Book Review: O, Let me not get Alzheimer’s Sweet Heaven!

Latest figures from the Office of National Statistics show that the number of deaths attributed to Alzheimer’s disease and other forms of dementia continues to rise. 1 in 8 of all deaths in England and Wales were caused by dementia in 2018. For women over 80 the figure rises to 1 in 4. A defining aspect of MDMD is that we campaign for a change in the law to allow assisted dying for those in early stage dementia, provided that the sufferer still has mental capacity to make a life ending decision. This is the same criterion used by Dignitas and Lifecircle in Switzerland. In a recent poll we sponsored, 77% of those surveyed agreed with our position on this, either “always” or “sometimes” with an additional 11% “rarely”. Only 12% thought it never acceptable. A separate survey in Jersey, using the same questions, showed even stronger support: 86.7% agreed “always” or “sometimes”, with a further 3.3% rarely. Only 10% responded “never”.

This background demonstrates both the importance of the issue of dementia and the high level of public support for the MDMD position. The subject of dementia and assisted dying is complex and raises a minefield of ethical issues. A new book, “O, Let me not get Alzheimer’s Sweet Heaven! Why many people prefer death or active deliverance to living with dementia” is published on 17th October 2019 which provides a clear guide through this minefield. It is written in a style which is very accessible to the general reader, but is backed up with a wealth of academic references for the professional. There are many anecdotes, presented with touches of humour, to lighten an otherwise very dark subject.

The author, Colin Brewer, is a retired psychiatrist who has been involved in the UK right to die movement for over 40 years. In the late 1970’s he served on the committee of the Voluntary Euthanasia Society (now renamed Dignity in Dying). He has been on the Executive Council of MDMD since 2015 and is currently a board member. He is also the convenor of MDMD’s Medical Group. In the introduction he states “I have assessed nearly every British dementia patient who applied to go to Switzerland [for a medically assisted death] in the last few years…“. He co-edited the excellent collection of essays “I’ll See Myself Out Thank You“. With that background he is uniquely qualified to write this book.

The book starts by explaining what dementia is; the varieties; what it is like to watch a person’s decline; and what it feels like to live it, (as far as we can tell). The person you have been all your adult life changes. When you lose mental capacity you no longer remember what you might previously have wished for. Who is the real “you”?

The various forms of treatment and care are discussed. Those with mental capacity have a legal right to refuse treatment (like artificial feeding and hydration, or antibiotics). When mental capacity is lost the wishes of the former self to refuse treatment can be retained through a carefully written advance decision, (living will). A recurring theme throughout the book is the importance of making clear what your wishes are by using an advance decision. Appendices give examples and a pro-forma for an advance decision specifically tailored to those with a dementia diagnosis – though the strong recommendation is to write one long before that stage is reached.

The book then considers a host of objections to changing the law on assisted dying, and the motives behind the groups opposing change. Dr Brewer is a cavalier guide through the ethical minefield, fearlessly considering areas where others fear to tread. No one escapes his scrutiny – doctors, the palliative care community, religious leaders, representatives of disability groups. Comparisons are drawn with abortion and the holocaust. The book is undoubtedly provocative – but with a purpose – to enable evidence-based discussion of important issues and to expose what he sees as fallacious arguments and hidden biases.

The second part of the book considers the choices both the individual and society have now: Do nothing; Do something; Do it yourself; Do it abroad. The book is careful not to give advice on techniques for taking one’s own life, but does not shy away from discussing why some people feel that this is an appropriate option for them – people like Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge.

At the end of his foreword to the book, neurosurgeon and author Henry Marsh invites you to “Read this book and ask yourself: what will you want for yourself, or for your family, if you are diagnosed with progressive, irreversible dementia? And what right have doctors, priests or politicians to order us how to live, or how to die?” MDMD echoes this invitation. We also suggest that the book would be an excellent gift to doctors, MPs and others with interest or influence in this subject.

It is important to point out that this book is the personal opinions of the author. Clearly there is much agreement with the position of MDMD. However, other than offering comments on initial drafts, MDMD has had no involvement in the production of the book.

NOTE: MDMD has been advised that a few last minute technical difficulties mean that the book may not be available until a few days after the planned publication date of 17th October.