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When the Time Comes

When the Time Comes 1

Stories from the end of life

by Magnolia Cardona and Ebony Lewis
Paperback
Publication Date: 25/03/2021
5/5 Rating 1 Review

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What do we want for ourselves and our loved ones, 'when the time comes'?

Jointly written, collected and curated by a doctor and nurse working in end-of-life care, this collection of personal experiences (of families and healthcare professionals) throws light on social, cultural and individual influences on what is expected but not necessarily wanted and when we need to start asking ourselves and our loved ones - and our patients - about their preferences.

In particular, the issue of futile over-treatment getting in the way of peaceful opportunities to be with friends and family and say good-bye arises again and again. Far more universal and pressing than 'the right to die' is the right to have a non-medicalised and not over-extended, good quality end-of-life.

ISBN:
9781781611906
9781781611906
Category:
Family & health
Format:
Paperback
Publication Date:
25-03-2021
Publisher:
Hammersmith Health Books
Country of origin:
United Kingdom
Pages:
160
Dimensions (mm):
216x138mm

"The topic of death and dying is not something that we talk about in our culture. In the pages of these book, individuals are honoured as their story unfold. We learn about building compassion in our community, and relationships with those close to us. Most of us will have an experience with death, maybe that of our grandparents, parents, spouse or friends. Death is commonplace, but yet how we plan and spend our time preparing will guide the final episode of our life.
To experience a good death, we cannot avoid death and dying, it needs to be interwoven into our daily culture where death is as normal and natural as birth. If we allow ourselves to discuss openly with friends, family and love ones about the things that are important to us, we can start to plan what our death will be like, and we can envisage the physical and emotional comfort desired. This will help us idealise our consummate end, how do we want this to manifest, do we want continued treatment to put off death, or do we prefer to have a frank discussion with the health professionals and welcome death into our life? And what of our worldly possessions, will you make the choices to pass them on before you pass?
This book helps us to transform our relationship to aging, mortality, dying and death, so that we may transform the way we live and the way we interact with others.
Reading the stories in this book will help to clarify your thoughts, fears, and dreams about end of life and dying and help to breakdown the mystery. Through reading the stories you will learn about end of life and understand ways in which you can improve the quality of life and better prepare for death. Please remember that each person is individual and will deal with situations differently. End of life and death is never easy to deal with, even when it is expected. Take time to grieve and talk with counsellors and support organisations that can help."
JOAN CARLINI, Chair, Gold Coast Hospital and Health Service Consumer Advisory Group

"A book about why it’s a good idea to discuss dying in advance
These stories are a window into people’s lives at their most vulnerable: when they are dying. Some of these people know what is happening, but many do not - until it is too late to talk about it. Like almost all of us - they take with them on this final journey the people who love them - who travel along as far as they can, to the point of departure. It is clear to me we can prepare better for that final path we walk together. “I never put off till tomorrow - what I can possibly do the day after”. So said Oscar Wilde. And we all smile, because we all procrastinate. Challenging conversations are one thing that most of us will find a way to put off, especially when it comes to talking about Death. This is as true for the sick person and their family, as it is for their health professionals. I can write this with some confidence as I have been treating blood cancers for thirty years, and for the last twenty years I have also worked in a Palliative Care Service at a large teaching hospital. So this small book and its stories should be of interest to those who will die (spoiler alert: that’s all of us) and for those of us who look after the dying.
Why should we talk about death and dying with those we love? Why should we discuss how we wished to be cared for at the end of our lives - where we want to be, who we want around, and how much medical misery we are prepared to tolerate if it is on offer. Why should we make it clear who we want to be our voice if we are too sick to speak for ourselves?
I can give you several good answers to these questions.
Firstly - those who love us will want to understand how we wish to be cared for. They will want passionately to honour our wishes when we can’t speak for ourselves - but they need to know what we want. It is recognised that the burden of the surrogate “Life and Death” decision-making process can scar the next of kin forever if they just don’t know the wishes of their dying loved one. We owe it to the people we love to never place them in that position. Furthermore it needs to be well established for the family as well as the health care team which individual has the understanding and authority to speak for the person who is dying. Much conflict and anguish in that emotional minefield is thus avoided.

Secondly we cannot yet always rely on doctors to take responsibility for directing care when they should, nor to clarify what is medically possible in an End of Life situation.
Sadly my profession may still offer choice where choice doesn’t or shouldn’t really exist. (I say “shouldn’t” because it is unethical to offer non-beneficial potentially harmful therapy.) So our patients need to be very clear about how much medical intervention they are prepared to tolerate when dying.
It takes time to acknowledge it is no longer appropriate to direct therapy at the disease for its own sake, but rather focus on the person’s comfort and dignity. It takes time for patients and / or their family to understand that we are not discussing decisions to be made, but rather looking for understanding and acceptance to be found.
So how can we do this better - how can we prepare for the end of our lives. How can we best look after those we love who will die, and prepare those who will care for us when it is our turn. And how can we as doctors and other health professionals deal better with this last phase of our patients illnesses.
When we are sick, or caring for those we love who are sick, or when we are in the privileged position of being health professionals, we need to remember we are mortal and that death will come to us all. In this most critical of times spent together, communication that is authentic, where we speak from the heart and listen with humility, will guide us.
This book is about when such communication has not happened - or when occasionally it has.
So read these stories and understand that we can do this better."
Dr SALLY GREENAWAY, Palliative Care Physician, Westmead Hospital, Australia

Magnolia Cardona

Dr Magnolia Cardona, PhD, MBBS, MPH, is a former GP, public health practitioner and current associate professor of health services research. She is a passionate advocate for the rights of older people dying of natural causes to not be over-treated with low-value care and instead have a dignifying end of life through aligning treatments with patients’ values and planning in advance. Her controversial research with patients, families and clinicians on this sensitive topic has attracted international media attention. Her goal is to improve the natural end-of-life experience for all.

Ebony Lewis

Nurse Ebony Lewis, BN, MIPH, is experienced in emergency and geriatrics nursing, a skills combination that has made her highly aware of the needs of older people to be treated compassionately at a place of their choice, including their own home rather than in the emergency department environment or the intensive care unit. She loves talking to older patients, visiting them at home for their health assessments and helping them express their values and preferences before they become critically ill. She is now undertaking her PhD studies on frailty.

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After many years working in Residential Aged Care and witnessing deaths on site and at times repeat transfers to hospital near the end of life, I welcomed the news that this book When The Time Comes – Stories from the end of life, is now out there to familiarise the public with what can be done to ensure our elders die with dignity and on their own terms if the natural end is in sight.
I found the language very accessible and diverse, since each chapter is drawn from the experience of a different person and their family, so I appreciated the different writing styles. The tone of the stories varied from inspiring to heartbreaking, but all have a take-home message about speaking our mind about what we want for ourselves before we lose capacity to decide. There are many lessons to be learnt from the [positive or negative] experience of others who have gone through this difficult time.

I particularly enjoyed the fact that each story was unrelated to the other, so I could go through the table of contents and choose to read the chapters in any order, picking first the chapters titles that resonated with me. But don’t forget to read the introduction and preface, as they both set the context for why it is a good idea for you and your friends and family to read the book. I would recommend to just read one chapter at a time, and reflect on the questions at the end of each. Perhaps share your understanding with someone to get the conversation on end-of-life going. Then some other day read another chapter. If you are an educator or a senior clinician, you could recommend this book to your students, because it reveals those perspectives that we don’t often have time to explore in our busy practice, and it enlightens young people about eliciting older people’s values and preferences while they still have mental capacity.
The book has a list of recommended articles and websites that should be interesting to follow-up.
I believe the authors aimed to normalise this end-of-life discussion for people of all ages, and as a nurse who has witnessed avoidance of the subject across cultures over decades, I saw this book as a great resource to get new generations taking that step.
Maree Ticehurst, Aged Care Nurse

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