Case Studies in Spiritual Care

Healthcare Chaplaincy Assessments, Interventions and Outcomes

Steve Nolan, George Fitchett

• Publisher: Jessica Kingsley Publishers
• Year: 2018
• ISBN:
  9781784507053
• Topic: Theology & Religion
• Subtopic: Christian Ministry

Through a rich variety of case studies, this book provides insight into the patient's needs and the chaplain's perspective, as well as discussions of spiritual assessments and spiritual care interventions. Case studies such as a request to baptise a child complicated due to his admission for 'psychiatric reasons', as well as work with military veterans, such as a female transgender veteran who has been alienated from her faith, show the breadth and complexity of work that chaplains undertake daily.

Each section also includes critical responses to the case studies presented from a chaplain and related healthcare professional. This book will enable chaplains to critically reflect on the spiritual care they provide, and provide an informed perspective for healthcare professionals and others involved in chaplaincy services.

Part 1

Chaplains’ Care
in Paediatrics

Chapter 1

‘That’s great! You can tell
us how you are feeling’

– Mark, a recently severely physically disabled
11-year-old boy with a brain tumour

Liz Bryson, Paul Nash and Sally Nash

Introduction

One of the questions we most often get asked when offering training on paediatric spiritual care is: how do you work with patients who are severely disabled? This case study seeks to explore spiritual assessment and intervention with a severely physically disabled 11-year-old boy in a way that takes seriously the importance of patient-centred care. The core principles of patient-centred care are that care is personalised, coordinated and enabling, and that the person is treated with compassion, dignity and respect (Health Foundation 2014, p.7). One of the challenges we have sought to respond to at Birmingham Children’s Hospital National Health Service Foundation Trust (UK) (BCH) is to engage in spiritual care that is appropriate to age, context and developmental level. Over one million children in the UK have some sort of speech, language or communication need (Allenby et al. 2015), thus a case study focusing on this issue is likely to have some transferable learning for other patients.

The chaplaincy team at BCH uses the shorthand term ‘spiritual play’ to describe what is often offered and done with patients. More formally, the team has developed spiritual play around the concept and objective of seeking an interpretive spiritual encounter (ISE). Creating the concept of ISE has been the work of the Rev. Paul Nash (Nash, Darby and Nash 2015) who has led on its development. It initially was developed as part of a spiritual care participation project with Kathryn Darby and Sally Nash and then progressed through our case study project, which seeks to reflect on our practice in conversation with spirituality, human development theories, good practice in work with children and young people, chaplaincy objectives and patient outcomes. Our previous research has also led to the discovery of principles for spiritual care (Darby, Nash and Nash 2014; Nash, Darby and Nash 2013). The Centre for Paediatric Spiritual Care at BCH has been established to research this further and to disseminate our practice (https://bwc.nhs.uk/centre-for-paediatric-spiritual-care). Sally Nash leads on our research and writing work, and has facilitated us in offering master’s level continuing professional development courses in spiritual care and paediatric chaplaincy through her wider work with the Institute for Children, Youth and Mission (www.cym.ac.uk).

The chaplaincy team seeks to identify whether a need is religious, spiritual or pastoral and works with patients, their families and staff as appropriate in the context of day-to-day, life-limited/threatening, palliative or bereavement care. Typically, our chaplains arrive on a ward or to a bedside with a bag of activities. Each one has a personalised bag that contains a range of things patients can do; the chaplains will usually give the patients a choice of activities which are suitable (having identified any limitations or risks of particular activities for that patient). It is the participative nature of the encounter that creates the potential of time and space safely to explore spiritual needs, concerns or anything else they would like to share. That they have the option to say no to the encounter also offers a degree of agency not available with many other healthcare professionals. One of the underpinning concepts of ISE is to look for what lifts the spirits of a particular individual and to build on that; this often gets revealed through the choice of activity and the subsequent encounter. (For a description of a wide range of activities used in this way, see Nash, Darby and Nash 2015.)

Background

This case draws on two encounters between Liz Bryson, a volunteer lay chaplain since 2013 and the first chaplaincy team member to complete a university-accredited postgraduate certificate in paediatric chaplaincy offered by BCH in partnership with the Institute for Children, Youth and Mission, and ‘Mark’, a recently severely physically disabled 11-year-old boy with a brain tumour. The case is written in the first person, drawing on Liz’s own recordings of her visits.

Liz has had a long-term interest in whole-person care. She has a background in education, pastoral care, mentoring and leadership in church communities. As a mother of four, Liz became a full-time carer for her eldest daughter following surgery for a brain tumour, the consequences of which left her disabled at the age of 10. Liz accompanied her daughter through the remaining years of childhood, teenage and young adult years as she was faced with physical, emotional, social and spiritual challenges. Through the years of walking alongside her daughter, continually processing loss and dealing with living bereavement, Liz witnessed the reality of spiritual growth despite physical regression in her daughter. Having supported her daughter through home-schooling and a part-time degree in art and design, Liz has experienced the value of creative arts activities which facilitated exploration and discussion of life and its challenges, with both her disabled daughter and her three other children. In her mid-20s, Liz’s daughter developed another brain tumour and died within a few months. Some years later, aware of the potential for chaplaincy to enrich the lives of sick children and their families, and intrigued by the developing research regarding how to help them explore their own spirituality, Liz joined the chaplaincy team at BCH. She was convinced that children can find deep, inner resources despite physical deterioration when given a safe space in which to do so. She sees this unfold time and again as she delivers spiritual, pastoral and religious care as part of the chaplaincy team.

It is unique within the chaplaincy case study literature for a case study to focus on the work of a volunteer chaplain rather than an employed one. However, at BCH we have worked hard at offering chaplaincy volunteers the same training as staff, and Liz is very well qualified academically, having a postgraduate certificate in paediatric chaplaincy gained during her time at BCH, as well as having substantial chaplaincy experience. We have a thorough application and discernment procedure for volunteers, and it was clear during this and her induction that Liz had healthily grieved for her loss and had had an appropriate gap (two years) between her daughter’s death and joining the team. When Paul and Liz discussed where the best fit for ward allocation would be, she suggested the oncology ward and, while we were concerned initially for her wellbeing, she has flourished. Liz is professional and highly skilled, and she now leads on our chaplaincy case study project.

Mark was 11 years old and resident on the Teenage Cancer Unit (www.teenagecancertrust.org) at BCH. This is a unit specially designed for adolescents which offers them an age-appropriate environment and specialist medical staff. Previously, a completely healthy, active 11-year-old, Mark had been admitted for surgery to remove a malignant brain tumour in early spring 2016. As a result of the surgery and two post-operative strokes, he became severely disabled, unable to talk or move his lower body. Liz met him in the oncology department while he was undergoing chemotherapy several months after his traumatic experience in intensive care. He could understand when spoken to but could not reply verbally. He communicated by nodding or shaking his head and had some movement of his hands and arms, though not enough motor control to be able to communicate via writing or keyboard. He was working hard with physiotherapy to increase the use/motor control of his unsteady (not dominant) left hand, using it as much as possible. His facial expression was minimal and it was difficult to read his mood or feelings from any body language, apart from nodding or shaking of his head.

Mark’s background was Christian and his mum, Sarah, had been referred to the chaplain via a senior nurse. The senior nurse was aware that Sarah was struggling to have confidence in the medical and nursing staff. This limited their ability to help her begin to come to terms with the enormity of the changes in her son. It was considered that she would perceive a volunteer chaplain to be a safe confidante. Chaplaincy team members regularly find themselves in such roles and we do not necessarily notice a difference as to whether they are staff or volunteers. Liz’s personal experience was not a factor in the decision to refer Sarah to her.

‘Mark’ is a pseudonym, and both Mark and his parents have read what we have written about our work with him and given us permission to publish. It was important to us that Mark was given the opportunity to assent to our use of his story, as he clearly had the capacity to do this, and best practice in work with children and young people is that they assent or give consent as well as parents. Mark has been on a national public broadcast television programme in the UK as well as in local newspapers, so his story is quite widely known outside his immediate context.

Case Study

Encounter 1

Mark had spent some weeks in the High Dependency Unit and had just moved back to the Teenage Cancer Unit when I visited with Michelle (a placement student). As we arrived at the bed space I could see that there was a lot of activity from Mark’s mum and dad, and Mark was lying inactive on the bed. Mum and Dad were unpacking and setting up the bed space with pictures and familiar belonging to make it feel more like home for Mark. They were positive about the move but clearly everything was in a state of transition. A brief conversation with Mum (Sarah) established that she wanted to chat with me again but not at that time of relocation, so I decided to focus fully on Mark as Mum and Dad busied themselves with the removal jobs.

I introduced Michelle, and swiftly assessed that Mark was feeling the need for reassurance in the new space and wanted a sense of security and belonging. Mark was in need of oxygen, and was feeling particularly unsettled with the move. I sat beside Mark and asked him if he would like to do an activity, explaining the spiritual care beading activity as a possibility. He immediately nodded his head enthusiastically and seemed pleased to be engaged with someone. Michelle chatted to Mum and Dad as they unpacked, and slowly Mark and I went through the steps to make a bead keyring. Due to Mark’s illness, he could only lie propped up in bed and look ahead. I was able to hold the spiritual care bead bracelet activity sheet directly in front of Mark and explain the choices he had, the first one being whether to make a bracelet or keyring.

With attention to detail, I talked through the different colours of beads pictured on the card and what each colour represented. In this ISE, each coloured bead represents something: green – peace; red – I matter; white – hope for the future; pink – strength; purple – faith in God; brown – honesty; blue – happiness; orange – to be able to help others; yellow – I belong; heart-shaped – I am loved/wanted. (For the full activity guide, see https://bwc.nhs.uk/spiritual-care-activities-and-resources.) Mark thought about each, one at a time, and nodded or shook his head according to which colours he wanted on his keyring. For each colour, I showed him the bead options from the bead box. If there were different shades of his chosen colour or varied textures or shapes, Mark chose which he preferred. I threaded the beads onto the elastic, holding it in front of Mark so he could see clearly the emerging keyring that he had designed. I fully engaged his focus and attention and made sure that he knew this activity was entirely his, asking his opinion and giving him choices at every point. Mark nodded or shook his head telling me his choices at every stage. It became apparent through the colour of the beads he had chosen that Mark needed strength and peace, hope for the future, to know he was loved and that he could contribute to the needs of others. I talked to him particularly about the way he hugely contributes to the family and how Mum and Dad value his presence, and about the courage and strength he offers to them through his determination. As a totally dependent, disabled 11-year-old, Mark needed to know that, although he felt disempowered in so many ways, his bravery, strength of character, cheeky smile and warmth were things that significantly helped those around him – parents, staff and other visitors.

I assessed that Mark needed to be reassured of how much he was securely loved by his mum and dad and by God, and how he belonged to his family and the hospital community. I clearly spoke about this and went over the colours he had chosen for his keyring. I then had enormous difficulty actually tying the elastic with beads on onto the metal keyring but eventually managed it! This caused great hilarity and drew assistance from Mum with some Blu-Tack (reusable adhesive putty), thus including everyone in the closure of the encounter. As we finished, Dad observed, ‘You’ve really enjoyed that Mark, haven’t you?’ and Mark nodded in agreement. Helpfully, Mum said, ‘We’ll hang this [spiritual care keyring] on your stand so you can see it as a reminder.’ Mum hung it on the stand and Mark nodded. We left reassuring the family of prayer. Mark seemed more relaxed than when we arrived.

Encounter 2

This second encounter came some months later, towards the end of Mark’s stay at BCH. Having visited Mark regularly for some months and grown in understanding of his situation and physical, emotional, social and spiritual needs, I assessed that Mark was feeling very frustrated with his physical limitations: his cognitive ability was fully functioning yet he could not communicate verbally or in writing what he was thinking or feeling. Over the weeks, Mark had responded positively to affirmation and encouragement, and continued to need this. Few people, in addition to his parents, teachers and physiotherapists, gave him extended times of engagement with just him as a person, partly due to the communication challenges for Mark and for the visitor. Mark had a deep awareness of his inner being and a sense of the transcendence that needed nurturing and supporting. This had been evident in his responses to the activities he and I had engaged in and which had given him value and worth for who he was – his personhood and existence – regardless of his measurable human achievements. In this encounter, I used the ‘Looking back on your day’ lollipop stick activity (for the activity instructions, see Nash, Darby and Nash 2015, pp.192–194), sticker faces and written feeling cards glued on a poster, to identify and meet his needs. Because Mark could not communicate other than by nodding or shaking his head and using his unsteady left hand, I wanted to make sure he had as much choice as possible. I showed Mark a selection of stickers wi...