A Canadian reader asked me to ruminate on something I refer to in Notes from the Waiting Room’s how to advocate section—that we can’t afford to lose the first week of a terminal hospitalization to confusion—hanging out not believing what is happening and not believing what isn’t happening.
Making the world in a week’s time is a potent mythological symbol we encounter early in life. What does it take to unmake a world?
Sometimes a world is unmade in less than a second. When it comes to dying I’ve come to appreciate instantaneousness; as awful as the shock and results may be, a quick exit precludes the drawn out process that dying medically has become—still the systemic and societal default—and the gargantuan education and effort required to increase one’s odds of dying in peace in the face of those defaults.
I occasionally offer the thought that as rotten as my parents’ three-week terminal hospitalizations were for our patient-family, we were all comparatively well off: my folks remained fully independent until their medical crashes, Mom and Dad were 80 and 84 respectively when they died, and as a family we escaped the co-debilitation of years-long cognitive decline (only because they didn’t have cognitive diseases).
When reflecting on my experience of two terminal hospitalizations, as different from each other as possible regarding their medical courses, several constants emerged. Among them was the loss of the first week. By “loss” I mean that we innocently allowed a range of things to happen because we were naive—and shocked. We were so shocked that we couldn’t orient ourselves to reality. Writing this now, roughly nine and seven and one half years from those hospitalizations, I think “jeeze, why’d it take you guys a whole week to begin coming to grips with the deficiencies that evidenced themselves and cascaded for a whole seven days?”
I’ll tell you, and save you a future psychoanalysis bill in the telling: blind, childlike adherence to the notion of receiving care.
Care: A Four Letter Word
I broach this in Notes, but now it’s some years on and I’ll go further in examining the trouble this word, and what’s behind it, wreaks. It’s a sacred cow that I’ve come to know, in my bones, truly needs slaughtering (sorry for the gory metaphor).
We know what care is assuming we received it as children. It’s so simple, and needs no further explanation. That ‘care’ is embedded in the very name “health care” (when/where did this phrase arise?) makes stopping using it challenging. I advocate that we replace ‘care’ with ‘treatment’ because that’s what medicine offers. I feel frustrated that I can’t get even my fellow patient advocates/activists to stop using ‘care’ and start using ‘treatment.’ This cohort includes people harmed far more deeply than I. I don’t understand why the whole crowd doesn’t voluntarily make this shift because they don’t suffer other medical myths gladly.
When care is not forthcoming, and we’ve been both bred and advertised to for a lifetime to expect it, and common decency requires it, its absence in situations clearly deserving of it just doesn’t compute. Week #1 is thus a huge disconnect, and unfortunately it seems to take the whole time to begin assessing, accepting, acquiescing, and adjusting to care’s absence. Then, and only then, do we begin getting down to the business of trying to mitigate (further) harm to our loved one.
It’s past time to reclaim ownership of ‘care’ and to eat, so to speak, the sacred cow that medicine’s grip on it represents. Yes, true care is an emotional component of why young people may enter medicine. But the idea of care as something uniquely medical, owned by medical providers, is not only false, it’s irrational.
Everyone cares, at least everyone with a conscience. Most of us are competent. Most everyone in every field brings caring competency to their work and interactions, and results prove it. Perfect art and music, skilled argument, stout construction, quality auto repair, and on and on all represent caring engagement. And then we have the irony that medicine builds its identity around delivering care, but doesn’t.
Some providers may take offense at the idea of someone taking away their exclusive ‘right’ to use and own ‘care’ as a descriptor of their world and actions. Sorry, folks: you’ve got to earn it, earn it back, and even then it’ll be both conditional and non-exclusive. And it’s far less about you than about we patient-families, for the reasons I’ve explicated, because inaccurately using this term is one causal factor leading to shock, harm, and death.
Misunderstanding that ‘care’ is absent, and not knowing why, and having never examined medicine’s proprietary claim on the term, is the crux of our dumbness during week #1.
Seven Days and How to Live Them
The pain emanating from the first seven days of a terminal hospitalization gone bad is of personally mythological proportions. The seven day descriptor is functionally accurate although I couldn’t say if we started waking up on day 6, 7, or 8. What matters is the full meaning and impact of entering a hospitalization and not knowing anything about how to advocate there. In my experience that impact is like aiming for the moon but being off a degree, so that once you’re 384,000 miles out the moon’s “over there” instead of in your landing sights. “Bye-bye.” I think it takes a full week because within it we experience the full range of hospital time’s emotional tides as we our hopes float through the main workweek, hang up late on a Thursday, crash late Friday, and in our stunned weekend shipwreck we begin to reconnoiter.
San Francisco medical anthropologist Sharon Kauffman showed that death is timed in hospitals and that the average timeframe for a hospitalized demise is three weeks. So it ain’t rocket science to realize that if you lose the first week—and you will if you don’t know better—you’ve lost 33–39% of your loved one’s remaining life. And that’s the best part of their remaining life; after all: they’re dying.
You haven’t lived a slower, more nerve-wracking week than one at and around the hospital bedside of a seriously or terminally ill person. In my experiences, week #1 sets the trajectory; week #2 goes some distance, and week #3 or what you use of it is when you and your love one crash land. These weeks drag on, and if you haven’t lived them I can’t truly describe the experience.
Assuming you can’t avoid the scene (for example, my mom experienced sudden respiratory failure while in a facility clinic awaiting heart arrhythmia testing and was intubated in the ICU lickety-split), here’s my best guidance for how to deal with week #1:
• Proactively query every doctor on the case about more quickly determining what’s wrong. A week is a long time to languish, hospitalized, while medicine tries to ascertain the root medical problem(s) and your loved one is exposed a range of malfeasance, medical harm, and systemic buffoonery. This guidance is more question than not, because I have the lingering sense that accurate diagnosis, especially in my Dad’s case (nosocomial MRSA) might have occurred sooner than at the end of a whole week, and there will always be a zillion variables.
• Go ahead and run the risk of sounding morbid too early: express whatever you want to express as if your loved one may die. Serious hospitalizations manifest their seriousness pretty transparently, and if your elderly parent is the patient, and they’ve had a number of hospitalizations during their last 5, 10,20 years, and if s/he is managing a range of medically complex conditions (“co-morbidities”), any one of which could end up being a cause of death—do not wait to commune, for s/he may dwindle rapidly, to the point of unavailability, during week #2.
• If you’re reading this, you are a PRIME candidate for seriously schooling yourself about how to advocate medically. Start by reading books by lay people who’ve been through the wringer and cared enough to devote the time and and bear the cost of writing and (independently) publishing advocacy how-to guides. Read the books by myself, Jari Holland Buck, Julia Hallisy and Helen Haskell for starters. Assess books by doctors to quickly eliminate those evidencing a primary tone that says “mia culpa” (“now that I or my spouse have become a hospital patient, I see the error of my former ways”). Look for incisive guidance in any book by a doctor, and keep your BS meter turned on—you’ll know unrealistic ‘guidance’ when you read it. Peruse my bibliographies (in print and online) for what I assessed as the Best of the Best. Bedside/medical advocating is a broad and deep topic; be ready to take on that role, for readiness is the ONLY way to lessen the odds of losing that first week—which could be 1/3 of your loved one’s remaining life.
Do these things and week #1 will likely be busier than if you didn’t, because you’ll be engaged via empowerment, to the best extent your awareness and the overall conditions allow. And, it’ll be relatively more peaceful than if you hadn’t, although I use the term with some reluctance because the whole scene will be far from peaceful.
That first hospitalized week sets your trajectory: to treat or not to treat; to continue or to bail (hopefully under hospice care which offers the real possibility of a peaceful rest-of-life, as long as you don’t wait so long as to make a hospice transfer so short that the opportunity for a peaceful demise is lost); to commune or perhaps to lose the last continuous days of your loved one’s availability. Go in blindly and it’s likely that your world will be unmade in seven days, and take another fourteen to disintegrate.
Note: although my work emanates from my experience of two terminal hospitalizations, these ruminations on how to advocate medically pertain equally well to non-terminal hospitalizations.