Case Studies in Spiritual Care

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Case Studies in Spiritual Care of related interest Spiritual Care in Practice Case Studies in Healthcare Chaplaincy Edited by George Fitchett and Steve Nolan ISBN 978 1 84905 976 3 eISBN 978 0 85700 876 3 Spiritual Care at the End of Life The Chaplain as a ‘Hopeful Presence’ Steve Nolan ISBN 978 1 84905 199 6 eISBN 978 0 85700 513 7 Chaplaincy in Hospice and Palliative Care Edited by Karen Murphy and Bob Whorton Foreword by Baroness Finlay of Llandaff ISBN 978 1 78592 068 4 eISBN 978178450 329 1 Critical Care Delivering Spiritual Care in Healthcare Contexts Edited by Jonathan Pye, Peter Sedgwick and Andrew Todd ISBN 978 1 84905 497 3 eISBN 978 0 85700 901 2 Case Studies in Spiritual Care Edited by George Fitchett and Steve Nolan Jessica Kingsley Publishers London and Philadelphia [permissions granted] First published in 2018 by Jessica Kingsley Publishers 73 Collier Street London N1 9BE, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA Copyright © Jessica Kingsley Publishers 2018 Front cover image source: [iStockphoto®/Shutterstock®]. The cover image is for illustrative purposes only, and any person featuring is a model. All rights reserved. No part of this publication may be reproduced in any material form (including photocopying, storing in any medium by electronic means or transmitting) without the written permission of the copyright owner except in accordance with the provisions of the law or under terms of a licence issued in the UK by the Copyright Licensing Agency Ltd. or in overseas territories by the relevant reproduction rights organisation, for details see Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library of Congress Cataloging in Publication Data A CIP catalog record for this book is available from the Library of Congress British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 78592 783 6 eISBN 978 1 78450 705 3 Printed and bound in Great Britain OR Printed and bound in the United States 168 Chapter 11 ‘I do want to get this funeral planned’ – Daisy, a former colleague in hospice care Patricia Roberts Introduction At the centre of this case study is care for ‘Daisy’ (all names are pseudonyms), a nurse in her mid-60s who was dying of an aggressive form of cancer. I was new to the hospital and was in the process of learning the different groups and subgroups of employees and patients within the hospital when I became aware of Daisy’s needs. As I cared for Daisy, her family and co-workers, I attempted to both respect the traditional Christian practices that characterised chaplaincy, as it had been practised at the hospital, and create an atmosphere that welcomed greater diversity. Additionally, recognising that the Christian religious rites of my background might be limiting when working with those who have no religious belief or alternative belief systems, I sought to meet the needs before me, rather than attempt to mould those in need into my spiritual stance. Background Daisy was a well-loved nurse at a medium-sized hospital in the southern USA. She had worked in this hospital for over 30 years. She started as a staff nurse and gradually worked her way up into senior management. Known for her optimism and generosity, she sponsored many student 169 ‘I do want to get this funeral planned’ nurses, encouraged the secretaries in the department, and was generally well-known throughout the hospital for her ready smile and spirit of helpfulness. Daisy grew up in a small town near the coast in an area of great historical significance during the American Civil War. She had two sisters and an elderly mother, all of whom still lived in the town where Daisy grew up. Daisy was of European decent, and her siblings were members of the Daughters of the American Revolution,1 although she never joined. Daisy was married with adult children. I am Euro-American in my mid-50s with a Master of Divinity degree. I am ordained by the Christian Church, Disciples of Christ, a rather liberal Protestant denomination. At the time I met Daisy, I was a new Director of Chaplaincy and the first female chaplain hired at this hospital. Daisy and I both reported to the same supervisor, and it was from our mutual supervisor that I learned that Daisy was ill. As our visits progressed, I asked Daisy for her permission to share her story as I felt that our work might be a learning opportunity for future chaplaincy students. She readily agreed. Case study As I began working at the hospital, Daisy had returned to work, in remission after being hospitalised at another hospital for several weeks. I took the opportunity to introduce myself when we happened to attend the same meeting. I suspected that she could benefit from some spiritual and emotional support, and I wanted her to know that I was available should she feel the need . A week later, I approached her in the hallway outside her office and made some general observations about the weather. Daisy immediately confessed that she was always cold, due to the cancer. Her face was 1 The Daughters of the American Revolution is a lineage-based organisation for women descended directly from someone who had been involved in the USA’s struggle for independence. The organisation promotes historic preservation, education and patriotism. 170 Case Studies in Spiritual Care drawn but I could see she had been quite pretty before the cancer took its toll. She smiled, yet her eyes were sad. She bemoaned how her clothing now hung on her. She stated flatly that she was not going to spend any money on new clothing, that there was ‘no use’. It seemed that she had dropped her pretences, not knowing me personally but responding to my chaplain role. I started my ministry with Daisy as ‘the aesthetic witness’, a term coined by James E. Dittes which describes how ‘The pastoral counselor witnesses – steadfastly, undistracted, relentlessly – the life experience of the counselee, the harried pilgrimage of a soul that has too often scurried in shadow. Lucid listener, the counselor beholds what has been averted, attests to what has been dismissed, hopes and shames alike’ (Dittes 2005, p.137). I was determined to make a space for Daisy to grieve her loss. Listening to the finality in her voice regarding how her clothing fitted her, I suspected – rightly, it turned out – that she was not in remission and that she was not going to live very long. Even though my ministry with her began in a busy hospital hallway, I was able to listen closely as she talked. Much of what she said was about her feelings of frustration and anger at the cancer. She seemed to be sorting out her priorities and her life. At first, she did not share much about her family or personal relationships beyond that she adored her dog, Jumbo, loved to golf and hoped to retire to her lake house. Later, I found myself wishing that I had asked her more questions about her background. However, at that point in time I had no idea in what direction this relationship might progress. Daisy and I continued to have ‘hallway’ talks for the next month. She shared that she had grown up in the Methodist Church but had felt disconnected from that faith and simply considered herself spiritual. I sensed that there was a story behind her feelings, although I never had a chance to discover why she felt as she did. Meanwhile, I continued to field enquiries from Daisy’s co-workers who appeared to feel a real stake in her recovery. I also observed that, because of their needs, Daisy found herself in the position of fighting an aggressive cancer and holding up the brave front for everyone around her while she was at work. I sensed that she had started her fight against the cancer aggressively but as time passed she had become more resigned to the fact that the cancer was 171 ‘I do want to get this funeral planned’ not abating. During our conversations, she alluded to feeling a sense of guilt regarding her own feelings of resignation when her children were so determined that she would recover. From a pastoral care stance, it became all the more imperative that I deliberately carve out the space for Daisy to talk about her feelings of anger, fear and helplessness, without having to ‘be strong’ for the chaplain. On more than one occasion, Daisy expressed her weariness of ‘pretending’ to be strong. However, she was resolute to continue in her role and resisted any suggestions that she share her feelings with her family or co-workers. It seemed to me that she was intent on continuing to play her expected part within her family system. Daisy did not attempt to placate her co-workers on the topic of religion. At times, it seemed that she enjoyed their discomfort with her spiritual views. It seemed that the entire clerical staff in that department felt that Daisy needed to ‘get right with the Lord’. They would bring tracts and booklets to leave with her. This group of people also openly and aggressively prayed for her recovery. Two women in the office expressed their concern about Daisy’s relationship with a certain doctor who worked in their department. I knew this doctor from previous conversations. Although he did openly state that he professed atheism, he was always ready for a conversation on religion and faith. He had worked with Daisy for many years. He came from a Sikh background and he shared his Sikh beliefs with Daisy, offering a different perspective on the afterlife, in which she took great solace. Knowing the pressure that she was feeling from her co-workers, I felt it was important that, as the ‘religious’ person, I offer support without pressure. I would ‘pop in’ from time to time, although most of those visits were merely times Daisy shared medical updates. Three months later, I took two weeks off from work for surgery. Christmas was approaching and while I was out, Daisy made the decision she would retire at the end of the year. When I returned to work, Daisy had retired and ‘disappeared’ from my life. From time to time, I wondered how she was doing but I did not reach out to her. Just before Easter, Daisy returned, working for another agency housed within the hospital. This was no surprise to me, since it had 172 Case Studies in Spiritual Care seemed that work was one major way that Daisy distracted herself from her declining health. She was even thinner now, walking with a cane. Due to my own surgery, I was using a knee scooter to make my way throughout the hospital. I would see her from time to time and we would share pleasantries but nothing of substance. She always seemed to be accompanied by her new co-workers. Easter was early that year, and shortly thereafter a nurse manager named Sharon asked that I preside at her wedding. It was a large wedding, catered and hosted in a historic building in the countryside at the edge of town. There were many employees in attendance. Although it was spring, it was unexpectedly cool and wet, with the actual wedding held in a decorated stable. The chill made me thankful for my white clergy robe and stole. I had removed my foot brace for the actual service. When I looked out into the congregation, I noticed Daisy in the crowd, our eyes met and we exchanged smiles. After the ceremony, I looked for her at the reception but she had already left. First visit Three weeks later, Sharon, in tears, gave me Daisy’s number and said that Daisy had requested that I call. She informed me that Daisy’s condition had worsened and the hospice had taken over. The entire nursing department took this news very hard, but Daisy’s former department had thought she was in remission, so they took the news especially hard. They were in shock. I placed the call but only got the answering machine. I left my number. Eventually, I received a call from Daisy’s adult daughter, Ashley. She said that her mother was in the hospice and had requested that I officiate at the funeral. She gave me directions to her mother’s home and we set up a time to meet. From that point, the experience was disorienting for me. I was still navigating the world on a knee scooter because of my surgery, transported from place to place by my youngest daughter. It is not my practice to offer any spiritual support outside the confines of the hospital to employees or patients, yet somehow this felt important and my supervisor agreed. 173 ‘I do want to get this funeral planned’ Daisy’s condition seemed to have a wide ripple effect throughout the hospital and I speculated that I would be encountering further spiritual care challenges resulting from Daisy’s death. Needing to find my place within this hospital system, the care of Daisy outweighed my previous practice of confining pastoral care to working hours. My first meeting with Daisy and her family took place in Daisy’s home. Daisy was sitting in a large chair. She looked smaller than I remembered and pale. She was wearing a new wig and she had lipstick on. Her smile was still as contagious as ever, though, and she seemed genuinely glad to see me. Daisy introduced me to her sister Barbara; the resemblance was certain and she seemed to be an older version of Daisy. Barbara shared a few details about their family, then excused herself and allowed Daisy and me to have some privacy. Daisy began to share some broad ideas of what she wanted in her funeral. She seemed stumped when thinking about musical choices. It did not take me long to realise that Daisy had a strong need to project her vision on to me and to control her funeral since she had so little control of anything else. The more she spoke, the more obvious it was that she had other things on her mind. So, I enquired: Chaplain: Daisy, you seem agitated. Daisy: (With a sigh) My husband just doesn’t ‘get it’. He thinks that I should just let things go and relax. How can I do that? I’m dying! We have been fighting a lot, and I have been in so much pain I can’t sleep, and neither can he . Chaplain: I am sure this must be painful for him to see you like this, especially since he can’t fix it. Daisy: (Again with a sigh) I am sure that is what it is. We are both so tired, and he must work. He said he has to work or we won’t have health insurance. At least he gets to get out and away. I am just so mad. We have not been married long enough. You know, we haven’t been married all that long, just seven years. After this visit, I felt a bit frustrated because our conversation never returned to the funeral. I felt that attending to Daisy by providing a 174 Case Studies in Spiritual Care sounding board for her feelings was sufficient, yet inside I began to doubt I would have enough information to plan the funeral service. I struggled to retain my stance as the aesthetic witness and found myself wanting to move the conversation in the direction I needed. Second visit A week later I met with Daisy again. Her health seemed to be rapidly declining and her eyes seemed to be losing their sparkle. However, she was neatly dressed in her robe and a new blonde wig. This visit was more focused on the funeral. Her plans were more specific and it sounded more as if she was planning a wedding than a funeral. Daisy requested prayer during this visit, which was new. Daisy’s daughter Ashley established a blog about her mother that she kept updated daily. This was to discourage phone calls and to allow Daisy’s friends and co-workers to keep abreast of her condition. I decided not to read the blog; instead, I decided to assess Daisy personally. According to one of the nurses at the hospital, one of the blog posts reported that Daisy was spending more time in her bed and her family was moving her bed to the sunroom where she could look outside. A group of secretaries and clerks from work read that post and solicited money to bring numerous plants to Daisy’s house, ‘so that when she looked out her window, she could see the beautiful flowers on her deck’. Several co-workers went to Daisy’s home and ‘surprised’ her with their gift of 20 or so azaleas, bougainvillea, geraniums and so on. Third visit A week later, I called to make sure that Daisy was feeling well enough for a visit. This was my third visit to her home. This time it was Daisy’s sister, Lois, attending to her. Daisy was waiting, bundled up with a blanket over her robe. I expected to see her in her hospital bed but she was sitting in the same chair. She no longer bothered to wear a wig, instead covering her head with a grey scarf wrapped securely around her head. 175 ‘I do want to get this funeral planned’ Chaplain: I hear that the ladies at work brought you some plants. Daisy: I really love those girls, and I really appreciate the thought. Lois: There is a note on the door, and we’ve asked that only close family visit. If anyone asks, would you please tell them that sending cards is enough? At this point, Daisy was rapidly weakening. As a caregiver her entire life, she no longer had the energy to provide the care to her visitors that she wanted to bestow and they wanted to receive. Her face looked more drawn this day and she appeared to be in pain. I could not help but notice a huge bouquet of roses in the living room. Lois: Dr Singh came for dinner last night, and he brought those flowers for Daisy. He said they have special significance. (Motioning me over to the flowers) The red rose in the middle is Daisy. It signifies her precious life. The ring of yellow roses represents hope and external existence of the soul in this world and the beyond. The outside ring of white roses represents peace and God that surrounds and gives life to everything represented in the inner circles. He said that these are a tradition in India . Daisy: I think the flowers are beautiful. Dr Singh and I have been talking about life after death. He says life is a continual rebirth. I find that so comforting. I sat down across from Daisy as she commented that her ‘diet’ was not going well. She smiled faintly, a shadow of humour left. Daisy: The nausea is almost unbearable. I am trying to avoid the morphine. I do want to have the most quality time that I can before it’s too late . I opened the conversation directly. Chaplain: Speaking of souls and afterlife, how is it with your soul? Daisy: (Sighing deeply) It brings me comfort when I think that the soul itself is not subject to death. A part of me will remain. Still, my pain is 176 Case Studies in Spiritual Care so distracting. I can’t sleep at night and the nausea is so awful. I don’t know if I even believe in God any more. Her sister quickly interjected, ‘Daisy, you know that’s just not true.’ This elicited another sigh. I joined Daisy by simply stating, ‘Dying is hard work.’ To which Daisy nodded in agreement. Daisy: I do want to get this funeral planned, so I don’t have to think about it. Ashley was here last night, and we spent the evening writing my obituary. Lonnie [her son] wouldn’t come over. His wife said that he can’t stand to see me this way. Chaplain: That must hurt. Daisy: (Nodding affirmatively) I want the funeral to be at our home place on the beach. I want everyone to come there. It is so beautiful, and I have so many wonderful memories there. I used to swim every day. I miss that. Chaplain: Earlier you said that you find comfort in the idea of a part of you living on, or returning. What do you need to finish? Daisy: I have thought about that. There is so much I wanted to do with my life. You know, I have everything a person could want but I still want to stay and enjoy it. I was looking forward to retirement; Perry and I were going to spend our time on the golf course. We were going to take our grandkids out on the boat. There is so much I will miss. We sat in silence, Daisy asked for a prayer. This was only the second time that she requested a religious ritual. I asked her what she wanted to me to pray . Daisy: I want God to give me the strength to die and I want God to take me quickly. This is so hard on my family. I lifted her wishes to God. I looked and observed the tears in Daisy’s eyes . 177 ‘I do want to get this funeral planned’ As I was leaving, I thought to enquire what Daisy would like for the memorial at the hospital. She quickly replied. Daisy: I don’t want any memorial at the hospital. I want everyone to come to the funeral. I have already hired a caterer. (I guess my surprise was evident) I don’t want anyone to have to do any work at all. The next day at work, I sought out Dr Singh. He explained that, although he had worked with Daisy, they were not particularly close until she became quite ill and sought his support religiously. He shared that he felt honoured to help her and that he really liked her family. He told me the details regarding the type of cancer Daisy had and how deadly it was. It seemed that Dr Singh’s religious support was somewhat like my own approach: supportively listening and only addressing explicit religious questions when asked directly. He and I worked out a system of support for Daisy and her family. We exchanged phone numbers and promises to keep the other informed. Fourth visit As Daisy’s health began to decline my visits became more frequent. A few days later I returned, and we discussed the final music choices for her funeral. Daisy had picked two currently popular songs, both of which I had never heard before. Daisy: I know that isn’t a funeral song, but Joshua loves this song, and we dance to it all the time. Daisy’s face was serene as she thought of dancing with her grandson. Daisy: I don’t really have anything in common with the other grandchildren. Just Joshua. He is special. Chaplain: Special? Daisy: Yes, you will see. Joshua has some handicaps. My son is a recovering addict. I don’t know if that caused it. I know that after Joshua was born things were very difficult and my son ended up 178 Case Studies in Spiritual Care divorced. His new wife has some children but they don’t stay with her too often. I have spent lots of time with Joshua. This other song is for my husband. He is a good man, and this has been difficult. I know it will be hard on him. We sat quietly as Daisy seemed to retreat into her own thoughts. After a few moments, I engaged her. Chaplain: I am glad you were able to choose some music, but I was thinking about your mother and your older relatives. I know that your mother is elderly and very active in her church. Do you think we should have a hymn as well? She might find that comforting. Daisy: Oh yes, that would be great; I hadn’t really thought of that. What do you suggest? Lois: I can get Ed and his band to play it. Daisy: (Emphatically) No bluegrass. I hate bluegrass. A glimpse of the old Daisy had appeared, if only for a moment. Lois seemed taken aback but quickly recovered as I returned to the subject. Chaplain: I have a list of common songs that are often sung at funerals. Daisy: Oh no, if we are going to use hymns, I want number 11 and 53 . Daisy had hidden the fact that she was indeed quite familiar with her childhood religion, even knowing the page numbers of the hymns. This made me wonder the more about her faith, and I made a mental note to explore that with her when we were alone. Fifth visit It was four days before I visited again. This time I met Daisy’s daughter, Ashley, for the first time. She answered the door, introduced herself and quickly showed me into the room, then excused herself. Daisy was much weaker at this point. She would doze off and then quickly wake to talk.