Can End-of-life Care Make Space for Spirituality?

October 19, 2016

Nurses rushed around the man in a blur of hyperactive clothes-changing and sheets-changing. He looked up. ‘It’s the cancer, you know. It’s spreading all around.’

He was talking to the only nurse in the room who wasn’t on duty. She was there to observe the workings of the hospice staff, as part of her research. But for this dying man, at this moment, she was simply there – open to a complex, precious mixture of commentary, invitation and request.

Two of the great 20th-century theorists of care for the dying urged people to be on the lookout for such moments. The psychiatrist Elisabeth Kübler-Ross, author of On Death and Dying (1969), encouraged family and medical staff to listen for the ‘implicit communications of dying patients’. The hospice care pioneer Cicely Saunders spoke about the need to attend to a person’s ‘total pain’: not just physical, but social, emotional and, yes, spiritual pain, too.

Such broad, nuanced forms of care as these are anticipated in the Scottish government’s report ‘Strategic Framework for Action on Palliative and End-of-Life Care’ (2015). The Framework aims to create a ‘culture of openness about death, dying and bereavement’, and to find ways of incorporating people’s spiritual and psychological needs into end-of-life care. But it also prompts the question: why, a generation after Kübler-Ross and Saunders, are such things being ‘called for’ as though they were new, unusual and brave? Why is spirituality not already a routine part of end-of-life care?

Partly, it is a problem of definition. It seems to be as difficult as ever to say precisely what spirituality is, and how it might feature in end of life care. In the public imagination, it remains stubbornly associated with religion: spirituality as religion’s private, inward dimension, the part that’s more about sensibility than belief. Elsewhere, spirituality is mangled by politics, conscripted as yet another marker of identity and difference – the now-classic ‘spiritual, not religious’ self-descriptor.

Mixed up with these various associations is a habit that spirituality has, in practice, of becoming separated from the rest of life. It is often defined against the rest of life. An atmosphere lingers around spirituality of hard-won insight and expertise, either so personal as to be essentially unshareable or else bordering on a kind of in-crowd esotericism. Few people faced with very little time left would regard spirituality of this sort as having much to offer.

Beyond providing work for sociologists, these problems of definition and praxis matter because they can obscure the valuable, impossible longing to which ‘spirituality’ is a response: a desire to reconcile symbolic identity – our intimate, narrative sense of ourselves and our loved ones – with physical identity. This idea of reconciliation is easily frustrated and even forgotten as a result of the often frenetic and confused ways in which we seek to meet it. But it is a deeply motivating need, and it will help us understand why the living and the dying alike struggle with ‘spirituality’.

For the pure woe and incredulity prompted by the apparent ‘dualism’ of our symbolic and physical identities, Ernest Becker in The Denial of Death (1973) found it hard to beat Jonathan Swift’s lines about a young man getting to know his love:

Nor wonder how I lost my Wits

Oh! Caelia, Caelia, Caelia shits!

Life is full of moments that provoke some combination of anxiety, revulsion and outrage, when we realise that our subtle, sublime inner world is hooked up to – even the other side of a coin from – perishable blood and bone and guts. Gently squeezing the sides of my baby daughter’s mouth to retrieve something she’s picked up off the floor, and doing the same not long after with a recently caught trout to retrieve a fish hook: why do I shudder a little noticing their upper palates looking so similar?

The technologies and preoccupations of a highly medicalised society provide their own provocations: uncomfortable visions of one’s own body, courtesy of ultrasound, CT scan or surgery under local anaesthetic; never-ending tests offering a narrative, at once portentous and devoid of solace-giving meaning, of our bodies as they teeter between health and disease. No wonder we value writers who bridge the physical and the symbolic, from Paul Kalanithi’s When Breath Becomes Air (2016), which recounts the young neurosurgeon’s experience of lung cancer from diagnosis through terminal decline, to Atul Gawande’s Being Mortal (2014), in which the surgeon explores the modern experience of death.

Patients facing death seek to come to terms with how they have spent their lives, making peace, if not with failing bodies then at least with the narratives they have built with them. They try to reach some new, last degree of understanding and closeness with others, finding the best possible – or least worst – place to put bookmarks in cherished relationships. Where the term ‘spirituality’, then, might leave hospice patients and staff cold or confused, the work of reconciliation with which ‘spirituality’ tries to be involved speaks to deeply human concerns.

Most of us will reach the end of life with the work of reconciliation – the symbolic with the physical – painfully incomplete. I suspect we know it. This is why ‘anticipatory grief’ is an important second element in spirituality, one that is again common both to the dying and to the living. This is where we grieve for the expected loss of a loved one in the near or unknown future, whether that be our own ‘self’ or someone else.

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