The Nursing Dimension of Providing Palliative Care to Children and Adolescents with Cancer

Abstract

Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.

Meanings attributed by family members in pediatrics regarding their interactions with nursing professionals

“…They are suspicious about the care provided if they believe that professionals are poorly prepared or that the number of professionals providing care in the sector is insufficient (1) . In a study about the dimension of child nursing care in the hospital, it was found that nursing is based on procedures, that the interaction with children and family is tangential in the care process, and that despite the family sharing the care with the nursing staff, they are not included in the care perspective (21) . This situation only contributes to the gap between what is recommended and valued as part of the nursing profession and proper for nursing professionals, causing the family to not be heard during the child's hospitalization process, contributing to their distrust in the provided care.…”

The experience of parents living with a child with cancer at the end of life

“…Unfortunately, clinical staff are often uncomfortable discussing the impending death of a child, and they also lack knowledge regarding hospice and palliative care for children at an end-of-life (EOL) stage (Nuss, Hinds, & LaFond, 2005). Healthcare professionals also often disagree on treatment course (Chen, Chen, Lo, Lin, & Wang, 2008) and palliative care discussions and care are delayed until the later stages of EOL (Docherty, Thaxton, Allison, Barfield, & Tamburro, 2012;Ghoshal, Salins, Damani, Deodhar, & Muckaden, 2016). All of these factors add to the difficulty of providing optimal palliative care for paediatric patients.…”

Competências do enfermeiro para o cuidado paliativo na atenção domiciliar

“…The disease that limits life has impact on interpersonal relationships of patients and families, and noticing when and how making referrals to specialized help, favors the access to additional resources in order that patients and family members are able to maintain a good quality of life at the end of life. (4,11,12) The affirmations found in the competencies were recognized as knowledge and practices of nurses in palliative care. The consensus on specific competencies in the level of total agreement, points to confidence in the palliative potential of nurses because they claim to be able to anticipate and re-spond to the palliative care needs, understand their own limitations and the need to seek help for complex actions.…”

“…They reflect the autonomy, dignity, communication and relationship between patients and health care professionals, as well as the multidisciplinary approach, quality of life, position in relation to life and death, loss and grief, and public education as central elements for the assistance in palliative care. (12)(13)(14) The majority of nurses reached consensus in the level of partial agreement regarding the general competency identified as 'observe dynamic changes in the demographics of the population'. This may indicate that information about the approach of territoriality is incipient as knowledge and practice to be shared in the multidisciplinarity.…”