My aim this evening is to reflect on working in an adult hospice and a children’s hospice. I will begin by thinking about the language of spiritual care and I will attempt to wrestle with the age old question of where we might find God in times of great suffering. I will share some poetry, tell some stories and reflect on them in the light of what it means to know that we are mortal. To think about what might be said about God and faith in the care of terminally ill patients and to explore whether the same ideas resonate in both adult and children’s settings. Finally, I want to suggest that it is our humanity that we have to offer to one another and that surprising things happen when we can dare to let our defences down.
Let me begin with a poem by the American poet Mary Oliver called “When death comes”:

like the hungry bear in autumn;
when death comes and takes*all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes like the measle-pox
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened
or full of argument.
I don’t want to end up simply having visited this world.

As a chaplain to an adult hospice and now in a children’s hospice I use Mary Oliver’s poem as part of staff training on spiritual care of those at the end of life. The modern hospice movement is founded on the care of the whole person, Body, Mind and Spirit. It is called a movement because it was considered a move away from the over medicalisation of the patient and a move towards care of the whole person. I would want add to the idea of holistic care not simply Body, Mind, Spirit but also Community; the sense that there is no such thing as an individual, our lives and deaths are tied up with our neighbours and that the sickness and death of a person always has effects beyond that person.
Hospices see part of their role as educators to the health service and education forms a large part of the work. Hospice chaplains are expected to provide the teaching of spiritual care at the end of life. Working with Hospice Staff, NHS and Care Home staff for seventeen years it has been my experience that the word Spirituality is seen as a good word and Religion a bad word. It has become the norm for people to say ‘I am spiritual but not religious’. The Royal School of Nursing expects new graduate nurses, along with carers and families to be able to make a holistic person centred assessment of the patients which includes assessment of the patient’s spiritual needs. Many nurses see this as a daunting prospect and I am not surprised.
As the years have passed I have felt myself out of kilter with much language about spirituality, feeling that to talk about the spirit or spirituality is like trying to grasp soap in the shower, no sooner do you have hold of it than it has slipped from your hands. It feels airy and insubstantial. In David Hares play Skylight, Toby is telling Kyra about how his wife faced death. He says that he built this extraordinary bedroom for her, with a wonderful sloping glass roof, Toby says that she needed a place where she could be peaceful, a room looking out on the common.

Toby: Well she became … she became quite mystic. I don’t mean to sound cruel but it was difficult for me. You know Alice. She got hold of this bloody word ‘spiritual’. It’s one of those words I’ve never quite understood. I mean, I’ve always hated the way people use it. They use it to try and bump themselves up. ‘Oh I’ve had a spiritual experience,’ they say …
Kyra: Yes.
Toby: As if that’s the end of the argument. ‘Spiritual’, meaning: ‘It’s mine and shove off.’ People use it to prove they’re sensitive. They want it to dignify quite ordinary things. Religion. Now, that is something different. I like religion. Because religion has rules. It’s based on something which actually occurred. There are things to believe in. And what’s more, what makes it worth following – not that I do, mind you – there’s some expectation of how you’re meant to behave. But ‘spiritual’ … well, it’s all wishy-washy. It means, “Well, for me, for me this is terribly important, but I’m f****d if I can really say why …”.

It is easy to get carried away by language about spirituality, and so often in the groups people talk in solitary terms, feeling spiritual by the sea, or beside a waterfall, listening to music, all very commendable, rarely surprisingly do people talk about shared laughter or shared tears. We rarely hear about people who are low in spirit, and goodness knows what people might make of the idea that God sends an evil Spirit on King Saul for instance. The language of Spirituality is everywhere and only last week I came across tins of dog food that fed the whole dog, body mind and spirit! But more seriously what spiritual language fits when we are working with people for whom the ‘pain and misery of life is most keenly felt (facing the end of their lives or the end of the life of someone they love)? So I share Mary Oliver’s poem When Death Comes as it manages to speak of the sharpness of death, its reality and its pain and speak too of how to live in order that one’s life has had meaning. I want to suggest a little later that my experience of looking after adult patients meant that it was the religious take on life that seems to resonate.
Inevitably as we age and our organs fail us, or disease sets in, we might rationally prepare for our death and the death of elderly loved ones, but even so death is often felt to have come at the wrong time; a grandmother waiting to see her beloved granddaughter get married, a grandson wanting his grandfather at his graduation. Wanting somehow to have the whole family for a final Christmas together. For all its ubiquitous inevitability death is treated as surprising and unexpected. And so I like the sharp truth of those words:

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox
when death comes
like an iceberg between the shoulder blades,

Of course it is also true that death is welcomed by some, but on the whole I have not found that to be the case. I suggest that those who work in hospices need time to reflect on mortality and to explore how this affects us and those we work with. This is so easy to talk about and of course so very hard to do. Yet without such reflection we shall be of little use to those facing their last days. To reflect on mortality is the price of choosing to work with the dying.
The claim, attributed to Socrates, that the ‘unexamined life is not worth living’ may well be true yet the examined life leads to self awareness and the costly price of knowing we are mortal and shall die. I believe that learning to live with such huge questions enables us to live more fully and more freely. In order to do this and as personal discipline one of the ways in which I try to address this it to write poetry. It doesn’t matter (to me at least) that it is not good poetry. The very act of writing a poem forces me to slow down, to think, to explore and reflect. I write poetry in order to slow down to the heart’s time (Janet Morley), a heart which will one day stop beating. I read and write poetry to help me think about letting go – to consider carefully how I might face the inevitability of death and how as a team we might work together ministering in the context of a hospice setting.
In the adult hospice we would meet twice weekly as a whole team to think about those in our care. As we came together week in, week out for handovers and multi-disciplinary team meetings it seemed, to me at least, that we had our noses rubbed in mortality. We discussed each patient and together we heard of Joe or Mary, Joyce or Bob as they near the end of their lives. We would ask the questions ‘Do they need more morphine, laxatives, complementary therapy or a listening ear? What do the family and those around them need?’ And what do we need, for ourselves, as we attempt to support the dying? We might need reflective practice, supervision, black humour often helped, we might need more chocolate or simply look forward to tonight’s tipple?
Handovers after a few days break always proved such a shock and there were times when I wondered whether the break did me any good:

Beginning again
Tuesday Handover
after three days
Rest
and we are plunged
back into the depths and the deaths
Three days of a kind
of forgetting
that this is the human condition
To suffer and to die
Universal amnesia
even in this place
Surprisingly surprised
That patients too are anxious, fearful
Terrified
So we choose to forget
and wonder why re entry
into this place
feels like a physical blow
Beginning again
To regret our mortality

It is not possible to write about death as an experience. We do not experience death – death is not part of life as some have suggested, it is the end of life. Even those of us who believe that when we run out of our resources God never runs out of His and believe too, that God is at the far side of death (Rowan Williams) have to face the finality of death, the end of this life. I continue to think that death is the ultimate question mark that hangs over all activity.
For many coming to the end of their lives the superficial is stripped away. A mother of three young children, in her last few weeks of life said, “Do you know, before I came in here I used to worry about whether my carpets matched my curtains”.
It could be argued, as some do, that those who work with the terminally ill, do so in order to keep their own death at bay. They do not have to think about their dying for it is always others who die. Is it not possible simply to care for others without thinking about one’s own mortality? Why scratch where it doesn’t itch? Just deal with death when it comes. Why grapple with the most terrible, the darkest and most unchangeable aspect of life?
The psychotherapist Irvin Yallom replying to the question, ‘Why scratch where it doesn’t itch?’, suggests that Death does itch. “It itches all the time, it is always with us, scratching at some door or whirring softly, barely audible, just under the membrane of consciousness. Hidden and disguised, leaking out in a variety of symptoms it is the wellspring of many of our worries, stresses and conflicts”.i
The flier to this talk said that although Christianity is sometimes accused of denying this reality in fact it sees death not so much as an ending but a new beginning. Mary Oliver’s poem hints at something more, after this life, a hope:

when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

Though, during training days, the word religion was often spoken of in pejorative ways I have found, almost universally, that patients in the adult hospice welcomed the prayers, sacraments and rituals of the Church. They asked the big questions, Why now? Why me? What will become of my loved ones? Has there been any meaning to my life? Is this it or might I hope for something beyond this life? The staff might not themselves make the leap from experience to faith yet there is overwhelming anecdotal evidence that they too welcomed the role of the Chaplain as the person who might be willing to stay with such questions.
Given the demographic (which tended to mean that most people were in their 50’s and beyond) there remained a residue of belief and the Christian narrative continued to resonate. For the most part it was my experience that religious care was care of the spirit. I cannot put into words just how significant giving a blessing was for those who were dying and those who surrounded them. Patients took great comfort in the words ‘Underneath are the everlasting arms’, and day-care patients, many of whom had never attended Church before being given a terminal diagnosis, heard with joy at weekday Eucharists, “That though we were still far off He met us in His son and brought us home”.

In the end the patient dies, as we all must
Our days are but as grass;
we flourish as a flower of the field;
For as soon as the wind goes over it, it is gone,
and its place shall know it no more. (from Psalm 103)

‘Christianity in fact sees death not so much as an ending but as a new beginning’, says the flier for this lecture. I emphasise that I did not write those words because I came to realise that working with the sharpness of death meant that we cannot jump too quickly from the end of a life to the promise of eternity. Those who live through the darkness of bereavement so often experience the long lonely Saturday before hope emerges.
I worked for twelve years in an adult hospice and now have worked five years in a children’s hospice and there are significant differences. Yet, there is no simple equation that says that we rationally prepare for death as we age, death therefore comes as less of a shock. The impending death of your near life long companion brings its own terrible heartache and one glimpses the great distress, the loneliness and loss of meaning that separation will bring.

A LITTLE way to walk with you, my own —
Only a little way,
Then one of us must weep and walk alone
Until God’s day. – (Frank Lebby Stanton)

I want to change tack now, leave the adult world and the adult hospice where feeling mortal is constantly with us and has a kind of ‘natural order’ about it, to a child’s world and a children’s hospice where the death of a child seems to go against the grain of things. ‘Feeling mortal’ as adults, might just about be acceptable, we might just about entertain the possibility, but the mortality of a child?
There is something about the death of a child, something about a father and mother attending their child’s funeral, grandparents, even great grandparents in attendance that seems to challenge our deep sense that life is fair, has some predictability about it. It offends something very deep in us to see parents bury a child. One parent remarked that when your parents die you lose your past but when your child dies you lose your future.
One elderly woman grieved for the child she lost many years ago and said that had her daughter lived she would now be keeping her mother company during her last days.
I was called by a mother of a 21 year old woman and asked to visit her dying daughter. Walking down the corridor, the mother said: ‘She is in here’, pointing to her daughter’s room and at the moment I was about to enter the room she barred the door, and said ‘I can understand why my daughter has cancer, I mean things go wrong in creation, potatoes get blight, roses get blackspot and mildew…. it is when you bring God into the equation that I can’t understand.’
It is required of anyone working in pastoral care that they develop a theodicy – to bring God into the equation – and attempt a response to the question ‘Why does God allow this to happen?’ Over the years I have come to believe that suffering is God’s special territory. I could have responded to that mother about the God we know of in Jesus, I could have shared with that mother one verse from Jesus of the Scars written by Edward Shillito who lived during the horrors of the Great War and published this poem in 1919:

The other gods were strong; but Thou wast weak;
They rode, but Thou didst stumble to a throne;
But to our wounds only God’s wounds speak;
And not a god has wounds, but Thou alone.

I believe that to be true, I believe that at the heart of the Christian faith is a wounded God. But it was clear from how that mother spoke that she wasn’t looking for an answer, hers was a cry of pain and of protest. And do we not grow sick of answers?
To work with the death of children and young people, to conduct the funeral, to look out at bewildered faces and then to continue to work with bereaved parents is to live with many questions. Is there a theodicy that makes sense of the death of a child? I might have in my theological locker all sorts of promises and insights, yet how might we talk of God, discover God or are even such questions indulgent, superfluous at such a time?
Of course God must, by definition, always be bigger than our ideas and we do not have the answers to such huge questions. But some do seem to have the answer I came across this on line but cannot find the source, I quote: ‘that although the existence and extent of evil is a profound mystery, the message of Christianity shines through even in darkness. According to the Bible, not even God exempted Himself from the agony of human suffering. The second Person of the Trinity, Jesus Christ, God of very God, experienced a gruesome encounter with pain and agony on the cross.’ (anon).
Does that help I wonder? Does it resonate? Does the message of Christianity shine through even in darkness? There is a darkness about the loss of a child – is God hidden in this darkness? And if so, where might we begin to look?
I have been persuaded of the truth of John V Taylor’s understanding that the death of a child is a tragedy, it is a tragedy for the child, it is a tragedy for the parents and it is a tragedy for God, who had hopes and dreams for that child; and that God is not some potentate ordering this or that to happen but suffers with the child and with the parents. Yet even such profound insights, if insights they be, are silenced…
What does it mean to say to a parent who has lost a child that God is with them, God suffers when they suffer? For some parents that is a great comfort but for others they might quite rightly want to say ‘who cares whether God suffers?’ Does is not border on a kind of blasphemy to talk of God?

Hospice Language
Twenty six letters in the alphabet
Mixed together to make up words
That explain everything

So why is it so hard to find the right words?
This poem is a contradiction
Words trying to express the inexpressible

Words count for so little
In the face of this enormity
This full stop marking the end of a sentence
Which is life

Words dry up and leaving them behind
Another language is rediscovered
The forgotten language of tears, a smile,
Touch – a hand
On the shoulder, a hug, perhaps even silence
If I dare

No more words.
What is needed now is that
The Words become flesh.ii

I have found that I have had to give up on language about spirituality and the spiritual and begin to talk about what it feels like to be human. And I need to be very reticent when speaking of God. Parents planning their child’s funeral service are more likely to choose the music of Disney rather than the liturgy of the church. Yet even those parents who express no religious beliefs welcome prayers and want to hear and to know that their child life is set in a larger context.
If God is the reason we live and breathe and have our being, is there some way of making connections between that belief and the death of a child? How can we begin to speak of God when there are so many caricatures around? In Mark’s Gospel Jesus holds back from revealing who he is, to quote Rowan Williams, “it seems Jesus cannot believe that there are words that will tell the truth about him in the mouths of others. What will be said of him is bound to be untrue – that he is the master of all circumstances; that he can heal where he wills. That he is the expected triumphant deliverer, the Anointed. In Anita Mason’s novel The Illusionist, this is hauntingly expressed in the reworking of Peter’s confessions, where Jesus in response to Peter’s assertion ‘You are The Christ’, Jesus replies ‘You have said something that should never have been said, and there will be a heavy price to pay… There is a kind of truth which once when it is said, becomes untrue”.iii
So, perhaps we cannot speak? What might we say to Mary? Let me tell you a little of her story: Mary has a fourteen year old son who is severely physically and mentally disabled, he has cognitive difficulties, cannot speak and it is difficult to know how much he understands. He has becoming increasingly hard to manage physically. He is delightful in so many ways, but is a constant worry to his mother, as he is constantly fitting and need hospital admissions on a regular basis. As a growing teenage boy, it is physically hard to get him out of bed, bathe him, change him and even pushing a purpose built wheelchair up a slight gradient is hard, hard work. Mary is a thoughtful Christian, but feels that she needs to hide from God for fear that God may give her an extra burden to carry:
‘Like Odysseus’, she says, ‘I keep hiding from God’. Mary talks about God freely and yet when I asked if she would like me to remember her in my prayers, she said ‘Yes, but don’t mention my name, I don’t want him to notice me. He might give me more to carry.’ I remember another father saying the same thing, almost word for word – ‘I keep my head down, below the parapet so that God doesn’t notice me’. Should I challenge their notion of God or might I recognise that they are in good company? ‘Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about him’ (C S Lewis – A Grief Observed). One mother continues to startle me with her observations; she hasn’t had a bath, she says, in four years, choosing to shower because to simply soak in the bath gives her too much time to think. Another mother speaks agonisingly of the silence of the breakfast table, remembering the endless chatter of her four year daughter who died following an inoperable brain tumour.
As I have been drawn deeper into the stories of bereaved parents I find it hard to speak of God. I was asked to visit young parents, members of a Church, who had been devastated by the death of their young daughter through brain cancer. When talking to them it transpired they had suffered the death of another child, a sudden cot death. I hadn’t known that and perhaps it was the shock of that additional news but something shifted in me, it wasn’t that I chose not to speak of God, I was completely at a loss for words, loss of explanation. I stopped looking for God and looked at them, really looked. A mother and father who had been stripped bare, ‘stripped of all the spiritual feelings and concepts with which we are accustomed to propping up our inner lives. Often profound loss and suffering exposes the superficiality of the beliefs that have sustained us’.iv I felt the same sense of emptiness when listening to a Father travelling home from the hospice after his son had died, who talked of looking in the rear view mirror only to see an empty child’s safety seat.
I am no academic theologian but I am told I am good at joining the dots. I can make connections between academic theology and pastoral care… apparently. Yet in the company of bereaved parents I am out of my depth. I find I have little to offer a grieving parent and words seem empty. I can’t make sense of this, I cannot make sense of the death of a child, or sense for the grievously bereaved parents. I think of Rowan Williams line in a poem about Thomas Merton; ‘Not to make sense, but room’. Perhaps that is all I can do; attempt to make room in my imagination for the dying child and the bereft parent.
Making Room
No sense in this
No tidy theological creed
No words
No language, no answers
No sense
A child’s death is
An outrage, a tragedy
‘Not to make sense, but room’
Room in the imagination
Room in the language
Room in the silence
A space to move into
To move out from
A space for grief
To enter, to set up room
Mirroring the child’s bedroom
Still furnished
But empty

So we stay with the gaps, the loss, the grief and wait, feeling mortal; mortally wounded. Sam Wells suggests that in pastoral care what a minister, priest, pastor – not always an ordained person – is doing is [that] they are dwelling with another person at the most challenging points in their lives, to which there aren’t usually answers; and not running away from those places, and staying in those places until the Holy Spirit reveals the face of Christ.
It is that staying, waiting that makes all the difference. We hear in that great hymn of Philippians that Jesus was found in human form.
Being found in human form – that is our clue, our starter, for there must be something quite extraordinary about human beings that even God could become one of us.v Perhaps then the key is to become as human as we can, not clinging to God, not exploiting God, for I have no doubt that some language which seeks to explain the presence of suffering within the idea of a Loving God is a kind of exploitation. It is avoiding what human beings suffer. Maybe the human being is enough.
At the end of John V Taylor’s book The Go Between God, the following story is told:
“A colleague has recently described to me an occasion when a West Indian woman in a London flat was told of her husband’s death in a street accident. The shock of grief stunned her like a blow, she sank into a corner of the sofa and sat there rigid and unhearing. For a long time her terrible, tranced look continue to embarrass the family, friends and officials who came and went. Then the schoolteacher of one of her children, an Englishwoman, called and, seeing how things were, went and sat beside her. Without a word she threw an arm around the tight shoulders, clasping them with her full strength. The white cheek was thrust hard against brown. Then as the unrelenting pain seeped through to her the newcomers tears began to flow, falling on their two hands linked in the woman’s lap. For a long time that was all that was happening. And then at the last the West Indian woman started to sob. Still not a word was spoken and after a little while the visitor got up and went, leaving her contribution to help the family meet its immediate needs. That is the embrace of God, his kiss of life. That is the embrace of his mission, and of our intercession. And the Holy Spirit is the force in the straining muscles of an arm, film of sweat between pressed cheeks, the mingled wetness on the back of clapsed hands. He is as close and as unobtrusive as that, and as irresistibly strong”.vi
What I notice about that story is that apart from John Taylor’s interpretation, there is no mention of God, no prayers, no use of scripture no sacraments. Rather it is one human being meeting another. Yet it was in that meeting that ‘Something Other’ seemed present. Would it have helped to talk of God at that moment, would such an interpretation resonated? I think not, rather it would seem like an intrusion. Like the frightened little girl who was told not to worry, God was always with her and said, ‘Yes, I know that, but I want someone with a skin face’.
Taylor’s understanding of where God might be discovered opened my eyes. I am utterly convinced that when two people meet, when defences are down and they are able to be real with each other it is as if something other is present, John Taylor calls this ‘Other’ God, the Holy Spirit. The One who brings us to life – It is the same Spirit that draws our attention to the sun reflected on the lake, or the early morning mist. But it not simply those serene moments, it is the same Spirit that I am aware of when I sit with a father whose three year old son died three months ago and at the mention of his son’s name weeps and says, “I haven’t heard his name for three weeks, it is as if everything and everyone has moved on”. I am aware of something significant, some otherness. But recognition, and speaking do not always go together and anyway the moment of recognition disappears as soon as it appears, like the Emmaus story, as our eyes are opened Someone disappears, We cannot hold on to God in that moment otherwise God quickly becomes an idol, and idols are those things that we can grasp.
I started this lecture by talking about the training that is offered to staff in the hospice in End of Life Care. Let me finish with a simple illustration from a recent study day. The day was called, ‘We need to listen’, carers, nurses, doctors, play workers all took part. There was some excellent teaching input. We tackled the question of what can we say, what can we do, in the face of extreme suffering. One young carer quietly said, that when her mother died, she couldn’t remember what was said, or what people did, but she knew who was there. Modern training techniques have desired outcomes, my hope and my goal for that study day were summed up in those five words from that carer, ‘I knew who was there’. We didn’t need any input, we could have spent the whole day, simply thinking about those words. “I knew who was there”.
The great paradox, it seems to me, is that when we give up our ideas of God, when we stop speaking of God, stop speaking for God and simply let ourselves be human, in touch with ourselves and in touch with whatever is in front of us, we are in touch with the divine, the ‘Beyond in the Midst’ of us. In the face of the most of extreme suffering we discover that the proper name for God’s providence is Emmanuel – God with us.vii

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