Relieving total pain in an adolescent: a case report

A 15-year-old Thai male who had recurrent T-cell lymphoma. He was diagnosed with the disease 3 years earlier, and treated with 6 cycles of chemotherapy. Regular follow-ups showed no signs of recurrence until 1 week before admission when he developed progressive dyspnoea. Chest X-ray at a provincial hospital showed massive right lung pleural effusion and an anterior mediastinal mass was detected. His GP referred him to a tertiary level hospital for further care. Upon admission, hospital regulations stated that a patient who is over 15 years of age must be admitted to an adult ward; hence he was transferred to an internal medicine ward. During his first night, he witnessed the death of a patient who had a cardiac arrest. The nightshift team performed CPR, intubation, and various other lifesaving procedures. The boy witnessed all of this, and was deeply traumatised. After which, he had a complete psychotic breakdown and did not stop screaming until his doctor sedated him. When he woke up in the night, he continued screaming; thus he needed to be sedated again, and nurses had to put a curtain around his bed, blocking him off from the rest of the ward. At the time of his palliative care team consultation, the patient was restless with a palliative performance scale (PPS) of 40, and had suicidal tendencies. He kept screaming whenever he woke up, calling constantly for his mother to end his misery and yelling, “I don’t belong in this place”. Further history taking revealed that he had every aspect of total pain: physical, emotional, social, and spiritual.

Total pain is a concept that was coined by Dame Cicely Saunders. It is composed of the physical, psychological, and social, with a spiritual component [2]. Any individual may experience pain in each domain with different severity [9]. Even though there is a gold standard for pain control, i.e., the WHO analgesic ladder, it focuses mainly on the physical aspect of pain, thus further evaluation of the other domains may be needed [7, 10]. Even though there are several tools for the psychological and spiritual pain, healthcare providers usually underutilise it thus making it harder to assess patients comprehensively [11]. This case report is an example of the manifestation of total pain in an adolescent, which is a transitional stage of life with complicated needs [12]. Studies show that young patients, especially adolescents, require different care than other age groups [5, 6, 12–14]. Since their illness usually disrupts their normal physical and psychological development, most of the time adolescents’ concerns are psychosocial: fear of social isolation from their peers [15], maintaining their self-image [16], and the attainment of independence [13, 14]. However, these needs, especially from the psychosocial aspect, are usually under met [7]. Their spirituality is frequently overlooked as well [10]. Key developments in comprehensive care in adolescents consist of understanding adolescents’ unique features and also flexibility of care [6]. Other keys are adequate symptom control [17] and thorough and honest discussions concerning medical-decision making [18]. As for the patients’ autonomy, while there are ongoing debates between balancing the teenager’s autonomy with their parents’, the most important consideration is rather that key members are involved in the discussion and that joint decision-making is undertaken [12, 13, 19]. Friends also have a huge impact on their care since one of the unique types of pain for adolescents with cancer is the need for normality: patients simply want to blend back in with friends, just like before their illness [5, 15]. Finally, according to The United Nations Convention on the Rights of the Child (CRC), a child is still considered a child until he/she reaches 18 years of age [20]. Thus, adolescents, even though they are different than children and adults, should not be treated in adult care as in this case. This case report emphasises the importance of total pain assessment in order to relieve the different aspects of pain in adolescents who require different care from other age groups. It also highlights the medical decision-making process in adolescents, flexibility of care, and the importance of social support from peers in helping adolescents get through their ordeals.