Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

What follows are three first-person narratives from the perspectives of two current teen volunteers and one former volunteer at The Hospice of the Florida Suncoast.

• On Being a Teen Volunteer by Justin Lo

• Learning to Value Every Moment by Emily Tibbetts

• End-of-Life Care: A Personal Reflection by Brenda Corace

On Being a Teen Volunteer

Justin Lo

Teen Volunteer, The Hospice of the Florida Suncoast

[Citation: Lo, J. On Being a Teen Volunteer. Innovations in End-of-Life Care, 2000;2(4), www.edc.org/lastacts]

I am a member of HTV, or Hospice Teen Volunteers, which is a group comprised solely of teenage volunteers. I became an official teen volunteer upon entering high school in 1998, but I have really been a hospice volunteer all my life. My mother has worked for hospice for eighteen years, since before I was born. She jokes that I learned compassion for hospice patients through osmosis, while I was still in the womb. I was raised with the hospice philosophy and ideals, a belief that dying is a natural part of life and an expectation that I would help others in my community. As a young child, my mother would take me with her to see some of her patients who enjoyed and wanted to be with children. At Christmas, I would go with her and some of the other hospice staff to sing Christmas carols to the patients. Mom always told me what to expect before we entered each home. I clearly remember one elderly, dying patient. Mom told me that the patient would not be able to openly respond to me but she would be able to hear me sing to her. When we went into the room, the patient’s eyes were closed and her breathing was labored. I was on the side of the bed; Mom was behind me with her hands on my shoulders as I peered through the side rails of the bed. As I sang, the woman turned her head and looked me straight in the eye. I reached through the side rail and placed my hand in hers. She gave me a toothless smile. Something in her manner and actions made my heart melt as I saw the joy and happiness expressed in her eyes from this simple visit. From that time on, I knew I wanted to help those at the end of life. I did not then understand the benefits that would come to me from this activity.

Teen volunteers are a wonderful resource for hospice or any other program. Teen volunteers often begin in high school, continue volunteering throughout college, and find such satisfaction that they go on to serve the communities in which they live and work for the rest of their lives. At The Hospice of the Florida Suncoast, teen volunteers undergo a 24-hour training course just like any other hospice volunteer. In addition, special teen volunteer classes are designed to provide a peer learning experience and to reduce learning anxiety. Teen classes are often taught at the high school, area churches or nursing facilities for easy access to training. Recently, The Hospice of the Florida Suncoast’s educators trained teens to teach other teens. I was honored to be one of the initial teen educators in the pilot training, and I believe it is a very effective program. Allowing properly trained teens to teach promotes communication between the educators and the students. The teen educators can tell stories, provide support, and effectively relate hospice experiences to students their own age. We can identify with teen volunteers’ concerns and calm fears they may have about caring for dying patients. Students can also relate to the educators, creating a better learning environment.

We also have a Hospice Teen Council, which is comprised of the leadership group and represents the teen hospice volunteers in our high school. The Teen Council, which is composed completely of teens, allows teens to work together in a positive and comfortable environment. The Teen Council benefits high schools by bringing the opportunity for service learning to high school students, as well as bringing positive recognition for the school itself. The Teen Council at my school, Palm Harbor University High School, in Palm Harbor won the President’s Points of Light award in 1998 and has many times brought the school and the hospice positive attention from both local television and newspapers. Additionally, the Teen Council creates bonds between its participants. Our Teen Council feels like a giant family, where you know someone always cares about you and is always there to talk or support you, which is especially important when working with the terminally ill. I have made many close friends through my experience. Working with a group of such caring and compassionate people is a blessing I am glad I received. The strength of the council lies in its ability to foster teamwork, commitment, and to provide teens with similar beliefs and morals the opportunity to meet one another and engage in constructive activities that touch many people’s lives. I know parents also enjoy having their children involved with the Teen Council, because they know where their kids are after school!

Staff at The Hospice of the Florida Suncoast are kind, knowledgeable, and appreciative, and they do their best to match teen abilities and preferences to volunteer activities. Basically, teens can do just about anything if the hospice can recruit and train them. Teen volunteers participate in all fields of hospice. Some volunteer in the office, while others visit patients in their homes, nursing facilities, or assisted living facilities. Many teens participate in seasonal fund-raising events, and others work in the thrift stores. I participate in many of the different areas, including visiting patients and their families, videotaping Life Reviews, setting up the hospice fashion show, gift wrapping, Trees of Love which are holiday trees decorated with ornaments in memory of patients who have died and other fund-raising activities, and office work. I help by typing, working on the data base, setting up for conferences, and assisting with teen training. I have also helped the maintenance department by sanding a mile-long boardwalk for our hospice patients at the hospice residence. I am comfortable in any hospice setting, helping in any way I can.

We have many girls and boys in our teen program. The girls naturally migrate to hospice. There are no real secrets to getting teenage boys to volunteer, but maybe I can provide some tips. Food is always a positive factor. It does not have to be anything fancy or major. As long as the food is consumable, teen guys will be there. Teenage boys have a soft side, but in today’s society they have a hard time showing it. A hospice must provide a gentle transition to working with patients and families. Most teenage boys like to begin with tasks like office work, computer work, or manual labor like sanding boardwalks—one of the more popular activities at our new hospice residence. Once they get comfortable with those areas, they can progress to working with patients. Like many people in a new situation, in my experience, boys often prefer that another person—another teen volunteer, or a staff member—goes with them the first couple of times to see a patient. I think one of the most effective ways to recruit teenage boys is through the girls. Tell the girls to bring some of their guy friends to a certain event or training. Boys will usually follow the girls, and once they are exposed to this type of work, all the fears and myths are dispelled, and they usually stay for their entire high school careers.

The main barrier to getting teens to hospice is lack of knowledge. Teens don’t really know about it or the benefits that accompany such a wonderful volunteer opportunity. I was lucky, because I already knew the benefits before I could hear any myths. Spread knowledge among the teens and expose them to the positive aspects of end-of-life care.

One of my favorite volunteer activities is called a Life Review. A Life Review is a chance for patients to tell their life story on video for their family and friends who may or may not be able to be with them during the last phases of life. The video can become a keepsake for the survivors and can provide good memories to help the family through the grief period. Sometimes the patient describes parts of his or her life no one has ever heard about, not even the closest family members. Life Reviews have given me precious moments I will always remember. Although all my patients who do Life Reviews claim a special place in my heart, some in particular stick out in my mind. One such patient was an African American man in his early fifties, diagnosed with lung cancer. On the day I went to meet him to do his Life Review, I was going through what I thought was a tough time. I was overloaded with schoolwork, had just broken up with my girlfriend, and had to drive my mother’s station wagon to school because my car was in the shop. The Life Review I did with this gentleman made me realize that these problems were self-centered, materialistic, and not all that important. The patient had been orphaned at a young age and had lived in poverty all his life. Yet, despite all his troubles, he was a radiant and happy man. He told me about his childhood. He had lived on the streets with his brother. If he had gone to a foster home, he would have been separated from his brother, whom he had promised his mother he would look after, before she died. He spoke about civil rights, his beliefs about his culture, and the importance of family. Most importantly, he told me things about life I had never really considered and problems I had never really had to face. He was so destitute all his life that, in fact, he had just received his first and only telephone from the hospice three months prior to my interview so that he could talk to his family, ease his anxiety, and get in touch with his caregivers. He gave me hope for the future and appreciation for the things in life I had taken for granted, like my home and my family (even my little brother). Sharing that day with him, his common sense and wisdom left a permanent mark in my mind and in my heart. As a result, I grew emotionally, as we all do throughout life. This experience inspired me to do more to gain the wisdom that patients have to pass on to us as volunteers.

I am especially lucky to have had this contact at an early age because my growth to adulthood is helped by the wisdom of those who have lived life—professionals at the game. Teen volunteers are apprentices to their patients, learning the art of life. We learn from their experiences and use the lessons they teach us as we grow and develop. Our tools are our ears, hearts, and minds. We learn at the bedsides of patients in nursing facilities and private homes. I believe we are the ones who really get the most out of volunteering. A teenager’s heart is just as big as any adult’s and we have the advantage of youth, energy, and a strong desire to learn about the world. Volunteering has given me joy. Listening, caring, and helping others in their last phase of life is an immeasurable experience. I urge all hospices to get teens involved. They are an asset to any organization and will provide help in ways no other group of people can. Not only will you be helping the hospice itself, its patients and their families, and the organization as a whole, but you will be helping and guiding the future generation by allowing them to positively experience life, death, caring, and compassion.

Learning to Value Every Moment

Emily Tibbetts

[Citation: Tibbetts, E. Learning to Value Every Moment. Innovations in End-of-Life Care, 2000;2(4), www.edc.org/lastacts]

Through working with terminally ill patients, I have learned to truly enjoy the remaining moments of a dying person's life, rather than to focus solely on the idea that the person is dying. As a Hospice Teen Volunteer for the past three years, I have consistently been challenged to focus on the positive, rather than to dwell on the patient's fast-approaching death. I devote several hours of my time each week to the Hospice of the Florida Suncoast, where I serve in a variety of capacities, primarily as a companion to dying patients in nursing home environments. In addition, though, I participate in fundraisers to support the outreach programs that the hospice provides, and also serve on the Hospice Teen Speakers Bureau. As a member, I speak to various audiences, ranging from church youth groups to adult volunteer training classes, and I attempt to share my inspirations and experiences with prospective hospice volunteers.

Before becoming a Hospice Teen Volunteer, I underwent ten weeks of training for two hours each week. During these training sessions, the hospice staff spoke to us about possible encounters we might have with the terminally ill patients. We reviewed the various stages of the dying process as well as the process of grieving that follows. After learning about the potential impact of our volunteer work with these elderly patients, we then made decisions as to whether we would enjoy direct patient contact or would rather do office work, such as filing records or answering the phone.

I elected to be a patient care volunteer, as did my twin brother Michael. The hospice volunteer coordinator paired us with a particular patient and then introduced us to that patient. The volunteer coordinator is my contact person, should I ever have a question or concern regarding the well-being of a patient. If I have any concerns, she would then contact the hospice nurse assigned to the patient.

Since I have been involved with hospice, I have been given the opportunity to visit three patients in their nursing homes and have been challenged to communicate with patients afflicted with Alzheimer's disease and other dementias. Through volunteering with these elderly patients, I have come to understand the lack of purpose and meaning that mentally confused patients can feel while confined in a nursing home. I have found that I can gain access to the patient's world by attempting to understand his or her mental perspective. In addition to talking with patients about their childhoods, how they have been feeling, and their own families, I attempt to interact with them through activities they seem to enjoy.

For example, on our weekly volunteer visits to a particular patient with dementia, Michael and I would often hear the loud outbursts of another patient a few rooms down the hall—cries that expressed a lack of purpose and self-worth. The nursing home staff was unsure of how to quiet this woman, who was often left to yell until her voice gave out. In response to her obvious distress, Michael and I would often wander down the hall to talk with her. We engaged her in conversation and found out that she had an affinity for stuffed animals—particularly cats. She believed that her stuffed cats were real. And she communicated with them as if they were people. Michael and I picked up on the idea and began to enter her world of reality. We talked to her about the cats, and she opened up and began to speak to us about their lives. By gaining an understanding of the outlook of mentally confused patients, I have found that I can gain their trust. I believe that this contact helps these patients battle their own fears and doubts about life.

Isabel, the patient I am currently paired with, loves word searches, so we often work on those together during my visits. Isabel also loves to have her nails painted, so I help her paint her nails when she desires me to do so. Through my visits with elderly, dying patients, I have learned that they truly delight in simply seeing a youthful face. Even if I merely sit by an elderly woman’s bedside or wheelchair and hold her hand, she enjoys the time together with a young person. Sometimes it reminds a grandmother of her own grandchildren, who may be unable to visit her, or it may help her to reminisce about her childhood. Although I originally became involved as a hospice volunteer to fulfill the service requirement set forth by the International Baccalaureate Program, a special high school program that mimics Europe’s stringent requirements for graduation, it has certainly come to be a major part of my life. As a result, I hope to continue working with a hospice program in Washington, D.C., as I begin my college experience at Georgetown University in the fall. I have truly benefited from my involvement with hospice much more than I ever dreamed possible. It has taught me to value every moment of my life, as it is certainly very fleeting.

My grandfather was diagnosed on January 13, 2000, with cancer of the colon, spleen, and lymph nodes. He died one month later on February 12. Needless to say, there was an extremely limited time period between his diagnosis and death in which we could prepare for the dreaded reality of the situation. However, since I have been trained as a hospice volunteer, I have learned that death can be approached as a celebration of life. I feel that I was able to celebrate my grandfather's life with him during the final moments that we did have together, and for that I am thankful. When I visited him two weeks before he died, Grandpa and I talked a lot, and I would simply sit by his bedside and hold his hand. Although it grew increasingly difficult for him to speak to us, he reminisced with me about a few of his early childhood memories, and commented on the incredible change that has taken place in the morals and values from his generation to mine. He told me how proud he was of me, and how he so hoped to know where Michael and I would be going to college. Shortly after we had to go home to Clearwater, Florida, though, he grew so weak that he could no longer talk on the phone with me. To make up for that lack of communication, I e-mailed my grandpa every day until he died. My grandma printed out each of the e-mails and read them to him in his bed. I told him how much I loved him, how proud I was to be his granddaughter, and how much he had taught me, growing up. Grandpa and I had been writing letters back and forth for the past ten years. I have kept each of his letters and put them into an album. I will forever cherish those precious letters, as they allow me to remember the special times and conversations I had with my grandfather.

As a hospice volunteer, I have experienced both painful, heart-wrenching moments and joyous celebrations of life. I have come to feel new emotions through entering the lives of several elderly people. Hospice has been important in my life because it has challenged me to serve others, while simultaneously teaching me that "every day is a gift."

End-of-Life Care: A Personal Reflection

Brenda Corace

Former Teen Volunteer, The Hospice of the Florida Suncoast

[Citation: Corace, B. End-of-Life Care: A Personal Reflection. Innovations in End-of-Life Care, 2000;2(4), www.edc.org/lastacts]

Holding the hand of a dying elderly person as he or she peacefully drifts away can change the way someone looks at the world, especially a teenager. I never imagined that, at sixteen, I would share moments like this with terminally ill patients as a hospice volunteer. Little did I know at the time that my experience as a hospice volunteer would teach me so much about life and death, and so strongly influence my perspective on living.

Both of my grandfathers died in hospice care when I was a freshman in high school. Until that year, I was unfamiliar with hospice. I saw the care the hospice nurses gave my grandfathers, allowing them to die peacefully in their homes with family and friends around them. This was my first impression of hospice care, and it had a profound effect on me. Later that year, I decided to become a volunteer so that I could provide the same care and comfort that my grandfathers and family received.

In my first volunteer experience with hospice, I served as a teen mentor to a twelve-year-old boy with a life-threatening illness known as tricuspid artresia. This disease made him prone to congestive heart failure and irregular heartbeats, and therefore limited his physical activity. As a teen mentor, I provided emotional support for this boy by helping him identify his other interests and by taking his mind off his illness. I visited him weekly and often assisted with homework, took him fishing, or simply talked with him about life. It was a truly incredible feeling to see him smile and to know that I made a difference in his life. Realizing that I contributed to the life of another, I gained a greater satisfaction with my own life, as well as a greater appreciation for its many gifts.

As I share in the lives of terminally ill patients, I have come to learn that the dismal portent of death often overshadows a lifetime of memories, achievements, and challenges. Instead of allowing death to impose on life, I have tried to reverse the focus of my work with hospice patients to one of celebrating life. One of the ways that I incorporated this focus into my work is through a grant I wrote called "Life, Camera, Action!" This grant started a meaningful and rewarding project that provides terminally ill hospice patients with the opportunity to share their memories, thoughts, and feelings with their families and friends on video before they pass on and their memories are lost forever.

Through conducting several of these Life Review videos, I had the opportunity to witness patients with terminal illnesses commemorate their lives on video so as to perpetuate their legacies and revel in their accomplishments. I remember one woman’s story in particular; she shared her memories of growing up in the Depression and of what life was like as she moved from place to place. She expressed to me how wonderful she thought the video project was because her grandchild, who would never get the opportunity to meet her, would be able to hear her story as a result of this special video. Her positive attitude was truly an inspiration! I also created a scrapbook for a patient suffering from AIDS. Several other students and I worked with her to compile a book of pictures and stories of her life. When we returned to present the book to her, tears were rolling down her face. She was so grateful to have a book of memories she could leave behind for her family. I have often been asked about the depressing nature of projects like these, but I always respond by explaining that each project is not a mournful or gloomy enterprise, but rather a celebration of a person’s life.

One of the greatest challenges I encountered in my work with the terminally ill was through my unique friendship with a 107-year-old hospice patient named Joe, and having that friendship come to an end in November 1998. It was indeed a challenge to grow close with Joe, knowing that our time together would be short. I overcame this challenge by focusing on Joe’s life—a century of memories, history, and accomplishments. Each time I visited with Joe I was guaranteed to learn something new, whether it was a history lesson or a lesson on life. I felt that Joe, like all terminally ill patients, should live until he died, so I brought him lunch on occasion and shared pictures with him. When the time came for Joe to pass on, it was extremely difficult to focus on life amidst oxygen machines and tube feedings, yet I continued to hold his hand through it all. On one of Joe’s last evenings, he told a friend and I that we were "the best gifts a man could ask for," and that he would never forget us. It was at that moment that the familiar hospice message, "Every day is a gift," truly touched me. From Joe, I learned to cherish this gift of life and to help other hospice patients do the same by offering my compassion during the last stages of their lives.

My hospice work continued this past year after I graduated from high school and attended the University of Virginia. I began working with the local hospice in the area to start a student hospice volunteer program at the university. We have organized an on-campus training program for interested students to become volunteers, beginning in September 2000. I have started an organization with these students called Student Hospice Volunteers, which will provide care to hospice patients and a support network for student hospice volunteers. This fall, I wrote a community service grant and received the funding to begin a project called "Living Legacies"—very much like the one I initiated at Hospice of the Florida Suncoast. The purpose of this project is to continue to celebrate the lives of terminally ill hospice patients through life review videos, journals, and scrapbooks. We are all very excited about the upcoming fall training and the "Living Legacies" project.

My hospice experiences have had a very positive impact on my life. I know that volunteering with terminally ill patients is something I will continue for the rest of my life. In fact, working with a hospice patient who had Alzheimer’s disease has also influenced my career plans to become a neuropsychologist. I look forward to including the needs and concerns of dying patients in my life’s work.