It’s back: that scary phrase, that bald lie: “death panel.” As in, “the United States government will enact or enable panels of bureaucrats who will withhold medical treatment from your grandma or grandpa and let them instead die.” This was a (failed) provision of 2010’s healthcare reform act; now the accusers say that death panels are resurrected by executive fiat.
What’s back by executive regulation is reimbursement of medical providers for their time and expertise in consulting with patients regarding end of life choices and strategizing—this time only for Medicare patients, not for younger people who may be nearing death.
Hmmm. Would you rather keep waiting —say until, on some umpteenth hospital roulette ride, as you crash through those double doors strapped to a gurney—to begin examining matters pertaining to dying and death in the 21st century?
Something else is back: a very straight-talking Bart Windrum. About once a year something trips my trigger enough to cause me to sharpen my verbal edge. Folks, some things are simply too important to beat around the bush about. How we end our lives on Earth is one of them.
The words and idea of death panels as a descriptor with regard to paying providers to share what they know about dying and death is callous. Fabricated B.S. But let’s use the phrase a little bit anyway, since it’s here and we’re all familiar with it.
I’ve served on two death panels. As a family member and then medical proxy, during each of my parents’ three-week terminal hospitalizations. It’s not fun, I guarantee it. And, it’s inescapable. If you don’t do it for yourself, in advance, from time to time, circling closer to medical decisions as your life inevitably spirals towards its natural close, then who will do it? Your spouse or kids? Do you really want them to make such a choice for you? How about the hospital staff and loosely cojoined group of doctors on call for your myriad physical ailments (chances are you’ll have multiple serious-to-life-threatening problems at advanced age)?
Panel: a small group of people brought together to discuss, investigate, or decide on a particular matter (Apple e-Dictionary). The first three people to serve on each of our death panels ought to be “me, myself, and I.” Or, are you waiting for that last gurney ride to begin mulling over how you’d like to exit the planet?
We all say we want to die “in peace” (translation: “at home,” which may or may not be achievable by all). “At home” infers “not wired up,” by which I mean with IV drips, tubes, and serial invasive treatment while awaiting a miracle for an 80 to 90 year old body that medical technology has already successfully kept alive for several *decades* longer on a scale never seen before in history.
OK, what have you done to increase the likelihood that you will die in peace? By “die in peace” I do not mean the moment of death, but rather one’s demise—the overall process and time during which we die. This could range from minutes to years, but for practical purposes I think weeks to months is an appropriate time frame.
How often do you want to roll the dice? Doing so is available to all of us, assuming we’re insured (and at age 65 each of are, under Medicare). From what I’ve seen and experienced, medical dice rolling at advanced age is very dangerous and enormously stressful. If you lose, chances are high that you will not die in peace—at home, unwired (and, I like to add, with the dog licking your fingers). Near the end, the very process of medical dice rolling is the antithesis of dying peacefully.
Do you know that 80–90% of Americans say “I want to die in peace?” My interpretation of available data is that 15–25% of us achieve that goal. Here’s the breakdown:
• 50% die in hospitals
• 20% die in nursing homes
• 35% of those using hospice enter hospice so late (4-7 days before dying) as to indicate that they’ve essentially experienced their demise elsewhere (institutions); they enter hospice for the final period around what’s known as “active dying.” Sorry; 1/2–1 week in hospice is not quite enough, in my opinion and experience, for a patient-family to peacefully experience a demise—especially if those 4 days come on the heels of aggressive treatment and the dying loved one ends up comatose and uncommunicative.
Afraid of dying? Afraid of dying in pain? Afraid of dying not-at-peace? Does anyone think that doing *nothing* about it will provide your preferred outcome?
I call an unexamined demise that unfolds institutionally an off-the-shelf death. As in, boxed and labelled. You might as well hit the store, ambulate down the Death aisle, pick a box type, look for your name on one, and check out. It’ll be there for you, I guarantee it—unless you become your own “death panel.”
Try it! Start reading, learning, reflecting, talking. Find the many books describing how death unfolds medically, in hospitals, how medicine fails thousands (see my book’s bibliography of recommended reading, and see its post-publication expanded bibliography here).
Medicine is our tool, not our savior. I think that rigidly attempting to grab extended life when that life is ending is greedy—especially in light of how many years (decades!) longer many of us now live. Years in which we personally benefit, our families benefit, our communities benefit. Even the IRS benefits! If you choose to be life-greedy, you are gambling against dying in peace. Typically, the “house” wins…
So, in direct terms, our choices are these:
• Hold out for the miracle
• Buy an off-the-shelf death (a mindless, unexamined, default pathway according to the default rules and moires of the technological medical workplace)
• Let someone else be your death panel; saddle your spouse or your kids with this awful choice, or let providers choose your outcome
• Be your own death panel. Map the overall contours of your preferred demise years before you expect to encounter it. Add details to the map periodically. Clue your family and providers as to your inclinations.
Die in peace. And, as I write in Notes from the Waiting Room: Managing a Loved One’s End of Life Hospitalization, rest in PEACE: Patient Ethical Alternative Care Elective—a healthcare reform proposal I set forth in Colorado, 2008. PEACE need not be enacted as legislation in order to serve; anyone can enact PEACE for themselves. The resources are out there a plenty.