Palliative Care, That Pure Madness
In a senior care facility, the afternoon coffee hour is a cherished time. On this particular day, coffee was being brought to the room of a new resident. At ninety, he had arrived at the facility following a long stay in a Covid ward, and a severe stroke some time before had left him partially paralysed.
He sat quietly in his small room, waiting for the physiotherapist’s first visit. If someone had passed by a little later and paused at the doorway, they might have seen this exhausted, near-paralysed man, with trembling hand, managing — with the therapist’s help — this one simple movement: lifting the coffee cup from the small table to his lips.
“He’s so strong,” the physiotherapist said on his way out.
Anyone who has spent even a little time alongside very elderly people knows how things stand. The senses seem to operate at half capacity, words slip away, the body hurts, memory falters, space and time fade, the self itself fades.
This is precisely what palliative care is about. All those conditions accompanied by complicated and sombre adjectives: “progressive,” “incurable,” “neurodegenerative,” “irreversible” — and what is more irreversible, after all, than an ageing body? It is the type of care called palliative precisely because there is no cure on the horizon.
There is an old saying that the sun and death cannot be looked at directly. Nurses, doctors, care assistants, psychologists, physiotherapists working in these settings face that impossibility every day. In this respect, their practice is a pure madness. It takes action precisely where science appears to reach its limit.
And yet palliative care staff take that “impossible” and convert it into a “nevertheless”: even though the body hurts, I can stroke their hair; even though they seem unresponsive, I can hold their hand (touch is the last sense to go, specialists will tell you); even though they are losing their words, we can still exchange words that matter; even though they can only use one hand, and only clumsily, they will manage to drink their coffee. This is the great lesson of palliative care: its insistence on introducing life into the places where everything seems futile.
To care for the incurable means inhabiting a space with no standards, no protocols, no golden recipes. At the crossroads of medicine, humanism, ethics and religion, caregivers are called every day to decide what stance to take, or even to invent one, in situations that are frequently contradictory.
Freed entirely from the narcissisms of “I will save you,” “I know best,” “I will cure you,” “I will educate you,” and precisely because of this awareness of the irreversible, they deftly avoid the trap of assuming the role of saviour or all-knowing authority — which is ultimately also a position of power. From this humble but pivotal position, these so-called caregivers are the only ones who can genuinely accomplish anything. Their work, far more than mere “trials to numb the pain” as Cavafy might have put it, is a source of small daily miracles.
In the care setting where I worked, I saw people at 92, with the right side of their body paralysed after a stroke, begin learning to write with their left hand. Elderly people nearly blinded by diabetes, planning surgery “so I can see my wife’s face again.” Patients with deforming arthritis, unable to hold a pencil, inventing their own way of drawing. People in very advanced stages of Alzheimer’s disease, with a permanently vacant gaze, apraxia, and blunted affect, smiling and blowing kisses with unmistakable charm.
And if that is not life, then what is?
