end of life is being slowly codified into law. But that’s all about the provider side. What about the citizen side?
THE missing voice from panel after panel about EOL matters is ours: citizens’. By “citizens” I mean informed citizens; patient-family members who’ve been through the forest and have mapped it. Articulate people who’ve transformed from harmed persons into patient advocates or activists. We have insightful comments to add because we have deeply parsed the kinds of experiences you really do not want your patient-family to have.
We’re out here. Some, like me, have been recognized by the Institute of Healthcare Improvement (IHI), a well-respected non-profit responsible for significant advances inpatient safety. Redefining the standard of care requires more than panels of medical and policy experts with no informed citizen representation.
Patient advocates bring a different voice to the conversation. I suspect our voice is regarded as scary by panel hosts (if not many panelists) because it necessarily comes from gut level. This implies real feeling, but does not imply craziness. Ours is the voice of passionate clarification, not the dispassionate voice of the clinic or the legislature.
The simple truth is this: including the informed citizens’ voice in every panel discussion is the first step towards redefining the end-of-life standard of care.