Table Of ContentLife to be lived
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Life to be lived
Challenges and choices
for patients and carers in
life-threatening illnesses
Catherine Proot
and
Michael Yorke
1
1
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Foreword
There is optimism at the heart of palliative care
Cherny, 2007
This book is about life: life at the end of life. It is about helping people ‘live their
dying’. It is about the realities, messiness, uncertainties, the multiple contradic-
tions, paradoxes, and ambivalence that are part and parcel of living through
advanced illness, dying, and bereavement, but also about what helps and heals.
It addresses the impact of advanced illness and intervention. It is based on
volumes of experience of people who are distressed and in need of compas-
sionate and skilled support. It is a masterful integration of the psychological,
social, and spiritual, offering not only an understanding of these crucial facets
of the holistic approach to working with people in end-of-life care, but also a
response.
The authors focus on the ‘life-altering’ nature of advanced illness, end-of-
life needs, death, and bereavement. Its richness is in the tone and approach
of how you can treat people as full human beings, offering the potential and
possibilities for change. It is the sheer humanity of the person affected and
those supporting that speaks. The book is a strong reminder never to let slip
that essential aspect of being with and working with ill people, needed in an
increasingly medicalised world of healthcare, fast turnover of patients, and care
rationing. Haraldsdottir (2011) in her research on ‘being there’ casts doubt on
the practice of this mantra of many in the hospice movement. Life to be Lived
tells how to ‘be there’ for people.
Life to be Lived is anchored in patient experience; it does not hold back on
the realities of illness experience and the thoughts, feeling, and behaviours that
comprise the experience of death and bereavement. It also addresses the expe-
riences of those directly affected: family carers, local communities, health and
social care professionals, and their organisations. It demystifi es the complex, be
it for the lay reader or experienced professional. We sometimes become anaes-
thetised to what is really happening in the wider world of the individual person
and those who surround them.
The authors are to be congratulated on the method used to cover the mate-
rial. The narrative research undertaken by Proot is used to best advantage
by presenting the narratives and stories of patients, professionals, and others.
vi FOREWORD
The abundance of these ‘uncontaminated’ accounts offer truths as well as sign-
posts to professional and lay carers alike. From Veronica’s diary extracts in the
opening chapter: ‘Is it possible that the cancer has recurred as a means of push-
ing me on and on down the road? If so what must I do to respond positively
and accept the illness?’ to Billy’s detailed refl ections of how he intervened as
a social worker and family therapist to undertake quite complex work with
a troubled family, or of a consultant, Jane’s use of metaphor to help Naomi
understand her cancer of the cervix. What speaks and teaches us is the weight
of experience from the narratives in addition to the vast experience of the
authors. They weave the theory through the practice.
This publication offers an inspiring way for people in contemporary society
to re-view death as part of life. It complements the work of the Dying Matters
Coalition and other initiatives for society and local communities to educate
and free us from the fears and taboos surrounding death and to plan better.
It is also a good response to government initiatives such as the End of Life
Care Strategy ( DH, 2008 ), with its emphasis on education and training the
generalist workforce who come across the majority of people at the end of
their lives. For them, this is a book on how to help people die well in their
‘psycho-social-spiritual’ space.
‘People die alone in a very personal way, just as they live, and that the best
we can do is to be there at the door if and when they can, or choose, to open it’
(Chapter 15, ‘In conclusion’). Thank you to the authors for telling us just how it
is and how it can be. Above all, I welcome the fact that the pages in this volume
speak of tenacity, the human spirit with its strength, resources, growth, and
multiple examples of resilience in that ‘psycho-social-spiritual’ space.
David Oliviere
Director of Education and Training,
Education Centre, St Christopher’s Hospice
September 2013
References
Cherny , N. 2007 . Foreword . In: Monroe , B. and Oliviere , D. (eds.) Resilience and Palliative
Care. From Adversity to Achievement . Oxford : Oxford University Press, p. v .
Department of Health 2008 . End of life care strategy: promoting high quality for adults at the
end of life . London : Stationary Offi ce .
Haraldsdottir , E. 2011 . Th e constraints of the ordinary: ‘being with’ in the context of
end-of-life nursing care . I nternational Journal of Palliative Nursing , 1 7 , 245–250 .
Preface
The writing of this book has been an adventure. In the course of its prepara-
tion, both of us have had signifi cant spells in hospital, so we have examined
our work with the critical eye of direct experience. The book, however, is not
a personal testimony. We have learned much from others who have struggled
with a range of illnesses, which in many different ways have been life-limiting
for them. We have been touched by their courage and openness in sharing their
experience with us.
This book is largely drawn from research and our clinical experience as a
psychotherapist and a pastoral carer in bereavement counselling and palliative
care. Our focus is people with a very serious medical condition that they know
is almost certainly terminal or will probably be with them, if not for life, for a
very long time. We refer to these conditions as life-limiting and life-threatening
illness or, more generally, as life-altering illness, underpinning the profound
impact that such illness has on people’s quality of life and that of their relatives
and friends. The stories recounted feature neurological diseases, heart condi-
tions, diabetes, and strokes in addition to cancers. Most of the issues discussed
are also relevant to other life-limiting conditions. The stress on carers, while
varying at times in character, can be just as exhausting, diffi cult and isolating.
The book is written primarily for professionals and trained volunteers and
those in training in the disciplines of palliative care. We feel its value lies in the
highlighting of their non-technical role and presence. It may also be helpful to
teachers and trainers in the fi eld of hospice, palliative, and bereavement care
and to patients and their families who wish to refl ect on their responses to their
situation.
The question considered is ‘How do people face life-limiting illness and
death?’ This challenging and broad question, so signifi cant to countless human
beings, poses many other questions. We shall review a range of responses to
illness and loss, the challenges posed to patients, relatives, and carers, and the
support given, both personal and organisational. Most people need all the help
they can get as they face these realities, especially when they are immediate and
unavoidable.
We seek to be candid about the challenges involved for both patient and carer
and to be frank about the limitations that are common in the care offered. We
try to analyse what can bring a sense of ‘healing’ even when there is no cure.
viii PREFACE
What are the transforming processes that enable people facing life-altering ill-
ness to experience ‘quality of life’? What helps or hinders the process? How can
we foster improvement and the capacity to grow in adversity? We investigate
these questions by exploring in depth and charting the experience of patients
and families adjusting to and living with such illnesses.
The book highlights the importance of awareness and the signifi cance of the
attitudes and behaviours of those who are subject to major illness and those
who care for them. The stories included are from actual accounts by therapists,
chaplains, and patients. They are an important element in conveying our mes-
sage, which we hope will be encouraging and inspirational.
We use personal stories to illustrate our points, but in order to protect the
anonymity of our informers, all the names of patients and interviewees are
pseudonyms and, where necessary to prevent breaking the confi dentiality of
third parties, settings are altered. Where gender is unclear we have chosen to
refer alternatively to ‘he’ or ‘she’, or the use of the plural throughout the book
in order to make the reading more fl uent. The stories root our suggestions in
living experience.
We have opted to produce chapters dealing with specifi c aspects and while
they may be read on their own they contribute to a broad description of the
experience. Our intention is not to prove anything but to contribute to a better
understanding and appreciation of these times of transition for all the people
involved, taking account of the specifi c contributions of social, psychological,
and spiritual resources to this journey.
We trust that people involved in any way in palliative and end-of-life care
may fi nd in the challenges and narratives described in this book a repository
of valuable resources to support and inspire their journeying with life-altering
illness. Honouring the variety of ways to live one’s dying and the fact that eve-
ryone’s experience is unique, we hope that people may fi nd here a set of mes-
sages that echo something of their own experience. They may be surprised to
read it in the words of someone they do not know; someone who may even
have died. Such discovery can be like a hand placed on one’s shoulder. After all,
we are not alone.
We hope that whoever reads this may feel valued and affi rmed in their own
experience and encouraged on their unique journey, in sickness and in health.
Catherine Proot and Michael Yorke
Acknowledgements
We are grateful indeed for the many who have contributed directly or indi-
rectly towards the work. Among them we record our thanks to all the people
who have made available their insights and experience; those who have checked
the text; encouraged us to continue when the going became tough and gave us
their advice and time. Among them we would like to mention by name:
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We would particularly like to thank Nicola Wilson and Caroline Smith from
Oxford University Press and all those involved in the preparation and produc-
tion of this book.
