it helps to talk
by Jenny Bryan
At 78 and with advanced ovarian cancer, Nora knew she was dying. She didn't know how long she might live and she was having treatment to help her live longer. But no one was pretending she would be cured. A committed Roman Catholic, Nora gained great comfort from her faith. What she found frustrating was the difficulty other people had about the fact that she would die.
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'Nobody seems to want to talk about the prospect of my dying,' she said. 'I have to face up to the fact that I'm not going to live all that much longer, and that's the difficult thing to come to terms with – the dying process.'
There are over 500,000 deaths each year in Britain. Some people die suddenly as a result of an accident, a heart attack or a stroke, and neither they nor their loved ones have time to talk about dying. But one in four people die as a result of cancer and many more die at the end of a long illness. They have time to talk about the end of life, but some miss out on the chance to say their goodbyes and prepare themselves and their families and friends because no one can find the words.
Louise and Tim talked a lot about Louise's expected death as a result of a brain tumour. Louise planned her funeral in detail – right down to the purple suede coffin and the horse drawn carriage that would take her to church. Tim still grieved after she died, but he and his young daughter were more prepared for life without Louise than if everyone had kept silent.
Dr David Sturgeon, consultant liaison psychiatrist at University College London Hospitals, has a lot of experience talking to people with terminal illnesses or who are dying. He explains that most people, like Nora, are most concerned about the dying process.
'Most people have thought about being dead and some have concerns about oblivion and not existing. But people tend to worry more about what is going to happen when they are dying – whether they will be in pain, whether they will be able to breathe, whether they might choke,' he says.
the dying process
Dying is rarely the dramatic event of film and theatre. For most, it is a gradual closing down of the body's systems, like a fire going out. Many people slip into a coma from which they do not wake up or they die in their sleep. Modern healthcare means that people should not die in pain or great distress. Morphine-like drugs are not only highly effective pain-relieving drugs, in larger doses they can also have a relaxing and sedating effect.
The moment of death is hard to predict, even quite near the end, and relatives may be upset by the noisy breathing that someone who is dying often makes.
'They may sound as if they are gasping for breath, but we know from people who have regained consciousness that it is not painful or distressing. It's just the respiratory centre in the brain closing down, so breathing becomes uneven and eventually stops,' explains Dr Sturgeon.
when to talk about it
There are no rules about when to talk about dying – no checklist or seven point plan. It's a very individual and highly personal thing. Some people start to talk about it when it becomes clear that their illness can't be cured, even though it will be many months before they die. Others prefer to wait.
When doctors use the term 'dying' they usually mean that someone has up to a few weeks to live. Telling someone they are going to die is never easy and some relatives ask that the dying person isn't told. But Dr Sturgeon explains that this imposes a barrier of secrecy between the dying person and their loved ones:
'The vast majority of people who are dying know that they're dying, and keeping it a secret means that a time that should be close and intimate between the dying and their loved ones becomes a time of relative isolation and loneliness.'
By failing to talk, each side may think they are protecting the other when, in reality, they are simply becoming isolated from each other. When there is such a large and important 'no-go' area for conversation, it can be hard to think of anything to say which doesn't threaten the secret.
If someone makes it clear that they do not want to know, their doctor or nurse should not force information on them, but Dr Sturgeon explains that there is often an underlying anxiety in such cases which it may be possible to sort out.
'They may have known someone who died in a distressed state and don't want to think about it, but if they can be encouraged to talk about this sort of fear, we can often reassure them and show them that their situation is very different,' he says.
who should tell?
The GP is often the best person to tell someone that they are dying, especially if he or she knows the family well. But it may be the hospital specialist or nurse – whoever the dying person trusts and feels comfortable with. Giving this type of news takes time and space; it's not something that should be done in a hurry, in a cramped corner of a ward. People need time to take in this kind of news and certainly don't take it all in on first hearing it. They may have questions straight away or they may want to wait and talk again with the doctor, nurse or other specialist who has given them the news, or to someone else.
I don't know what to say
It's quite understandable to feel tongue tied when you're talking to someone who is dying, even when they know they are dying. You may not know what to say or be afraid of saying the wrong thing.
Dr Sturgeon explains that it's important to treat someone who is dying as normally as you can, to chat about what's happening in your life and to ask what they've been doing.
'They don't usually want tea and sympathy, they want you to recognise them as still there and still a part of your life,' he says.
Tell them what's happening at work or at home, talk about films you've seen, programmes you've watched on TV. Their horizons may have become narrower, but they may still be reading, listening to the radio, following the football. Your mutual interests and the things you disagree about won't have changed. Don't come to blows, but being very ill doesn't stop you having opinions!
You may decide to write to someone who is dying, if you get choked up every time you try to tell them how you feel. As with any letter, you need to be careful how you write because it may be read again and again. But you may find it easier to express your feelings on paper than in the emotional atmosphere of a hospital ward, nursing home or hospice.
being prepared
When Keith discovered his bowel cancer had returned and there was nothing more that doctors could do, he methodically put lists together on his computer of all the things his wife, Jean, would need to do after he died – getting the death certificate, going to the registrar, contacting the funeral director. By doing it when he still felt quite well, Keith was able to joke about his preparations:
'It sounds morbid, but it's not. It's being realistic. I'm leaving Jean with as little to worry about as I possibly can,' he explained.
Being open and honest with someone who is dying helps them prepare physically and emotionally, and to make practical and financial arrangements. People with young children or young friends or relatives may want to write letters or leave treasured possessions or photographs in 'memory boxes' for them to look at as they grow up. Helping someone to do this is likely to be upsetting, but there will be smiles and laughter as well as tears as you talk about past events.
Knowing how someone feels about what they would like done with their body after they die can also be very helpful during the stressful time after their death. Some people have very definite ideas about whether they want to be buried or cremated, what sort of ceremony they want, and what type of memorial they would like. Talking about all these things sooner rather than later takes some of the stress off those who are left behind to make the arrangements. It's easy to say, 'Don't be silly, let's not talk about such things,' but you may regret it later.
support groups
Some people who are dying find it hard to talk about it because they are angry and frustrated by a process that is beyond their control. They may withdraw from the support of their friends and loved ones – something which only makes them feel more isolated and alienated. They can be too scared to talk, wrongly imagining that if they ignore it, it might go away.
Some hospitals and voluntary agencies run support groups where people with cancer can discuss the issues they are facing and get practical advice. Many people get support from others who are dealing with the same challenges. They find it easier to discuss difficult issues, including death, with people who are facing the same problems than to talk to family and friends who they feel may be distressed by such things. Often they find that groups give them fresh insights and help them to talk more easily to those who are close to them.
life after death?
Of course, no one really knows what happens after we die, but many people do gain strength and comfort from talking to someone about their views and beliefs. Those with strong religious convictions may want to see priests or clerics of their own faith, but even those without strong religious beliefs may want to talk to someone with experience of spiritual counselling. Just because your friend or relative has been fiercely atheist all their life doesn't mean they won't want to talk to anyone about what may or may not come next. Giving people the chance to talk about dying is as much a part of their final treatment as any other aspect of their care.
help and info
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organisations
CancerBACUP
3 Bath Place
Rivington Street
London EC2A 3JR
Helpline: 0808 800 1234 or 020 7739 2280 (Mon-Fri 9am-8pm)
Tel: 020 7696 9003 (Mon-Fri 9am-5.30pm)
Website: www.cancerbacup.org.uk
Provides up-to-date information, advice and support to cancer patients, and their families and friends on all aspects of cancer and its treatment, and on the practical and emotional problems of living with the illness. The helpline, above, is staffed by specialist cancer nurses.
Macmillian Cancer Relief
89 Albert Embankment
London SE1 7UQ
Cancerline: 0808 808 2020 (Mon-Fri 9am-6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.cancerlink.org
Contact the freephone Cancerline, staffed by people with experiences of cancer, for cancer information and support, details of local organisations, and relevant publications and other resources.Website has further information.
Compassionate Friends
53 North Street
Bristol BS3 1EN
Helpline: 08451 23 23 04 (every day 10am-4pm, 6.30-10pm)
E-mail: info@tcf.org.uk
Website: www.tcf.org.uk
Offers understanding, support and friendship to bereaved parents, and their families, who have lost a child of any age and from any circumstance. Support is offered through the helpline, local group meetings, one-to-one visits, letter contact, weekend retreats and gatherings. Produces a quarterly newsletter for parents, grandparents and siblings, and a range of other publications for the family and for professionals. Also runs a postal library service.
Cruse Bereavement Care
PO Box 800
Richmond
Surrey TW9 1RG
Helpline: 0844 477 9400 (Mon-Fri 9.30am to 5pm)
Email: helpline@cruse.org.uk
Website: www.cruse.org.uk
Cruse Bereavement Care exists to promote the well-being of bereaved people and to enable anyone bereaved by death to understand their grief and cope with their loss. The organisation provides counselling and support. It offers information, advice, education and training services.
websites
DIPEx.org
www.dipex.org
This site offers a unique support service for patients affected by a range of conditions and is designed to provide a true insight into the impact of illness, offering personal experiences on many issues and the answers to those questions patients are sometimes too afraid to ask.
Funerals UK
www.funeralsuk.com
Information on arranging and planning a funeral – whether a loved one's or your own. Includes bereavement counselling advice, and information on green and DIY funerals, and non-religious funeral services. Features regional directories.
If I Should Die
www.ifishoulddie.co.uk
Offers practical information and advice on issues such as coping with a terminal or life-threatening illness, legal requirements following a death, organising a funeral, helping the bereaved, and details of charities and counselling services.
Patients Talking
www.patientstalking.com
A website for people to read and write diaries about a wide range of medical conditions and, if requested, confidentially make contact with others. It can also help people who may not directly have a condition but have concerns for a friend or relative with an illness.
Lessons from a Hospice Spiritual Counselor
www.healthandage.com/html/min/gentle_endings/
web/counselor.htm
Short article discussing the philosophy behind hospice care, the importance of good listening skills, recognising the importance of faith, and lessons from the dying.
Directgov: Bereavement
www.direct.gov.uk/Audiences/Parents/FamilyIssues
AndTheLaw/Bereavement/fs/en
Help and support with practical and emotional aspects of death and bereavement, for England, Scotland, Northern Ireland and Wales.
Department of Health
www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCare
Topics/Cancer/CancerGeneralInfo/fs/en?CONTENT_ID=4001753&chk=wIuTlC
Information on Supportive and Specialist Palliative Care.
reading
Beyond the Blue Mountains by Elizabeth Basset (Continuum International, 1999) |
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The Dying Soul by Mark Cobb (Open University Press, 2001) |
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Healing Conversations: What to Say When You Don't Know What to Say by Nancy Guilmartin (Jossey Bass Wiley, 2002) |
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On Life After Death by Elizabeth Kubler-Ross (Celestial Arts, 1992) |
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The Tibetan Book of Living and Dying by Sogyal Rinpoche (Rider, 2002) |
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Living with Grief by Tony Lake (Sheldon Press, 1984) |
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A Journey Through Grief: A Guide to Living with Bereavement by Tracey Cusick (Eric Box Funeral Directors, 2002) |
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(July 2002, resources updated January 2005)
