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El. knyga: Challenges and Choices for Patient, Carer and Professional at the End of Life: Living with Uncertainty

  • Formatas: 194 pages
  • Išleidimo metai: 17-Mar-2021
  • Leidėjas: Routledge
  • Kalba: eng
  • ISBN-13: 9781000356199
  • Formatas: 194 pages
  • Išleidimo metai: 17-Mar-2021
  • Leidėjas: Routledge
  • Kalba: eng
  • ISBN-13: 9781000356199

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Living with Uncertainty 

gives a broad perspective on the complexities and challenges of the practice of end-of-life care, as well as the perceived benefits and limitations of medical intervention.

Drawn from research and clinical and pastoral experience, the book examines the feelings associated with the end of life, highlighting the demands that people are faced with and their consequences. It moves into the difficult area of people who feel defeated by their illness and can or want to live no longer, as well as the family, caregivers and professionals who surround them. These perspectives have been built upon around a hundred narratives of lived experience, combined with the wider clinical and practical range of voices. A topical post-script Lessons from Covid-19 captures the choices and challenges on a personal, professional and systemic level which the pandemic acutely revealed with a multiplicity of examples.

This will be essential reading for students and professionals in palliative and end-of-life care. Families and friends will also benefit from this book as they try to come to terms with the delicate but universal issues of death and dying.

Recenzijos

The honest stories presented here attest to the fuzziness of death and dying and its personal and professional impact on us, sometimes positive, sometimes not. This book will help you to understand why helping people to make the right choice is so important at this challenging time.

Philip Larkin

Kristian Gerhard Jebsen Chair of Palliative Care Nursing

University of Lausanne, Switzerland 'The honest stories presented here attest to the "fuzziness" of death and dying and its personal and professional impact on us, sometimes positive, sometimes not. This book will help you to understand why helping people to make the right choice is so important at this challenging time.'Philip Larkin, Kristian Gerhard Jebsen Chair of Palliative Care Nursing, University of Lausanne, Switzerland

'This book will be an asset to palliative professionals and to common man to rethink on end-of-life care.' Indira Madambath, Pallium India

'If you work in palliative care, I think you will enjoy this book. It addresses practical clinical questions that we have to deal with regularly.' Roger Woodruff, International Association for Hospice and Palliative Care

Foreword ix
Preface xi
Acknowledgements xiv
Introduction 1(4)
PART I The dying person and their loved ones
5(58)
1 Attitudes to death and dying
7(31)
What makes a good death?
8(11)
Everyone has to die their own death, even me
8(2)
Shared humanity
10(2)
Reconciliation with oneself and with others
12(3)
Comfortable, peaceful, free of pain - an ideal death?
15(2)
Being prepared
17(2)
Some assumptions which colour our perception
19(6)
Self-determination and longevity set against euthanasia
20(1)
Living with unpredictability
21(2)
Sense of time
23(1)
Looking forward to an unknown future
24(1)
The question we cannot answer
25(6)
Why do we have to suffer?
26(2)
Limitations of the scientific method
28(1)
The story behind the patient
29(2)
Fears, stresses and strains
31(7)
Being a burden
31(2)
Death, a defeat?
33(1)
Learning from experience
34(4)
2 The end of life - people's experiences
38(25)
Patient experiences: a mixed bag of feelings and ordeals
39(14)
Loss
40(2)
Trauma
42(3)
Pain and suffering
45(7)
Remission
52(1)
Carers' experiences: sharing or mirroring the patient's
53(10)
Protection of self and others
54(2)
What will happen next?
56(2)
Hope and courage
58(2)
Curiosity and acceptance
60(3)
PART II Medicine and care at the end of life
63(104)
3 Medical intervention, a life saver or a life changer?
65(24)
Quality of life and death, the purpose of medicine
66(5)
What do we mean by quality of life?
66(2)
How do we assess quality of life in another person?
68(1)
From quality of life to quality of death
69(2)
Professional identity and evidence-based practice
71(8)
Illnesses and ill people
72(1)
Standards, options, recommendations and much more
73(2)
Weighing up the benefits and harm of a treatment
75(4)
A technical and an ethical act
79(10)
What makes medical intervention right or wrong?
80(1)
Accountability, liability and risk
81(3)
Matching patient's motivation and treatment
84(5)
4 Euthanasia and assisted dying
89(27)
Euthanasia, assisted dying, palliative sedation what is it?
89(3)
Situation in the countries we considered
92(3)
United Kingdom
92(1)
Switzerland
93(1)
The Netherlands
93(1)
Belgium
94(1)
What is the effect 15 years on from introducing the law?
95(8)
Inconsistencies in the law
95(4)
Due care and accompaniment
99(2)
A slippery slope?
101(2)
Difficult decisions
103(13)
Pressures, power and control
105(4)
No euthanasia `on command'
109(3)
Decisions have ripple effects
112(4)
5 Person-centred care
116(32)
Communication
117(7)
Sensitive medical communication
117(4)
Advance directives and advance care planning
121(1)
End-of-life conversations
122(2)
Facilitating attitudes
124(8)
Listening
125(3)
Respect
128(2)
Honouring existing bonds
130(1)
Autonomy does not exclude dependency
131(1)
The palliative approach
132(16)
The whole family is the patient
132(3)
Relief from pain and suffering
135(3)
Presence
138(4)
Focus on life and relationships
142(2)
Hospice as a toolbox
144(4)
6 Conclusion
148(5)
7 Post-script: Lessons from Covid-19
153(14)
Context of chaos and uncertainty
153(2)
Changed relationships with patients and families
155(1)
End-of-life care
156(2)
Triage and advance care planning
158(2)
Bereavement
160(2)
Caregiver (di)stress and support
162(1)
Boundaries and self-care
163(1)
Conclusion
164(3)
Glossary 167(2)
Index 169
Catherine Proot holds an MSc in psychology and education from Ghent University, Belgium, a Postgraduate Diploma in counselling and a PhD from the UEA in Norwich, UK. A psychotherapist and clinical supervisor, she has specialised in palliative and bereavement care since 2005 in the UK and Belgium. She works in private practice in Brussels.

The Very Revd Michael Yorke (1939-2019) was a Cambridge graduate in law and theology. An Anglican Priest, he worked principally in and through four cathedrals. He was for 18 years a Samaritan, three of them as National Chairman, and was Vice Chairman to the Norfolk Hospice near Kings Lynn, UK