1. Why and how do we need to talk about dying?

Describes wrestling with how respond to hearing from an old friend that he had inoperable liver cancer - and why silence will not do. Summarises what is covered in the rest of the book.

Philip Giddings

  • Book Chapter

What could I say? My old school friend Duncan had just rung to tell me the bad news. I knew he had not been particularly well but it was a shock to hear that, after many tests and treatments, the doctors had concluded that he had inoperable liver cancer and only months to live. He was
very matter-of-fact but I could not help wondering what he was really thinking, and whether he was prepared for death. Typically, he did not want to discuss it and expressly forbade me to tell the friends we shared since school.

As the months crept by, I wrestled with the question of what to say to Duncan, his wife and our friends. Should we visit him and, if so, for how long? Yes, we did – but briefly. What to say at Christmas – probably his last? How could we support his wife? We were of a generation in which men ‘didn’t do feelings’. In our society, there continues to be a wall of silence around the subject of death and dying. All kinds of euphemisms are used to avoid the plain truth. Even medical and caring professionals struggle with how to put it. And often the result is that we end up saying nothing at all. So too often, after the death of a friend or relative, we find ourselves saying, ‘I wish I had been able to say or do . . .’ We are too easily put off by fear – both our own fears, and the ones we guess would trouble the dying or their relatives. Too often, we take refuge in talking about trivia and banalities because to introduce the subject of death might seem morbid or demoralizing. So often, we collude with the assumption that the best way to deal with this unpleasant reality is to ignore or deny it – hide our anxieties and sorrow in diversions which we hope will numb our pain at the prospect of losing someone we care about.

This book has been written from our shared conviction that silence will not do. We need to talk about dying and death. We need to do that because it is an unavoidable part of human life: death comes to us all; we can try to ignore its coming, but sooner or later it comes. And before we face our own death, most of us have to deal with the pain of the death of someone close to us – the brute fact of separation from that person. We cannot avoid the fact that our own life, and the lives of those close to us, come to an end.

We also need to talk about dying and death because talking about it will often be helpful to the dying person and their relatives and friends. This is especially so if, as is often the case, talking leads to action on our part or the part of others. We should not lightly avoid the opportunity to show care and love, in word and deed, when we can. ‘Talk about’ means of course listening as well as speaking and even sharing silence together. Many of us find it difficult to find the words to share our deepest emotions, and that is when an arm round the shoulder or squeeze of the hand speaks more eloquently than mere words.

There are also practical benefits from talking about the approach of death rather than pretending it is not going to happen. There are preparations which need to be made, such as making or updating a will, planning the funeral, making contact with folk with whom one has lost touch, perhaps taking the steps necessary to heal a long-standing breach with a relative, friend or neighbour. Some discussion of these and other matters can help us, and the dying person’s relatives and friends, to deal more positively with the death itself and its aftermath.

Yes, but how? What can we say? It is one thing to feel, as I did when Duncan rang, that we ought to talk about dying and death. It is quite another to know how to go about it.

As we have discovered whilst preparing to write this book, many people want to talk about death and dying, particularly to close relatives and friends – but do not quite know how. So it is to help them that we have produced this book. Let death no longer be the great unmentionable, but something that we talk about honestly and constructively.

We begin in chapter 2 by looking at the different ways in which people respond to life-threatening illness. Surprising as it may seem, for some, life is enhanced by such an illness as they discover and cherish the people and experiences that really which such an illness brings, even to the extent of refusing to accept what seems inevitable. Whatever our response, there will be difficult decisions to be discussed and taken, especially by those nearest and dearest to the dying person.

In most cases, discussion begins with a conversation with a doctor or consultant about the diagnosis of the illness and how to treat or manage it. Many people find such discussions difficult. So in chapter 3 we consider how we go about talking to doctors and other practitioners about medical decisions. There is a risk that we push doctors into playing the role of God, as patients and relatives want neither to stop treatment nor to take away hope of recovery. In particular, hope is a premium and too easily it is all focused on the doctor. ‘Surely there is something you can do.’ Difficult questions can arise at any point of the treatment process: the response to an initial diagnosis of terminal illness; ongoing issues with treatment, curative or palliative; or decisions about withdrawing treatment which is no longer helpful, or not attempting resuscitation. Here we also deal with ‘advanced directives’ (also known as ‘living wills’).

A recurrent theme throughout this book is that, like most human beings, we lack control over the circumstances of our own death. We don’t know when we will die, since mortal disease can often involve significant pain, and the possibility of shortening that period of pain is bound to arise. Neither do we know where we will die – in hospital where medical expertise is at hand or in the more familiar surroundings of one’s home, or how we will die – and this has been central to the debate on the controversial questions of euthanasia and physician-assisted suicide. In chapter 4, we tackle these difficult questions of when, where and how and draw on some remarkable experiences of the work of palliative care professionals and hospices.

Sometimes, however, death comes unexpectedly, even suddenly – as with my own wife whilst I was writing my contributions to this book. In such cases, there is no time, or very little time, in which to talk about dying – so how do we handle that? How can we talk about ‘sudden death’? This is the subject of chapter 5. In such cases, death may be the result of a car accident or an accident at work, at home, or during a holiday abroad. It may be the result of crime or war or a so-called ‘natural disaster’. In these cases we are simply confronted with the stark reality of living without
our loved one, our neighbour, our colleague. So how do we respond? And how do we deal with the difficult questions about who, if anyone, is to blame? Do we go into denial and try to carry on as if nothing has really changed? Or do we try to find someone who understands, with whom we can talk? We next turn to two particular types of sudden death. In chapter 6, we address the tragedy of suicide and how to cope with the practical and emotional issues it raises. And in chapter 7, we consider the death of a baby, either as a result of a miscarriage, stillbirth or, as in the case of my own son Andrew, during the very early hours or days of life.

With both suicide and the death of a baby, it is necessary to consider carefully how we talk about them to children as well as adults. In chapter 8, we also consider the particular challenges which come when a child is diagnosed with a terminal illness, and the additional emotional stresses which arise in that situation. How much should the child be told? When is the time to ‘let go’? What about the different stages of childhood – from infancy to adolescence? What to say to other children – siblings, friends, classmates? And what to say to parents struggling with their own advance grief? Here we are privileged to draw on the expertise of the children’s hospice movement and other agencies for dying and bereaved children, which have done so much to transform children’s (and parents') experience of dying.

All the questions we have addressed so far raise the issue of what happens after death: is death ‘the end’ or is there life after it? In chapter 9, we consider the range of views, from the secular world and from the world of faith and, from the Christian perspective to what the Bible says about death, about heaven, and about hope.

Many people want to avoid talking or even thinking about death because they are afraid – afraid of pain, afraid of loss of control, afraid of the unknown, afraid of death itself.

But this reluctance to engage has to be overcome when, as a result of an illness, a terminal diagnosis or the death of a

loved one, the stark reality of dying and death confronts us. So in chapter 10 we consider how to face up to our fears, in their many dimensions. Here we draw on the experience of those in various counselling professions, as well as the significance of the Christian concept of hope.

We follow this in chapter 11 by considering how healing can come to our minds and spirits even as we face the dying of our bodies. In spite of the tremendous advances of medical science in recent decades, there remain limits to
what medicine can achieve. This means that there comes a point when it has to be admitted that there is no prospect of ‘cure’ of our ailments. In that situation, the role of medicine, consultants, doctors, nurses and other carers changes. Its emphasis moves from ‘cure’ to ‘care’– making the process of dying as comfortable and painless as possible.

At this point, particular difficulties may arise for people
of faith. For example, what now is the role of prayer? How can we pray? For what can we pray? How can we bring hope to the dying and to loved ones? Will the absence of healing in the sense of cure undermine faith?

In chapter 12 we turn to some of the practical questions which have to be tackled – putting your affairs in order, making preparations for an expected death, and what to do when someone dies at home. In addition to making a will, and the possible consequences of not doing so, there are questions of speaking to and/or seeing relatives and friends, and the need to ‘make one’s peace’ with some. And, for many, this will be an opportunity to think about funeral arrangements.

In our final chapter, we return to the initial question of how we can help when someone is given the bleak news that they have a terminal illness. Here we offer some practical advice, and point to resources which can help, noting the variety of contexts in which these are needed – spouses, children, parents, other relatives, friends, colleagues, members of social groups like churches. How can we talk about it? What can we say and at what point? How do we say it? How do we deal with our emotions and struggles? To accompany this, at the end of the book we provide an Appendix entitled ‘Where to find more help’, which contains more and fuller details of where additional information and help can be found, both in printed materials and online resources. Serious illness, dying and death itself pose profound questions, striking at the heart of what life is and our sense of identity. We do not pretend to provide all the answers in this book. But we do believe that, by encouraging talking about dying, we are offering a powerful way of helping one another as and when we have to face up to these questions and challenges. By showing that many have trodden these paths before us, by explaining and (we hope) de-mystifying the processes and procedures involved, by suggesting ways of making sensible preparation for what is bound to come, and by pointing to other resources which will be helpful to those in particular situations, we trust that this book will be both an encouragement and a source of hope to everyone, whatever their religious persuasion. We the authors are Christians who believe that experience confirms the truth of those ancient words of St Paul writing to the church in Rome: 'I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord (Romans 8:38).