COVID-19 in pediatric palliative care patients: Multicenter, retrospective cohort study.

BACKGROUND: Studies have shown the risk factors for COVID-19 severity in children, including comorbidities, but information on the infection course in children with life-limiting conditions is sparse. AIM: To describe the effect of COVID-19 on pediatric patients receiving palliative care due to life-limiting conditions. DESIGN: We conducted retrospective cohort study. The WHO Clinical Progression Scale was used to measure COVID-19 severity. SETTING/PARTICIPANTS: Seven of the 24 invited pediatric palliative care centers participated in this study. We analyzed the medical records of children under palliative care with confirmed COVID-19 (January 2020-April 2022). RESULTS: Records of 60 patients with COVID-19 aged 0.24 to 21.6 years (mean (SD); 9.8 (6.6)) were collected. The largest group of patients with COVID-19 was children with congenital malformations and chromosomal abnormalities (42%); the most common manifestation was fever (85%). Bacterial coinfection was confirmed in 17 (28%) children. Fifteen (25%) children required hospitalization, including four admitted to the Intensive Care Unit. Mild COVID-19 was identified in 44 (73%) children, moderate in 11 (18%), severe in 3 (5%), and death in 2 (3%). Six of the 20 eligible children were vaccinated against SARS-CoV-2, followed by 16 mothers and fathers. CONCLUSION: In the study population initial presentation of COVID-19 was predominantly a mild; however, the small sample size precluded definitive conclusions. For children under palliative care, we should identify if they have an advance care plan for COVID-19, such as desires for intensive care support. Further studies are needed to define the short and long-term effects of COVID-19 in children with life-limiting conditions.

Perinatal palliative care for family with prenatal diagnosis of Matthew-Wood syndrome.

Matthew-Wood syndrome (MWS) is a rare autosomal recessive disorder caused by pathogenic variants of the STRA6 gene. Several studies in the available literature comprise patients with pathogenic variants of gene STRA6 with various phenotypic expressions: from lethal forms of MWS to non-lethal anophthalmia. These reports mainly describe new pathogenic variants and phenotypic expression but do not describe medical or paramedical care for the affected families. In our case report, we describe the second case of MWS in the same family and the benefits of including the patient's family in the perinatal palliative care program. The first pregnancy was terminated with a cesarean section; the boy was intubated in the delivery room and died soon after. The mother was not allowed to say farewell or keep any remembrances of her child. In the second pregnancy, the family was involved in the perinatal palliative care program, and all paramedical aspects, crucial from the parent's perspective, were planned and implemented. Palliative perinatal care enables complex care for the pregnant woman and her family. The possibility of palliative perinatal care is significant in decision-making in families with a high risk of lethal disease in subsequent pregnancies.

Palliative sedation at home for terminally ill children with cancer.

CONTEXT: The presence of symptoms that are difficult to control always requires adjustment of treatment, and palliative sedation (PS) should be considered. OBJECTIVES: We analyzed our experience in conducting PS at home for terminally ill children with cancer during a seven-year period. METHODS: We performed a retrospective analysis of medical records of children with cancer treated at home between the years 2005 and 2011. RESULTS: We analyzed the data of 42 cancer patients (18% of all patients); in 21 cases, PS was initiated (solid tumors n = 11, brain tumors [5], bone tumors [4], leukemia [1]). Sedation was introduced because of pain (n = 13), dyspnea (9), anxiety (5), or two of those symptoms (6). The main drug used for sedation was midazolam; all patients received morphine. There were no significant differences in the dose of morphine or midazolam depending on the patient's sex; age was correlated with an increase of midazolam dose (R = 0.68; P = 0.005). Duration of sedation (R = 0.61; P = 0.003) and its later initiation (R = 0.43; P = 0.05) were correlated with an increase of the morphine dose. All patients received adjuvant treatment; in patients who required a morphine dose increase, metoclopramide was used more often (P = 0.0002). Patients did not experience any adverse reactions. Later introduction of sedation was associated with a marginally higher number of intervention visits and a significantly higher number of planned visits (R = 0.53; P = 0.013). CONCLUSION: Sedation may be safely used at home. It requires close monitoring and full cooperation between the family and hospice team. Because of the limited data on home PS in pediatric populations, further studies are needed.

Perinatal palliative care: barriers and attitudes of neonatologists and nurses in Poland.

OBJECTIVE: To identify barriers and personnel attitudes towards realization of palliative care principles in neonatological units. STUDY DESIGN: An anonymous questionnaire was posted to all heads of departments and head nurses of all the 27 neonatological units in the Lodz area. RESULTS: We received 46 (85%) questionnaires. Final analysis comprised 42 properly filled-in questionnaires (by 22 doctors and 20 nurses). In case of prenatal diagnosis of a lethal defect, 77.27% of doctors and 65% of nurses opted for informing the mother also about the possibility of pregnancy continuation and organization of palliative care after delivery. Most of respondents accepted conditions for abortion pointed by the Polish law. The most common barriers pointed out by both groups were insufficient knowledge of the personnel on palliative medicine and family preference for life sustaining treatment. CONCLUSIONS: Understanding attitudes of personnel towards palliative care and identification of barriers are a starting point for future efforts to improve the system of neonatological care.

Who receives home-based perinatal palliative care: experience from Poland.

CONTEXT: The current literature suggests that perinatal palliative care (PPC) programs should be comprehensive, initiated early, and integrative. So far there have been very few publications on the subject of home-based PC of newborns and neonates. Most publications focus on hospital-based care, mainly in the neonatal intensive care units. OBJECTIVE: To describe the neonates and infants who received home-based palliative care in Lodz Region between 2005 and 2011. METHODS: A retrospective review of medical records. RESULTS: 53 neonates and infants were admitted to a home hospice in Lodz Region between 2005 and 2011. In general, they are a growing group of patients referred to palliative care. Congenital diseases (41%) were the primary diagnoses; out of 53 patients 16 died, 20 were discharged home, and 17 stayed under hospice care until 2011. The most common cause of death (56%) was cardiac insufficiency. Neurological symptoms (72%) and dysphagia (58%) were the most common clinical problems. The majority of children (45%) had a feeding tube inserted and were oxygen dependent (45%); 39 families received psychological care and 31 social supports. CONCLUSIONS: For terminally ill neonates and infants, perinatal palliative care is an option which improves the quality of their lives and provides the family with an opportunity to say goodbye.

The impact of pediatric palliative care education on medical students' knowledge and attitudes.

PURPOSE: Most undergraduate palliative care curricula omit pediatric palliative care (PPC) issues. Aim of the study was to evaluate the pilot education programme. METHODS: All 391 students of Faculty of Medicine (FM) and 59 students of Division of Nursing (DN) were included in anonymous questionnaire study. Respondents were tested on their knowledge and attitude towards PPC issues before and at the end of the programme and were expected to evaluate the programme at the end. RESULTS: For final analysis, authors qualified 375 double forms filled in correctly (320 FM and 55 DN). Before the programme, students' knowledge assessed on 0-100-point scale was low (FM: median: 43.35 points; 25%-75%: (40p-53.3p); DN: 26.7p; 13.3p-46.7p), and, in addition, there were differences (P < 0.001) between both faculties. Upon completion of the programme, significant increase of the level of knowledge in both faculties was noted (FM: 80p; 73.3-100; DN: 80p; 66.7p-80p). Participation in the programme changed declared attitudes towards some aspects of withholding of special procedures, euthanasia, and abortion. Both groups of students positively evaluated the programme. CONCLUSIONS: This study identifies medical students' limited knowledge of PPC. Educational intervention changes students' attitudes to the specific end-of-life issues. There is a need for palliative care curricula evaluation.

Pediatric palliative care education for medical students: development and evaluation of a pilot program.

UNLABELLED: In Poland, medical curricula cover palliative care for adults, not for children. This paper evaluates feedback of students who participated in a pilot pediatric palliative care education program. METHOD: An anonymous questionnaire was designed for the students; they were asked to assess each aspect of the program on a scale of 0 to 6 (0 denoted complete dissatisfaction; 6, complete satisfaction). RESULTS: 207 students participated in the program, 197 evaluated it, and 160 formed the research data group. More than 50 percent gave the program 5 points (mean +/- SD; 4.91 +/- 0.9). A total of 79 students (44 percent) assessed the material as 51 to 75 percent new, and 56 students (31 percent) placed it between 76 and 100 percent. A majority indicated that the material would be most useful to them in their future clinical work. Most respondents (78 percent) stated that pediatric palliative care should be included in the pediatrics curriculum. The contribution of the program instructors was given a high score (on average, 5.26 +/- 0.52). CONCLUSION: The pediatric palliative care education program was feasible, and it was well received by the students who undertook it.

End of life care for patients with cystic fibrosis.

Palliative care is an approach that improves quality of life for patients and their families facing problems associated with a life-threatening illness. Care planning is particularly important in CF, where predicting a time of death is extremely difficult. The patient and family should receive realistic information about health status and further options of care. Particularly important is the explanation that treatment does not stop during the terminal phase of the disease, instead the primary aim is to alleviate unpleasant symptoms. More invasive end of life care is becoming the norm in patients awaiting lung transplantation. Terminal care should be organised in the place chosen by the patient and their family. Ideally terminal care should not end when the patient dies, instead psychological and spiritual support should continue to bereaved families.