Addressing 10 Myths About Pediatric Palliative Care.

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions. Unfortunately, despite the well-identified need for PPC services across pediatric specialties, multiple misconceptions persist. Common myths about palliative care are identified and deconstructed in light of the most recent evidenced-based references in the field to provide guidance to healthcare providers to address these. PPC is often associated with end-of-life care, loss of hope, and cancer. Some healthcare providers and parents also believe that information like diagnosis should be withheld from children for their emotional protection. These examples of misconceptions hinder the integration of pediatric palliative care and its additional layer of support and clinical expertise. PPC providers have advanced communication skills, are able to instill hope in the face of uncertainty, are trained to initiate and implement individualized pain and symptom management plans, and understand how to improve the quality of life in children with serious illnesses. Improved awareness about the scope of PPC is needed to ensure that children benefit from the maximum expertise and support throughout their complex health trajectories.

The Use of Ketamine for Malignant and Nonmalignant Chronic Pain in Children: A Review of Current Evidence.

Chronic pain in children continues to pose significant challenges. The pharmacological approach most often revolves around trials and errors, expert opinions, and extrapolation of adult study findings. Ketamine is one of the agents used for chronic pain, especially with a neuropathic component. This article aims to provide an overview of its properties and highlight the current evidence for its use in malignant and nonmalignant chronic pain management. A search on the use of ketamine for chronic pain in children up to 18 years of age covering the period from January 1, 2000, to December 14, 2022, was performed through PubMed, Cochrane Library, EBSCO, EBM Review, Wiley, BMJ, Web of Science, Google Scholar, and the Saudi Digital Library. 218 articles were found and 42 underwent full review. Currently, the evidence about ketamine efficacity and safety for chronic pain management is at best of moderate to low quality. The heterogeinity of ketamine infusion protocols and frequent concomitant use of other analgesics make it difficult to draw robust conclusions. The long-term effect of prolonged usage also remains a concern. Nevertheless, with careful monitoring, the drug may be a reasonable choice for malignant and nonmalignant pain management in selected cases, especially for refractory pain not responding to conventional approaches.

Physicians' Knowledge, Attitudes, and Perception Toward Pediatric Palliative Care in Saudi Arabia: A National Exploratory Survey.

Background: Pediatric palliative care (PPC) helps maintain the quality of life for both children and their families. It has been identified as an important goal within the global health agenda. In Saudi Arabia, the discipline remains in its infancy, as illustrated by the absence of PPC programs in academic and health care institutions. Aim: The aim was to conduct a pilot study assessing physicians' knowledge, attitudes, and perceptions toward PPC. Method: Data were gathered through a self-administered questionnaire sent to physicians working in Saudi Arabia. Results: One hundred twelve completed the survey (male 54.2%, n = 50). A total of 40.8% (n = 42) had 20 years or more of experience, 42.9% (n = 48) were from the hematology-oncology specialty, and 68.5% (n = 74) received no training in PPC. Half suggested that children should be informed of their condition but mostly when reaching 12 or 15 years of age. Various physicians reported that the most appropriate time to discuss a transition to palliative care goals is when diagnosing an incurable condition or when despite all efforts, a condition continues to progress and death is expected. Conclusion: Multiple gaps were identified. PPC basic concepts should be included in the formal medical curriculum (e.g., pain management, communication, and ethical considerations at the end of life). There is also a significant need to develop further both primary and specialized palliative care.

Implementing a nurse-led paediatric palliative care service.

BACKGROUND: Children with life-limiting illnesses are living longer. They have complex care needs and require specialised knowledge and skills, yet paediatric palliative care is still at its infancy in most settings worldwide. AIMS: To describe the process of implementing a nurse-led paediatric palliative care programme in a large tertiary hospital in Saudi Arabia. METHODS: The steps that led to the implementation of this new nurse-led programme will be described through a 1-year analysis of collected data. FINDINGS: A total of 107 children received services from the paediatric palliative care programme for over one year, with cancer being the predominant diagnosis (n=71, 66.3%). More than half of the children had a do not attempt resuscitation (DNAR) order (n=54, 50.5%). The most frequently encountered issues were the family's difficulty in coping with the disease (n=80, 74.7%) and a child's uncontrolled pain (n=72, 67.3%). The most frequent interventions were family support and counselling (n=71, 66.3%), family education about symptom management (n=69, 64,5%) and adjusted analgesics (n=60, 56%). Children in the terminal stage of their disease had significantly more issues. CONCLUSION: Effective paediatric palliative care can be successfully implemented in a healthcare setting even when resources are limited. A nurse-led service was found to be a viable option for the delivery of palliative care to children with serious illnesses.

Deaths in the Emergency Department: An Assessment of Patient's End-of-Life Trajectory and Quality of Care.

BACKGROUND: A considerable proportion of deaths occur in the emergency department (ED), and yet a palliative care approach is not well integrated. End-of-life patients often either receive invasive care, or their care is neglected due to being perceived as not being "acutely" ill. While a small proportion of these deaths are of an unpredictable nature, most have identifiable dying trajectories: (a) advanced cancer, (b) organ failure, (c) chronic frailty, and (d) sudden death. AIMS: This study aims (1) to determine the incidence, nature and illness trajectory of deaths in the ED; (2) to examine to which extent end of life discussions took place; (3) to analyze the aggressiveness of the care; and (4) to determine if palliative care services were being consulted. METHODS: This retrospective study was conducted in a large tertiary hospital and cancer center in Saudi Arabia over a 1 year period. Data collection included demographics, clinical presentation, end-of-life care, and palliative care involvement. RESULTS: Our study included 103 patients. Cancer was the main diagnosis (45.7%). Deaths were related to advanced cancer (45.6%), followed by organ failure (29.1%), sudden death (13.6%), and chronic frailty (11.7%,). 35.9% had a documented Do-Not-Attempt-Resuscitation (DNAR) status prior to admission. 51.5% received aggressive treatments. Palliative care was consulted for 19.4% of patients, among which 50% of referrals occurred 1 day prior to death. CONCLUSIONS: End-of-life care discussions tend to occur late in the disease trajectory; a number of patients are subjected to aggressive treatments, and palliative care services remain underutilized. An early, integrated and collaborative approach is warranted to address the challenges of end of life care.

Palliative sedation to alleviate existential suffering at end-of-life: insight into a controversial practice.

All terminally ill individuals should have access to palliative care that gives equal importance to all aspects of suffering. In spite of all the efforts made, some of these individuals will, unfortunately, be left with suffering described as "refractory". It would appear that palliative sedation then becomes an option. There is much controversy around this practice, especially when it is used to alleviate suffering of a more existential nature. This article aims first to define the practice of palliative sedation, second to explore the concept of existential suffering in palliative care and third to address the implications for nursing practice.