A Good Death – A guide for patients and carers facing terminal illness at home by Dr Elizabeth Lee, published by Rosendale Press (10 Greycoat Place, London SW1P 1SB, tel 020 7 222 8866), 1995, 188 pages, £8-99 (£1 extra for p&p), ISBN 1 872803 16 4. Review by Nicholas Albery.
This is a truly excellent book that not only patients and carers should read but also doctors, nurses and social workers. In summary, on The Natural Death Centre’s booklist, it scores 8 out of 10 overall (no book scores higher) and 4 out of 10 for how academic it is, 5 out of 10 for how spiritual and 8 out of 10 for how practical.
It has many tips that go beyond common sense. Here are a few of them:
# ‘How long have I got [till I die]?’ This is the question that everyone asks and no one answers. The unwritten code of practice among doctors is to reply, ‘I would love to give you an answer but the truth is that no one knows’. … If you need an answer to this question, you should encourage them to throw caution to the wind and make a best guess. Those that stubbornly refuse to can often be pinned down by your asking ‘If it was your mother who was ill like this, how long would you guess?’
# Explain to the professionals caring for you that you would like your selected professional to be your ‘key worker’ – whether GP, district nurse, social worker or home care specialist nurse.
# If you don’t get on with your doctor and find her unsympathetic, try not to say that you find her difficult, rather say something like ‘Although I appreciate all you are doing, I find that I am very comfortable with Doctor X, and hoped he might be able to visit me more often’.
# You may have a long list of questions for your GP. It may help to write them down before you see her.
# If you want more information about the quality of care a hospital provides to patients who are dying, you could ask some of the following questions: Does the hospital have a private interview room? What about overnight accommodation for relatives? Do terminally ill patients have the use of special beds – Pegasus beds for example? Have any nurses on the staff completed their ENB 931 continuing care course which gives them special training in the care of terminally ill patients?
# When trying to choose a care home, you could ask the same questions as you would for a hospital (above). Add a simple question like ‘Do sick residents have special food prepared or do they share the same menu as everyone else?’ The answer may tell you a lot.
# How can one diplomatically keep away unwanted visitors? Restrictions are easier to impose if they are sanctioned by the doctor or nurse: ‘I’m sorry but the doctor has said no visitors after eight o’clock,’ or ‘Nurse insists he must lie quietly after his midday medication and not be disturbed for two hours.’
# One alarming thing after death, if you are not expecting it, is that sometimes there is a slight gurgling or sighing noise of air escaping from the throat or a sudden shifting of a limb as muscles relax.
Dr Elizabeth Lee fully supports The Natural Death Centre’s view that, with adequate support, most patients would choose to die at home. As she writes in a letter to the Centre:
‘I recently talked to my community nurses about the death of one of their patients at home. She was an elderly widow, very strong minded and cantankerous, so much so in fact that neither her family or neighbours offered any practical support for her at home. She took her own discharge from hospital against medical advice and came home to die alone. In spite of her isolation she was able to achieve the death she wanted. She received a tremendous amount of support from her home help, community nurses, GP and night nurses. She was cared for very well at home and had one-to-one attention for many hours a day. She died peacefully one morning when the community nurse was with her. Although I have not added up the hours that she was alone I am sure it was considerably less than the patients in hospital. Perhaps she knew that by going home to die she would be less isolated and alone than those who die surrounded by professionals in hospital.’
Dr Lee has sensible criticisms of the present system:
# Specialist palliative care services are ‘diseasist’. If you are one of the majority of patients dying of something other than cancer you probably will not have access to a specialist nurse.
# The absence of a comprehensive night sitting service is a woeful inadequacy in the care provided to the chronic sick and terminally ill in Britain.
# There are not enough home care assistants.
# In many hospital palliative care beds, couples are not allowed to sleep together or even lie in each other’s arms. A woman who pulled the curtains around her dying husband’s bed and hopped in to cuddle and hold him, was ‘discovered’ and chastised by a nurse, who implied that this was definitely unacceptable behaviour.
# Doctors and nurses often avert their eyes and hurry past the bed of someone who is dying. Children in a cancer war were once asked to rank the staff in order of importance to them. The sister, house doctor, registrar and consultant came last. Top of the list was the ward cleaner, followed by the student nurse and the junior staff nurse.
# Deaths in hospital are denied. Ward curtains are drawn around every bed so that no patient is disturbed by seeing the dead body moved away. Compare this to a death in a small hospital in Kenya. The patient’s mother stood and raising one arm above her head began to sing a hymn. All the other young women on the ward stood by their beds in their pink hospital nightdresses, faces turned to the dead woman and singing with her mother. They faced her death and they bid her goodbye.
Patients need to be allowed to acknowledge the death of fellow patients and to say goodbye in some way.
# Dr Lee even puts out a call to socially inventive designers. There needs to be, she says, the female equivalent of a male urinal bottle, which can be used lying down.
The Natural Death Centre has many books in its library on care of the dying. This book, however, would be one of my recommended best buys. The other top-scoring books, in my no-doubt biased view, are: The Natural Death Handbook which has more details on aspects such as Living Wills, financial preparation for dying, family-organised funerals and Near-Death Experiences), Coming Home by Deborah Duda (American and more spiritual than Dr Lee’s book), Green Burial by John Bradfield, Grace and Grit by Ken Wilber (about the death of his wife from cancer) and Who Dies? by Stephen Levine (on the theme of conscious living and dying).
# Dr Elizabeth Lee, 26 Goldney Road, Clifton, Bristol BS8 4RB.
# For the Natural Death Centre’s booklist please send an SAE to 6 Blackstock Mews, Blackstock Road, London N4 2BT (tel 0871 288 2098; fax 020 7354 3831; e-mail: rhino@dial.pipex.com). Or order direct from the book order page.
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