In this book there are many helpful comments and suggestions to help people facing serious illness. This perhaps is its greatest strength. I cannot think of many books for the patient but legion are the titles written for the healthcare professional.
The opening chapter is entitled 'Living with serious illness'. So often individuals feel that life has come to an end once the diagnosis of a serious illness is made and all they can do is sit around focusing on their own problems awaiting the inevitable. Somehow the message needs to be got across that there is still a great deal of living to do. You can live an active life albeit within the limitations of disease and enjoy a great deal of satisfaction. I remember a patient who upon discharge from the hospice boarded a plane bound for Spain and enjoyed four weeks' holiday in the sun. Others have achieved important personal milestones.
There are also useful sections on setting realistic goals, the importance of looking after yourself, finding support by asking questions and not being a passive patient, talking with others, and family dynamics. There is a useful chapter on controlling pain, which avoids the use of technical language and may be helpful for people facing the prospect of taking drugs they cannot pronounce and worried about side effects.
A chapter about planning ahead will help people realise they still have choices regarding treatment. We are becoming more patient-centred in treatment plans but many feel intimidated by the highly technical world of the large modern hospital. I can think of some of our patients who would benefit from the chapter on 'managing other symptoms'. This section looks at breathlessness, nausea and vomiting, bedsores, and depression. There is simple advice which will help individuals find relief.
The most important feature of this book is the help it provides in planning for the future and remaining in control of treatment and life. There are many books on the topic of dying, some autobiographical, others medically orientated, but few offering help and advice to the person affected by serious illness. The size of the book may be somewhat daunting to a frail individual.
My negativity about the book has two parts. The first is size, over 200 pages. I do not know of many seriously ill patients who could cope with something this large. Secondly, and here lies my major concern about this book, it is written for a North American audience. Many references are not applicable to the UK. For example, in this country hospice care is free to the patient and may last a year or two. In North America health insurance policies seem to provide for six months' care (p53). Local authority structures are also very different. People will lose interest if the book fails to address their need. Several photographs should be removed from a second edition as they are simply awful (pp 80, 87, 111, 123, 192 especially). Unless you want to locate a Website address the 20 pages of organisations will be of little use. Changes need to be made for this book to benefit those living on this side of the pond!
Reviewed by
Stephen Henwood
(Chaplain, St Francis Hospice, Havering atte Bower, Essex)