12. How we can help

Drawing on our experiences, we provide examples of what needs to be done and where help can be found to deal with the challenges and pain of facing up to death and dying – of relatives, friends, colleagues of all ages, and, not least, ourselves.

Elaine Sugden and Philip Giddings

As we said at the end of our first chapter, serious illness, dying and death itself pose profound questions which strike at the heart of what life is and our sense of identity. Whilst we do not pretend to have provided all the answers in this book, we are convinced that by encouraging people to talk about dying more openly we are offering a powerful way of helping one another as and when we have to face up to the questions and challenges which dying and death bring. In this book we have used information gathered in our professional and general lives. Between us we have had many and varied experiences of family and friends who have died: those at the end of a long life, although sometimes only after lengthy suffering for them and others, as well as those who have died before birth, in infancy, young or mature adulthood. Some deaths have been sudden, others prolonged.

When we encounter the deep pain and emptiness of the loss of a loved one, particularly a spouse or a child, it is comforting to know not only that we are not unique in feeling as we do but also to see how others have navigated these paths before. Others too have felt, on top of their deeply bruised emotions, confused and overwhelmed by medical terms and administrative procedures. So we hope that we have helped in this book to explain and de-mystify the processes and procedures and to point to some resources which will be helpful in these painful situations.

We all need to think about our own death and any preparation we can make for it.

Whilst there is no adequate preparation for the severity of the emotional shock of losing a loved one, there is much that we can do by way of preparation to help ourselves, and those who will have the responsibility of caring for us when we are dying.

We started this book because few people talked about death but, as we have been writing, there has been increasing discussion. Several changes in society have provoked conversations in the media: the survival of the majority into a frail old age, with need of care from family, friends, medical staff and care homes; the assisted suicide debate; the rising incidence of bypassing a funeral with the body going straight to the crematorium for disposal, and not least the current cultural norm that patients should be given information about their diagnosis and treatment and that: ‘no decisions about me should be made without me’.1

‘Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.’

‘The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.’ (Ellen Goodman New York Times)2

One way the death conversation has been explored is in ‘Death Cafes’.3 These occasional events have been held in several locations in the UK and are open to all. At a Death Cafe people drink tea, eat cake and discuss death. The stated aim ‘is to increase awareness of death to help people make the most of their (finite) lives’.

A participant in a Death Cafe (2015) wrote: ‘What we did all share were our own individual experiences of people, including oneself, who have gone through, or expect to go through the business of supporting people who are dying, by helping them to talk about the things that most concern them, which are common to people of strong, little, or no religious faith. It was valuable just to be able to talk with other people objectively about their several experiences of dealing with death, the importance of making a Will, of “resuscitation issues”, of expressing their wishes about their funeral arrangements, ways of meeting the costs, and not least having the chance to listen to those whose approach to the subject differs significantly from one’s own.’

The Church of England is running a pilot project on the same lines called Grave Talk.4 Tea and cake are also involved as participants discuss a range of questions about death: its meaning, practical issues, bereavement, funerals etc.

‘Churches are well-placed to host open conversations for people to explore the deeper questions of life and death.’ Revd David Primrose,Director of Transforming Communities for Lichfield Diocese

A group of friends could decide to do something similar in a coffee morning or after a dinner meeting. I am not sure that cake is essential to the subject though always nice to have. 

Chapter 12 Practical Matters gives information on writing a Will and preparing a Power of Attorney, and Chapter 3 Difficult Decisions speaks about making an Advanced Decision document.

What can we say and do when friends or family have some bad news and are facing the possibility or even probability of an earlier death than they ever anticipated?

‘Talking about death at the end of life is a difficult, awkward proposition for both the dying person and for family members. Each may have different reasons for wanting to stay silent or to talk. Some family members say nothing, out of fear of saying the wrong thing. Or the dying person says nothing because of a superstitious belief that to acknowledge death is to hasten it. And family members often want to shield their grief from the dying person, while the dying person similarly wants to protect family members. I wanted to talk to her about death, but there was always this feeling of hope that she was going to make it.’ (Words of a son whose mother died without a conversation about dying.5)

The main thing about talking to a person who is facing the possibility of a shortened life span, or someone close to them who is going to be affected by their illness or death, is listening.

Initially, after a life-threatening diagnosis the person can be numb with shock. If you are involved at this time you can probably do little else but sit with them showing that you care. Holding a hand can be a powerful means of communication. If you are there, sitting silently, and they want to talk, they will do so.

Communication is what human beings do, even if it’s just holding someone’s hand.' (Dr S J. Baumrucker, associate editor in chief of the American Journal of Hospice and Palliative Care.6)

If you are a close friend or family and have indicated that you care, you might need to listen over and over again, to the same story. This process can be very important and patience is needed.

If you are like those quoted above, not wanting to make things worse by talking about the illness you can be sure that almost always the person will find some relief in being able to talk about what is surely on their mind.

Making a comment such as: ‘This must be very difficult for you’, or maybe a question: ‘Do you want to talk about it?’ is usually the way in. You might be rejected – if so, ‘back off’. Nothing will have been lost. There is a lot more to be lost by not giving the opportunity for a conversation that is needed.

‘Walking in the alien land of illness that few friends and relatives know how to enter, some days I am eager to talk about my feelings about the illness and treatment, on others I am just tired of thinking about my illness at all, I never know what mood I will be in but I would be delighted to have my friends ask bluntly what I feel like talking about.’ (Elizabeth Burnham 7)

You might not be a close friend or relative, but people do not always open up to those close to them. It can be a relief to find someone willing to listen, to help them get things sorted in their own mind. You don’t need to ‘fix’ it for them, just listen unless or until you are asked a question.

It is important to know that sometimes when you are trying to help there is anger at the situation and if this is directed at you (because you happen to be in the firing line) do your utmost not to retaliate but soak it up – though it may seem so, it is not, in fact, personal.

We need to talk, communicate, share feelings and cry together.

When I first went to Burrswood, when people cried, I used to over-comfort them out of my own need. When they were crying I might put a hand out and say, ‘It’s all right’ and stem the flow. That isn’t always helpful. We need to cry and sometimes tears are part of our healing. Count it as a privilege when people feel safe enough with you to cry.'  (Gareth Tuckwell TAD Author)

What is important in the dying phase?

To understand that death is near

People do need to know from the doctors that they are nearing death. As a cancer doctor I (ES) often thought it must be obvious to the patient and family when things were not good and that death sooner rather than later was inevitable. Often this was not the case. They did not have my experience. Unless the doctor pronounced, they thought there was no need to worry, life was secure and probably more treatment would be available. However just when death will occur is not possible to say and life can be considerably shorter or longer than any doctor predicts.

A doctor writes: “I’ve been meaning to talk to you about something,” I stammered, looking past him at the eye chart on the wall. “I’m worried about you, because every time I see you, you’re losing weight and seem less like yourself.”“It’s because I’m dying.” He was matter-of-fact, as though he’d just said it was raining outside. (Dr Sunita Puri 8)

To be the physician my patient needed, I had to accept that neither he nor I could be fully prepared for his death. I had to trust that a man three decades my senior was capable of handling life-altering information, that he had experienced tremendous loss before, that nothing and nobody could control how he would contend with this last leg of his life. But instead, I waited for him to initiate a conversation that was my responsibility to start.

‘Doctors are still not good at talking about dying. Less than half of the patients who were capable of understanding were told that they were dying. Only a fifth were asked about spiritual needs. How can we involve patients in decision-making if we don’t tell them what is happening? How can they make their spiritual or cultural preparations if they don’t know what they are facing? How can we treat people according to their beliefs and wishes if we do not ask them what they are?’  (Dr David Brooks, Past President of the Association for Palliative Medicine of GB and Ireland 9)

Whilst the National Audit of Care at the End of Life: 2014, 2018 and 2021  have shown encouraging steady improvement in information sharing with dying patients (when possible), an assessment of wider needs had not improved.  Only one third had been asked about spiritual, and only one quarter about cultural needs.¹⁰

Spiritual as well as physical needs

Dying is more than a physical event. Rather, the experience reaches us on all levels — psychological, social, and of course, spiritual. We cannot neglect the spiritual needs any more than we can neglect the physical needs. Care for the dying needs to be holistic.'11 

Spiritual needs relate to the way in which people understand and live their lives in view of their beliefs and values: with others, themselves and with God.

‘--perhaps especially at the end of life we become aware that we are spiritual beings’.  (Spiritual Issues at the End of Life John Hardwig, Professor of Philosophy 12)

Those approaching death in old age have been found to want to look back over their lives, to reminisce, look at photos and perhaps revisit favourite places.

They want to die in a way that is consistent with their values, wishes and earlier life.

They want to find hope beyond the grave.

‘One Christian minister said: ’We talk a lot about what we believe comes after death. But we skip pretty quickly over dying itself, except to say, “Make your peace with the Lord.” Doubts and questions can be taken as a sign of a weak faith. As a result, Christians can still find that their faith gives them no guidance about how to live the final chapter of life.' 13

A hospice has produced a very useful leaflet on the hospital/hospice/care home chaplaincy service and gives information on the end of life needs for those of 12 world faiths. 14
Chaplains can bring an accompanying, listening and hopeful presence to those of any faith or none.15

Family

This is the time to encourage attempts to reconcile family members and resolve family disagreements – before it is too late.

‘No death is entirely our own’. ‘Dying is not a medical event, it is a social, family and spiritual event’(anonymous quotes)

After family members are dead is not a good time to try to reconcile with them.'

When people first realise they have a life-shortening illness they often want to take care of family members. Then as death draws closer they become more introspective, and this is often the opportunity for meaningful discussion. You can ask: ‘How do you think you are doing just now?’ If the answer is ‘Not so well’, the person is looking for a chance to talk. Try to ask: ‘Do you want to talk about it?’

Those who work in the field of death and dying emphasise that acknowledging the end of life and saying goodbye, in whatever form, is an emotional and even a physical balm, reducing stress and depression.

Hospice workers find that, as death approaches, words become less important, touch and silence become more meaningful. Music, for some families, has its own language.

A niece had tried to talk to her aunt about the differences they’d had and was rebuffed. Finally, she had the conversation she’d wanted by singing Amazing Grace to her aunt, who lay in bed, close to death. ‘I wasn’t sure I could do it, but I did,’ she says. ‘I felt she could hear me. She squeezed my hand.’16

Acceptance of Loss

'People facing death[often struggle] to find meaning in this last chapter of their lives; from a bleak and [shortened] future; from [being unable] to deal meaningfully with family and loved ones at this final opportunity – from total dependence on others; from loss of capabilities; from being turned from a [helper] into a burden on others; from the indignity of being unable to take care of even basic bodily functions; from a sense that their bodies or their minds are [not behaving]; from being out of the world in which the healthy live; from guilt; from [feeling abandoned]; from anger about all of this; and from isolation due to the reluctance of the healthy to broach the subject of dying. (John Hardwig 17)

Can we encourage those living into a frail old age to consider how they want to live before they die and even how they want to die?

Purposeful living

There are challenges here for family, medical, nursing and care home staff. Atul Gawande, in his book Being Mortal,18 urges us to give the elderly more independence, allow them to take risks, incorporate children and animals into their lives and generally give life a purpose other than waiting in safety to die. These ideas are being taken up in some nursing and care homes.

The elderly could, as a matter of course, be encouraged to talk about their aims and wishes for their remaining days, months or years as well as where and how they wish to die. (See chapter 4.)

This last phase of life will be a challenge. Can it also be an opportunity?

Prayer?

For those who believe in a loving and caring God, prayer is valued, but let the person know that you are praying.

Those who are grieving for loss of health or in bereavement often say they cannot pray; it is important that others take on that ‘job’ for them.

Prayer for a person in need is something in which we can all participate. When we pray for people we stand before God as their representative.' (Elizabeth Heike, A Question of Grief 19)

If you are a person of faith it might be appropriate to ask the person if they would like prayer. If you pray, keep it short and simple. Christians have found familiar prayers (e.g. the Lord’s Prayer; the Evening Collect or J. H. Newman’s O Lord support us all the day long) to be helpful – but sensitivity to the person is crucial.

O Lord, support us

all the day long,

until the shadows lengthen, and the evening comes,

and the busy world is hushed, and the fever of life is over, and our work is done.

Then in your mercy,

grant us a safe lodging and a holy rest, and peace at the last.

Amen.

Death as a release

The event of death can be a relief for a spouse or parent who has already been grieving in anticipation.

After the death of my cousin aged 45 from oesophageal cancer my aunt, his mother, wrote to me in India: ‘It’s all over for Jeffrey now, no more pain and suffering.’   (Elaine Sugden TAD Author)

On the other hand, for one who has devoted themselves to caring there is always a deeply lonely existence when the one who has consumed time, energy and thought is no longer there.

My father was devastated when my mother with Alzheimer’s-type dementia went into a home rather against his will, although she was getting too difficult for him to handle and keep safe. He exchanged the frustration of the changes that had taken place and the difficulties of caring for the wife who had looked after him for over 30 years, for the dreadful loneliness of being at home on his own.

End Piece

We trust that this book will be both an encouragement and a source of hope. Where is this hope to come from? For us and for many, it comes from our Christian faith that God does not want death to be the end for us but only the gateway to everlasting life. And he sent Jesus to overcome death and sin for us – and he showed that he had done  this by rising from the dead. We can be confident of this because the Bible’s New Testament reports the evidence of his meeting, not only with his special friends, the apostles, but with hundreds of other people as well.

One of those was a man on a journey to Damascus all fired up to arrest and kill Christian believers. That man was Paul who after his dramatic conversion wrote those powerful words of confident hope which we quoted at the end of chapter one. It is worth pondering them and sharing them as we grapple with the challenges that dying brings. We do not need to face it alone for, in spite of all the agonies, physical and emotional, death may bring, the love of Jesus Christ Himself will be with us.

As St Paul said:

I am convinced that neither death nor life . . . neither the present nor the future, nor any powers, neither height nor depth or anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord (Romans 8:38-39).

That is why, whether we are the person dying or we are facing the death of someone close to us, we can and should talk about dying with confidence and hope. Had I had a book like this available when Duncan telephoned me, it would have been so much easier to talk to him and his wife about preparing for his death.

This ‘cartoon’ tells the story of how “Bill” with a terminal diagnosis was helped by a range of people who became “Bill United”. 

https://palliverse.com/2016/07/27/bills-story-bill-united-as-a-compassionate-community/

Notes

1 Liberating the NHS DH 2012 No decision about me should be made without me. Department of Health  2012. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216980/Liberating-the-NHS-No-decision-about-me-without-me-Government-response.pdf (Accessed August 2023)

2 Goodman Ellen. How to talk about dying. An American journalist speaks to friends about family deaths: https://endoflifewa.org/news/how-to-talk-about-dying/ (Accessed August 2023)

3 Jon Underwood founder of Death Cafes died in 2017. Read about his legacy here:  https://www.artofdyingwell.org/founder-death-cafe-died/ (accessed August 2023)

4 Grave Talk. (Church of England)  https://churchofenglandfunerals.org/gravetalk (Accessed August 2023)

5 Finding the right words. WebMD URAC accredited health information archives website:www.webmd.com/healthy-aging/features/talk-about-death (Accessed August 2023)

6.Dr S. J. Baumrucker, associate editor in chief of the American Journal of Hospice and Palliative Care :www.webmd.com/healthy-aging/features/talk-about-death (Accessed August 2023)

7  Elizabeth Burnham, Elizabeth, When your Friend is Dying (Kingsway, 1982), p24.

8 Sunita Puri, As a Doctor, I Know Being Ready to Die Is an Illusion. Guest Essay New York Times March 29, 2023 https://www.nytimes.com/2023/03/29/opinion/how-to-accept-death.html (Accessed August 2023)

9.Dr David Brooks past president of the Association for Palliative Medicine of GB and Ireland in The Guardian, reporting on the National care of the dying audit for hospitals in England May 2014: https://www.theguardian.com/commentisfree/2014/may/15/doctors-talking-about-dying-patients-palliative-care  (Accessed August 2023)

10 National Audit of Care at the end of Life (hospitals).  https://www.hqip.org.uk/resource/national-audit-of-care-at-the-end-of-life-third-round-of-the-audit-2021-22-report/ (Accessed August 2023)

11 Adapted from: Living with Grief: Spirituality and End-of-Life Care, ed., Kenneth J Doka, Amy S. Tucci, and Keith G Meador, Hospice Foundation of America, 2011.

12 Spiritual Issues at the End of Life', John Hardwig, Professor of Philosophy: https://www.jstor.org/stable/3528311  (Accessed August 2023)

13. Same as 12.

14.Here for all. Spiritual and religious needs of people at the end of life. https://stnicholashospice.org.uk/wp-content/uploads/2020/12/End-of-life-spiritual-needs-2020-v2.pdf  (Accessed August 2023)

15.Nolan Steve. Spiritual Care at the End of Life. Jessica Kingsley Publishers

16.Jane Meredith Adams in WebMD: www.webmd.com/healthy-aging/features/talk-about-death (Accessed August 2023)

17. Spiritual Issues at the End of Life', John Hardwig, Professor of Philosophy: https://www.jstor.org/stable/3528311  (Accessed August 2023)

18.Gawande, Atul. Being Mortal. Profile Books, London 2014

19.Heike, Elizabeth. A Question of Grief. Hodder and Stoughton, 1985, pp.116-117