The following is a 750-word op-ed that originally appeared in the Boulder Daily Camera on 4.8.12. At first I didn’t think I could condense a day-long conversation into 1150 words (I mimicked the word count that paid freelance columnists get). I did—but papers really do enforce their word counts for you and me so that they can offer more voices overall. So I went at the 1150 words like a hacko-wacko, ripping sections out practically with abandon literally within several minutes. And was amazed at the end: a tight summation of the most salient things we need to know to orient ourselves towards a peaceful demise.
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Why Do We Buy Off-the-Shelf Dying?
Ninety percent of us say that we want to die in peace, at home. Most end-of-life guidance suggests only that we express our wishes to our loved ones and medical proxy, writing directives via two (of seven primary) related legal documents: an Advance Directive and a Durable Medical Power of Attorney.
These challenging actions are presented as, and believed to be, sufficient to secure a peaceful demise. It ain’t necessarily so. Conversations and directives are crucial steps everyone should take. Nonetheless, it’s easy to overshoot one’s exit to a peaceful demise due to chance, shifting events, errors, even design. To increase the likelihood of dying peacefully we must know things about which medicine knows but does not, perhaps cannot, advise us.
In 2004 my mother experienced sudden respiratory failure. She was quickly intubated, placed on a breathing ventilator in an ICU. She died there after 3 weeks, treatment having failed. Fifteen months later Dad wanted to return here from Florida to live near his children. He scootered himself into a hospital, accredited as among the country’s 100 best, for cardiac pacemaker eligibility testing. While there he contracted a hospital-acquired urinary tract MRSA infection which spread to his blood and painfully lodged in a wrist. Dad’s demise also took 3 weeks to unfold; days pass in confusion, “hospital time,” and awaiting diagnoses. Both hospitalizations were trouble-prone even with advance declarations decrying heroic treatment (a moving target).
Seeking to understand how and why we failed, I worked backward from the goal: to die in peace. Key things I’ve learned include:
• Medical anthropologist Sharon Kaufman has shown that “death is timed in hospitals” (And a Time to Die: How American Hospitals Shape the End of Life). All parties involved—providers, insurers, patient-families—play well-known roles that consistently unfold over 2 to 3 weeks despite myriad variables.
• Lay people think of resuscitation technology only as emergency intervention. It’s actually three things on a very slippery continuum: life support, standard operating procedure (literally, during surgery), and—this is the crux—treatment, whenever providers deem it so and we accept it as such. Medicine imposes first responder, surgical requirements, and bedside inclinations about this.
• Respected reports (Institute of Medicine, 1999; Healthgrades, 2004; U.S. Dept. of Health and Human Services, 2011) identify institutional medical error among America’s highest causes of death, and accelerating. The wrong error can put the kibosh on any patient-family’s advance planning.
• Failure to recognize medical milestones derails our wishes. During our last decades we utilize medicine repeatedly to restore quality of life and save life. When we understand that we’ve already engaged in heroic measures over 5–20 years we might not feel impelled to do so again at the risk of ruining our chance to die peacefully.
• You don’t have to slog through curative treatment to wait for a doctor to reluctantly suggest a palliative consult; you can ask for one anytime.
• Let hospital chaplains know you’re admitted, simply to get on their radar. They can readily intercede on our behalf, cutting through confusion we and our proxies typically experience—before crises intensify and drag on.
• Medical advocacy is much more than being a second pair of eyes and ears (that’s just witnessing). Take a workshop, or read, and learn how to succeed in this vital role.
Is it fair to expect medicine and hospice to explain all this? I don’t know. But they don’t, and we remain confused. So we buy “off-the-shelf dying”—troubled deaths so routine in medicine that they’ve become an experiential commodity (we don’t realize this because we’re not often in the market for dying). While we gratefully welcome palliative and hospice providers’ help, the unspoken subtext is that they’ll save us from dying badly. We risk that the saving will be incomplete—trying to soften an end of life train wreck because we’ve jumped the tracks despite our advance intentions. We must engineer our own train; to slow and exit onto a siding where palliative and hospice folks can help us disembark.
Thus far no part of medicine has found the words, will, wisdom, or bandwidth to convey all this to lay people in an advance package. We typically learn through bitter experience. “Don’t ask, don’t tell” makes for anguished deaths. Each of us can change that.