A Lover's Quarrel 11 2 A Lover's Quarrel Like Robert Frost's, a prophet's quarrel with the world is deep down a lover's quarrel. If they didn't love the world, they probably wouldn't bother to tell it that it is going to Hell. They'd just let it go. Their quarrel is God's quarrel. (Frederick Buechner, Wishful Thinking) In 1982 I moved my main profession locus from the cancer wards of Plymouth General Hospital to become the Medical Director of a small hospice for the dying. My work at the hospital already involved a good deal of terminal care so when I was offered the job at the hospice I did not see it as a dramatic change of direction. In the years that followed, however, I have become aware that the hospice has come to stand in prophetic relationship to the mainstream of medical care in our area. I should say at once that this role is neither conscious on the part of the hospice nor specifically articulated by anyone, but I believe that it is none the less true. Nor are we unique, for throughout the country hospices are having an effect upon medical thought and practice which is quite out of proportion to their size. They are able to carry out this prophetic function because they fulfil three major criteria: they are drawn from the mainstream of societyTolive and work at one remove from it; they have the contemplative space to reflect upon the problems confronting them; and they do not choose this role but find themselves speaking a truth that they cannot contain. Like the prophet Jeremiah, they complain bitterly: You* have seduced me, Yahweh, and I have let myself be seduced; You have overpowered me: you were the stronger . . . The word of Yahweh has meant for me insult, derision, all day long. I used to say, I will not think about him, I will not speak his name anymore. Then there seemed to be a fire burning in my heart, imprisoned in my bones. The effort to restrain it wearied me, I could not bear it. Jer. 20:7-9 In a consideration of the prophetic role of the hospice movement it is important to be" clear on the meaning of the word prophet, for it is often misused and therefore misunderstood. Frederick Buechner, the American author of a pithy little book of theological definitions called Wishful Thinking, writes: 'Prophet means spokesman, not fortune teller. The one whom f in their unfathomable audacity the prophet claimed to speak ' for was the Lord and creator of the universe. There is no evidence to suggest that anyone ever asked a prophet home for supper more than once.' Prophets then, are individuals or groups of people who are called both to listen and to speak out. They must listen to God, to the 'signs of the times' and to the cries of the oppressed and when they have understood the message, speak out, whatever the personal cost. Prophets are no holier than any one else. They are frequently very wounded people - but like Jeremiah or Isaiah, they put their woundedness at the service of God. When they hear the voice which says 'Whom shall I send? Who will be our messenger?' to their horror, they find themselves answering, 'Here I am, send me' (Isa. 6:8). Christians are familiar with the prophetic books of the Old Testament and the more poetic passages of Isaiah, Jeremiah, Amos or Hosea are declaimed from many a cultured pulpit. It is easy to domesticate the prophets in the same way that we tame the gospel and lose sight of how threatening what they said must have been to those who heard it. It cannot have been easy for Amos to pass this message from God on to his people: Trouble for those who are waiting so longingly for the day of Yahweh! . . . I hate and despise your feasts, I take no pleasure in your solemn festivals When you offer me holocausts, 12 Sharing the Darkness r A Lover's Quarrel 13 I reject your oblations, and refuse to look at your sacrifices of fattened cattle Let me have no more of the din of your chanting, no more your strumming on harps. But let justice flow like water, •and integrity like an unfailing stream. % Minister of Health and put our points as cogently and forcefully as we were able. Alas, we were no match for an experienced politician and he wriggled urbanely out of every attempt to pin him down so we returned home muttering darkly. Eventually, however, protest was so widespread that the drug was restored, so perhaps our efforts were not in vain. Although it was exhausting, I have to admit that I rather schlief Amos 5:18,21-21 enjoyed taking on the faceless giants of Westminster -especially when we won our cause! A much more difficult The fact is that prophetic messages are, almost by definition, situation is to find oneself at odds with one's peers - the men unwelcome because they challenge the accepted status quo. and women one meets daily across the lunch table or in the As Buechner puts it: 'The prophets were drunk, on God, and hospital corridors. It happens, from time to time, that we at in the presence of their terrible tipsiness no one was ever the hospice are involved in an unpleasant and painful conflict comfortable. With a total lack of tact they roared out againsi of loyalties between the needs of a particular patient and the phoniness and corruption wherever they found them. The) unwritten rules of professional etiquette. It normally happens 1 were the terror of Kings and priests. Today's prophets are just as tiresome. Amnesty like this: a friend or relative of a patient rings the hospice to Inter- ask for help because someone is in pain or very distressed by national shouts its truth about imprisonment and torture from the attitude of the doctors who are treating them in refusing the housetops and persists in writing importunate letters tc to answer their questions openly. The medically correct busy politicians and dictators. Greenpeace gets its sill] answer to such a question is 'I'm sorry there is nothing I can rainbow boats in the way of important nuclear tests and tht do. You must go back to your own doctor.' If the distress is anti-smoking lobby keeps drawing attention to the five billion severe, however, it is not easy to behave 'correctly' and one pound revenue the government receives from cigarette advertising. It is the same in the medical world. Just when the government is trying to tidy up the shambolic National Health Service and make it more efficient, health workers will go on about the emotional needs of the sick and ask for mon resources for such tedious and unproductive groups as th< elderly, the handicapped and the dying. I myself had a small David-like skirmish with the Whitehall Goliaths a few years ago when the government decided to reduce the nation's health bill by removing about 90 per cent of drugs from the list of those available on prescription. Tc do them justice it was, by and large, a sensible manoeuvn except that in their enthusiasm they removed a number o! drugs which were vital to our use. One of these was a laxativt which was the staple diet of expectant mothers and al patients who need strong narcotic drugs to remove their pain Outraged, we protested. We gave interviews to the press wrote letters to the government, all to no avail. Eventualit we besieged Whitehall itself. It was quite an experience. Ter of us doctors went to London for an interview with th( is faced with the difficult choice of confronting a colleague or manoeuvring behind his back. It is always better to be open, of course, but this can lead to hard words and feelings because many doctors are very possessive of their patients and bitterly • resent any interference from the outside. oS£fcJwi *■ It seems that this problem is one that will not go away, for despite our efforts to conform to the system people continue fir) 5/nfl\jW) to beat a path to our door, seeking the help that they seemed unable to find elsewhere. Some of these callers are of course the sort who will always be dissatisfied, taking their troubles from doctor to doctor, unable to accept advice given to them or the fact that nothing can be done to help them. Leaving those sort of folk aside, there have been many that we have been able to help, needs that we have been able to meet, out of what are really quite limited resources. Let us look at some of the most common of these needs which, by their very existence, point to a flaw in the existing health services. Wt/eiiWiliiig/ The first [and most obvious thing for which people seek the heliToTVh ospice is the relief of pain. Everyone is afraid of pain, and well they may be for it saps the strength and crowds pi ■ 14 Sharing the Darkness r 4 Lover's Quarrel 15 the consciousness until the person is overwhelmed and wishesjnCi discomfort and let her 'die in dignity' without drips and quite simply for death. Pain is very common (though nottuDes and a colostomy? They must weigh up the needs of an inevitable) in advanced cancer and yet in a hospice setting individual patient. An elderly spinster may dread more than nearly always comes rapidly under control. Why? Why is thisinVthing the indignity of surgery and dependence upon rela-not the case in hospital, and in the community? Do we havetives who do not want her, while a married couple may be special instruments, techniques which are not available tOprepared to pay any price for a few extra weeks together. One ordinary people? The answer absurdly, is no. We use the:annot lay down the law, only state the basic principle that same drugs, the same techniques and practically no high-tech;aCh patient has a right to be treated as an individual and medicine. It is a question of experience in diagnosis and in^e given the choice about whether or not they want invasive the handling of a few very common drugs and of a meticuloustreatment to prolong their life. It is only by being open with attention to detail. More than anything it is an attitude whichpeople about their situation that one can learn that, in the says pain is soul destroying and unnecessary and we will notvast majority of situations, quality of life is more important rest until it is relieved. ^an numerical length of days. Put like that, it sounds so self-righteous. I do not mean it All this seems so obvious. What then goes wrong? Why is to be so. I am just as ignorant in other areas of medicine asanti-cancer treatment pushed to seemingly outrageous limits some of my colleagues are about pain control in the dying.or elderly people submitted to major surgery when they wish That is why we are specialists. My complaint is not againstthat their lives would peacefully end? One of the great individual doctors but rather against a system of governmentdjiemmas for doctors is that much of the time they are which spends money on weapons or tax relief for the richworking at the frontiers of cancer medicine, using drugs which while people in state hospitals lie curled up in pain whichhave a 10, 20 or 30 per cent chance of cure. If the drug works could be relieved. they are heroes and bouquets are given - while if they fail But distress in the dying is not only about pain andeVeryone mutters that it was criminal that the person was unpleasant symptoms, but about much more fundamentalpUt through so much suffering and died anyway. I thank God issues such as the inappropriate prolongation of poor qualitythat I do not have to make these decisions, life and a way of treating people which is, quite unintention- Another factor however is that as doctors we are trained ally, terribly hurtful. One of the things which has becomefrom the cradle to fight disease and to save life. It is instinc-very clear to me over the past few years is that, in sometive, deep rooted, second nature. Disease is the enemy and situations, doctors get trapped into prolonging the life ofdeath the ultimate disaster. When our patients get better we people who, frankly, wish they were dead. The reasons forfeel good, affirmed, fulfilled. When they die we feel bad, this are very complex, but let me attempt to unravel them, guilty, a failure. Now in many ways this conditioning is a A woman gets, say cancer of the ovary. She has an operation good thing: it spurs us on to work appalling hours and exhaust ^ to remove the growth and then chemotherapy to try and ourselves in the struggle to save life. It pulls us out of bed at eradicate the malignant cells. So far, so good. She goes into three in the morning to deliver babies or patch up drunken ' remission and is well and happy for the next two years. Then motorists; it drives us on to work on automatic pilot when the growth comes back. This time the doctors know from head and heart are too exhausted to care if the patient lives experience with other patients that they cannot cure her. or dies. How then can we be expected to change gear and '"->""''-'i^ of course, it involves the learning of new skills: how to handl they must usually wait to see a doctor because it is impossible old drugs differently and how to communicate more effec to predict how long a given consultation will take and we tively. It involves making fools of ourselves with role-play am must see as many people as need to be seen. Most people video feedback, learning that we do badly what we though take this in their stride. What they do find hard, however, is we did superbly well. And worst of all it involves allowinj the depersonalising treatment of being stripped and put into our citadel to be breached by those we used to perceive a hospital dressing gowns before they see the doctor. A patient tiresome charlatans: the practitioners of alternative medicine coming up to see the doctor for the first time will consciously We have to learn to sift out the useful paramedical treatment or unconsciously, dress themselves in such a way as to present from the magic, discarding the coffee enemas but holding 01 themselves as they would wish to be seen. Their clothes are to and evaluating the usefulness of meditation, relaxation ant body language which declare who they are, individual people psychotherapy. We have to learn to be whole person doctor witn tneir own tastes and ideas- If we ask PeoPle to remove because our patients are whole persons. It takes so mucl their clothes and put on a uniform before they meet the doctor, more time and energy. It is destroying our protective hier we are removing from them some of the protective armour archies, our sense of omnipotence. Our corridors of powe; they need for this difficult interview. We are in fact deperson-have been invaded and we are having to learn humility! alising them, treating them as objects and we make them less Another area in which we at the hospice find ourselves ii able t0 communicate effectively because they are nervous and the role of advocate is the way in which patients are liable t( embarrassed. be treated as objects, rather than people. Perhaps I shouk ^ the same way, if a third party is present at a medical , however, contact with suffering i their physical symptoms and check the progress of the disease. I order investigations, prescribe treatment and then go away and see someone else. That is the way things are. We too are human and, as Eliot says, human kind cannot bear too much reality. So what is the prophetic hospice movement saying to mainstream medicine? Perhaps, like the prophets of old, we are the spokesmen for the oppressed. We listen to the cries of the people and try to speak out for them. We relate that they want to be treated as normal responsible people. They want to have their illness explained to them in words that they can understand and to be consulted about its treatment. They want to retain their dignity as individuals and keep some control over their lives. They want to participate in their care and share in our decision-making. They want us to be honest normal. Every day I see men and women whose lives havi been disrupted by incurable cancer. Many of them an completely devastated. Darby and Joan couples who havi loved each other to the exclusion of anyone else are suddenh separated; mothers of tiny children wither and die lingering mutilated deaths, trapped day and night with the foetid tumours that replace mouth or breast or genitals. It is indeec cruel and we find it very hard. How then do we, the carers, cope? We cope in a numbe; of different ways. The most important is that we are skilled in our jobs so we do whatever is necessary to treat the sick Being able to do something is a marvellous protection from pain. The other thing that happens is that we create I professional distance between the client and ourselves. Wq 20 Sharing the Darkness with them, warm and humble. More than anything, the! want us to combine our competence with compassion and when our hands are empty, to stay our ground and share thf frightening darkness with them. More than anything, the; 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 worn 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