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with them, warm and humble. More than anything, thi( want us to combine our competence with compassion and when our hands are empty, to stay our ground and share th, frightening darkness with them. More than anything, thei need our love.
Room for Loving
There is room in the world for loving; there is no room for hate. There is room in the world for sharing; there is no room for greed. There is room for justice; no room for privilege. There is room for compassion; no room for pride.
John Harriott Our World
In the previous chapter I wrote of the prophetic role of the hospice movement and one of my favourite and most tantalising intellectual games is trying to identify what it is that makes the hospice where I work so different from the hospital. (I should add that this is a dangerous game which many people play and in which the inexperienced can be badly hurt, because comparisons are both misleading and invidious.) Hospices, like all prophets, are called from the mainstream of society to live their truth on the periphery. Sometimes their lifestyle brings them bouquets; sometimes they are pelted with rotten eggs: perhaps even the balance of these is crucial for too much praise can corrupt while too little can dishearten and destroy.
What is it that makes hospices - all hospices - so different from hospitals? Surely the ingredients are the same: doctors, nurses, patients, beds, machines - all these are to be found wherever the sick are cared for. The difference lies in the way these elements are blended together or, to use another image, in the way that the players in the drama relate to each other. These relations are different because the philosophy of hospices is different. It is a philosophy based upon the conviction that
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people, all people, however far gone, are infinitely preciou and their treatment must be tailored to their individual need* We are treating not just a case of breast cancer, but a woma called Mary, her husband John and their children Sally am David. Here we get to the heart of the matter: the dying at individuals, complex human beings whose needs are legiot physical, intellectual, emotional, spiritual, social. In hospitj we provide high quality treatment to the tip of the huma iceberg: we diagnose disease and try to cure it. We attend t the basic physical needs as well as our resources permit, ty are as patient and kind as we are able to be given the shortag of personnel and the pressures of work. We try to help th families when they are in difficulty, but mostly, we dare nc open the Pandora's box of human fear and anguish. We al not encouraged to ask people what it really feels like to hav cancer, :o be dying. We are not taught to hold their hand when they are lonely or afraid, or to cradle them sobbing » our arms, smoothing the hair, holding them until the paroj 1 ysms pass. We are not trained to love. Or rather we are traine to suppress our love, to don a protective uniform especially f0 work: a uniform that keeps us at a safe distance from ou patients so that our meetings are those of professional am client, not of the frail human beings that we all are.
Could it be that we are unconsciously denying our patient the one thing that they long for, the one gift that it is in ou power to give: our human warmth?
To love tenderly, how sweetly the phrase rolls off the tongut conjuring up images of nurses smoothing fevered brows am fatherly doctors comforting weeping relatives. In the world a the terminally ill, TLC - tender loving care - does indeec involve this and good deal more besides. In exploring tht spirituality of the carer we need to look no further than th gospels, for the pattern of Jesus' loving provides a model fo our own. It confirms our twentieth-century intuition thai loving is a costly business demanding a radical renunciatior of human distaste and prejudice, a gift of self which is oftet more than we had. bargained for. If the sugar-sweet comforl ting image of the gentle Jesus is a tawdry piece of kitsca masking the harsh and terrible love of our God made man] so too is a sentimental concept of those who care for the dying.
Room for Loving
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Love, especially in the hospice context, can be a very practical and earthly business. I think especially of David, a bachelor in his late forties who is a patient in the hospice as I write.
David is a wonderful man, one of the poor of our successful affluent society who has lost even the one possession that remained to him: his physical integrity. By the time he was referred to our service, the cancer in his mouth had recurred despite treatment and he had a painful malignant ulcer where his teeth should have been. I saw him regularly in my outpatient clinic, always accompanied by a young psychiatric community nurse who cared for him, but he refused admission, jealously guarding his independence despite a growing terror of choking to death. On Christmas day he gave in and came to spend the day with us. Never will I forget the moment when he handed me a bottle of champagne and a torn scrap of paper on which he scribbled 'I appreciate all that you're doing for me'. I asked him if he could manage a little liquidised turkey and was hard pressed not to cry when he said, 'Thank you, but a little watery porridge will be fine.'
'A little watery porridge, thank you.' His words went round and round in my mind all day, as I cooked and ate the , Christmas feast with the various members of my family. How SoC^it-indeed couTcTT banish from my thoughts the man whose mouth was full not of Christmas food, but of a foul necrotic tumour?
We all thought David must die soon, and indeed so did he, but in the perverse way of tumours of the face, although he was horribly mutilated there was nothing to actually kill him. Today, as I write, two months have elapsed and he is still alive, a gaunt figure crouched before the television, clutching his tissues and vomit bowl, mercifully oblivious of the appalling stench from his tumour which fills the room. It is difficult to explain the love-hate relationships we have with these spectres at the feast of life. We are not immune to the smell of decaying flesh, and like anyone, we long to escape to where the air is pure. We too are unable to understand his mumbled words and must kneel patiently by his chair as he struggles to write a few phrases on his notepad. We have long since admitted to each other that we wish his suffering could end. And yet alongside this wish, cohabiting peacefully with our distaste, is a real love for this broken man. We have come to
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/?oom for Loving
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value his humour and respect his courage, and like Professo, Higgins, we've grown accustomed to his face. We are proud that he feels sufficiently at home with us to leave the privacy of his room and expose his disfigured face in the dining room where all the world passes by. People mutter of him as of others, 'how awful. If it was a dog, you'd have it put down.' True. But then David is not a dog, but a man with cancer in his mouth, who is living out his last precarious days among friends, loved and cherished in a way that he has never known before. His is the experience described in this poem by Sidney Carter: the one surprise of being loved:
No revolution will come in time to alter this man's life except the one surprise of being loved.
He has no interest in Civil Rights neo marxism psychiatry or any kind of sex.
He has only twelve more hours to live so never mind about a cure for cancer, smoking, leprosy or osteoarthritis. Over this dead loss to society you pour your precious ointment, call the bluff i\jh§U* and laugh at the " fat and clock faced gravity of our economy. You wash the feet that will not walk tomorrow. Come levity of love, Show him, show me in this last step of time , Eternity, leaping and capering.
It is in this lavishing of love on patients like David that the hospice movement stands in a prophetic relationship to society at large, for it affirms the value of the brain-damaged, the mutilated and the old to a world which values the clever, the physically beautiful and the athlete. Only recently I spent the afternoon with a young French doctor who, when I took him to see our new hospice, still under construction,
exclaimed, 'I never before imagined that someone would build a place which is specially designed to provide comfort for the
dying-'
What I am arguing for here when I talk about love is not for more hospices or more time spent at work but about a set of attitudes. It is about developing a degree of insight into the patients' world - what the psychologists call empathy. With that insight goes a heightened sensitivity to the patient's distress and a searching for ways to relieve it - or at least not to make it worse. At heart, professional loving is about competence, empathy and communication. It is about becoming sensitive to the pain of others and therefore terribly vulnerable. For me, as for many, it is a way of caring which ^J, I aspire to, but achieve only some of the time. It is a costly lovingTor which I am repaid a hundredfold.
One of the most sensitive issues in professional caring is 'becoming involved' with the person we are caring for, the patient, or in psychological jargon, 'the client'. There is no standard teaching on 'how far one can go' in professional loving, and indeed any one carer will probably work differently with different people and at different times, depending on the time and personal resources available.
My own involvement with caring for the terminally ill in the hospice 'style' has led me in a particular medical direction, which ten years ago I would not have dreamed of. After qualifying as a doctor I embarked upon a career as a surgeon. '-N ■'■; ' !S I am good with my handstand planned to use my skill in treating hand injuries and burns, cancer and congenital deformities. To put it another way, I was a 'body' doctor who enjoyed reducing fractures, suturing wounds and generally patching up broken people. It simply did not occur to me to explore how my patients felt about their illness: my job lay in the diagnosis and healing of bodily ills and my psychiatric colleagues would take care of the depressed and psychotic. Psychology I wrote off in my youthful arrogance as being nothing more than common sense, which I thought I had in plenty, I blush now to think of my ignorance - though I know my life was less complicated and my work less costly before it dawned upon me that good medicine demands care of the whole person, body, mind and spirit.
The doctor specialising in terminal care is usually referred
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Room for Loving
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the cases where 'there is nothing more to be done' - where surgery, radiotherapy and anti-cancer drugs are either inap. propriate from the outset or have ceased to do any good, In practice (mercifully for our self-esteem and professional survival) there nearly always is something more physical to • be done: a fine tuning of pain control or drug manipulation to alleviate unpleasant symptoms. When this is done, however, we are in the same position as our colleagues -empty handed. What we have to do then is learn to work with these empty hands: to use them for comforting and healing of a different kind. A certain proportion of this kind of work is what is know as 'counselling': a skilled listening and interpretation of psychological problems and distress, This is what psychologists and psychotherapists and professional counsellors do. Even among these small professional groups there are differences of theory and personal style but all of them think in terms of therapists and client: it is a professional relationship based on the psychological needs of one person and the skilled response of another to those needs. The distance between them is integral both to the success of treatment and the survival of the carer.
Psychological work with the terminally ill has many of the features of other types of counselling and psychotherapy but the relationship is changed by two factors: the first is the shortness of the client's expected lifespan and the second is the enormity of his loss. In my experience, and I am neither psychotherapist nor trained counsellor, those facing death have a particularly urgent need of human warmth and honest straightforward communication. My personal 'style' has evolved over eight years of work in the field and is characterised by a degree of directness and informality that is unusual in ordinary medical practice. In ten years I have changed from being rather shy about physical contact to being quite at home holding patients' hands or letting them weep on my shoulder. I find that this physical aspect of comforting flows very naturally from honest communication about painful truths and is in no way dependent upon length of relationship. Perhaps I can illustrate this with a typical scenario.
It happens quite frequently that I am asked to see a patient in one of the surgical wards of our big district hospital. The referral may be to consider the patient for admission to the! hospice or just to advise on his pain and symptom control.
Not uncommonly I am asked to help out because the patient ' having difficulty coming to terms with his diagnosis or because the family has forbidden the doctors to tell him the truth about his illness and tensions are arising out of the deception-
One thing I have learned is that these encounters should not be conducted when I am under severe time constraints or very tired. I now feel free to ring the ward and say. 'I'm sorry, I'm at the end of my rope tonight. Will it be OK if I come tomorrow? I'll do it much better.' If the need is urgent I will go anyway, but if not I will leave it until I am better able to work with sensitivity. When I go to the ward I always ask the nurses about the patient before I see him or her. The nurses are usually much closer to the patient than his doctors and are often more aware of his hopes and fears. But when I ask them 'does he know?' - meaning, of course, does he know he has cancer and that he is going to die - they often look at each other and say, 'I think he knows, don't you? -but he doesn't say anything.'
Then, armed with as much information as possible, I arrange to see the person on their own. This often takes a bit of organising, but I have learned to my cost that 'heavy' conversations behind curtains can have a disturbing effect on the other patients who are inevitably sitting with their ears pricked to catch even the whispered confidences. Having the courage and authority to insist that a patient be put in a wheel-chair and taken into the office or, if bed bound, wheeled, bed and all, into a side ward is crucial, not only because of the importance of other patients not hearing but because both the interviewer and the patient are severely constrained in what they say by knowledge that someone else is listening. (One of the difficulties for nurses working in the community is that they do not feel they have the authority to insist that a relative leaves the room while they talk to the patient, so they struggle with the problems of communication in a three-cornered conversation in which an over-protective spouse often answers for a patient quite capable of speaking for himself.)
Once alone with a new patient I introduce myself, explain that I have come at the request of their doctor, and ask them to tell me their story. The fact that I am familiar with the history and diagnosis makes no difference to this manoeuvre
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for its purpose is not to inform me of things which I alread know but to establish a rapport and to elicit some of th submerged iceberg material of sadness and anger. It is in th> telling of the story that I meet my patient and in my listens to him that he meets me. This first meeting is a pivotal on< in establishing a therapeutic relationship and it may take m to an hour - sometimes longer. But it is time well spent ft in that hour one can establish bonds of trust and confidence which are the practical tools for later 'work'. Everythuif depends on the quality of my listening: the patient mus understand clearly from my verbal and non-verbal cues tha I am interested in him as a person as well as in his physica problems. This means not only paying careful attention at he speaks, but asking him to clarify issues which I do no; understand. As his story unfolds I make notes and if it doe not emerge spontaneously, I ask not only what happened and what the doctors said to him but how he felt about it then -and how he feels now. This exploration of the emotional at well as the physical component of the cancer journey is tht key to establishing a supportive relationship. It is often the first time a patient has been asked by a doctor - or indeec by anyone - how he feels about things and he may well begit to cry.
It is at this stage of the dialogue that the doctor, or othei worker, may further affirm the patient's worth and forgt bonds between them. Patients are nearly always embarrassed and ashamed if they cry in front of the doctor - and manv doctors find it hard to cope with. I well remember a surgical; colleague who, when a patient began to weep in a clinic, pui his finger on her nose in a jocular fashion, 'now, now Iris, wt don't want any of that, do we?' When a patient weeps wit! me, I draw a little closer to them and perhaps put a hand on their shoulder. I tell them that they must feel free to cry -that they have every right to be sad or angry or confused. This 'permission5 to cry is only a permission to be a human person and indulge in what is a very normal and therapeutic release of emotion. When the tears have passed, and the) usually do in a few minutes, the person nearly always feels better and somehow comforted, albeit by a stranger.
It sometimes happens during the course of such an interview, that a patient askes me if his illness can be cured. This is the question - feared by so many carers and so often answered
all
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with evasive platitudes or outright lies. I prefer to leave the issue of telling the truth about diagnosis until later; but I may saY at ^s Juncture tnal- clear> direct questions about a atient's diagnosis and future always deserve an honest answer. It is never right to lie. This does not mean that one should ever be brutal with the truth. One must listen carefully to what the patient is asking and respond slowly, one step at a time, monitoring the response and stopping when it appears that they have enough to absorb for the moment. The 'art' of breaking bad news is one we all need to learn and it should be adequately taught to all doctors and nurses in training.
As always we return to the two essential components of good caring: competence and compassion. Well meant kind-, ness is not enough, nor are the most carefully learned communication skills: but the two together can transform despair into hope, neurotic demanding behaviour into marvellous dignity and courage. ^^l\Sj>r
It is curious how this phrase 'dying wjth dignity' has crept into modern language about the care of the dying. I find it rather tiresome, objuring up stereotyped images of people    ■ ■•'■-^^ breathing their last in calm hushed surroundings, with nurses +VcKt, and family tiptoeing in and out of darkened rooms. I now V understand dignity in a rather different way which has more to do with integrity of personality than external order and serenity. One of the most important aspects of my work is JspM^. helping people cope with impending death by exploring their v*-***^ ^ fears, debunking the myths and facing the real ones truthfully with them. It is ironic that most 'undignified' or 'neurotic' behaviour in those facing death is the result of the way they have been handled by their carers.
A short time ago, while working with a colleague in the hospital outpatients department, I saw two middle-aged women who were behaving in a very undignified fashion, being aggressive, demanding and apparently unreasonable. Each was like a bomb on point of detonation, possessed by anger and discontent with the world in general and their doctors in particular. By coincidence we had had a run of deaths at the hospice and I had several empty beds so I offered to take the ladies in to 'sort them out'. My colleague ^wi/Htf was a little surprised as neither of them could be considered 'terminal', but was grateful to have the problem taken off his hands. I admitted both women directly from the clinic and
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Room for Loving
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stood back to watch the sparks fly. By the time I arrived back at the hospice they were in and already there was trouble, Kate's daughter met me at the top of the stairs to say that Mary had not stopped talking since she arrived and was driving her mother mad. I looked in the neat three-bedded ward and there was a very tense Kate perched miserably oo the edge of her chair while Mary gave vent to her feelingj from the adjacent bed. Luckily the bed in our single ward was temporarily empty while its occupant was at home for a couple of days; and so, lying in my teeth, I asked Kate if she would do me a great favour by changing to another room, and taking her gently by the arm I steered her out of earshot of Mary's diatribe.!v$wi{ Fleft-
over the next two weeks the nurses, my fellow doctors and I 'worked' with Kate and Mary. Ninety per cent of this consisted of being a sounding board, listening patiently and attentively while they told and retold the tale of their illnesses, These were all too familiar stories of fear and anxiety, magnified out of all proportion by medical collusion. Kate was the angriest. She was a chronic bronchitic who had nursed several of her elder sisters through terminal illness and then fallen sick herself. Suspecting the worst, she had asked her doctors (at St Elsewhere's, not Plymouth, I hasten to add) outright whether she had cancer. 'They patted me on the head, like a little girl,' she said, 'and told me not to worry.' But Kate did worry. Her 'bronchitis' did not seem to be getting any better and she was not responding to antibiotics in the way she used to. Eventually she was unable to cope alone and decided to go and stay with her daughter in Plymouth, The consultant gave her a sealed letter to give to the doctor who would be taking over her care. Safely at home Kate looked at the envelope and then, no doubt looking furtively to right and left, she opened it. Inside she found a letter which spoke of an elderly woman with an advanced incurable lung cancer who would soon need terminal care. 'The daughter knows, but we decided it would be better not to tell the patient,' she read. Kate was not only furious but humiliated. It was her body and her life - and yet here were these~pebple considering to keep her in the dark, treating her as if she were a child or already totally incompetent. It is little wonder that when she came to our clinic she was not the archetypal polite, deferential, grateful patient. Poor Kate! It was her carers who had
bbed her of her dignity. Two days later, it was a very different woman who sat on the hospice lawn stroking Trudy,
v assistant Michael's dog, and posing with a smile for the fV cameras who happened to be filming the hospice that jay By now Kate knew she had cancer and that she was oinfi to die - but she had control of her life again. It was her decision to stay in the hospice - and her decision two weeks later to spend £300 and risk shortening her life by going to London in a taxi to say goodbye to her friends.
The hard part for Kate will be the gradual relinquishing of her independence. Fiery spirits like hers find it very difficult to accept the loss of their freedom to move about unaided and ultimately the weakness that makes it impossible even to change position in bed. As Kate becomes weaker the burden upon her daughter will increase. She will need enormous patience to cope with the frustration of not being able to help and the sadness of seeing her mother fail. If only for her daughter's sake I hope that when Kate's time does come she is in ours or some other hospice, for her daughter will need all the help she can get to cope with her mother's anger and her own impotence and guilt.*
I do not pretend, of course, that the hospice world has a monopoly on skilled and loving care. One can find the same quality of care in many different situations: in a general hospital, in homes for the mentally handicapped, units for drug addiction or in services for the treatment of patients with AIDS. I think in particular of Ľ Arche communities or of my friends Benedict and Lila who share their home with a number of young schizophrenics. Benedict is an Orthodox priest and he and his wife Lila have eight children. For twenty years they have opened their home to people in need and for the past ten years this has meant young schizophrenics from the locked wards of psychiatric hospitals. Patients apparently uncontainable in a traditional institution become somehow tamed in their home, joining in the life of the family and watching the miracle of lambs being born. Lest we get carried away with sentimentality and the beauty of this vision, however, let me quote the conversation that I had with Benedict when I first spoke to him on the telephone. 'Today'
* Kate returned to her home in London and died peacefully in the local hospice.
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he said 'is my fiftieth birthday, and I have spent it scraps shit off the bedroom wall!'
I knew then that we were kindred spirits, for the only kiiy of holiness I can cope with is that which is firmly ground* in reality. As I said before, loving is a costly business M one needs an earthly sense of humour to survive. This poen by an English Benedictine monk is one of my favourites, 1 it has no illusions about the pain of discipleship:
Anoint the wounds of my spirit with the balm of forgiveness. Pour the oil of your calm upon the waters of my heart. Take the soLueal of frustration
from the wheels of my passion that the power of your tenderness may smooth the way I love. That the tedium of giving
in the risk of surrender and the reaching out naked to a world that must wound may be kindled fresh daily in a blaze of compassion
- that the grain may fall gladly to burst in the ground
- and the harvest abound.
c! «' !\
Ralph Wright
A New Commandment
My little children . , .
I give you a new commandment:
love one another . . .
John 13:33-34
In the next few chapters I will be exploring the manner of Jesus' loving as shown in some of the familiar gospel stories, But before I embark upon the New Testament teaching, I /v«-(,V< k *r would like to look back for a moment to the Old Testament (MAitdA H , understanding of love. Why, I wonder, did Jesus say that his command to love was new? He and his disciples were steeped ' . ■ in the Jewish scriptures and must have been deeply familiar with theology of the tenderness of God and his predilection •'->]' '■'■>-for the poor, the suffering and the oppressed. Throughout the Old Testament runs the theme of Hesed, the faithful covenant love of God for his people. We meet it first in Exodus, in the marvellous stories of Moses' encounters with God on Mount Sinai. True, God tells Moses that he may neither know his name nor see his face, but in amazing, scary moments in the cloud, when all the Israelites are cowering in their tents, God reveals himself. 'Yahweh, Yahweh, a God of tenderness and compassion, slow to anger, rich in kindness and faithfulness' (Exod. 34:6). I love the rich counterpoint between images of the mysterious unknowable God of Sinai and the God who is (kaihv*t^ tender and full of compassion. In Hosea we find the same message expressed in different, more poetic imagery. The prophet likens God to a father besotted with love for his child, , loving him unconditionally, in spite of neglect and rejection:
When Israel was a child I loved him, and I called my son out of Egypt.
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