“Oh, Peace, bless this mad place!”
Bald Hills Road hits the border of Redwood National Park, and the badly potholed pavement turns to gravel. A dust cloud billows up from the knobby tires of my old motorbike as I head east from the coast toward the Hoopa Indian Reservation. On my magic carpet, this chaplain finds the space to meditate and reflect on what it means to care for the human spirits of palliative care patients in this rural context.
Humboldt County is staggeringly beautiful, culturally unique, and bucolic. At the same time, the average family income is $12,000 lower than the national average. Humboldt leads the state for gun deaths, suicide, car crashes, and strokes. It is second for alcohol related liver disease and drug overdoses. The Netflix series “Murder Mountain” is certainly not a complete view of rural Humboldt, but it isn’t inaccurate, either. Healthcare is the single largest employer in the county, but healthcare resources are woefully inadequate.
Enter ResolutionCare, the dream of Michael Fratkin, MD. I first heard Michael on NPR. His critique of the medicalization of dying called to mind George Bernard Shaw: “The reasonable man [sic] adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
As a cradle Quaker, all of my heroes have been unreasonable people trying to make the world a better place. I sent my resume to ResolutionCare, hoping their new endeavor would be fluid enough to be shaped around a person-centered approach to wellness. Little did I know that the systems were fluid enough that I would soon call our mission of mercy to Humboldt County, “the wild, wild west.”
The MediCal pilot program that provided capitated payments for palliative care patients had stipulations which created a particular demographic niche for us. Patients were to have a life limiting illness such as cancer, COPD, CHF, or liver failure, and not be eligible for Medicare. Thus, much of our census is working class white folks under age 65 who suffer from the “diseases of despair”—alcoholism, morbid obesity, methamphetamine/other drug addiction, tobacco use, depression, and trauma. Low income, low literacy, and low life expectancy are common. For me, it was an abrupt change from the relative idyll of Marin County hospice work.
These patients have particular spiritual challenges, too. In diverse wisdom traditions, the primary obstacle to spiritual growth is what Sigmund Freud called the “ego.” For many hospice patients I’ve worked with, the ego was softening, allowing miraculous spiritual growth, healing, and transformation as death approached. Palliative care patients, still seeking curative treatment, are often in the desperate throes of an ego tantrum. The ego clings to life, desperately insisting that it is inviolate, immutable, immortal, when it is really just terrified. The existential limbo of palliative care provides the perfect environment for spiritual suffering. These souls need spiritual accompaniment.
In the four years since ResolutionCare started, we’ve launched satellites in Mendocino, Shasta, and Del Norte Counties, and proven our worth, so that Blue Shield and other payers have taken us up. This provides broader socioeconomic diversity to our census, though still selecting folks under sixty-five who are living with a life limiting illness. [Anytime Medicare wants to start capitated payments for palliative care of seniors, we are ready to enroll them!] We provide much of our care through telemedicine, using the Zoom video conferencing platform.
I sometimes describe us as the Navy Seals of palliative care. You can drop us in from 10,000 feet, and we will bring competent compassionate care to anyone we meet. Our social worker, Nikki Lang, coined our unofficial motto: “People caring for people by doing what makes sense.”
On our way to a joint visit during my early days at ResolutionCare, Fratkin was driving, texting, checking the GPS, trying to get a cardiologist on the phone, and talking to me. “Eventually, you’ll have ghosts all over this town,” he told me. “I’ve taken care of a cat lady who lived there, and a retired firefighter who lived down that street…” Now I have cherished ghosts of my own all over Humboldt County. Here are stories of two people who taught me valuable wisdom:
The Medicine Man. Lucas would never call himself a medicine man or a shaman. The practice of humility among the Hupa, Karuk, and Yurok people means that others may give you an accolade or credential, but you don’t hang it on yourself. The first time we met, I kept my body turned toward him, and made good eye contact, as I’d been taught in CPE. Well, that’s pretty rude and pushy among most Native Americans in this part of the world. Nonetheless, Lucas and I created a bond. For a respected spiritual leader like him, talking to this outsider helped.
Lucas was a “two-spirit” person, occupying both male and female ritual space. He showed me how to “pick sticks” for baskets, and taught me about the tradition of the dance families. He invited me to a “Jump Dance” held on the river for the renewal of the world. I camped in his family camp, feeling the mystical state of the fasting dancers and singers at the close of their ten day rite. I married Lucas to his life partner, Jonathan, as no local church would marry a same sex couple, and the clear song he offered as a blessing before the wedding meal belied the state of his health. When he died, he was buried on his family land allotment, where he had also been born a little more than half century before.
The Gardener. When we first enrolled her, Sally didn’t want to know her test results. She’d taken the most intense treatment for her Stage IV cancer, and she didn’t want to know if it had worked. “I’m tired of being a patient!” She took advantage of the need for a wig–”I always wanted to be a redhead.” She sucked the marrow out of every day by gardening, spending time with friends, taking her dog for walks which got longer and longer and then shorter and shorter again. I got no answer at her front door one June day, and she called from the side of her tiny cottage. I found her standing barefoot on her back porch in a sundress, aiming a diminutive 410 shotgun at a gopher hole, waiting for the resident to put his head up. I noticed the melted wax appearance of the skin on her upper arm and shoulder. She’d been in a house fire during her childhood which claimed the lives of her older sister and younger brother.
Sally’s survivor’s guilt later led her into an addiction which prevented her from being the mother she wanted to be for her daughter. Though she’d been a sober and responsible accountant for many years when the cancer diagnosis came on, and the daughter had grown up to have kids of her own, we talked about how little it helped to reason through her regrets, guilt, and shame. “I cannot ever be forgiven,” she said. “Is that for you to decide?” I asked. “I cannot ask God for forgiveness.” We walked the dog past the Catholic Church with its outdoor shrine to Mary. “Could you imagine telling Mary that you are willing to be forgiven?” Sally couldn’t go into the church, and couldn’t approach God, but she could stand outside the church where Mary might intercede for her. She made a practice of visiting the Virgin on her walks, allowing herself to approach the possibility of God’s forgiveness and self forgiveness. I facilitated some conversations with her daughter, who had long ago forgiven her and became her primary caregiver. Healing poured into their relationship and Sally’s life, even as she transferred to hospice to complete her journey.
The Team. As any healthcare chaplain knows, we carry a responsibility for our team members, who are also our teachers. With a budget 1/4th that of hospice, and patient situations our admissions nurse frequently refers to as a “hot mess,” my team are at risk for burnout and moral injury. With a “Bug List” on the office whiteboard alerting all to which patients are pediculous or otherwise infested with bedbugs, scabies, fleas, or crabs, they carry on. When a son sells his mother’s oxycontin to buy methamphetamine, we make an APS referral, hoping it will do more good than harm. We’ve had more than one patient spend time in jail. If one of our people goes to the ED, we accompany them so they won’t be shamed, ignored or treated as drug-seeking. The excellent Hospice of Humboldt will only travel an hour from their doors, so any further out, we’re hospice too.
But we are frontierspeople. Like the wild lupin that grows in the fields along the gravel road flying below my tires, we blow with the wind, take advantage of every drop of water, and bloom where we are planted. There are no hothouse flowers at ResolutionCare. No one says, “That’s not my job.” We muck in.
My tires roll onto the long bridge over the Klamath. I stop the bike mid-span, drop the kickstand, and hit the kill switch. My boots scrape gravel as I walk to the bridge railing. Looking up, I raise my arms and give thanks for this day, this place, this good work to do.
“To ‘listen’ another’s soul into a condition of disclosure and discovery may be almost the greatest service that any human being ever performs for another.”
-Douglas von Steere