This book is short, clear and provides an account of the difficulties of making decisions in a way that is easy to understand, although the concepts are complex and difficult situations are described. Because those case studies in the text are the stuff of everyday life for people who work with families and people with dementia, the analysis and discussion would be of value to anyone working in this field. It begins with a discussion of moral decision-making. Summaries of some of the major theories of medical ethics are described succinctly and, even more interesting, the situations in which they might conflict are outlined. The discussion challenges the reader's attitude, and makes it quite clear that making ethical decisions is not easy or clear cut, but gives us hope that it is possible to make decisions, and to get better at making decisions over time. That practical and upbeat approach to situations which some people would find appalling and horrifying is most uplifting. It would be very easy to get depressed and think that there is no right answer, and it is therefore impossible or even inappropriate to make a decision. Rather we are supported to believe that, messy though the process might be, we can make good decisions if we work hard at it. I like that ethic.
The fundamental truth, that communication and relationships are crucial for good decision-making are outlined in a chapter called ‘Being true’. The authors point out that even though there are profound ethical dilemmas, everything that is done, however apparently trivial, is endowed with the possibility of ethical value. Being true is not just about telling truth, but is clearly about a form of integrity that can enrich all of our dealings with people, even when they have been damaged by their cognitive impairment. It is for us to work on those relationships and bear witness with our patients and clients who are on such a difficult road. Consent and capacity is always an issue with dementia, and is covered clearly in this book. The emphasis on getting the facts is refreshing. To do the right thing you need to be informed, knowledgeable and professional, and that means that communication is at a premium. You can't know anything about what your client wants without highly developed skills of communication. The dilemma sometimes disappears if you know what is going on and what is wanted. My only slight reservation is around the notion of a ‘feminine’ ethic of care. I don't find that notion helpful, but it might be that I am a rather ‘macho’ lady professor. If I reinterpret this idea, that care and concern are virtuous, in terms of my own view that good professionals always work with a higher ideal in mind, whether it is a religious or to promote ‘the health of the people in our community’, then I can just about stand it. This is a small issue in such a practical and helpful text.
The discussion of quality of life in the context of the end-of-life is rich and rewarding. The good practical suggestions about remembering that everyone is different, about honesty being a virtue, and about bearing in mind the narrative of someone's life, are hugely valuable. This text should be standard reading for anyone who is working in dementia care as a nurse or social worker, but the concepts in it would stand for any long-term condition, or for any condition that affected the cognitive capacity of the patient or client. As I get older, I would be very pleased to discover that those who might end up caring for me would have at least some of the insight and clarity of thinking of these two excellent authors. In particular, I recommend this book for medical students for they should have ethical literacy as part of their basic tool kit.