Life in a Hospice: Reflections on Caring for the Dying

By Ann Richardson

You've heard of hospice care, but you prefer not to think about it. Dying is such an uncomfortable topic, we all avoid it. In ignorance, we fear the worst.

This book will change your whole view. Taking you behind the scenes of end-of-life care, you will see the enormous efforts of nurses, doctors, chaplains and others – even a thoughtful cook – to provide the calm that we all hope for.

Perhaps you are looking for end-of-life care for someone you love. Perhaps you are wondering if this is the job for you. Or you just feel like being inspired by humanity at its best. This book will be for you.

HIGHLY COMMENDED by the British Medical Association, 2008

"An easy-to-read book, which will surprise many readers with its lightness of touch, humanity and refreshing tone. I would recommend it to anyone who has worries about their own or a relative's care at the end of life."  BMA Medical Book Competition

"The simple reflections on complex areas of care resonate long after you have finished reading the book." Royal College of Nursing

• Language: English
• Publisher: Ann Richardson
• Release date: Jan 10, 2018
• ISBN: 9781386866770

Book preview

Life in a Hospice

Reflections on caring for the dying

ANN RICHARDSON

Foreword by Tony Benn

LIFE IN A HOSPICE

Copyright @ 2017 Ann Richardson

All rights reserved

Second Edition

Published by Glenmore Press, 2017

London, England

ISBN: 9781521738962

First edition published by Radcliffe Publishing, 2007

––––––––

No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the copyright owner.

This book is sold subject to the condition that it shall not, by way of trade or otherwise, be lent, resold, hired out, or otherwise circulated without the publisher’s prior consent in any form of binding or cover other than that in which it is published and without a similar condition including this condition being imposed on the subsequent purchaser.  Under no circumstances may any part of this book be photocopied for resale.

All names and identifying details have been changed to protect the privacy of individuals.

Cover Design by Mirna Gilman, BooksGoSocial

Contents

Foreword

Preface to the Second Edition

Preface to the First Edition (updated)

Acknowledgements: Second Edition

CHAPTER 1: Introducing Hospices

The work of hospices

Helping dying people

Activities and therapies

Hospice compared to hospital care

What is special about a hospice

Part 1 The Work Undertaken

CHAPTER 2: The Nature of the Work

The rhythm of a day

Particular roles

Day patients

The hospice at night

Patients at home

Managing the hospice

CHAPTER 3: Responding to Patients and Relatives

Welcoming and reassuring

Physical and practical needs

Emotional help

Spiritual support

Discussions about returning home

The needs of relatives and friends

Children

CHAPTER 4: Working with Dying People

Helping people to come to terms with dying

Returning home to die

Recognising the terminal phase

The actual death

CHAPTER 5: After a Death

Giving time to families

Preparing the body

The next days

Attending funerals

Bereavement work

Subsequent contact with relatives

PART II Difficulties Experienced and Coping with Them 

CHAPTER 6: Sources of Stress: Difficult Patients and Families

Difficult patients and relatives

Anger and aggression

Patients and families in denial

Family neglect

CHAPTER 7: Other Sources of Stress and their Impact

Emotional involvement

Particular frustrations

General pressures of work

The impact on staff and their families

CHAPTER 8: Ways of Coping

Keeping work out of the home

Support from family and friends

Finding ways to relax

Support from the hospice

Own spirituality

PART III Motivations and Rewards

CHAPTER 9: Initial Motivation

A sense of vocation

Prior experience of death

Other formative experiences

The accidental route

CHAPTER 10: What Makes the Work Worthwhile

Feeling involved

Responding to challenges

The variety of people

Feeling valued by patients and families

Working with other staff

A sense of fun

PART IV Reflections on Working in a Hospice

CHAPTER 11: Working in a Hospice

Qualities needed

Training

Telling people what you do

CHAPTER 12: Reflections on Living and Dying

A good death

Choosing the timing of death

A sense of mortality

Learning what is important

Extending the learning from hospice care

Dear reader

About the author

Praise for Life in a Hospice (First Edition)

Other narrative books by Ann Richardson

Questions for book club discussions

Foreword

This is a book about the care provided by hospices. I am a passionate supporter of the hospice movement. I first heard about hospices when I was in America. I was having dinner at the British Embassy in the late 1960s and an American woman was so enthusiastic that it awakened my interest – and now, of course, it has become a worldwide movement.

My mother, a very religious woman, said death is God’s last and greatest gift to the living. Like everybody, I’ve had many experiences of death. When I was 10, my mother had a stillborn baby who she grieved over for years. That made a huge impression on me. When my father died, I sat next to him in the hospital. I missed my mother’s death by an hour, although I spoke to her that morning on the telephone. And my wife Caroline died of cancer seven years ago. That was a tremendously moving experience. The pain and the grief are not something you can talk about easily. Of course, you cannot fill the gap that is left, but you can decorate the gap with your happy memories.

The hospice movement says to the dying ‘abide with us’, as spelled out in the beautiful hymn ‘Abide with me’:

‘Abide with me, fast falls the eventide,

The darkness deepens, Lord with me abide.

When other helpers fail and comforts flee

Help of the helpless, abide with me.’

Hospices provide palliative care, which tells you to think about the person, rather than the disease. It is important to address people’s real problems. And if you can make it possible to die without worrying, that is so much better than dying with a lot of pain. This book is full of examples of such care and attention. Indeed, the idea of palliative care has a significance beyond the hospice movement – I think I have been in palliative politics all my life.

The more I think about the hospice movement, the more I feel the issue is not dying well, but living well until you die. The hospice movement loves the living right up to the point when they die. I was in Paddington station recently and there was a group of young people with cardboard signs offering ‘free hugs’. A girl of 17 gave me a hug. And an old lady with white hair was warmly hugged by a boy of about 16. The free hug movement seems to me to be what hospices are about – it’s love.

Sogyal Rinpoche, a Tibetan Buddhist, has said:

When we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heart-breaking sense of the fragility and preciousness of each moment and each being. And from this can grow a deep, clear, limitless compassion for all beings.

That is what the hospice movement is about. That is what this important book is about. I recommend it strongly.

Tony Benn

July 2007

Preface to the Second Edition

This is the second edition of a book first published ten years ago, based on interviews with a range of people working in end-of-life care in two hospices. Although hospices have changed somewhat in this decade, the feelings and experiences of such people, both professionals and volunteers, remain very much the same. Everywhere, people still die and they still need help with their daily care, whether physical, emotional or spiritual. 

In consequence, this is more or less the same book, with a small amount of factual updating in the Preface to the First Edition and an occasional clarifying sentence in the main text. There is some material that has not been updated, however. Some references will be noted to people and organizations as they were at the time, such as Tony Blair who was Prime Minister when the interviews were carried out or the Healthcare Commission, which no longer exists. It did not seem sensible to try to amend such occasional references, which made perfect sense at the time of publication.

I should also add that some English terms may be unfamiliar to American or other readers, such as ‘carers’ (‘caregivers’ in the US) or ‘nursing sister’ (a term for a senior nurse). I hope these will be relatively clear from the context.

It might be questioned why I am choosing to re-launch this book now. The answer lies in the nature of the publishing world. It has always been difficult for authors to find publishers and, when you do, you don’t always ask the right questions. Radcliffe Publishing, a prestigious publisher of medical books, had enthusiastically agreed to publish my book in 2007 and I was delighted. What I did not know is that they would set the price at more than £20 (about $35) – and, subsequently, the e-book price at not much less – so that it was beyond the reach of most potential buyers. Possibly even more annoyingly, they did little to publicise its existence. The result, dear reader, is obvious – relatively few books were sold.

Skip ahead ten years and the publishing scene has been transformed. Radcliffe Publishing was taken over by a large company with little interest in advertising old stock. But independent publishing (self-publishing) had also become a large business and I had self-published a different book with some success. I realised I could now re-launch this book and get it to the people for whom it was intended at a reasonable price.

And it wasn’t as if the book had been poorly received in the first place. The late Tony Benn, MP, had written a Foreword, and recommended it highly. In 2008, it was Highly Commended by the British Medical Association, which is a powerful accolade indeed. It also received many positive reviews in both professional and academic journals, excerpts of which are shown on another page. Hence, my decision was not very difficult.

So, who are my intended readers? Perhaps most obvious are other people who work with dying people or who are interested in taking on such work. The former will identify with the experiences and concerns of those whose words are set out here and the latter will be able to see if this is a life for which they really want to prepare. It has been suggested that it might be used in palliative care training, but that is something that others would need to take on.

Second, I have found over the years that people who have experienced hospice or other very good palliative care for their relatives and friends have welcomed the opportunity to re-live that experience through a book of this kind. Equally, those who have someone close to them moving toward their last days might want to read about the kind of care available.

But lastly, as I explained in my initial Preface, I really wrote the book because I thought it was fascinating to understand the motivations of those who spend each of their working days with dying people – and the nature of the fulfilment it brings them. I thought many other people might be equally intrigued by their experiences.  For all of you, I offer you these pages.

Ann Richardson

March 2017

Preface to the First Edition (updated)

This book has had a very long gestation period. Nearly 20 years ago, I met a man who had worked as an AIDS nurse – and who subsequently died from the disease – and he talked a lot to me about the emotional difficulties of nursing the dying. I was immediately drawn to wondering how it affected people to spend their day-to-day lives working with dying people. Later, I worked for four years in a hospice as a volunteer, and experienced at first hand some of the rewards of such work and some of the complexities of that environment. It occurred to me that it would make an interesting book, but that is as far as I got.

In fact, the hurdles involved in writing a book of this kind are considerable. I knew that I would need to get the permission of one or two hospices, to find interviewers willing to take on the task, to interest a publisher sufficiently to make the project worth embarking on, to undergo the cumbersome process of obtaining ‘ethical approval’ required (at that time) for almost any research connected to the NHS and, finally, to gain funding to cover my expenses.  I did what any sensible person would do and put my intellectual energies to easier tasks.

But eventually, the lure of this book proved too strong. Almost by accident, I obtained the permission of one hospice – and then sought out and found another. I put together a proposal and found, to my delight, that two publishers were keen to publish the proposed manuscript. Interviewers were fairly easy to find, as I work with several who were likely to find this work interesting. It took roughly six months to obtain the necessary ethical approval. And, despite considerable efforts, I never did get any external funding.

I undertook this project because I thought it would be fascinating. What makes people want to work in a hospice day after day? What is it like to help patients and their families at this vulnerable time? What aspects of such work are most difficult and what enables people to cope? And what is the impact on their lives at home? I felt if such questions were intriguing to myself, they might also be intriguing to other people. And, of course, those already working in palliative care – or others with an interest in doing so – might welcome the opportunity to reflect on this work. It is my hope that all such readers will find something of interest in this book.

For readers new to the subject, it may be useful to provide some very brief information. Hospice care is now exactly fifty years old, the first hospice having been founded in 1967 in South London by Dame Cicely Saunders. Her vision was to provide expert pain and symptom control, compassionate care, teaching and research.[1] A recent short report from Hospice UK, the national charity supporting hospices, defines hospice care as follows[2]:

Hospice care seeks to improve the experience of people living with terminal and life-shortening conditions, and helps people to live as well as they can, to the end of their lives. It understands that a person’s physical, emotional, spiritual and social needs are of equal importance, and supports carers, family members and friends – through a loved one’s care, during bereavement and into remembrance.

Even at the end of our lives we have hopes and aspirations. We want to be where we feel most comfortable, do what brings us joy, and have those we love by our side. We want to be, despite everything, ourselves.

Hospice care is defined by its work to fulfill such hopes, and it is the mission of hospice care to improve people’s experience of death, dying and bereavement. It has developed over the last 50 years to provide care and support to more people in many different settings – in hospice beds, at home, in care homes and in hospitals – and for ever more complex needs.

Over the years, the term ‘hospice’ has been used in different ways in terms of whether it is a physical place or an approach to care. In this book, a hospice is a place for caring for people at the very end of their lives, but the term is also frequently used to mean the special kind of care described above, which may be delivered in a person’s own home, a care home or, indeed, a hospital setting. There is also some variation in how ill a person must be – how close to death – before being considered for hospice care. In this book, most people admitted to the hospices were considered to be at the end of their lives, but others could come in to give their relatives a short break or to the day centre for some attention and diversion.

What is the extent of hospice care in the UK? The Hospice UK report notes that there are roughly 220 hospices in the UK, most of which are for adults but a small number are solely for children. These are run by a variety of organizations, primarily local charities. It is estimated that charitable hospices provided expert end-of-life care to about 200,000 people in 2015-16, representing around 44 per cent of all people likely to need such care. Of these, 48,000 had used inpatient hospice care. 

In addition, hospices also provided bereavement support to about 41,000 people in 2015-16, reaching many more informally through support for families and other carers. Other activities have included outreach into care homes, prisons and hospitals as well as supporting people in their own homes. Hospices have also provided outpatient care, including medical and other assessments, physiotherapy, occupational therapy and other support for people to live well until they die. Although not discussed in this book, hospices also provide educational activities both for their own staff and beyond; in addition, many undertake their own – and assist with others’ – research with the aim of creating and developing evidence of good practice.

Many a novel starts with the disclaimer ‘the characters and events in this novel are fictitious – any similarity to real persons, dead or alive, is wholly coincidental’ or words to that effect. In this book, the complete opposite is the case. The people in this book are all very real – actual nurses, doctors, managers and others who have chosen to work in a hospice. The stories they tell concern real events and real patients they have known. The feelings they recount are genuine and personal. All agreed to take part in an interview about their work and its impact on their lives. And all agreed, after the interview, to the publication of the passages shown.

But interviews, if undertaken with some sensitivity, can serve almost as a confessional. They provide an opportunity for people to reflect on their day-to-day lives and speak openly about thoughts or feelings that they might not otherwise make public. This certainly happened in this case. As a result, considerable effort has been taken to anonymise those speaking here. All names have been changed, as well as minor details, to avoid identification. Moreover, two different systems for identifying them have been employed. When people describe their work (Chapters 1–5), their professional title is used, as it is helpful for the reader to know the perspective of the speaker. When they explore more personal matters (Chapters 6–12), however, a pseudonym has been employed. There are a few exceptions, for instance where it is obvious that it is a doctor or chaplain who is talking. This may, at times, appear awkward, but it is preferable to exposing the inner thoughts of people who gave their time freely for this endeavour. They need to be protected from the curious eyes not only of the reading public but also of their colleagues.

So, who did we interview for this book and how were they chosen? I explained to the heads of both hospices the rough nature of the posts we would want to cover and, in one case, staff were invited to volunteer and, in the other, senior staff made suggestions about who should be involved. All were fully informed about what would be required of them and all gave permission for publication, as noted above. All interviews were taped and fully transcribed, which ensured that their actual words made it to the printed page.

In total, we interviewed thirty one people. This included the heads of both hospices, twelve nurses covering a range of grades and two healthcare assistants. In addition, we interviewed three chaplains, two hospice doctors, a consultant, a social worker and a variety of therapists, including two counsellors, an occupational therapist and a complementary therapist. There were also people with other very specific jobs, such as the manager of a day centre, a patient affairs officer, a volunteer coordinator and a chef. Two volunteers were included. Occasionally, these posts overlapped.

The question might be asked whether the hospices selected could reasonably be deemed to be ‘representative’ of all other hospices – and the simple answer is one cannot know. I would make no such claim. The hospices themselves