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End of Life
The Essential Guide to Caring by Mary Jordan & Judy Carrole Kauffmann
Reviewed by: Frances Leckie, Independent Living's Editor
End of life issues are hugely topical; yet again, the news is full of stories of patients being hastened to their end by a doctor who claims to have been motivated by a wish not to prolong suffering. Perhaps now is the moment to really engage in an open debate about choices in death, but until that happens, this book will fill a gap in most lay peoples' knowledge of the processes around death and bereavement, and help us face the end of life - our own or that of someone we care for - with more understanding.
This is a powerful and informative book which tackles what is pretty much the last taboo left in our society. People are ready to bare all about anything from addictions to intimate relationships - but dying and how we cope with the death of someone we are close to, have perhaps cared for through illness - this is a subject that makes most of us shy away, whether through fear or embarrassment.
Death is very much not a part of life, but is kept as something separate, managed by experts and outside of most people's everyday experience. Not so long ago, when medical practice was perhaps not so successful, every family had close and direct experience of death, which made them better able to deal with the event than we are now, when most people don't die at home in their own bed, to be laid out in their front parlour for friends and neighbours to pay their respects. We have lost the old traditions around death and mourning, and haven't found the right way to replace them, preferring to avoid rather than confront the finality.
End of Life looks at the practicalities involved in a life coming to its end, from making a Will or setting up a Lasting Power of Attorney to funeral arrangements, organ donation and memorials. Packed with information which would be extremely helpful for anyone trying to organise a funeral without being pressurised into following the path suggested by funeral directors or traditionalist relatives, it will tell you where to find a biodegradable coffin and what rules you have to follow about burials (surprisingly few, as it turns out). Although written primarily to help family carers, much of the practical information would be very helpful for any individual thinking about the steps they should take to put their own affairs in order, and make sure that their wishes are known and respected, with regard to medical treatment, pain relief, artificial feeding, etc.
Perhaps even more valuable, however, is the attention given to the emotional aspects of death and grieving. I found the chapter on end of life in care homes and hospitals deeply moving, as it highlighted the effects of "empty chair syndrome" on other residents and care staff. The point is powerfully made that in an effort to minimise the impact that a resident's death will have on their fellows, the event is often brushed over in a way that leaves people feeling that they too will be excised from people's memories as soon as they die, and that disregards the strong attachments often developed by the staff who have cared for the departed. Medical and care staff are often as much at a loss as anyone else about how to deal with death and bereavement, and few of them receive the training that could help them to communicate more sensitively with friends and relatives – and, indeed, to manage their own emotions.
Another powerful chapter deals with the particular extra complications around the death of an individual with mental or cognitive impairments. As we live longer generally, and more of us therefore develop dementia, this is an issue that will affect us in increasing numbers, and again, the book makes a strong case for improved training for staff involved in end-of-life care, so that good palliative care and respect for individual differences are provided to those who are unable to make their wishes known.
The way that grief affects us all, differently and for different amounts of time, is also carefully explained, and it is helpful to understand that although everybody will go through it, nobody can project their own experience onto another, and there are no right and wrong ways to grieve. Equally, the book highlights the importance of providing support and understanding for a bereaved person, and not allowing our embarrassment or feelings of inadequacy to get in the way of sympathetic communication. The authors suggest we should adopt a recognisable, non-religious symbol of mourning (their proposal is a leaf-shaped lapel badge), which would allow people to communicate their loss to others, without having to talk about it, and would signal to the world at large that this person is grieving and may need extra consideration for their emotional state.
Publisher: Hammersmith Press
Price: £14.99 paperback, 174 pages
Click the links below for more information that may be of help to carers:
Independent Living's guide to financial benefits
Independent Living's guide to telecare - services to monitor your friend or relative's well-being when you can't be there.
For information on products to help make life easier and more comfortable, please visit our Independent Living Product Centre
Independent Living's guide to respite care
Independent Living's guide to palliative care
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