Adolescents with Terminal Cancer: Making Good Use of Illusions

Abstract

The terminal stage of disease in teenagers is extremely complex to manage. In this study, we share some stories of terminally ill adolescent patients who made use of illusion as a way to overcome their anguish in their final stages of illness. These experiences show how young patients can cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Illusions can serve as a resource for young patients and a potentially useful tool for medical professionals.

Introduction

Caring for adolescents with cancer is a challenge, and even more so when there is no longer any chance of recovery. The primary goal of terminally ill patient care is to focus on quality of life, but this can only be done if we understand the psychological phenomena and singular dynamics that can develop in this situation at different ages.¹ When comparing the experience of caring for adolescents (and young adults) in the terminal stages of cancer with that of older adults, it is important to emphasize their different needs. Having the chance to organize the final part of their life, their work and business projects, family relationships, or inheritance issues has a crucial role for an adult. Establishing daily goals helps these patients to retain a sense of reality that obliges them to react.² The situation may be very different for teenagers who have yet to build their lives. Alongside all the various theories on how and how much to inform young patients about the gravity of their disease, and on a patient's right to know the truth but also to leave a door open for hope, we learn from clinical practice that the terminal stage of disease in a teenager is extremely complex to manage.^3–6

In our experience, one effective way to help adolescent patients deal with the process of understanding what is happening and, in some ways, accepting their own death would be to establish a space for nurturing a partial illusion.⁷ This special space gives patients a chance to alleviate their anguish by transcending reality, not replacing it. Illusion becomes a mechanism that enables patients to use their own resources to face the present, and enjoy it as much as possible.

This work describes some clinical experiences of exploiting illusion to cope with the terminal stage of disease. This approach has demonstrated its value as a management tool for clinicians accompanying adolescent patients on their final journey.

Materials and Methods

At the Istituto Nazionale dei Tumori in Milan, Italy, adolescents (and young adults with pediatric-type tumors up to 24 years old) are treated and cared for at the Pediatric Oncology Unit, which also runs a Youth Project.^8,9 This is a multilevel project that addresses adolescent patients' nonclinical needs, providing dedicated spaces and organizing artistic projects that enable them to tell their stories, as well as promoting their inclusion in clinical trials and the optimal provision of psychosocial support.

Several dedicated professionals offer psychological support for adolescent patients in the terminal stages of cancer. They encounter these young patients at different times, and all have different roles in their lives. The first professionals to provide patients with psychological support are the medical/nursing staff: doctors and nurses are the patients' “front-line” psychologists. Then there is a team of clinical psychologists comprising three professionals, two of them specifically dedicated to teenagers. A spiritual assistant (chaplain) is also a member of the staff and a daily presence at the Pediatric Oncology Unit, involved in patients' care from the moment of their diagnosis. Finally, there is the professional figure of the dedicated youth worker for the Youth Project, who has a crucial role in accompanying patients throughout the course of their disease (treatments, hospitalizations, and outpatient visits), often becoming a sort of friend and confidant.¹⁰

For this report, we have chosen to share some stories of terminally ill adolescent patients in our care from 1 September 2017 to 1 September 2018, who made particular use of illusion as a way to overcome their fear and anguish in their final stages of their illness.

Results

During the study period, 15 patients (10 males and 5 females) 15–24 years of age were followed up in their terminal stage at our unit. Among them, 9 had bone or soft tissue sarcomas, 4 had central nervous system tumors, 1 had a lymphoma, and 1 had melanoma. They died at home in 10 cases, in a hospice in 3 cases, and in our ward in 2. Table 1 describes five cases illustrating the use of illusion to cope with the terminal stage of disease.

Table 1.

Five Experiences of Exploiting Illusion to Cope with the Terminal Stage of Disease

Case 1

Lucia is a 17-year-old girl treated for a recurrent soft tissue sarcoma. She tells the psychologist a dream she had shortly after learning of the progression of the disease in her lungs. “I dreamed I was at my 18th birthday party and I was dressed like a princess. Everybody was there: my parents, my siblings, my boyfriend, my friends, all the doctors and nurses, all the other patients, and you too. All of a sudden, I saw Claudia (an adolescent patient who had died some time before). She was beautiful, but she was thin and it was clear she was sick. I was also aware in my dream that Claudia was dead, and that she could not be there. At some point, Claudia got into a hot air balloon that was ready to be set free and fly away. Claudia's parents asked me if I could go with her, so I followed her. I really didn't want to leave the party because I was having a lot of fun and nobody had left yet, but I got in the basket with Claudia. I only wanted to go with her because I didn't want her to be alone. Then the balloon lifted off the ground and flew away, higher and higher. I watched the party from above, and people were getting further and further away. I wasn't scared, but I was very sad to leave the party and especially the people. I already missed it all. I had a lot of sadness in my heart. I was sad, not scared.” Lucia asks: “What does this dream mean, doctor? In a way I'm afraid that it means I'm going to die, but I'd rather believe it means that I can feel free to fly, to be lightweight, and in this way I can get rid of all those weights that have fallen on me in this difficult time.”

Case 2

Monica is a 16-year-old with osteosarcoma. She is a cheerful girl, always smiling with her relatives, friends, and the medical staff. She has always has a strong passion for music and the piano. Throughout her illness, she has continued to take part in concerts for amateurs, and play the organ in church whenever her strength has allowed. As her disease progresses, Monica appears very depressed, and angry: “I'm just a laboratory guinea pig!”—she says, and “I don't want to see anyone.” The clinical psychologists manage to establish communications with her on the topic of music. Monica focuses on a concert due to be held in 6 months. Talking about that concert, the songs to prepare, and the audience in the hall is the only way that enables Monica to escape from the anger and sadness increasingly occupying her days. Monica creates an illusory space where she feels well, dreams, and plays on the stage, succeeding in counteracting the anguish of death. Even the day before she dies, the girl is still smiling.

Case 3

Anna, 20 years old, has Ewing's sarcoma and a long history of illness involving numerous chemotherapy and radiotherapy regimens, and a stem cell transplant. The aggressiveness of her disease meant that it was impossible to collect ovarian tissue at diagnosis. She had always shown a lack of interest in issues of fertility, saying she only had in mind her studies, career, and getting better. Shortly after her cancer was diagnosed, Anna became engaged and began a long love story that would continue throughout her illness (two and a half years). Then her disease begins to progress. In the terminal stages, Anna serenely and light-heartedly tells the psychologist that she would like to get married and have children. She has fun thinking of names for her offspring, imagining who they will look like (“let's hope they get their hair from me”), and she talks about them as part of her potentially realistic future. The idea of children, which had always been indifferent to her and in some ways even annoying, becomes a central part of her moments of escape from reality when a need for planning and rebirth comes to life.

Case 4

Giorgio, 21 years old, is diagnosed with metastatic medulloblastoma. The therapies he has to go through are harsh, demanding long periods of hospitalization. Giorgio lost his father 3 years ago to lung cancer, and he shows a very lucid understanding of his prognosis as soon as he is diagnosed. He asks the doctors plenty of questions, and they are always collaborative. From his questions and their answers, Giorgio elaborates his own ideas and thoughts, summarized in a virtual “diary” that he publishes on social media. He narrates his illness, sharing his days, trying to convey a message every day, be it about medical matters or an encouragement and motivation to live and fight (and sometimes his reflections on really tough days). When he talks about it with the psychologist, he describes this activity as if it were a real job, a “mission” as he calls it, to make the disease known to as many people as possible, and help those who, like him, are going through a difficult time. His thought-sharing efforts intensify during the last stage of his life. Giorgio often sleeps, but as soon as he feels strong and lucid enough, he writes and publishes messages on social media that are always positive and hopeful. Two days before he dies, he publishes a photo without adding any comments, showing him in the sunshine outside his hospital room. Giorgio thus creates an illusory space where his goal is to leave something, his memories and experience, so that he can manage the reality of death and not be overwhelmed with anguish.

Case 5

Luigi, 17 years old, came to our unit to be included in a phase 1 clinical trial, after several lines of treatment for a refractory lymphoma elsewhere. Luigi had a difficult relationship with the doctors at the previous center, who never had any positive news for him, and he experienced the transfer to our unit as yet another negative event that he had to go through. He only agrees to take part in the clinical trial to please his parents. Once again, his disease does not respond to the therapy and Luigi starts to receive palliative care for pain control. Our youth worker and psychologists convince Luigi to become involved in a musical project organized by the Youth Project, together with other patients. At first, Luigi is reluctant to take part, and he is always very angry, but the Youth Project staff encourage him to write some song music and lyrics. His song (written in winter) speaks of traveling and summer, topics that help him think about the future. Luigi agrees to use his imagination in writing the song, and unexpectedly becomes enthusiastically involved in the project, writing a lot of the lyrics. To talk to other patients on the Youth Project, he often uses the group's private Facebook page. “I'll tell you about the trip I'm going to take this summer,” he writes, posting numerous detailed comments about his proposed trip to Western Canada. This time, he succeeds in establishing a rapport with the doctors at the unit, discussing about travels with them, and sharing photographs and adventures. Intriguingly, Luigi never talks about trips he would like to take, but always about a summer trip that he will take. Amazingly, he writes a page full of ideas and a detailed itinerary even on his last day.

Discussion

The purpose of this report is to describe a selection of cases illustrating how illusions can serve as a resource in young patients' complicated journey of psychological adaptation to the distressing reality of end-stage disease.

Their relationship with the present can be modulated by several psychic defense mechanisms that may sometimes have a variety of irrational features, such as illusions and fantasies that enable patients to contain their anxiety by transcending—not replacing—reality. The illusion focuses their attention on dreams that can have no place in real life, but enable them to use their resources to cope better with, and even enjoy the present. Illusion and imagination can make it easier to accept their limits (i.e., the fact of dying) by diverting their attention from impossible demands, such as a cure for their disease.¹¹ The patients' relationship with reality can be perceived in more ways than one, not necessarily all objective.

Our clinical experience shows how this mechanism can be implemented in various situations. It is important to understand how illusion works because it can be a useful tool for psychologists and medical professionals (as in Luigi's case). It is a mechanism that bears a resemblance to the concept of voluntary “suspension of disbelief,” which describes a particular attitude that induces us to ignore the inconsistencies of a situation we are experiencing. This concept, originally conceived by the English poet and philosopher Samuel Taylor Coleridge,¹² is generally used when referring to the idea of suspending our critical faculties to enjoy a work of fiction.

In young patients who are terminally ill, using illusion and imagination can help to support hope, which—by its very nature—cannot be guaranteed by logical and rational mechanisms alone.^13,14 It has sometimes been claimed that having unrealistic hopes can have a negative effect because it can interfere with compliance and proper planning for the future (inducing people to spend the time they have left in incongruous ways). While this might be true for adult patients, we believe that for adolescent patients such a stance should be tempered by consideration for the significance of hope, seen as a fundamental positive factor that can improve coping, and reduce anxiety.

Fictions and illusions are also important inasmuch as they give young patients a relatively active and creative role, as opposed to a passive state of mind. The experiences shared with our patients suggest that their illusions were never an attempt to deny death, but rather to gradually facilitate its acceptance. To support this impression, Lucia's story¹⁵ goes to show how her fantasy became the means for her to talk about death, and cope with her anguish. Terminally ill adolescents need to be able to talk to someone about their fear of dying, their nostalgia for things they see escaping their grasp more and more (the party in Lucia's dream). They need to share all these things with someone who is not afraid because the thought of death is unbearable if faced alone.

Preparing a teenager or young adult for the terminal stage of their illness is a very difficult and demanding process.¹⁶ Like adult patients, they have very complex spiritual and psychological needs to consider. They need to feel secure (and safe in the knowledge that the information they are given is correct), and that they belong (giving and receiving love). They need a chance to review their life, come to terms with the past, and leave a memory, a legacy. They need to distinguish themselves from other patients, and be accompanied to their death.¹¹ Then there are issues specific to young people, who invest a great deal in their emotional and social relationships (also online), and esthetic concerns. Sometimes they have a very personal and unrealistically optimistic view of their clinical progress.

The handful of experiences reported in this study goes to suggest the use of illusion as a possible tool to be taken in consideration in some selected cases. Our study shows how young patients could cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a kind of psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Deception can be harmful, but in this particular case, we believe that such illusions can have a positive effect—and we should learn how to make good use of them.

Footnotes

Acknowledgments

The authors wish to thank the Associazione Bianca Garavaglia Onlus.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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