Chaplaincy and the Soul of Health and Social Care

Fostering Spiritual Wellbeing in Emerging Paradigms of Care

Ewan Kelly, John Swinton

• Publisher: Jessica Kingsley Publishers
• Year: 2019
• ISBN:
  9781784504984
• Topic: Theology & Religion
• Subtopic: Religious Counseling

Gathering together thoughts and visions of experienced practitioners, academics, educators and strategic leaders from around the world, this edited volume sheds light on the nature of chaplaincy and its role and significance within ever-changing contemporary healthcare systems.

A wide range of issues central to spiritual care delivery are covered, including reflections on what it feels like to be cared for by a chaplain through illness; the nature of chaplaincy as a profession; and how chaplains can engage with healthcare institutions in ways that have integrity yet are also deeply spiritual. The focus throughout is that chaplaincy should not only be guidance for people in distress, as a form of crisis intervention, but is rather about helping to promote wellbeing and enhance people's quality of life.

Where specialisms tend to fragment systems and individuals, this book seeks to show that true health and wellbeing can only be found through a holistic approach, and shows how chaplaincy can bring this to the table. This book is for anyone who recognises the centrality of spirituality for wellbeing, and wishes to see what that might look like in practice.

Part 1

The Essence of
Healthcare Chaplaincy

What Does Spiritual Need Feel Like?

Life –

scattered and gathered

fragments.

Broken,

ragged and jagged

pieces.

Not

rounded, whole or

complete

stories.

Beauty and meaning

are there.

– Ewan Kelly

Chapter 1

Living with a Chronic
Long-Term Condition

‘I Can Reflect with Chaplains About
Things I Cannot Share with Others’

Eva Buelens

Introduction

This is the story of a young Belgian woman who has lived with a debilitating chronic illness for many years. During her first weeks in hospital for investigation and treatment, she was visited by a female chaplain of approximately the same age. What started as a casual meet and greet flourished into a significant caring relationship. When this chaplain left the hospital, another female chaplain began journeying with this woman. This is a story that illustrates the impact that living with a chronic long-term illness and associated spiritual suffering may have on a person’s quality of life and wellbeing. In addition, it shows the significance of chaplaincy care in response. The patient’s story was gathered by recorded interview with a chaplain. The interview was transcribed and then read by the patient to verify its accuracy.

Can you describe the impact of your chronic illness on your life and wellbeing?

My identical twin sister had type-1 diabetes. Ten years after her diagnosis, I was diagnosed with the same disease; therefore, I knew what to expect. I realised immediately that I would be ill for the rest of my life. This irrevocability is extremely difficult. I didn’t know how to communicate this to family, friends and colleagues. Being chronically ill has had an enormous impact on my life.

During the first years of my illness, I felt a need to hide it from my colleagues and friends. Only my parents, sisters and some family members were informed. I felt so ashamed. I didn’t dare say that I needed to follow a diet when out together with friends or colleagues. I would be in a situation where I would have dinner in a restaurant and drank too much soda. I didn’t want others to know I was sick. I also played competitive volleyball at that time and didn’t tell the team about my illness. One time I became really ill during a game because of low blood sugar. Instead of just telling others what was wrong, I pretended I needed to use the bathroom urgently and left the field.

I don’t know where the shame came from. Maybe I did not want to acknowledge that I was becoming more ill as time passed. The fact that my partner left me because I was diabetic was such a negative experience that I feared others would react in the same hurtful way. Not telling most people what was happening to me complicated the process of integrating my illness in a major way. When I look back now, maybe I would have handled it differently.

During the years that followed, my hospital stays became longer and the loneliness greater. At first friends came to visit me, but as time went by, they too stayed away. The distance that they had to travel to come see me in the university hospital was too far and I was there for so long every time. Maybe I am partly to blame for their waning interest as I often didn’t tell them I was admitted to the hospital again. I did not only lose a lot of friends but also my colleagues. My doctor advised me to resign from my position as a gym teacher in a high school. It became impossible to continue my profession. I did not have a lot of contact with fellow patients because I found it very hard to talk about my illness. Consequently, I was only in touch with staff in the hospital: doctors, nurses, dieticians, physiotherapists and the chaplains. I experienced my illness as very isolating. Luckily, I did have the ongoing support of my family.

The challenges I had to endure were not only social, but physical also. A lot of surgery, a lot of tests, a pancreatic transplantation and all the scars that I have as a result. I often had to stay for months on end in the hospital, a few times a year. (At least I don’t get lost in this big hospital any more!) There were so many treatments that were unsuccessful. Because of that, new surgeries and therapies were always stressful. I felt a lot of anxiety that they too would not work. The uncertainty was horrible to endure.

A lot has changed on a financial level too since I have been ill. My financial situation has become more and more difficult, and I find that debilitating and destructive. I used to travel a lot, but I can’t afford to do that any more. Just like my illness, my financial limitations will be there for the rest of my life. I cannot change anything about that.

Therefore, my illness has had a major negative impact on the quality of my life. If I hadn’t become ill, at least I would have had friends and colleagues. Sometimes I notice that other patients discover a positive meaning in their chronic illness. I cannot seem to do that.

What are your resources? What is important and meaningful?

The connectedness with my twin sister is extremely important to me. I had, despite the difficulties associated with a chronic illness, a very strong bond with her. Unfortunately, she died some time ago. I visit her grave regularly.

The connectedness with my parents is strong. I moved back into their house after my mum developed cancer. By doing so I could make sure, together with my dad, that she didn’t need to go into hospital as we could take care of her at home. My mum was grateful for that. It was very hard on me, including physically. Yet I find it very meaningful that I was able to do that for her. This way I was able to give something back for all the care she gave me over all these years. After she passed away, I stayed in the house to take care of my dad. The opportunity to take care of him is very important to me at this point. I also know my mum would have wanted me to do so. It is because of him that I carry on, but other than that I don’t have much to live for.

I had a dog for 10 years. We had a very special bond. He was very faithful and I loved him very much. It really was devastating when he died. Luckily, I still know some people with dogs from the time we went to the dog-training school together. The contacts remain and I try to join them for dog walking once a week, which I enjoy.

Small things are very meaningful to me: going away, taking beautiful pictures, being in nature, praying with others, visiting the graves of my twin sister and mum.

How did you experience the contact with the chaplains?

A chaplain came to visit me when I was admitted for the first time in the university hospital. I didn’t ask for a chaplain at that point, but maybe I would have later on. We hit it off immediately. When the first chaplain left the hospital after 10 years, she introduced me to her colleague. I have a very good relationship with this chaplain too. They brought diversion during those long days and nights. I didn’t receive any visitors during the week. At the weekend my family visited. Therefore, I really looked forward to the visits of the chaplains.

We talked about daily life and we explored what kept me going in all kinds of circumstances in relation to my illness and life. We also talked about faith. Sometimes the talks were very deep, other times they were entertaining and light; we could share funny stories and sometimes they helped me play practical jokes on the staff. I really needed these conversations and experienced them as very positive, enriching and supportive. I could, for example, share all my anxiety and uncertainty about the coming treatments with them. It relieved me of tension. I felt less anxious and I had the feeling I was not alone. The talks helped me to continue and to hang in there; a great bond between me and the chaplains grew. I could reflect on things with them that I could not share with doctors, nurses or my parents. I do have a good relationship with my doctor and with some of the nurses, but still the relationship with the chaplains is really different. Sometimes the chaplains would send their interns to me for a visit because they said I had more experience with chaplaincy visits than any other patient in the hospital. I enjoyed meeting with them and I would tell the trainees if I thought they would make good chaplains.

As well as talking with me, the chaplains also prayed and lit candles for me. If I was discharged, I regularly got a phone call which made me feel supported outside the hospital too.

A lot of meaningful assets in my life have gone in recent years: the passing away of my dog, my twin sister and my mum. Also, during these hard times, the chaplains supported me. I could share my grief and anxiety with them. They supported me in focusing on memories and the ongoing connectedness with my loved ones, and they helped me confirm what is important to me, like stressing the meaning I find in taking care of my dad. When my twin sister died, the chaplains, together with a head nurse, came to the funeral. I did not expect that. It meant so much to me that they came.

At this stage of my illness, now that I have to battle chronic kidney failure along with diabetes, the chaplains play an important role. I know that I will probably end up on dialysis. My sister was on dialysis for 3 years and then died. I think that the same destiny awaits me. Despite the emptiness I experience in my life, I would like to continue to live. But those harsh realities of the future can be shared with the chaplains, and that is a major support to me. They create a space alongside my anxiety and grief which gives me hope and trust.

Chapter 2

Experience of Spiritual
Distress in an Acute Setting

Living with Perinatal Loss

Daniel Robert Nuzum

Introduction

Pregnancy and childbirth are at the heart of human creation and existence. Both are profoundly relational experiences that touch at what it is to be human. Likewise, life is finite, so coping with death and loss is also an essential human experience. We call it grieving. In the normal course of life, we encounter loss as we grieve the death of grandparents and parents. However, it is a sad fact that death also occurs at the beginning of life, and when it does it disrupts the perceived ‘normal order of events’. Uninvited and often unexpected, such a death enters our human narrative with lifelong impact.

Most parents, from the moment they discover that they are pregnant, enter a time of excitement, planning and anticipation as they await the birth of their baby. For some parents, pregnancy is a time of anxiety as perhaps this pregnancy was unplanned or unexpected. For all parents, the impending arrival of a new baby changes their world. As parents journey towards the birth of their baby, this time of waiting and expectation is for many a spiritually positive experience as new life is both experienced and anticipated during pregnancy. Although not an illness, pregnancy can bring with it complications and uncertainty; many parents receive bad news about the health of their baby during routine antenatal care. An antenatal diagnosis of a life-limiting condition presents parents with difficult choices, and in all of these cases parents have to come to terms with loss – of hopes, health or function, and the hoped-for future with their baby. While most pregnancies result in healthy babies and much joy for new parents, it is a sad reality that not all babies will survive pregnancy. Many parents will instead experience the heart-rending grief of the death of their baby during pregnancy or shortly after birth. In this experience, parents begin a lifelong journey of grief as they are set adrift from the joy of new life into the abyss of bereavement. The joy of new life is replaced with the spiritual low and distress of perinatal death.

The death of a baby is recognized as one of the most traumatic and enduring bereavements with multiple sequelae. Unlike other bereavements, perinatal grief is a ‘prospective grief’ that has a repeating cyclical pattern. It continues throughout the lives of the surviving bereaved parents, siblings and extended family. As future life events, significant milestones and family and community occasions take place, the absence of the baby who has died brings a fresh experience of grief and a profound sense of loss as each life moment is navigated. As these occasions and events arise, parents and family members grieve afresh. These experiences of grief are often framed by ‘what if?’ questions as families seek to locate their baby in the narrative of their family story.

Coupled with the personal and familial experience of bereavement is the reality for many parents that their grief is not publicly acknowledged or recognized (Kelley and Trinidad 2012). This ‘silence’ is in itself a further isolating experience for parents and contributes to a disenfranchisement of grief. Only in recent years has there been more public awareness and discourse about miscarriage, stillbirth and neonatal death both in society and in faith communities (Meaney et al. 2017; Nuzum, Meaney and O’Donoghue 2017, 2018b). The lack of public and religious ritual and resources is indicative of the experience of silence.

In this chapter the lived experiences of bereaved parents who participated in an in-depth qualitative study are explored to illustrate the impact of perinatal death as an experience of spiritual distress in an acute setting. The setting is Cork University Maternity Hospital, Ireland1 – the broader context being one that is predominantly Christian, albeit with varying levels of commitment and practice. From a chaplaincy perspective, however, the expression of perinatal grief is one that transcends religious affiliation. In common with other forms of grief, perinatal death is a profoundly spiritual experience, and in the context of the stories presented here pastoral care encompasses both generic spiritual care and ritual alongside faith-specific ceremony. Highlighting these personal stories and experiences will help to reframe a pastoral response to this distinctive grief.

The experiences of the parents of babies Aoife, Michael, Joan, Rory, Thomas, Samuel, Richard and James, each of whom died before birth, are given voice in this chapter. While the experiences are particular to the participants, they nonetheless highlight broader commonalities that can be applied to other parents and families who experience similar grief. This chapter is not an isolated enterprise and builds on previous work by chaplains Wretmark (1993), Pierce (2003), Kelly (2007) and Newitt (2015) to offer a broad pastoral response to perinatal loss and grief.

The spiri...