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When the Time Comes : Stories from the end of life - Magnolia Cardona

When the Time Comes

Stories from the end of life

By: Magnolia Cardona, Ebony Lewis

Paperback | 1 March 2021 | Edition Number 1

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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.

About the Authors

Dr. Magnolia Cardona, Ph.D., 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.

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 Ph.D. studies on frailty.
Industry Reviews
Chair, Gold Coast Hospital and Health Service Consumer Advisory Group

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.

Palliative Care Physician, Westmead Hospital, Australia

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.

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