A coda to Don’s post on end-of-life care.

My mother died at the end of September. No sympathy please, it was time – she was 95 and failing – though you might spare her a salute: she had been a WAAF in Fighter Command during the Battle of Britain and in Coastal Command during the Battle of the Atlantic, and so was a survivor of a great and noble (if involuntary) band of women warriors.

Years before, she had been helped to come to terms with her impending death by Rainer Maria Rilke’s famous poem The Swan from 1906. Here it is, in German and in her translation:

Diese Mühsal, durch noch Ungetanes
schwer und wie gebunden hinzugehn,
gleicht dem ungeschaffnen Gang des Schwanes.

Und das Sterben, dieses Nichtmehrfassen
jenes Grunds, auf dem wir täglich stehn,
seinem ängstlichen Sich-Niederlassen – :

in die Wasser, die ihn sanft empfangen
und die sich, wie glücklich und vergangen,
unter ihm zurückziehen, Flut um Flut;

während er unendlich still und sicher
immer mündiger und königlicher
und gelassener zu ziehn geruht.

The burdensome business of living, of trying to shoulder one’s way through piles of things not yet done, as if in chains, is like the clumsy waddle of a swan on land.

And the actual dying, thus losing contact with the ground on which we have been standing all our lives, is like the apprehensive way the swan lets itself down into the water; and then the water receives it gently and streams away beneath it bearing the past with it,

As the swan forges its way ahead, apparently effortlessly, ever more serene and majestic, and at last comes of age in a realisation of its full potential.

That’s pretty much how she met her end: in her own room, surrounded by her pictures and photographs, with the music she’d chosen, and family and friends always by her side. She waddled clumsily into the river of Lethe with anxiety, but not pain; as she enjoyed proper palliative care from her doctor and nurses. (Incidentally, it wasn’t expensive. She escaped a transfer to either hospital or hospice, and her care home coped with her nursing without calling in outside help. Dying at home is even better than giving birth there, where there are real medical risks to be weighed. )

Rilke’s vision was true for her – but cruelly not for him. He died of leukaemia in 1926 in a clinic in Switzerland. With incredible bravado, he refused medication so he could experience death to the full. His last poem is a first-hand report on dying without morphine: and it’s a terrifying ode to agony.

Komm du, du letzter, den ich anerkenne,
heilloser Schmerz im leiblichen Geweb:
wie ich im Geiste brannte, sieh, ich brenne
in dir; das Holz hat lange widerstrebt,
der Flamme, die du loderst, zuzustimmen,
nun aber nähr’ ich dich und brenn in dir.
Mein hiesig Mildsein wird in deinem Grimmen
ein Grimm der Hölle nicht von hier.
Ganz rein, ganz planlos frei von Zukunft stieg
ich auf des Leidens wirren Scheiterhaufen,
so sicher nirgend Künftiges zu kaufen
um dieses Herz, darin der Vorrat schwieg.
Bin ich es noch, der da unkenntlich brennt?
Erinnerungen reiß ich nicht herein.
O Leben, Leben: Draußensein.
Und ich in Lohe. Niemand der mich kennt.

Translation by Walter Kaufmann, via John Banville in the NYRB :

You are the last I recognize; return,
pain beyond help that sears the body’s cells:
as I burnt in the spirit, see, I burn
in you; the wood, that for so long rebels
against the flame you kindle, comes of age;
behold, I nourish you and burn in you.
My earthly mildness changes in your rage
into a rage of hell I never knew.
Quite pure, quite planless, of all future free,
I climbed the stake of suffering, resolute
not to acquire what is still to be
to clad this heart whose stores had become mute.
Is it still I that burns there all alone?
Unrecognizable? memories denied?
O life, o life: being outside.
And I in flames—no one is left—unknown.

So that’s what dying from cancer without pain relief is like: being burnt alive. That’s what millions of cancer sufferers in the Third World have to endure, needlessly. And surely some uninsured patients in the USA – even though most of the dying will be covered by Medicare and Medicaid, the pool of uninsured must include terminal cancer sufferers.
Don’s dichotomy is incomplete. The options for end-of-life care in the USA are not limited to hospice and hospice-inspired care on the one hand, and “heroic” high-technology intensive care on the other. The third way is not getting either. You show up uninsured at the ER in great pain, get a pill: then what? Are you sent home, or put in a bed to die in the corridor, or sent to a hospice – but what if there isn’t one?
So may I suggest a question for the Presidential and Vice-Presidential candidates in the election.

Do they agree that everyone in the USA has the right, if they are terminally ill, to die with as much dignity and comfort as good care can provide? And if so, how do they reconcile this principle with their health policies?

The question is, I think, impossible for Romney and Ryan to answer affirmatively. It’s not easy for Obama and Biden: for ACA still does not offer universal coverage, and leaves say illegal immigrants to die in flames like Rilke.