Spirituality and Sustaining Hope in Adolescents with Cancer: The Patients' View

Abstract

Purpose:

The trauma of the diagnosis of cancer during adolescence may affect the young people's spiritual sphere. Projects aiming to the global care of adolescents with cancer should consider also their spiritual needs: at our center, the dedicated multidisciplinary team of professionals includes a chaplain with a specific training. This article describes, throughout the patients' dialogs, how a chaplain can help patients to give voice to their emotions and thoughts about their sense of life and illness.

Methods:

From January 2016 to December 2017, 33 adolescent patients with solid tumors had from 2 to 12 one-to-one talks with the chaplain. We selected six specific clinical cases in which some important topics were discussed between the chaplain and the patients.

Results:

Patients' own voices were reported to describe some specific spiritual issues, particularly as regards how spirituality could sustain them in their need to continue to hope. Examples of specific questions during talks were as follows: “Why doesn't God do something?”; “What is the point of all this pain?”; “Why have I become ill? Why me?”; “What do you think will happen to me after I die?”

Conclusions:

This experience underlines the importance of the inclusion of the spiritual assistant within the multidisciplinary team dedicated to young people with cancer. The daily and constantly available presence of the chaplain in the ward, from the beginning of any treatment, can permit a good relationship with patients and help them to keep hope and move forward.

Introduction

Caring for adolescents with cancer is a challenge. The trauma of the diagnosis of cancer during such a time of transition can strongly interfere with various aspects of everyday life, involving a patient's body image, psychological well-being, quality of life, sense of freedom, and future prospects.^1,2

Experience has shown that also the young people's spiritual sphere may be affected by cancer diagnosis.³ During adolescence, in fact, individuals tend to distance themselves from their parents and the latter's beliefs and teachings, and therefore tend to change their search for the meaning of life, or, in other words, their approach to spirituality (here seen as encompassing experiential aspects, whether related to engaging in religious practices or acknowledging a general sense of peace and connectedness).^3–8

A global care of adolescents with cancer should consider also the young patients' spiritual needs. Within the Milan's Youth Project—a specific program dedicated to adolescents and young adults (up to 25 years old) with the aim to support medical themes (such as their access to treatment protocols) and to promote holistic strategies to help them retain a sense of normality in their lives,^1,9–14 the dedicated multidisciplinary team of professionals includes a chaplain. This is a Catholic priest with a specific training, that is, graduation from the Psychology Institute at the Pontificia Università Gregoriana in Rome, and Doctorate in Pastoral Health at the Pontificia Università Lateranense. The daily presence of the chaplain in the ward gives him the possibility to effectively deal with patients' and their families' need for hope, trust, and faith.^3,15–17

The demand for spiritual counseling and the model of care has been already described in previous works.^3,15–17 Here, we want to directly give voice to young people: this article describes how some patients reportedly felt—in their own words—about spiritual issues, particularly as regards how spirituality could sustain them in their need to continue to hope.

Methods

The Youth Project is developed within the Pediatric Oncology Unit of the Istituto Nazionale dei Tumori in Milan (Italy). The chaplain is daily present in the Unit. In addition to organizing normal religious procedures (e.g., celebrating mass, giving blessings, administering the sacraments on request), the chaplain makes daily visits to the Unit's ward and Outpatient Clinic or Day-hospital. He attends meetings with the psychologists on the team every day, and meetings with doctors and/or nurses twice a week. In addition, he is informally involved in the Youth Project meetings (the Youth Project team meets adolescents once or twice a week to develop artistic projects aiming to help them express themselves more freely through photography, poems, and music as a complement to the psychological support provided by a dedicated team of professionals).^9–14

The chaplain's daily presence enables him to talk to patients (as well as relatives) on a regular basis, to identify those more in need of attention or counseling, and to develop a closer relationship, especially with adolescents. He offers his spiritual support to non-Catholic patients and families too.³ The talk with the chaplain was not systematically proposed to all the adolescent patients. The referral of cases to the chaplain may follow three different paths: (i) the clinical staff (doctors or nurses) or the psychology team of the unit report to the chaplain those specific cases who may necessitate particular attention and counseling; (ii) the chaplain comes in direct contact with the patient during his daily visits to the ward and starts a relationship; (iii) the patient specifically request a talk with the chaplain.

For this study, the period from January 1, 2016 to December 31, 2017 was considered, and among the group of the various adolescent patients who had talks with the chaplain, we selected and described some specific conversations that took place. There are not specific inclusion/exclusion criteria for this study.

In the study period, 33 adolescent patients had from 2 to 12 (median 4) one-to-one talks with the chaplain. Patients aged 15–24 years; 18 were female and 15 male. All were affected by solid tumors and were treated at our Pediatric Oncology Unit: 29 patients were under curative intent treatment and 4 under palliative treatment.

All the patients taking part to the study were also involved in the Youth Project.

All the patients who had talks with the chaplain were also followed during the same period by the psychologists of the team.

Conversations between patients and the chaplain were not registered. Detailed notes of every talk were taken by the chaplain after each conversation. The conversations we reported for the current study were pieced together retrospectively.

The study was approved by the Research Ethical Committee of the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy (code 150053 of the Italian National Observatory on Clinical Trials). All the patients (or parents/guardians in case of minors) signed a written informed consent to the involvement in this work.

Results

Case 1

“Why doesn't God do something? Why do I still have to suffer? I've had enough!,” said a tearful Maria, who had undergone a limb surgery only months after losing her mother to cancer. Maria was an 18-year-old under curative treatment for a soft tissue sarcoma of the thigh. She asked to talk with the chaplain after knowing him during a supportive meeting of the Youth Project (for a music project). At her question, the chaplain answered, “I don't know why. All I can do is come and see you and, if you wish, you can share your experience with me. We can try to talk about it together. We won't find answers, but we may find possible interpretations.”

Case 2

Pietro is a 19-year-old patient who regularly meets with the chaplain. He is under first line treatment for a medulloblastoma. He first met the chaplain during one of his visit to the ward. “I'm not a believer, you know, but talking to you makes me feel better. It helps for me to be able to speak to someone who knows how to listen. I don't want prepackaged answers for the questions I feel swelling up inside me: what is the point of all this pain, suffering, and disease? Not just mine, but that of all the other children and young people I see here in the ward too. What really makes me angry is that I keep hearing the same old answers.”

It is rarely possible to answer our young patients' more intimate questions, but it is still important to be there, and listening is an essential part of spiritual support. It is fundamentally important for chaplains or similar figures to receive appropriate training, not only on theological matters, but also and especially on the relational aspects; and they need an adequate understanding of the medical issues too. Then, combining their specific training with their daily work as part of the care-providing team on the ward, spiritual assistants can genuinely contribute to patient care, sustaining patients' hope in the process.^18,19

Case 3

Experience has shown that, without appropriate training, spiritual figures may unwittingly interfere with an already complicated care process.^19,20 When Elisabetta (18 years old, under curative for a soft tissue sarcomas) told the psychologist on the team that she often thought about death, she was advised to speak to the chaplain. Elisabetta was happy to have the opportunity to talk with him. She told the chaplain, “I no longer go to Mass, I don't believe any more. I did once, then everything changed after my disease. I was 16 years old and I asked my parish priest, who I had always trusted, ‘Why have I become ill? Why me?’ He said, ‘You are being put to the test’. His answer was unacceptable, a punch in the stomach. I was terribly confused, very afraid, and very hopeful, all at once. I needed to talk, to try and understand, but if this was all the help that religion had to offer, there was no longer any point in believing.”

Several months later, after further exchanges with the chaplain on the Youth Project, Elisabetta told him: “You live here in the hospital. You know what we're going through. Talking to you gives me strength, and it has made me reconsider my whole story, including how I view my faith.”

Case 4

Taking the time to develop a trusting relationship over the course of several meetings can help adolescents discuss issues they would otherwise have difficulty voicing. Chiara, a 16-year-old with an osteosarcoma, in further progression after various course of chemotherapy and surgeries, asked to talk with the chaplain during the first line of therapy. Initially, she wanted to talk with him about her relation with parents, that is, dejection due to the persistent dependence on them, but also sense of guilt for mistreating parents.

After treatment failures, she was always worried and sad. One day she managed to talk to the chaplain about her fear of dying, something she had never previously had the strength to mention to anyone else, not even her parents or her best friend. “I'm scared of dying. It's not fair, I'm young,” she told the chaplain. Then she asked, “Are there lots of patients who tell you that?” The chaplain answered, “No, not many, which goes to show how brave you are. Being afraid of dying is normal, you know.” The girl remained in silence for a moment before saying: “I don't know if heaven exists. How can I believe in it?.”

Chiara and the chaplain had several meetings, often discussing the topic of death. The priest never tried to convince Chiara to believe in God or heaven, but was always willing to listen to her voice her doubts. He explained his idea of faith, but also how cancer (and the terminal stages of the disease) can be experienced with or without faith. Having the chance to talk about it helped the girl to go toward her death with a greater degree of serenity.

Case 5

Another experience from which many members of the staff on the Youth Project learned a great deal concerns the story of Veronica, a 17-year-old with a sarcoma of the skull base. While receiving treatment she had bonded well with the medical team, and especially with the chaplain. She had regular meetings with him right from the start (even when her chances of cure seemed to be good).

When her disease relapsed, and proved unresponsive to further therapy, Veronica asked to be told all about it in detail. She was confused at first (“Why do they keep giving me treatments but I always get worse?”), then angry (“I can't believe there's no cure for me!”), and afraid (“I don't want to die!”). With the support of her family and a concerted effort on the part of the whole health care team, she came to accept her fate. She asked the chaplain, “What do you think will happen to me after I die? What happens when your eyes close for the last time?”

One evening, well aware of her imminent death, Veronica showed remarkable lucidity and courage, when she asked all the doctors on the ward to come to her bedside and she thanked them for all their efforts. “Thank you anyway,” she said, “even if you haven't been successful. You're the best doctors in the world. I know you've done everything you could.” It was Veronica who comforted the medical team. She could see the powerlessness of defeat in their eyes, and the emotional difficulty of facing a young girl who knew she was dying. “I'm fine, doctor, seriously. Don't pull that face.” Turning to the chaplain (who she had spoken to not long before), Veronica added, “I die with a smile, thinking of the Pope's smile.”

Case 6

Paola, a 17-year-old girl with Hodgkin's lymphoma, met the chaplain during the Youth Project meetings, they bonded over a common love for the mountains, though she seemed to have a lot of difficulty bonding with the other patients. After a few meetings they started having private sessions; during one of these one-to-ones Paola voiced her thoughts about the disease and how she was dealing with it: “I don't think God would want anyone to become ill, nor would he choose those stronger to battle this or any other fight.”

During her meeting with the chaplain, the girl explained how she had decided to “say thank you (to God) everyday for at least three pretty things happening, even when the day was terrible, and choose (maximum) three things, that made that day horrible, that I would hope to be able to improve the following day.” She explained how this helped her in hoping that even the day after would have something to look up to and not to concentrate only on the negative aspects (e.g., losing school, being sick, having chemotherapy).

After diagnosis, Paola was very angry for what was happening to her, establishing this daily ritual with her mother, enabled her to concentrate on the positive things “I think that as time passed I got used to looking for the good things that were happening, and it was easier to concentrate on those. The first days I only saw the negative stuff that was happening and finding three nice things occurred during the day was very difficult, but then I became better at it. It made me feel like, even though I couldn't control what was happening to me, I could decide what would matter most of my day.” It also helped develop a very strong relationship with her mother and start a personal dialog with her own image of a superior entity. The chaplain suggested she might share these thoughts with the others during a Youth Project meeting; even though she was reluctant at first, she decided to tell everyone about her coping strategy. Paola later thanked the chaplain because she felt relieved at being able to share her thoughts, and this helped her in bonding with the others.

Discussion

The aim of this work is to illustrate, throughout the patients' voices, how a chaplain can contribute to the daily living experience of adolescents with cancer, not just as a spiritual assistant but also as an adult willing and able to listen to their questions and share their views.^21,22 The goal of such a work is to support the inclusion of the spiritual assistant within the multidisciplinary team taking care of young people with cancer.

Our experience and our model of care underlines how it is important to distinguish the chaplain from the idea of imminent death (last rites), as this makes families and patients less likely to seek his support.¹⁸ That is why the chaplain should be involved right from the beginning of any treatment, and seen as an integral part of the hospital staff. The chaplain's role should be seen as a constantly available form of support throughout a patient's illness and treatment.³

Giving adolescent patients a chance to meet the chaplain in informal settings, such as during a Youth Project meeting, enables them to see him not just as a formal spiritual figure, but also as a counselor, someone easy to talk to. The chaplain's job is to blend in with the everyday life of the ward and the patients, helping to detect issues and complementing the work of the psychological support team. Meeting the spiritual counselor as a member of the multidisciplinary team managing a patient's health makes it easier for patients and families to accept the help he can offer.^3,23

In principle, it is possible that patients refuse to talk with the chaplain (and this can happen in particular for adolescent patients). However, this approach should limit this eventuality, and in our experience the refusal to talk with the chaplain seems a very rare situation.

The motives for adolescents requesting spiritual support may partially overlap with the reasons behind request to see a psychologist³ (e.g., the meaning of illness, the sense of guilt, concerns about death), but it is worth noting that a given problem may be approached by psychologists and spiritual assistants in two different ways. The two approaches may be complementary and this is a further reason to underline the need for cooperation between the scientific disciplines that focus on mental health and a more spiritual and holistic approach.²⁴

Once a good relationship has been established, the chaplain can play a crucial part in helping patients to remain hopeful about their future. This would be impossible to achieve if the chaplain were only to appear when a patient is dying, whereas his daily presence on the ward in less stressful situations enables him to play an important part in the whole care provision process.

The concept of “hope” itself is difficult to be defined. In general, in a medical sense “hope” may mean the sense of the absence of despair. However, we saw that how much cancer patients remained hopeful depended largely on how much trust they placed in their caregivers, and how much they were able to share their experience with others.¹⁶ Hope has also been found closely associated with the quality of relationships with family, friends, other patients, medical personnel, or spiritual counselors (feeling supported and loved, not feeling a burden, not feeling lonely). Hoping together, as a team, and feeling hopeful for others can improve an individual's quality of life.^16,20,25

Keeping hopeful has been found to correlate with a better tolerance of pain, a better quality of life, more positive coping mechanisms, greater resilience, and higher self-esteem. Especially when the prognosis is dismal, cancer patients tend to associate hope with religious faith and the spiritual sphere in general.^23,26 Sustaining hope and sense of life in patients at palliative stages may be extremely complex. Clinical experience shows that in these cases the adaptation to terminal disease is also related to other nonmedical issues such as psychological and ethical considerations.

A correct relationship and a balanced communication are crucial in order of maintaining a positive mental approach (and, in other words, in order of maintaining hope). In this context, it useful to underline the importance of developing areas of illusion, which may allow young patients to face the extreme distress of their reality, without removing their clinical situation.²⁷

Our experience demonstrates that a modern approach to adolescent cancer care must integrate spiritual aspects in the approach of care. If it is true that the role of the spiritual assistant or chaplain in pediatric oncology is still not standardized,¹⁷ a multidisciplinary model that really involves the spiritual counselor can better support the needs of young patients who are ill. For chaplains or spiritual counselors to have such a central role in the everyday life of patients and their families they need adequate training and professional certification. The focus should primarily be on scientific hospital work and the specific types of patients they will meet, especially when it comes to the spiritual (not only religious) needs of adolescent cancer patients and their families.^17,19

As conclusions, our experience has shown how important it is to listen to adolescents' opinions on spiritual issues. These patients are often more candid in their distinction between their religion and spiritual needs. Doctors and psychologists working with them should learn how to understand these needs and refer them to an appropriate professional, such as a chaplain.^3,17

Footnotes

Acknowledgment

The authors thank the Associazione Bianca Garavaglia for supporting the Youth Project.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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