Here has been my understanding: palliative care does (must?) place biomedical pain and symptom management at its core. Ideally, this approach is not just pharmacological. Body placement, aroma therapy, massage all also take a central role.
But having written the above, I’m not sure if it’s true. It’s certainly a dominant philosophy, but in talking with Dan Keane, I’m starting to think it’s trickier. I asked him how he knows a non-medical consultation might be necessary: “It’s honestly a feeling. I don’t know if it can be trained, or if just comes from time.” There are some diagnostic cues: the consistent failure of analgesics to reduce pain or the absence of typical diagnostic evidence. But often, like many diagnoses, the choice to consult non-clinical help is a strange fusion of knowledge, experience and gut instinct. Non-clinical care is not a supplement to the bread and butter of biomedical symptom management, but an inseparable part of treatment.
As such, it seemed I should see how the professionals approached existential treatment. I talked to a retired priest, Father Mulkerrins, and a hospice chaplain, David. While approaching from a spiritual rather than existential angle, they are attempting Frankl’s approach. They help people to recall and understand their own meanings, as well as enabling those who wish to fulfill symbolic relationships through religious acts. Consider a man whose identity was caught up in a company he started, who had to leave the company due to his illness. Reminding him that his work and its impact on the world persists, even as he leaves that role, is to help him to articulate the meaning of his life.
In practice though, I am left struggling with Frankl’s core idea: Meaning in suffering. David tells of a young dying woman who said “I’m here, but my four, six and eight year old children are at home playing, and I don’t think they notice I’m gone. Will they notice when I’m dead?” Father Mulkerrins says “a four year old won’t remember.” To their credit, neither man pretended to have an answer, and by bearing witness to this woman’s pain, by sitting in it with her, they brought some comfort. But I think there’s a temptation to use Frankl as an excuse to ignore the horror of suffering, just as while I believe our totalizing fear of death is harmful, death remains a violence. Father Mulkerrins observes that those with a strong faith tend to have an easier death. Certainly he’s not unbiased, but it makes some sense. If the why in suffering is it is the will of God, then the how is apparent. But unlike Frankl’s courage in the face of suffering, when it was the claiming of a humanity in defiance of the Nazi’s, its hard to see how the suffering of dying from illness can be understood as meaningful.
Further to Father Mulkerrins point, I’ve been re-reading My Bright Abyss by Christian Wiman, a poet’s exploration of faith in relation to death. Upon his diagnosis with an incurable and rare cancer, he obsesses over the first stanza of Philip Larkin’s Aubade:
“I work all day, and get half-drunk at night.
Waking at four to soundless dark, I stare.
In time the curtain-edges will grow light.
Till then I see what’s really always there:
Unresting death, a whole day nearer now,
Making all thought impossible but how
And where and when I shall myself die.”
He follows this with “And that is the issue isn’t it? Death? The crashing cataract that comes to us, from this distance, as the white noise of life, that ur-despair that underlies all the little prickly irritations and anxieties that alcohol is engineered to erase.”
It is the issue. And, again, to Wiman’s credit, he does not offer simple solutions. For him, falling in love with his wife and his opening up to God, two deeply linked experiences, offered him some comfort from the approach of death. But elsewhere he also says:
“If God is a salve applied to unbearable psychic wounds, or a dream figure conjured out of memory and mortal terror, or an escape from a life that has become either too appalling or too banal to bear, then I have to admit: it is not working for me. Just when I think I’ve finally found some balance between active devotion and honest modern consciousness, all of my old anxieties come pressuring up through the seams of me, and I am as volatile and paralyzed as ever…What I do know is that the turn toward God has not lessened my anxieties, and I find myself continually falling back into wounds, wishes, terrors I thought I had risen beyond.”
So is that the conclusion, that there’s no magic pill to fix the problems of suffering and death? It seems a bit obvious. But the classical biomedical approach can trick one into believing in magic pills, the ability of adequate scientific understanding to “fix” us. What I think I’ve admired so much in the palliative approach is what might make it seem defeatist in comparison to other medical specialties. In every aspect of care, it remains dynamic. It doesn’t even stop at death, caring for families in their grief for months after. Perhaps more importantly, at least at its best, it resists extending answers where there are none.
While this is a bit of a downer of a post, I’ve mostly spent the last couple weeks trekking around some beautiful parts of Ireland, as the pictures probably show. A few days on Inis Oirr, a few days hiking around Connemara, some good times wandering Galway. It’s not exactly been focused on the challenges of suffering.