Creative Engagement in Palliative Care

New Perspectives on User Involvement

Lucinda Jarrett, Sunderarajan Jayaraman

• Publisher: CRC Press
• Year: 2017
• ISBN:
  9781315343082
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This book offers an extensive range of ideas and practical developing service users' creativity including songmaking, drama, dance, creative writing, music, video and visual arts. It promotes innovation and encourages a fresh and enthusiastic approach to care that will appeal to anyone with a love of creative arts as a means of expression. The wide-ranging approach encompasses many different voices from patients, artists and healthcare professionals. "Creative Engagement in Palliative Care" is highly recommended for all palliative health and social care professionals and volunteers, including occupational therapists, and art and music therapists. It is a wonderful resource for health and social care educators, teachers and trainers and will be a immense source of inspiration for patients and their families.'This book is about user involvement. It is concerned with sharing knowledge and experience about user involvement in palliative care and making it more real for the future. In modern times, the importance of 'end of life care' was highlighted by the pioneers of the voluntary hospice movement. They emphasised the importance of palliative care being based on an holistic approach that took account of all aspects of people's lives and deaths; medical, social, spiritual and material. More recently the work of the independent hospice movement has been complemented by the development and expansion of specialist palliative care in state provision. The aim has been to enable people to be able to 'do it their way' with a real sense of control and to be able to communicate their unique words, voices and experience. This is and will always be a key potential of user involvement.' - Suzy Croft and Peter Beresford, in the Preface.

PART 1: FINDING A VOICE

My Place at the Front of the Queue

I know my place

I’m the one without the luggage

The big adventure at the front of my view.

Sure of my place in the queue.

Looking back at people

Things we’ve done

Excited by the prospects

New experiences or none

Part of the biosphere or a golden plover on Ixworth water meadow?

Can’t look at that now.

Got to look to make sure they they know

Where the spare wheel is

How to make bread

How to change records on the jukebox

Who to call when the computer plays silly buggers

All not-mes doing my job

Love-you-and-leave-you

Hugs a little longer

Kisses nearer to on the lips

Looks full of meaning

‘ How could you go, you bastard?’

‘ How could you? How could you?’

When you gotta go, you gotta go, babe

Journey to the Indies

Sail off into the sunset

On red tsunamis.

Beauty and Death.

Love and rockets.

Paul Laking

1 January 2005

CHAPTER 1

John’s song

Chris Rawlence

I am a filmmaker, photographer and writer. I collaborate with people facing terminal illness and together we make films, write songs and poems, or take photographs about things that matter. The process is about the creative empowerment of those whom life-threatening illness has disempowered. It is about the resurrection of voices that have been silenced by illness. The outcome of these collaborations is, for want of a less pretentious word, art – and, if the person wishes, this is often presented at public events and shared on the internet.

Over the past five years I have been midwife to over fifty short films, and numerous songs, poems, and photoworks made in this way. Many of these projects have taken place at Greenwich and Bexley Cottage Hospice in South-East London. Here is the story of one of them – a song – and the man whose love story it describes.

1 September 2004

Hi Chris, It’s me again, I am sorry to bother you. But I am going grey haired trying to figure out how to get on rosettalife email, I just don’t know what more I can do. What am I doing wrong? I want to put these photos on my file at the hospice. Do you have any ideas? I know you must be busy. So just when you have time. Be lucky. Big John.

John, Check your e-mails from me – I told you that you won’t get on to your own rosettalife e-mail because we’re still sorting it. Instead, use your own – the one you e-mailed me with. As for the rosettalife website that I suggested you go into – well, it’s the same as ever – so check out www.rosettalife.org then go to Community for the Paul poems I suggested you look at. As for gray hair, well at least you have some growing again that is able to go gray. Only joking! Computers can drive a person – including me – MAD, can’t they. But they keep us alert!!! Chris.

3 November 2004

A large man with a feathery looking crew cut is watching me move stuff around in iPhoto on one of the Macs we have down here at the hospice. I watch him from the corner of my eye, waiting for the opportunity to turn and engage him in the conversation that I know he’s itching to have with me. He’s one of a group of elderly men sitting round a table in the day centre of the hospice. The others are eyeing the drinks trolley, which is clinking over from the other side of the room, but John wants to ask me about computers.

He is breathless today, inhaling short sips of air as he makes his way towards me. And I’m cross, he tells me in a broad Scottish accent, because I’ve been up half the night trying to organise my photos on the computer I’ve just bought myself, but something went wrong and I don’t know whether I’ve lost the photos, or accidentally put them somewhere I can’t find them. Basically he doesn’t know where the hell they are and he’s pissed off. So I make a few suggestions as to where he might find them, reassure him that he’s not the only one to be driven mad by a computer and then, annoyingly no doubt, I suggest that the best learning happens through making mistakes and no, he’s not stupid, we all make mistakes, particularly with new software. Maybe I should pay you a visit, I suggest, and we could solve the problem together.

15 November 2004

John lives in a small council flat in South-East London. His living room is skimpily furnished. He greets me from his armchair, surrounded by the paraphernalia of lung cancer – oxygen machine, mask, pills. Next to him, on a sofa, his tiny silver-haired wife Gina sits quietly with a bemused smile watching a muted episode of Bargain Hunt on a large telly. And the computer.

‘I found the photos Chris’, he says sheepishly. ’they were sitting there on the desktop all the time. I’m sorry to have dragged you out here now. What a fool!’

‘No worries,’ I say. ‘It’s what I do,’ because actually I have come for reasons other than John’s lost photographs although he doesn’t yet know this.

Perhaps I shouldn’t have been surprised when one of the volunteers at the hospice told me that John had had a professional career as a singer and an actor. I discovered that he’d been a truck driver when, one evening, after a particularly bad performance by a singer at a working men’s club he shouted out, ‘I could do better than that!’ The MC rounded on him at once, ’there’s a fella here thinks he can sing!’ And he could. He gave up his day job and for the next twenty years made a reasonable living from the club circuit and Old Time Music Hall, and then parts in musicals on the London stage.

This unlikely singing career peaked at the Lyceum in the Strand, where he was topping the bill when a BBC Producer offered him a part in Porridge. ‘I couldn’a stand the idea of singing love songs beyond my sell by,’ John said. ‘So I took the job.’ Lots of television followed – mostly character parts in shows like Hitchhiker’s Guide, and Yellowbeard, Our Friends in the North. Then came the feature films – parts in Batman and Hear My Song.

John’s lung cancer was diagnosed in 2003, when he was 70. As is so often the case, serious illness struck on retirement. His hopes for a life of relaxation and ease were cruelly shot down by a terminal diagnosis. I met him a year later, by which time his shock and distress had receded – and so too had the modest celebrity of his career. John seemed to be back where he had started – a small council flat and no obvious wealth.

It’s the fact that John has been a singer that appeals to me. Rosetta Life are currently producing an ambitious online project called the Rosetta Requiem. It’s a cycle of 12 songs and 6 short films, that is being made in collaborations between people like John, who have a terminal illness, and known composers, filmmakers, songwriters. The idea is to turn the traditional idea of the Requiem on its head – to celebrate the lives of those that are still here rather than grieve for those who have gone. Now if I could get John to work with me on the lyrics of a song, match him with a songwriter, and maybe even get him to sing it – that would be something – and it’s this that I’ll broach with him today as we troubleshoot his computer.

Part of my job involves watching out for the salient in what people are saying. I listen and probe gently, then listen some more. Often I have my laptop open and type in the stream of words as they emerge. Sometimes I can’t keep up and only the significant gets jotted down. It’s like panning for gold must have been. Together we sieve through the rubble, on the lookout for the glint in what remains. Today, it’s an event rather than John’s words that catches my attention. Or rather, a non-event, because as we’ve been chatting I’ve become aware that John’s wife, Gina, has been oddly passive. She has been watching me with a strange politeness and as we finish John asks her to make us a cup of tea. She seems pleased to have something to do and vanishes into the kitchen with an air of purpose. Later I compliment her on the tea and notice something about her expression. It is as if she has not fully understood me and is scared of asking me what I mean. She seems to have forgotten why I’m here or who I am.

20 November 2004

At the hospice today John explains. ‘Dementia’ is the word he uses.

‘Alzheimer’s ?’ I ask, and he nods.

25 February 2005

It’s been a while since my visit to John and the difficulty of his situation has stayed with me. Nothing has yet happened with the song I envisaged, but we’ve been in regular contact because he is very keen to have his own page on the Rosetta Life web site, where he can post his own photographs and thoughts, and share his experience with others. The idea of these community pages is that hospice users can add content to their own small part of the web site, thereby gaining a degree of control over the process, but there’s still a modest digital learning curve involved and this – like the e-mails – has frustrated John, who needs results – now.

What strikes me about John’s enthusiasm for digital technology is that it allows him to bring some order to a life that feels to him as if it’s disintegrating. Simple photo applications, message boards, and word processing, enable him to discover sense in his own story and tell it to others. A terminal diagnosis – no euphemisms here because that’s what it is – is a seriously destabilising event in a person’s life. This much is obvious but what’s not so apparent is the traumatic disempowerment and decentering that comes with it. Where once your identity turned on your job status and position at the centre of the family, now you are best known for your illness – a depressed drag, without voice, on those around you. All the old certainties fragment as the world you knew flies apart.

The situation is, literally, chronic. In many cases it won’t be curtailed by sudden death. These days a terminal diagnosis is likely to mean several years living with incurable illness. But although you may be disabled, in pain, and coping with the side effects of medication, you may still be able to live a moderately active life and will probably want to do so. Terminal illness is as much about living life differently as it is about the business of death and dying. An unsolicited encounter with mortality faces us all with the big questions and fears, but it also offers us the chance to re-evaluate priorities. And this often involves ‘getting things in order’.

Humans seem to like things in order, whether as babies putting shapes into boxes or as partially sighted adults with a brain tumour cementing mosaic tiles to the frame of a mirror that will be sold in the hospice handicraft shop. Particularly we like to combat the disorder of illness by ordering, be...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Dedication
• Foreword
• Preface
• About the editor
• List of Contributors
• Part 1: Finding a voice
• 1 John’s song
• 2 Margarita’s story
• 3 A guide to living with cancer according to PG Wodehouse
• 4 Arts in palliative care: the Prince and Princess of Wales Hospice
• 5 Connecting I and you: working with the breath as a tool to enable people to find their stories in safety
• 6 We laughed
• Part 2: Developing Support
• 7 User involvement and creativity
• 8 No – you don’t know how we feel
• 9 The support group at my shoulder
• 10 The women’s group
• Part 3: Advancing Involvement
• 11 Becoming involved in research: a service user research advisory group
• 12 Users as educators: how hospice patients can help in the training of health professionals
• 13 The Tuesday group: a project in the art of dying
• 14 Voicing change: online not in line
• Part 4: Models of Good Practice from Direct Experience
• 15 Poems for World Day
• 16 Case study of service user forums at Dove House Hospice
• 17 Listen to what we say
• References and bibliography