Being diagnosed with cancer in adolescence generally has important emotional consequences: adolescent cancer patients need to be seen as special cases with particular medical and psychosocial needs. This is especially true when a young patient is faced with a progressive, incurable disease. Herein, we report the story of a 17-year-old girl with a metastatic refractory soft tissue sarcoma who tells her dream to the psychologist of the ward. Telling this narrative is the opportunity to discuss the complex topic of how adolescent cancer patients adapt to the terminal stage of their disease; for example, the patient needs to talk to someone about their fear of dying; the healthcare operators need to be able properly listen and communicate; the patient’s trust in the future despite their clinical condition; the necessity to leave space for hope; the useful role of the imagination sphere; the issue of whether and how to tell a person who is terminally ill the truth about their condition.
Post author correction
Article Type: EDITORIAL
AuthorsLaura Veneroni, Andrea Ferrari, Tullio Proserpio, Elena Pagani Bagliacca, Marta Podda, Maura Massimino, Carlo Alfredo Clerici
- • Accepted on 02/11/2017
- • Available online on 21/11/2017
This article is available as full text PDF.
Lucia is 17-year-old patient who has a soft tissue sarcoma with metastases to the lung, which is progressing and is refractory to several lines of therapy. She tells the psychologist who works with adolescents on the ward: “I had a strange dream. I haven’t spoken about it to anyone, not even my mum or my best friend. I dreamt that I was at my 18th birthday party [a party that Lucia had been organizing for some time]. It was a fantastic party. I was dressed like a princess, in pale blue and white. Everyone was there, my parents, my brothers and sisters, my boyfriend, and all my friends. You doctors and nurses were there too, and all the other patients. Then, at some point I saw Claudia [a girl who had been with Lucia during numerous hospitalizations and many Youth Project (1-2-3) activities, who had died not long beforehand]. Claudia looked lovely, but she was thin. I could see she was ill and she couldn’t talk. In my dream, I knew perfectly well that Claudia was dead, that she couldn’t be there. But this didn’t worry me. At some point, Claudia got into a hot-air balloon that was there, still attached to the ground, but that I knew would soon fly away. Her parents asked me if I could go with her because they didn’t want her to leave alone. I really didn’t want to leave the party, which was still in full swing. I was having a great time, and everyone was there for me. But, at the same time, I didn’t want to leave Claudia alone. So I decided to go with her in the balloon. At some point, the balloon became detached from the ground and I began to rise up into the sky, higher and higher. I could see the party and my friends and family from above. I wasn’t frightened, not at all, but I was very sorry to leave the people and the party behind. I already felt the loss. There was so much melancholy in my heart. I was sad, not frightened.”
Lucia then said to the psychologist: “What do you think this dream means? To begin with, I was afraid it might mean I’m about to die. Then I realized that’s not it. There are still lots of therapies to try and I’ve got lots of things to do: my 18th birthday party, a trip to the Caribbean, university. I think this dream meant to say that I can feel free to fly, to become light, freed of the weight of this difficult time, and even free to choose.”
Lucia’s dream introduces the complex topic of how adolescent cancer patients adapt to the terminal stage of their disease. This topic is too vast to be covered in a few lines, but Lucia’s account offers some very useful food for thought. It reminds us that adolescents who are ill need to be able to talk to someone about their fear of dying, their nostalgia for things they see moving farther and farther from their grasp just at an age that should be full of promise (when their life is “in full swing”). If such thoughts are experienced alone, they become intolerable, but it is not easy to talk about them, not even with loved ones (as Lucia said at the start of her story). These thoughts need to be shared with someone who is not afraid of them.
Healthcare operators must be willing and know how to listen. The difficulty lies in knowing how to respond to an adolescent with terminal cancer. There is no real consensus on the best approach to use in daily clinical practice; there are only a few theoretical considerations (4). Taking the cue from Lucia’s words, this brief paper aims to focus for a moment on this issue.
It may not necessarily be up to healthcare operators to confirm a patient’s fear of dying. In fact, that was not what Lucia was literally asking the psychologist to do. She was asking for help in entering and exiting from this thought, and for comfort, so that she could avoid succumbing to anguish, and could carry on living, day after day. The psychologist and physician can suspend judgment, and refrain from any interpretation (of the dream in Lucia’s case) that might bring too much clarity.
Daily experience with Lucia and other patients has shown that the way in which adolescent patients adapt to a situation of terminal disease may differ from adults or the elderly. Young people may often take an optimistic attitude to their clinical condition, still trusting in the future. We may sometimes wonder how adolescents in the advanced stages of cancer succeed in living a life that makes sense, and what psychological mechanisms they rely on to do so (5). Little is known about the psychological processes implemented by terminal patients to react and adapt to reality. We believe that the rational sphere is not all important. Within certain limits at least, the imagination can be a much more tolerable domain. In other words, a few illusions can have a positive effect, making reality more acceptable. As Beadle et al (6) put it: “illusory attitudes and beliefs, long recognized in psychosocial research, can be measured and appear to be an important domain contributing to the perception of quality of life in some patients with advanced cancer.” Illusory defenses can avoid the anguish induced by thoughts of dying and can prevent dissociative phenomena. Dreams (and daydreams) can help in the development of such partial illusions, enabling Lucia to organize her birthday party (which she did actually attend, dressed in pale blue and white like a princess), or plan a trip to the Caribbean (that she will never take). In such illusory processes, it is important to limit any efforts at interpretation or criticism of reality, opting instead for a “suspension of disbelief” (the term coined by Samuel Taylor Coleridge in 1817 to explain the need to suspend judgment in order to enjoy a work of the imagination). It is also always essential for the patient–physician relationship, and for communication, to leave space for hope (7).
The issue of whether and how to tell a person who is terminally ill the truth about their condition is another topic that can hardly be covered in a few lines. This is especially true in the case of adolescent patients who are not easy to manage, according to the standardized practices adopted for adults (e.g., the “end of life discussion”) (8). The maturity, sensitivity, and capacity for discernment, and how much a given individual wants to know, can vary considerably from one patient to another of adolescent age. However, we are convinced that all such communications must always leave space for hope. Hope can sustain patients during the course of their treatment, even when a cure is no longer possible (9). Hope can also help patients to preserve that illusory component, which, in daily clinical experience, has revealed an important defensive role in the complex personal adaptation of an adolescent with cancer to the reality of the terminal stage of their disease.
- Veneroni, Laura [PubMed] [Google Scholar] 1, * Corresponding Author (firstname.lastname@example.org)
- Ferrari, Andrea [PubMed] [Google Scholar] 1
- Proserpio, Tullio [PubMed] [Google Scholar] 2
- Pagani Bagliacca, Elena [PubMed] [Google Scholar] 3
- Podda, Marta [PubMed] [Google Scholar] 1
- Massimino, Maura [PubMed] [Google Scholar] 1
- Alfredo Clerici, Carlo [PubMed] [Google Scholar] 4, 5
Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan - Italy
Pastoral Care Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milan - Italy
Institute for Study and Research on Psychic Disorders (ISeRDiP), Milan - Italy
Clinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan - Italy
Department of Oncology and Hematology, University of Milan, Milan - Italy