The Revd Dr Michael Wright: hospice as a centre for healing

PRESENTATIONS

Healing

The Revd Dr Michael Wright

Making life before death matter: hospice as a centre for healing

This article is an overview of my presentation given at the Help the Hospices conference (’Making Life Before Death Matter’) in Harrogate, 25 November 2009.

‘There is a mass delusion in the medical profession,’ said the physician Norman Swann during his keynote speech at Palliative Care Australia’s Breakfast at Parliament in 2009. ‘The mass delusion,’ he suggests, ‘is that modern health care is about cure.’ Swann’s headline-catching presentation draws attention to the debate around the nature of care when cure is no longer an option. It resonates with Balfour Mount’s attempts, in Canada, to increase his medical students’ understanding of healing and encourage it to happen more often in their practice. Mount considers that healing is not dependent on physical well-being, that it lies at the heart of the palliative care mandate, and that it’s possible to die healed.

What does it mean to be ‘healed’ in the twilight of life? The literature includes medical, psychological, anthropological, and spiritual (both faith-based and ‘religion-free’) perspectives. While each of these stand-points focuses on the woundedness of humanity, they encompass wide-ranging definitions of healing. A frequently-occurring notion is that of ‘restoration’. Yet I think of someone who’s been pronounced clear of cancer but who doesn’t believe it. She’s withdrawn and unhappy; a person restored but not healed.

Figure 1. Factors associated with healing

Darwin’s hospice garden includes a labyrinth as its centrepiece, its circular shape resonating with the Aboriginal palliative care model. Adjoining plants, recommended by the community,

have been selected for their healing powers. As the individual walks the path - a journey in what may be considered sacred space – there’s the opportunity to pause, reflect and explore the totality of a life confronted by the challenges of illness and mortality. Pastoral coordinator Amanda Cox says, ‘This labyrinth is an ancient, mysterious path modified for use by frail people. What’s been found over the centuries is that, maybe through the rhythmical turning of the path, something happens that provides clarity and healing.’

Years ago, I heard a story concerning the Scottish author, Robert Louis Stevenson. A sickly child, he spent many hours looking through the window of his Edinburgh home. One evening he called his mother to see a man ‘making holes in the dark’. Puzzled, she looked into the gloom and saw a lamplighter touching the wicks of the streetlamps with his taper – creating holes in the dark when they burst into flame. I remembered this story when I was briefly associated with the Hospice of St Francis, for I was struck by an image of the candlelit procession as the service re-located to its new premises. Here it seemed was a metaphor for hospice: whole-person care in the context of journey and accompaniment; where holes are lit in the darkness of pain, fear and loneliness, enabling the brokenness of individual lives to be addressed and healed. My belief is that healing is in keeping with the fundamental principles of hospice care and that those involved are well placed to facilitate the healing process. Crucially, they help to make life before death matter for the patient and create powerful, lasting memories in those who live on.

Revd Dr Michael Wright

International Observatory on End of Life Care

m.c.wright@lancaster.ac.uk; www.revdrmichaelwright.info

But first, I recall the day when, as a health care chaplain, a consultant asked if his patient, ‘Bill,’ could be married that afternoon. The couple had been married before, but only to each other. Years after their divorce they decided to co-habit but never got round to re-marrying. Now, dealing with this unfinished business, the formal healing of their previously fractured relationship, was of paramount importance. By mid-afternoon, a cake had appeared, family and staff were around the bed, vows were exchanged and champagne flowed. A wonderful occasion – made better by the fact that Bill perked up, joined his bride at home and spent his last days in the quiet contentment of his married state.

Hospice has long been associated with hospitality: a warm welcome and gracious affirmation for all who arrive at the door. ‘Ahmed’, a member of Hospis Malaysia’s day care group in Kuala Lumpur, speaks of the contrast between his employer’s reaction to the news of his cancer and that of the hospice. ‘When my boss heard about my brain tumour, the first thing he said was, “I can’t have you in my department, you are taking up my head count”. ‘The bosses don’t care, we are just human robots,’ says Ahmed. ‘But here [at the hospice] we are treated like a human being. It’s the only place on earth where the human race is. The rest of the world is inhuman.’

In common with many therapists, Nigel Hartley tells how people who have lost capabilities in some parts of their life can experience wholeness in others. He refers to folk who, for a variety of reasons, can no longer speak in sentences. Communication via language becomes difficult, sometimes impossible. Nevertheless, ‘their response to musical grammar is so complete that somehow there’s an understanding of how music is put together. They’re there, in the music itself. So somehow this is about the musical experience enabling them to be whole. In music they can experience this completeness of themselves whereas outside of it, that’s not there to them anymore.’

In the Philippines, rabies is a serious problem. Dog bites are the major cause of infection and children, drawn to animals, are most at risk. In the acute stage, hyperactivity (furious rabies) or paralysis (dumb rabies) is evident. Death occurs within seven days of illness becoming apparent. In the past, patients who were exhibiting furious rabies at Manila’s San Lazaro Hospital for Infectious Diseases were cared for in secure accommodation to keep them safe. Distressed relatives would say their goodbyes and not see them again. Yet with the introduction of palliative care and the psychotropic drug haloperidol, it became possible to effect a change in the patient’s behaviour. Mario Logmao, chair of the Palliative Care Committee, says, ‘With haloperidol, the patient’s life can be extended for up to five days. That gives the patient and their families more time. They talk together, laugh together and cry together. The patients are peaceful, physically and spiritually. One patient even requested to die on his mother’s lap – and he did.’

The first services in South Africa began around the end of the 1970s against the background of divisive segregation laws, social unrest and a politicised population. Yet significantly, hospice services defied the legislation by being fully integrated, modelling a vision of a more inclusive society. At St Luke’s, Cape Town, Meg Meyers recalls, ‘We opened a ward and had black, white, coloured, everybody in together, and you could feel a bit of tension’. One of the white patients was uncomfortable with the arrangements and decided to go home. Before she was picked up, she became unwell and ‘it was the black lady in the bed next to her who came to help her. And she was so caring of her and rang her bell to call the sister, that it changed her whole attitude. She stayed.’

In Australia, steps are being taken to provide a hospice-palliative care service that is culturally appropriate for Aboriginal people. Helen Guyula, the Aboriginal interpreter at the Royal Darwin Hospice, speaks about the lasting hurt when her father died in an enclosed hospital room, dislocated from his family and land, without the necessary ceremonies being performed. ‘Our sorrows made us bad’ she says, ‘it took us six to ten years to think of him.’ Beverley Derschow, the hospice’s Aboriginal health worker, has constructed a palliative care model, with its key elements based on the Aboriginal world view. The concentric circles contrast sharply with the linear models familiar to Western eyes, yet they replicate the cyclical perception of Aboriginal life: an existence that begins in The Dreamtime and after time on earth returns to The Dreamtime (Figure 2).

So perhaps the conditions for healing are optimum when restoration mingles with other factors. At the forefront of these, I suggest, is hope: the expectation of achieving a future good that is personally significant. As healing occurs, its effect becomes evident via a change in the individual, a change I’d describe as a ‘resurrection’. This isn’t meant in any religious sense (although it may be interpreted as such) but more broadly as a discernable renewal – an added dimension even - in a distinct part of a person’s life (Figure 1).

Let’s consider some examples of healing which contain elements of restoration, hope and resurrection. Here, I’ll draw on data from the International Observatory on End of Life Care’s oral history archive.

Figure 2. The Northern Territory Aboriginal palliative care model (constructed by Beverley Derschow)

Darwin’s hospice garden includes a labyrinth as its centrepiece, its circular shape resonating with the Aboriginal palliative care model. Adjoining plants, recommended by the community, have been selected for their healing powers.

As the individual walks the path - a journey in what may be considered sacred space – there’s the opportunity to pause, reflect and explore the totality of a life confronted by the challenges of illness and mortality. Pastoral coordinator Amanda Cox says,

‘This labyrinth is an ancient, mysterious path modified for use by frail people. What’s been found over the centuries is that, maybe through the rhythmical turning of the path, something happens that provides clarity and healing.’