The arrival of the end of life brings with it an impact and a process that is difficult to understand, as we place our feelings as human beings before this reality, denying that it is just another stage in the evolutionary cycle of life. Talking about death frightens, confuses and distresses, generating pain and suffering for those who are going through this process.
In palliative care (PC), talking to children and adolescents about the end of life is often a difficult task, because we are faced with a panorama of myths, taboos and misinformation that distort the fundamental aspects so that children can understand this process without fear and suffering.
But what is suffering, how can we understand this concept? According to Cassell, suffering is “a state of severe distress, associated with events that threaten integrity (keeping a person intact). Suffering demands self-awareness, involves the emotions, has effects on personal relationships, and has an impact on the body”.
It is important to mention that suffering appears in both the family and the patient after a series of external traumatic events and/or occurrences, which threaten their integrity, involving emotions and thus interpersonal relationships. For this reason, the role of the psychologist in palliative care represents a fundamental role in its approach, since various aspects have to be taken into account for psychological intervention with children, considering their cognitive development, emotions and thoughts derived from the illness, the socio-cultural environment, family dynamics, religion and spirituality in order to organise a functional intervention plan, without leaving aside the work of the multidisciplinary team.
As we know, PCs aim to improve the patient’s quality of life by providing symptom relief and comfort, integrating psychological and spiritual aspects into the end-of-life process, providing coping tools, thus reducing suffering within the family system and improving adaptation to this new life experience.
Every patient must receive comprehensive quality care; for this reason the emotional and the physical cannot be separated, as the human being has several dimensions such as biological, social, psychological, spiritual and moral. When a child becomes ill, these dimensions are altered to a great extent, with changes in functions and roles in the socio-family structure, emotional impact due to the diagnosis, isolation, affected economic aspect, changes that are aggravated by a life-threatening and/or life-limiting diagnosis, as both the child and the family suffer an existential life crisis: a life ends and a death arrives.
The approach to pain and suffering in the family nucleus requires an individualised plan, as each clinical case is different in all aspects that make up total pain: emotional, spiritual, medical and social. For this reason, the suffering in each of the family members responds and manifests itself in various cognitive and behavioural alterations. Every illness puts the life of every being at risk, even more so if it is a life-threatening illness.
Clinical case
In May 2022, Arely, aged 16, was admitted to the PC service with a diagnosis of high-risk pre-b acute lymphoblastic leukaemia, failure to induce remission and a history of relapse to bone marrow, not a candidate for bone marrow transplant. The PC team carries out the assessment and performs the intervention of the case. During the first approach by the psychologist, the patient is hostile, with limited verbal language, with symptoms of dysthymia and anxiety as a result of traumatic events that have marked her life.
Social situation
The patient and her older brother were raised by adoptive parents, who also had biological children. During the interview with adoptive sisters, it was reported that Arely and her brother were abandoned by the biological mother, not knowing the whereabouts of the biological mother, even considering that the mother was deceased. Later, the brother at the age of 15 decided to leave the adoptive family and create his own, leaving Arely with the adoptive family. On the other hand, prior to the patient’s diagnosis of leukaemia, the adoptive mother died, an irrecoverable loss for Arely. The adoptive father was an alcoholic and a generator of violence. The most important support for the patient, even with all that she had lived through, was her adoptive family, and Arely even reported that she had a good relationship with her sisters and supported them in a business they had. She did not continue to attend school because of her frequent admissions.
Intervention plan
During the first intervention, we were empathetic in order to support her with this suffering. The intervention plan was carried out in several sessions, trying to cover various situations, one of them being with the adoptive sisters, who asked not to mention the poor prognosis of the condition and the risk of death, as they considered that Arely’s suffering had been great since the abandonment of the biological mother. Given the above, they maintained the conspiracy of silence, a situation that also affected the family dynamics, as Arely could not express her feelings and/or emotions, despite the great affection she had for this family.
In each session Arely referred to “feeling well”, however, her countenance reflected sadness, which we related to the intra-hospital environment, since, in the visiting consultations, her mood improved significantly. Arely was aware that she was suffering from an illness which was difficult to cope with due to the different symptoms she presented; however, she avoided the bad prognosis. On the other hand, she sensed that the end of her life was coming, mentioning to the sisters the following: “Don’t worry about me, everything will be fine, I will take care of you from heaven”, a message that affected the sisters emotionally because they were aware that the disease could worsen until death.
In view of the above, psychoeducation was provided tailored to the needs of the family, as the patient was at an advanced stage of the disease. On the other hand, training was provided in assertive communication skills to improve their relationship with the patient. The importance of telling the truth about everything related to the disease was mentioned, since, at sixteen years of age, she could understand what was happening, as well as having the right to make decisions. Throughout each session, coping and decision-making tools were provided to give the patient emotional support and a support network.
During the telephone interventions, her sisters reported increasing physical fatigue, although she was sometimes able to have a conversation with close family members. On the other hand, Arely expressed the desire to see her biological brother and to talk about the abandonment she suffered from him, the lack she suffered from him and how difficult it was to cope with the disease, a desire that was fulfilled and that she took advantage of to express her emotions and make peace with him, who accompanied her from now on until the last days of her life.
Below is an outline that represents the aspects to be addressed in PC, as well as a breakdown of the most important points to consider, in order to carry out a comprehensive approach to the patient and family. This outline was constructed with bibliographic information, as well as with the aspects that are dealt with in the Palliative Care service of the Hospital for the Palliative Care of the Hospital para el Niño Poblano.
Conclusion
According to the reported case and the suffering identified, it was considered important to work with forgiveness and spirituality in the final phase of life in an adolescent girl. It can be difficult to understand how a being with so few years of life had to live through several losses, both definitive and temporary, situations that generated a great deal of suffering. However, the patient became more resilient due to the lessons of life and despite the enormous lack of affection she suffered, she was able to forgive in order to transcend and die more peacefully.
This aricle was published with permission form Notas Paliativas www.paliativossinfronteras.org.
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