Hospice and the Type One Error

In Permaculture design, a Type One Error is an error which is so essentially wrong that no amount of time, energy, effort, or creative genius can completely overcome it. The only way to really beat a Type One Error is to start over. There is a Type One Error in how we do Medicare hospice care in the United States of America. The error is that hospice is a specialized healthcare ghetto outside of medicine’s bustling shiny downtown.
In broad strokes, what happened was that when hospice came to the States, it was such a good idea--such a basic, natural, obvious, low-tech response to terminal illness--that the established healthcare system couldn’t grok it. In second-wave feminist terms, it was a feminine response—creating a safe, supportive space for a natural process; life completion and dying. The dominant paradigm in western medicine is still masculine—to do, to cut, medicate, analyze, atomize, and generally “science the shit out of this.” (Yes, “science” IS a verb.)
So, hospice grew up as a largely volunteer enterprise, composed overwhelmingy of women health care workers, and took compassionate care of the dying. The AIDS epidemic hit, and hospice stepped up while much of the rest of healthcare was still wringing its latex-clad hands. Coming into the field of end of life care three plus decades later, as I have, sometimes feels a lot like coming to the party after the beer has run out and the cool kids have gone home. In the early days, hospice was a movement. Now it’s a business.
 Left to struggle as a volunteer enterprise, hospice might eventually have been integrated into our general health care, giving the health care system a kinder, gentler, whole person approach to wellness. What happened instead was that Medicare saw the cost savings benefits of hospice, and created care standards for hospices that wanted to receive Medicare payment.  (There are still some excellent maverick hospices that don't rely on Medicare, or use its guidelines, such as Heart of the Redwoods in southern Humboldt County.)  This would seem to have been a big win, and there were some excellent provisions in those Medicare hospice guidelines (like providing spiritual support and the use of volunteers). However, this is also where the Type One Error was institutionalized—hospice grew up structurally outside the rest of the healthcare system, creating the End of Life Ghetto.
To my chaplain’s mind, there are two particularly regrettable effects of this ghettoization. The first is that folks facing life limiting illness have to have an almost complete change of care system just when they are facing the irrefutable reality of their mortality. This is adding insult to injury in the worst way, and is frequently the reason that people don’t transfer to hospice when they are eligible, but much later, or not at all. The second consequence is that the rest of healthcare gets to cluelessly continue being focused on doing to, chasing cures, and generally participating in a medical culture of death denial, leaving palliative care practitioners (including hospice) to do the heavy lifting. When I was five and went to the children’s theatre, if was fun to clap our hands until Tinkerbell was restored to health. Doing the same thing with chemotherapy to a terminally ill patient is appalling and irresponsible.
 If Whole Life Care were a core healthcare ethos, an oncologist looking at lung cancer which had gone to create lesions on the bones would consider, “Do I have any treatment options that would meaningfully contribute to quality of life for Mrs. Terwilliger? How do I ask her what her goals are, and what matters to her? Her daughter asked about our home care program last time they were here, so maybe she’s ready to hear that it’s time to start that going. In any event, I will tell her that I will still be her doctor even if she’s not undergoing cancer treatment.” If Whole Life Care were a priority, the economics of healthcare would support patient-centered approaches, rather than tending toward billable services, however little value they might offer the people we label “patients.”
Now, if you’ve ever lived in the ghetto (remember that song?), you know some things that the uptown folks don’t know (and suburbanites can’t dream of). There’s all manner of cool stuff in the ghetto that you don’t find anywhere else. There’s old houses with good bones where four generations of one family live. There’s ethnic food vendors owned by ethnic folks who are feeding their own family out of that same kitchen. There are repair shops, ‘cause if it’s broke around here we fix it. There are guys building a custom car over there, a vacant lot being turned into a community garden over here, and parents making a local daycare around the corner. You can hear exotic languages spoken here at full voice, and religions practiced that might look somewhat bizarre to the average Presbyterian. ("Animals were quite definitely harmed in the making of this ritual.")  The ghetto is full of beauty, mystery, community, possibility, strength, struggle, vision, suffering and joy. The value of life is known because life isn’t a given.
The End of Life Ghetto is like that too. Oh, it’s a function of a Type One Error, sure enough (all ghettos are), but it’s a magical place as well, where old hurts are healed, where love is expressed in a thousand ways every day, and the admonishment to Be Here Now is a mantra so obvious that it doesn’t ever need to be spoken. When we face our mortality; when the ego finally knows for certain that it is not really the boss of anything; human liberation of the soul becomes a whispered explosion which enriches all who are willing to travel here with hearts and minds wide open.
When we build, we build, we build, we build the New Jerusalem, there won’t be no more ghetto, ghetto at all…” the song wails. When we build a proper, human-centered healthcare system, hospice won’t be the other side of the tracks, with palliative care building a bridge to get you there. But for now, hospice is a brave new world, so when the time is right, don’t let anyone you love miss it.

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