Baroness Finlay reviews 'One Last Thing: How to live with the end in mind'
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4 min read
Wendy Mitchell’s exploration of living with dementia whilst preparing for the end of life may contain a strong thread of optimism – but fails to provide satisfactory answers to some crucial questions
Strangely enough, the strongest part of this book is the epilogue. Wendy Mitchell has had a life full of unexpected challenges, from moving into her new dream home as a family of four, but soon to be three, to the inevitable losses over the years of friends near and far who died all too young. Her words of adapting to the “new person” she has become describes how she has emerged from “a deep depression” when first diagnosed to then “pull herself out of it” and “light the way for others”. Adapting to her diagnosis of early onset dementia, she has used it to “be an educator, a campaigner, an inspiration to many, many people” and to explore new avenues.
She has rightly received accolades for opening eyes on how mental capacity fluctuates from foggy days to days of clarity, how the Mental Capacity Act here in the United Kingdom requires us all to support people to maximise their capacity and how capacity is decision-specific. Fortunately we recognise, in law, the intrinsic worth of each person – unlike in some states in the USA, where impaired capacity can result in a person receiving a blanket label of being deemed incapable of decision-making.
Her gentle clarity describes the concepts and practicalities of drawing up a Lasting Power of Attorney document to designate another to take decisions for you if you lose capacity. That must be a person or persons you trust completely – for Wendy it is her daughters. Wendy explains the advantages of having more than one person listed and the importance of clearly stating treatments you don’t want, such as cardiopulmonary resuscitation or antibiotics.
Wendy wants to leave her mark on the world – and she has done so
Dementia takes bits away; it takes quite different courses in different people. Wendy describes her fears of what might lie ahead, her fears of living a life that she does not find enticing now. But her ability to adapt and plan makes it difficult to see how she will define the red line that will make her want to end her life.
When she and Anna, her support writer, interviewed me for this book, she was having a foggy day. She wanted to argue for medically assisted suicide, but it was difficult to untangle this view through her own eyes, from the implications of legal change for vulnerable patients. Her praise of Californian assisted suicide legislation seemed to sidestep the dangers for the vulnerable, or that those with dementia are ineligible. Evidence is emerging from Canada of patients offered lethal drugs but denied even simple social care adaptations that would allow them to live better despite their illness.
It felt inappropriate over an internet call to be tackling the complexities of legal change or why she wants those responsible for her care – her daughters and her doctor – to have the responsibility of determining when to abandon supportive care and to end her life. Her description seemed unclear of when that point will be and how they will know whether she then wants to adapt further to her changed dementia. Current UK law does not allow that to happen; Canada’s worrying experience with ever-escalating numbers of deaths from euthanasia suggests that, in contrast, our current law protects her and many hundreds of others.
Wendy wants to leave her mark on the world – and she has done so. Her epilogue explains how throughout life she, like so many, has adapted to all kinds of unexpected events. And a strong thread of optimistic hope runs through her book.
As she describes, while the sands of time run through one’s fingers, “you know more intuitively that control is – and always was – nothing more than an illusion”. We cannot control the things that really matter in life: when disease will hit – or tragedy snatch away those we love deeply.
Baroness Finlay of Llandaff is a Crossbench peer and consultant in palliative medicine
One Last Thing: How to live with the end in mind
By: Wendy Mitchell with Anna Wharton
Publisher: Bloomsbury Publishing
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