Living with ageing and dying: palliative and end-of-life care

Edited by Merryn Gott . Published by Oxford University Press , Oxford UK , 2011 . ISBN 9780199569939 ; 284 pages ; RRP $62.95

Reviewed by Associate Professor Susan Koch

Helen Macpherson Smith Institute of Community Health, RDNS; La Trobe University, Victoria

This book is comprehensive and would meet the needs of any scholar interested in the topic. The editors and contributors are well known in their field and provide a breadth and depth of knowledge in this area. I found some chapters were intriguing and they raised many questions, causing me to reflect on my values and beliefs regarding growing old, and death and dying. Many of the issues emerging from the book are currently being discussed with policy makers, and it is timely this book has been published. As this is such a comprehensive text it does require stamina to read, however, the effort is worthwhile. I particularly liked the layout of the book; it is divided into five sections.

Section One sets the scene regarding population ageing and the need for provision of end-of-life care and models based on evidence. I enjoyed how the chapters in this section took you on a journey looking at old age as the boundary between life and death. Authors provide a historical perspective to discuss the issue of quality of life versus the inevitability of death and dying. The journey takes us from a time when ritual killing was the norm, to now, when household care is provided for the old and the frail. It is noted this change has come at great expense and personal sacrifice for some. There have also been changes in society that now see a transition from dying at home to dying in institutions (e.g. nursing homes and hospitals).

I was interested to read the need for integration between those in gerontology, palliative care and public health to ensure that policies reflect a non-ageist framework – a great move forward. The quote “Failing to recognise dying as a part of ageing and later life is also to fail to offer the care specific to the dying experience” could become the motto in palliative care. The authors propose that life is now something that is biologised, that is, that science will provide the solution for death, and ageing is seen as a problem with a potential technological solution, rather than a natural process. The thought that older people may turn to assistive dying as a result of ageism, and the feeling of not being in control or having their voice heard, is reminiscent of my own experiences, and provides cause for concern and a requirement for more open discussion.

In Section 2 there was some repetition of content that could have been consolidated into existing chapters. I found this Section less engaging than Section 1. Topics covered included bereavement counselling, Advance Care Planning (ACP) and the need for consumer involvement, so that end-of-life experiences are responded to, rather than becoming a directive of policy. The notion that we move from a paternalistic medical focus to a person-centred approach would ensure that cultural and ethnic needs would be met.

Section 3 focuses on carers and families. It was interesting to read how over time there have been (and will be) changes as to who provides the care, and the costs incurred. The authors provide thoughts on the changing family structure, realities of dying at home, what is home, the changing workforce and the financial implications of informal care support. The issue was raised on the cultural changes within the workforce, and the difficulties that may be experienced by those receiving and providing care with understanding the varying cultural and spiritual needs of death and dying. This section challenges the notion that palliative care is the domain of cancer and provides evidence that requires us to broaden our thinking to ensure palliative care includes such diseases as dementia and chronic obstructive pulmonary disease. The authors unanimously stress the importance of family inclusion when discussing end-of-life needs. A model is provided to demonstrate how preparing for end-of-life with inclusion of the carer and family can change the focus of caring as a burden to one of satisfaction; however, it is important that the skills and resources are provided if this is to be successful.

Section 4 provides examples of the settings where palliative care is delivered. While it is important to discuss the variety of settings where palliative care can be provided, I would suggest that this section could have been condensed into one or two chapters. Other readers may find the examples informative and useful.

Section 5 draws together the book by offering some ‘thoughts’ for research education and service delivery.