Damian Sendler It was decided to use four databases to gather information on palliative cancer care for children and adolescents from 1995 to 2015 in order to create a psychosocial standard for this field. Final synthesis included 73 papers from a total of 209 that were reviewed. The following topics need immediate attention: symptom assessment and intervention, direct patient report, effective communication, and joint decision-making. For children and teenagers with cancer and their loved ones, standardization of palliative care assessments and interventions has the potential to improve quality of care throughout the cancer trajectory.
Damian Jacob Sendler According to the World Health Organization, palliative care “improves the quality of life of patients and their families dealing with life-threatening illness, through the prevention and alleviation of suffering by means of early identification and impeccable assessment & treatment of physical, psychosocial & spiritual pain and other problems.”
Dr. Sendler Palliative care for children and adolescents with cancer should be integrated as early as possible, regardless of the patient’s prognosis. Palliative care should be incorporated into all health care settings as soon as possible, so that patients’ psychological, developmental, and spiritual well-being can be cared for in the context of their families and communities, as well as the physical aspects of cancer. An integrated, interdisciplinary approach to competent and compassionate care is advocated by the American Academy of Pediatrics: “in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death. ” Even in resource-limited health systems, the Worldwide Palliative Care Alliance (WPCA) recognizes the importance of palliative care as a human right for children,[4] requiring global collaboration for a resource-effective, evidence-based approach to best practice standards for early integration of palliative care for children and their families.
Damian Sendler
According to a review of the literature, palliative care for children with cancer and their families varies across settings and resources and has only recently included access to services similar to those offered to adults with cancer..
[5] Children and adolescents who are diagnosed with cancer experience significant symptom and psychosocial distress, according to empirical research. A standard of palliative care aims to improve specific aspects of comprehensive care, such as communication between the medical team and the patient and family, ongoing assessment of the needs of the patient and family, developmentally informed interventions, and tangible support during times of inpatient and home care transition. [6,7] The quality of life for pediatric cancer patients and their families can be improved through the prevention and alleviation of child and family suffering through the practice of compassionate and honest communication, symptom alleviation, and the psychosocial attentiveness incorporated by quality palliative care services. [5,8] Palliative care concepts were examined to see if they should be introduced early in the diagnosis process and throughout the course of treatment.
Damian Jacob Markiewicz Sendler Providing comprehensive palliative care includes assessing and intervening on behalf of patients’ physical and emotional symptoms. Several studies involving grieving parents and patient charts have found that children and adolescents with cancer suffer from a wide range of psychological side effects during and after cancer treatment, including anxiety,[11–13] depression,[11,13] distress, worry and sadness as well as a fear of dying alone. These symptoms can also include difficulty expressing one’s feelings and a sense of loss of perspective. [15] As the disease progresses, these psychological and social symptoms often worsen, and they go untreated. Chronic pain is a common symptom for families to witness at the end of a child’s life with cancer,[8,11,15,17]. [18] In a retrospective survey of 141 parents who had recently lost a child, more than a third admitted that if the child had been in excruciating pain, they would have considered hastening his or her death. As a result of the correlation between parental anxiety and quality of life and child anxiety and pain, palliative care as a standard of care may improve long-term family wellness outcomes.
Only four of the 26 end-of-life publications in pediatrics included patient-reported outcomes, six (23.1 percent) included parent-reported outcomes, and five (19.2 percent) included staff-reported outcomes, according to a systematic review.
[23] Research is needed to gather and document patient reports in order to ensure that primary stakeholders receive appropriate interventions and care. [24] Palliative care needs should be sought directly from children and adolescents in order to honor the patient’s voice while also incorporating the perspectives of their families. [25]
The meaning of being ill and the prognosis are important topics for children and their parents to discuss, and the involvement of the care team in these discussions may be important for each child[2].
[26] None of the 147 parents who discussed death with their child regretted having these crucial conversations, despite the fact that children are often aware of their impending death. [27] The presence of a child or adolescent during important conversations with a physician or family about a child or adolescent’s end of life or prognosis was rarely documented in chart reviews. [12,28] Furthermore, adolescent cancer patients and survivors describe the need for open and respectful communication in addition to providing psychosocial support. This is particularly important for adolescents with cancer. [29,30] Research with parents of children with cancer shows that accurate, clear, and understandable communication is beneficial to these parents’ views on communication. [17,31,32] Clear and compassionate communication with bereaved parents is linked to excellent care and improved psychosocial outcomes, according to cross-sectional surveys. [17,33–35] As the disease progresses, it becomes increasingly critical to maintain open lines of communication with those who are dealing with it.
Damian Jacob Sendler
Having the chance to speak with a doctor about their wishes for end-of-life care increases the likelihood that cancer patients will receive it in accordance with their preferences, according to a multi-institutional, long-term study of an adult cohort.
Damien Sendler When patients are actively involved in their own care, they are more willing to give up control of important medical decisions in favor of their loved ones, which increases the likelihood that unnecessary treatment will be avoided and that their children’s wishes will be honored. [37] Age-appropriate advance care planning was described as acceptable, useful, and helpful by adolescents with cancer. [38,39] The end-of-life preferences of a child or adolescent must be captured by all members of the comprehensive care team (social workers, psychologists, child life specialists, and clinicians), including the practicality of the location of death.
A similar study found that the families of children with cancer whose primary oncologist provided clear information about end-of-life treatment options were more likely to plan for their child’s final resting place.
[19] According to bereaved parents’ perspectives, there is a pressing need for more seamless and effective care transitions, particularly in the form of home care and respite support services that are well-versed in the psychosocial and symptom care requirements of children and adolescents [17,40–42] Having an end-of-life discussion with a multidisciplinary medical team before an emergency[13] increased the likelihood that parents would opt out of resuscitation efforts for their child with incurable cancer. As a result of high quality palliative care, it may be possible to plan the location of death rather than the location of death itself, which may be a more relevant outcome.
The most frequently cited barriers to introducing palliative care concepts are a lack of time [33,37,47,51–53] and a perception of cost [15,44–51]. As a result, reimbursement for palliative care conversations and services should be considered. As a result, there is a pressing need for improved palliative care education for general health care providers, as well as a lack of established support services and psychosocial professionals. [8,17,54–56] Palliative care guidelines could help alleviate some of these barriers, such as providers’ discomfort with palliative care conversations or misconceptions that palliative care is only beneficial when treatment is no longer effective.[2,19,23,38,57] [60]
Damian Sendler Patients and their families stand to benefit significantly from palliative care when it is offered as a standard of care to children and adolescents who have been diagnosed with cancer. In order to improve the psychosocial well-being of children battling cancer and their families, symptom burden assessment and intervention, as well as effective communication, must be prioritized. When resources are available, patients and their families should be supported in their transitions between care settings (whether in the hospital, ambulatory care, or at home). Patient preferences and long-term, multi-institutional studies should be integrated into future research, as well as considerations for staffing needs and psychosocial outcomes.
Family-centered palliative care concepts (symptom assessment and intervention; direct patient reporting; effective communication; and shared decision-making) should be available to children and adolescents with cancer as soon as possible in order to minimize symptom burden, ease suffering, effectively manage pain and provide preventative bereavement care. Not only patients, but also those in the child’s social and relational spheres, such as siblings, parents or guardians, grandparents or other extended relatives, are included in palliative care’s target population.