Communicating at the End of Life

Finding Magic in the Mundane

Elissa Foster

• Publisher: Routledge
• Year: 2014
• Print ISBN: 9780805855678
• eBook ISBN: 9781135251314
• Topic: Languages & Linguistics
• Subtopic: Communication Studies
• Index: Languages & Linguistics

This enlightening volume provides first-hand perspectives and ethnographic research on communication at the end of life, a topic that has gone largely understudied in communication literature. Author Elissa Foster's own experiences as a volunteer hospice caregiver form the basis of the book. Communicating at the End of Life recounts the stories of Foster and six other volunteers and their communicative experiences with dying patients, using communication theory and research findings to identify insights on the relationships they form throughout the process. What unfolds is a scholarly examination of a subject that is significant to every individual at some point in the life process.

Organized chronologically to follow the course of Foster's involvement with hospice and the phases of the study, the book opens with Part 1, providing background and contextual information to help readers understand subsequent stories about communication between volunteers and patients. Part 2 of the volume emphasizes the adjustments required by the volunteers as they entered the world of hospice and the worlds of the patients. Part 3 underscores the importance of improvisation and finding balance within the role of volunteer—in particular how to be fully present for patients as well as their family members. The volume concludes with Part 4, which addresses how volunteers coped with the death of their patients and what they learned from the experience of volunteering.

Communicating at the End of Life is appropriate for scholars and advanced students studying personal relationships, health communication, gerontology, interpersonal communication, lifespan communication, and communication & aging. Its unique content offers precious and meaningful insights on the communication processes at a critical point in the life process.

I Hospice as a Context of Health Care and Interpersonal Communication

An important aspect of narrative storytelling is establishing the character and voice of the narrator. In this case, in order for the reader to understand, interpret, and critique the story I tell about hospice, it is necessary for me to reveal the aspects of my character and history that contributed to the events of the story, and to my perspective on those events. In addition, just as setting the scene is an essential part of narrative, establishing the context for the study is an important part of ethnographic writing. In Part I, I invest some time in describing the origins of my involvement with hospice as well as the origins of the hospice movement, and some of the organizational features of hospice that are essential to understanding the context in which the relationships between volunteers and patients were initiated and unfolded.

In chapter 1, I describe my first face-to-face contact with hospice, I provide a rationale for integrating my personal story with the academic reflections that occur throughout the book, and I close the chapter by defining hospice as a social movement, a type of organization, and as the particular organization, LifePath Hospice and Palliative Care, in which I conducted the study. In chapter 2, I describe the aspects of the volunteer training that related most closely to the communication between volunteers and patients, and to the nature of the volunteer role within hospice. Throughout my description of the training, I periodically provide some observations from hospice and endof-life research that link the content of the training to the literature. The voice I employ in chapter 2 tends to privilege an academic perspective, mostly because without experience as a point of reference for the information I received, my understanding of the training was framed by what I had read about hospice. I conclude Part I with reflections on the volunteer training and my perspective as I stood on the threshold of meeting a hospice patient.

1 Beginnings

DOI: 10.4324/9781410615459-1

Am I Ready?

It’s a perfect day in Tampa, early December; the sun is warm but not hot, the breeze is cool but not cold. I park my car under the oak trees that surround the single-story building and stride toward the glass doors. Inside, I hesitate and hover a few feet behind a tall, middle-aged woman who is chatting cheerfully with the receptionist. The woman leans over the counter, obviously comfortable in this environment and, by comparison, I feel every bit the outsider that I am. Suddenly self-conscious, I scan the small foyer in an attempt to appear relaxed. It is an inviting space, with comfortable seats and a wealth of pamphlets—a blend of business office, hospital reception, and private doctor’s waiting room. The space is welcoming, but the signs on the doors and the employees’ identification badges signal that I have entered a medical environment. Still, I’m not as intimidated as I might be in a hospital or doctor’s office, and I remind myself that I’m here for a good reason.

“May I help you?” the receptionist asks as I step into the space recently vacated by the cheerful visitor. The receptionist appears to be in her early 70s, older than I expected.

“Yes, I hope so,” I begin. “I wanted some information about becoming a volunteer.”

“Let me see if someone’s available to talk with you,” she says, turning away from me to pick up her phone.

“I don’t really need to talk to anyone,” I begin, fruitlessly trying to stop her from calling. “Don’t you have a packet?” I trail off as someone picks up her call somewhere in the building.

She turns back to me, briefly, with the phone to her ear. “What’s your name, dear?”

“Elissa Foster,” I reply before she speaks into the phone again.

She completes the call and then turns to face me and says, “Norma Sanchez is the volunteer coordinator. She’ll be out to see you in a few minutes.”

“Okay,” I reply. “Thank you.”

I had intended this visit to be quick, anonymous, and easily reversible if I decide to back out. Now, it seems I must meet someone and give an account of myself. Can’t they just give me some printed information that I can read in private? I don’t know if I’m ready to commit, and I’m unsure of my ability to say no if I feel pressure to sign up.

Looking around, my gaze is drawn to a permanent display on the wall—a sculptured metal tree with small brass leaves surrounding the branches. As I draw closer, I see names and dates commemorating loved ones and celebrating the work of the organization. On the wall beside the tree are more plaques and awards; I wonder about the faces and stories behind the names. I pick up an in-house newsletter. The feature story describes how one volunteer became involved; there is a Q & A section inside and, on the back, a section titled “Want to know more?” I realize that this question is directed to me.

I hear an internal door opening onto the foyer and slip the newsletter into my briefcase.

“Hello, Elissa?” I hear a friendly and vivacious voice behind me.

When I turn, an attractive, bright-eyed woman in her 40s is walking toward me. She smiles broadly as she extends her hand and I can’t help but smile back.

“I’m Norma Sanchez. I’m a volunteer coordinator here at LifePath Hospice. Why don’t we find somewhere to talk?” Norma ushers me through the door from which she just emerged. “Do you have time?”

“Sure.” My pulse quickens as I realize that this is the beginning of the journey.

We enter a labyrinth of office cubicles and weave swiftly through narrow corridors. I quickly lose my sense of direction. I notice that several employees are wrapping cabinet doors and covering notice boards with Christmas paper and ribbons to look like gifts. The whole space sparkles with color and tinsel.

“We like to decorate for the holidays,” Norma informs me with a smile.

“Looks great,” I respond, noting the sense of belonging and stewardship communicated by the act of decorating a space. I wonder if people stay in these jobs a long time.

“Did you call and speak to someone?” Norma asks.

“Yes. I called a while ago and requested information. But then, I was going to be in the neighborhood anyway, so I just decided to drop by.”

I do not mention that my request for information was never answered. I also gloss over my hectic drive from the north side of town through heavy traffic on the interstate. Still trying to appear casual and unconcerned, I suppress the fact that I drove 15 miles to put myself “in the neighborhood” so I could just “drop by.”

Norma introduces me to some of the women in the office. “Elissa is interested in becoming a volunteer.”

Amidst a collective murmuring of approval, someone asks, “Do you want to volunteer with patients?”

“Yes, I think so,” I reply, and everyone smiles. I’m beginning to enjoy the attention, so I’m also beginning to relax. Norma finds an empty office and we settle in.

“So, tell me about yourself,” she takes me by surprise. I expected a prefabricated spiel about hospice and the duties of a volunteer; instead, I’m called to tell a story.

In a few sentences, I describe my work as a researcher and teacher in interpersonal communication and health care. Norma asks questions often, and we quickly move to the topic of my family and my home in Australia.

Then, she asks, “How did you hear about hospice?”

I describe my experiences with another research project that focused on the work of private geriatric care managers. This project introduced me to the field of communication and aging, and the participants I interviewed often mentioned hospice as a medical organization that was exceptionally humane and holistic in its approach.

“So, I developed an academic interest in hospice as well as a personal one,” I explain. “I’d like to find out how hospice manages to do what it does—particularly when most of the medical profession isn’t good at developing relationships and communicating with patients. From everything I’ve heard, although hospice is a medical organization, it consistently provides personal care and support to patients and families.”

Norma smiles, “Hospice is wonderful and I love working here. It’s also true that hospice is an organization like any other. We’re not perfect.”

I nod quietly. Despite my efforts to be detached and objective, I tend to place hospice and everyone who works here on a pedestal. Perhaps my nervousness stems from this idealized image of hospice work. Norma’s observation that hospice is “not perfect” tempers my idealism and reminds me that I have much to learn about the reality of the organization.

“Now, Elissa, I want to ask you a couple of questions that I ask everyone who is interested in volunteering. First, have you had any losses in your life? Not just someone in your life who has died, because there are all kinds of losses—losing a job, a divorce or separation, even the death of a pet can be a significant loss.”

When I volunteered for hospitals in the past, the coordinators didn’t remember my name from one week to the next, let alone ask about my life and motivations. Although I can imagine some people feeling defensive in response to this question, because of Norma’s obvious interest in me and her work with hospice patients, I don’t mind talking about painful experiences.

“Well, I was divorced earlier this year,” I respond. “It was the right thing to do and I have no regrets, but I miss my husband’s family a great deal.” Even as I say this to Norma, I recognize that, for me, talking about being divorced is more embarrassing than painful.

Noticing my discomfort, Norma says, “I’ve been there, too. It’s okay.”

“And I suppose I also deal with being away from my family.”

“I can hardly imagine; you’re so far from home!” Norma exclaims.

“You said that all your family is in Australia?”

I nod. “And we’re very close, even though we live on different continents.”

“Do you have grandparents or older relatives there? Or are they deceased?”

I take a breath. “Actually, my only living grandparent, my grandmother, died soon after I moved to the United States. That’s probably the most important reason for why I came.”

When I left Australia I knew my grandmother was near the end of her life. She had been diagnosed with lymphoma 18 months earlier, and I had sought information from my own general practitioner about her prognosis. My doctor described my grandmother’s outlook as “not good.” In retrospect, I regret that I did not make myself more available to her as she struggled with cancer. She approached her disease in the same tough, no-nonsense way she did everything else. I remember helping her to contact the Cancer Society when she needed a wig, and taking her to and from her appointments, but we never spoke about her feelings, or mine. Although I didn’t admit it at the time, I was glad that she never brought it up; that way, I was able to cling to the comfort of my own denial.

In August, when the day came for me to leave for graduate school, I could barely speak to her. I told her that it was very hard to leave and that I loved her very much. When she said, “I know,” she communicated so much—that she knew I loved her, that she knew how difficult my decision to leave had been, and that she knew we would not see each other again. I resisted an emotional display because she was her usual, stoic self. I hugged her until she said, “Go now.” I left her apartment quickly, crying, hoping that I had said enough, fearing that I hadn’t. I think she planned that to be our last contact, but as we pulled away in the car to go to the airport, she walked out to the front gate to wave me off. I blew kisses out the back window until she disappeared from view.

When the phone call came from my mother in early December, I was shocked. I didn’t expect Grandma to die so soon. I told myself she would celebrate her birthday in March and this fantasy sheltered me from thinking about her dying at all. Of course, her death would have surprised me no matter when it happened, because I never allowed myself to face the reality of her illness. Whenever I called home and asked to speak to Grandma, I was mystified by the prolonged silence on the line before my mother or father would say gently, “Not tonight.” It never occurred to me that she was too weak to talk. Because I did not stay to take care of her, I never saw the way the cancer ravaged her body; I only saw it reflected in my sister’s eyes when she told me many months later, “It was horrible. She didn’t look like Grandma anymore.” I could see how vivid that memory was for my sister, but I had no experience with which to understand what it was like to watch a loved one’s body deteriorate to a point beyond recognition. When I remember my Grandma, I have the luxury of seeing her with a straight back, strong arms, and bright eyes, but now I mourn both my grandmother and the opportunities and responsibilities I surrendered when I left to begin graduate school.

“Was your grandmother in hospice?” Norma asks.

“No. I think in Australia hospices are like hospitals—only for people who can’t stay at home. My Mum took a leave of absence from her job and was her primary caregiver, though Mum also had a lot of support from my sister and my Dad. Grandma’s doctor coordinated her medical care and the community nurses came to the house every day or so. My mother speaks very fondly of the nurse who took care of Grandma. I get the impression that it was a very important relationship for my mother and for my grandmother, too. They became very close.”

“Do you wish that you’d been there for your grandmother?” Norma asks.

“I did feel that way for many months. I felt guilty about leaving, especially since I never got to speak to my grandmother again. I also felt like I let my mother down by not being there to help her. It took me a long time to talk about anything to do with Grandma’s death. When I was finally ready to hear about it, I wanted to know what it was like, and the story she told me about the last few days of my grandmother’s life reassured me, a lot.”

My mother told me this story. “It was the last day of the school year and I had planned to attend the end-of-year church service. I had been on leave for weeks, but I wanted to see the students who were graduating, and I also needed the support of the other teachers. Well, I soon saw that Grandma needed me to stay with her, so I called Sheila in the principal’s office to say I wouldn’t be able to make it to the service. She said, ‘It’s all right. We understand. You know we’ll all be praying for you. The service will be for you and your mother.’

“I was disappointed about missing the service and, after a lifetime of struggle, I wanted to feel close to my mother. You may not know this, but when I first wanted to go to art school, she thought my plan was very frivolous—but she supported me anyway. For some reason, this was on my mind as I came back from talking to Sheila. I also realized that few of the other teachers or my students had ever met Grandma, yet they were sending her their love. So I told her, ‘You did a really good thing sending me to art school. I’ve been able to touch the lives of hundreds of children through the years, and those children are up at the school praying for you right now.’

“She didn’t look at me but she quietly said, ‘I know.’

“Later that morning, I was giving her a sponge bath and as I stroked her forehead she closed her eyes and said, ‘My darling child ….’

“That was the only time she ever called me ‘darling.’

“She lost consciousness a little while later and we finally had to take her to the hospital that afternoon. She died the next day.”

As my mother told me that story, tears welled in her eyes and her face expressed sadness, strength, and pride. As I tell Norma my mother’s story, I am more...

Table of contents

• Cover Page
• Half Title Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Foreword
• Preface
• Part I Hospice as a Context of Health Care and Interpersonal Communication
• 1 Beginnings
• Am I Ready?
• Integrating the Private and the Public
• Defining Hospice
• Anticipation
• 2 Volunteer Training
• Arriving
• Communication in Hospice
• Second Day of Training
• The Role of “Talk” in Hospice
• Physical Death in Hospice
• Graduation
• Reflections: Hospice Volunteer Training
• Part II Entering the Country of the Dying
• 3 Taking the First Steps
• The Telephone Call
• Meeting Dorothy
• An Early Crisis
• 4 The Volunteers' Stories
• Sarah
• Emilia
• Tom
• Chris
• Shyanne
• Hannah
• 5 Going Out
• The Fishing Pier
• Dorothy's Restaurant
• Reflections: Surmounting the Stigma of Dying
• Part III Communication as Improvisation Learning How to “Be There” for People at the End of Life
• 6 Living in the Moment Between Life and Death
• The Coffee Maker
• Building a Bridge
• Tom
• Sarah
• “The” Conversation
• Reflections: What Does it Mean to be “Dying” in Hospice?
• 7 Caring Without Conversation
• Emilia
• Chris
• Another “Spell”
• Reflections: Assumptions about the Value of “Talk” in Hospice
• 8 Being Together, Letting Go
• September 11, 2001
• Dorothy's Birthday
• Hannah
• Dorothy's Fighting Spirit
• Shyanne
• Back on Oxygen
• The Dollar Store
• Reflections: Dialectics and Finding Balance in the Volunteer Role
• Part IV Communication at the Time of Death
• 9 Endings
• Slowing Down
• Our Last Visit
• Letting Go
• One Last Time
• 10 Volunteers' Reflections on the First Year
• Catching Up
• Shyanne's Vigil
• The Volunteer–Patient Relationship
• Advice for Volunteers and Hospice-As-Organization
• Lessons to Take Forward
• 11 Hospice and Communication at the End of Life
• Three Aspects of the Volunteer's Journey: Idealism, Criticism, Realism
• Hospice Volunteers as Antidote to the Pain of Social Dying
• Finding Magic in the Mundane
• A Personal Statement
• Appendix
• Narrative Ethnography
• Ethnographic Interviewing
• References
• Author Index
• Subject Index