Pediatric Palliative Patients Research Articles

Short-term Non-invasive Ventilation for Children with Palliative Care Needs

Objectives: Non-invasive ventilation (NIV), namely continuous positive airway pressure (CPAP) and bi-level positive airway pressure (BiPAP), delivers mechanical ventilation without endotracheal intubation. Short-term NIV (planned for <21 days during initiation) can be used for the management of acute respiratory distress (ARD) among paediatric palliative patients with “Do Not Resuscitate or Intubate” (DNI) as the ceiling of care. This study aimed to describe the usage of short-term NIV among paediatric palliative patients in a woman and child hospital with a paediatric palliative subspecialty. Materials and Methods: A retrospective and observational study was conducted on all paediatric palliative patients who received short-term NIV in Tunku Azizah Hospital Kuala Lumpur, Malaysia, from March 2020 to May 2022. Results: During the study period, short-term NIV was offered on 23 occasions for 20 different children. Indications for short-term NIV include 16 (69.6%) occasions of potentially reversible ARD (NIV Category 1) and 7 (30.4%) occasions of comfort care at the end of life (NIV Category 2). The main cause of ARD was pneumonia (90.3%) due to either aspiration or infection. The modality of NIV used was BiPAP only (14 occasions, 60.9%), CPAP only (three occasions, 13%) and both BiPAP and CPAP (six occasions, 26.1%). The median duration of NIV usage was four days (minimum one day and maximum 15 days). NIV was initiated as an escalation from nasal prong, Ventimask or high-flow mask oxygen on 22 occasions and as weaning down post-extubation on one occasion. For the 22 occasions of escalating therapy, there was significant improvement at six hours compared to pre-NIV in the median heart rate (136 to 121, P=0.002), respiratory rate (40 to 31, P=0.002) and oxygen saturation (96% to 99%, P=0.025). All 17 documented parental impressions of the child’s condition post six hours of NIV were that the child had improved. Adverse events during short-term NIV include five episodes (21.7%) of stomach distension, four episodes (17.4%) of skin sores on the face and one episode (4.3%) of excessive drooling. Three patients passed away while on NIV in the hospital. For the other 20 (87%) occasions, patients were able to wean off NIV. Post-weaning off NIV, three patients passed away during the same admission. On 17 occasions, patients were discharged home after weaning off NIV. Conclusion: Usage of short-term NIV in paediatric palliative care, where children have an advanced directive in place indicating DNI, as seen in our study, can be a valuable modality of management for distressing symptoms, in addition to the pharmacological management of breathlessness. This is shown through our study to be of benefit in potentially reversible ARD as well as comfort care at the end of life. Further rigorous studies will need to be conducted for a clearer understanding of short-term NIV that would enable the formulation of guidelines to improve the quality of life and death in children.

A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment

BackgroundChildren with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care.MethodsA multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values.ResultsWe included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values.ConclusionEven though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.

The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis.

This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.

Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

ObjectiveTo explore the elements involved in the process of paediatric palliative home care in the Spanish context according to the opinion of professionals. MethodQualitative study based on Grounded Theory, adjusted to COREQ standards, using theoretical sampling with in-depth interviews (June 2021–February 2022) with paediatricians, paediatric nurses and social workers from paediatric palliative care units in Spain, excluding professionals with less than 1 years’ experience. Interviews were recorded and transcribed literally for coding and categorisation through a constant comparative process of code co-occurrence until data saturation using Atlas-Ti®. The anonymity of the informants has been guaranteed by using pseudonyms after approval by the Research Ethics Committee of the Hospital Universitario de Gran Canaria Doctor Negrín (Las Palmas, Canary Islands) with registration number 2021-403-1. Results18 interviews were conducted and 990 quotes were grouped into 22 categories of analysis and structured into four thematic groups (care, environment, patient and family, and professionals). The findings showed a holistic view emphasising the need to organise and integrate the factors involved in the home-based approach to paediatric palliative home care. ConclusionsIn our context, the home environment meets appropriate conditions for the development of paediatric palliative care. The categories of analysis identified establish a starting point for further deepening the approach from the thematic areas involved: care, the environment, the patient and family, and professionals.

Advance care planning and the parental geographical background in pediatric palliative home care: a retrospective chart review

The relevance to acknowledge the parental migration history in pediatric palliative care is widely recognized. However, its influence on integral parts of advance care planning (ACP) is unknown. In this non-interventional cohort study, we aimed at identifying systematic differences between pediatric palliative patients with varying parental countries of origin regarding medical orders for life-sustaining treatment and the location of patients’ death. Two hundred eighty-eight pediatric cases in an ambulant pediatric palliative care setting in Germany were retrospectively analyzed using multinomial logistic regression models. Agreements on medical orders for life-sustaining treatment (MOLST) differed significantly between patients with varying parental countries of origin. Full code orders for life-sustaining treatment were made more often in Turkish families than in German families. There were no significant associations between the patients’ location of death and the parental countries of origin. However, confounder-analysis revealed a strong association between the patients’ underlying disease and the orders for life-sustaining treatment as well as the location of death.Conclusions: Even this study indicates that the parental geographical background as an important sociocultural aspect might have an impact on ACP decisions for children and adolescents with life-limiting conditions, other factors as the patients’ underlying disease can be more crucial for decision making in pediatric palliative care. The reason for the differences found might lay in cultural preferences or barriers to appropriate care. The inclusion of sociocultural aspects in decision-making is crucial to guarantee culture-sensitive, patient-centered pediatric palliative care.What is Known:• Decision making processes in pediatric palliative care are influenced by various cultural and religious norms.• So far, there is little knowledge about tangible differences with regard to end-of-life care decisions according to the geographical background of parents.What is New:• End-of-life care decisions varied significantly with the parental country of origin.• Other factors as the underlying disease may be more crucial for decision making in pediatric palliative care.

Scientific and practical approaches to optimizing the pharmaceutical supply of pediatric palliative patients with paralytic syndromes

Today, palliative care (PC) as a system has a complex structure with stable orderliness, interrelated elements and subsystems. The problem of providing PD with an appropriate level and quality to the children population is particularly acute; it is due to differences in the duration of provision, the necessity to provide educational services, and the socialization of palliative children. At the same time, an important aspect in achieving an appropriate quality of life for children and their families related to health is the assessment of not only medical and social, but also pharmaceutical provision.
 The aim of the work is to substantiate the approaches to optimization of pharmaceutical support of pediatric palliative patients with paralytic syndromes.
 The study objects were data from medical records, theactual consumption of medicines by pediatric patients of the Kharkiv healthcare institution where palliative care was provided, as well as data on the state registration of medicines in Ukraine. During the study, clinical and anamnestic, sociological, and marketing methods were used.
 Based on the results of the analysis of clinical and anamnestic data and the overall assessment of symptoms in a sample group of palliative children with paralytic syndromes, which was 115 people, pathological conditions that led to frequent or permanent distress were identified. Among them, the spastic syndrome prevailed in 100% of cases, the pain syndrome in 66% of cases, the convulsive syndrome in 59%, respectively, and digestive disorders were observed in 82.6% of patients in the sample. It was found that a large proportions of drugs for pharmacological correction of symptoms in the sample of patients were formed by antiepileptic drugs, laxatives and centrally acting muscle relaxants. The results of the marketing analysis of a definite segment of the pharmaceutical market showed a rather limited range of drugs for pediatric dosage forms and concentrations, and it on average ranged from 3.1% to 25% in the pharmacotherapeutic groups studied.
 Thus, the results obtained prove the need to develop mechanisms for optimizing the pharmaceutical supply of pediatric palliative patients, in particular, expanding the range of medicines approved for use in pediatric practice.

Medication chart review at end of life of paediatric palliative patients.

This study aimed to review the use of medications in a paediatric palliative care (PPC) population during the last two weeks of life. This is a retrospective observational cohort study that included 50 consecutive patients who were referred to KK Hospital PPC service from 2011 to 2015. Those who died after two weeks from discharge date were excluded. Medication charts were reviewed and relevant data were extracted. The study population included 42 patients and consists predominantly oncological and neurological diagnoses. The median number of medications used was 11.5. Ninety-five percent (40 out of 42) of study population required analgesia where 81% (34 out of 42) were opioid. There was prevalent use of antibiotics (86% of study population, 36 out of 42). Less frequently used medications included steroids, sedatives, laxatives and antiemetics (48%, 52%, 48% and 38% of study population respectively). Significant number of medications was used in PPC during the last two weeks of life. Apart from significant use of analgesia, there is also notable use of antibiotics. Future directions in education such as prescription of laxatives with opioid are proposed.

Drug Abuse and Diversion in Pediatric Palliative Care—What You Should Know, What You Can Do, and What You Can Learn from Our Multisite Experience (TH336)

•Describe using pediatric-specific data the importance of safe opioid prescribing practices by pediatric palliative care providers.•Understand the steps needed to create reliable processes for safe opioid prescribing, standardized pediatric risk assessment and care for pediatric palliative patients.•Describe the steps to take when drug diversion is confirmed for children of all age ranges, including young children, adolescents and young adults. Prescription drug abuse is an epidemic in the US, leading to increased government oversight in opioid prescribing. The issue becomes more complicated when minor children are involved. One pediatric palliative care team found that of 62 consecutive children and young adults who were stratified for opioid misuse, >60% were at either moderate or high risk. In 6 cases, the patient was weaned from opioids or the team stopped prescribing due to diversion or misuse behaviors. Thus safe opioid prescribing should be a priority for all pediatric palliative care (PPC) teams. Using a case-based discussion, we will review pediatric-specific opioid abuse data and best evidence around safe opioid prescribing. We will discuss the safe-opioid prescribing “opioid bundle” developed by the Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center and how it has been rolled out at two additional children's hospitals. We will talk in-depth about caring for high risk patients, highlighting cases of confirmed diversion and the resulting de-prescribing. We will include cases of minor children with diversion by adult caregivers as well as adolescent and young adult patients participating in drug diversion. Given the high risk of drug misuse, abuse and diversion, safe opioid prescribing is necessary for all PPC teams. The “opioid bundle” created by PACT is a practical method for PPC teams nationwide to employ in the care of their patients.

Effective treatment of spasticity using dronabinol in pediatric palliative care.

Cannabis extracts have a wide therapeutic potential but in many countries they have not been approved for treatment in children so far. We conducted an open, uncontrolled, retrospective study on the administration of dronabinol to determine the value, efficacy, and safety of cannabis-based medicines in the treatment of refractory spasticity in pediatric palliative care. Sixteen children, adolescents and young adults having complex neurological conditions with spasticity (aged 1.3-26.6 years, median 12.7 years) were treated with dronabinol by our specialized pediatric palliative care team between 01.12.2010 and 30.04.2015 in a home-care setting. Therapeutic efficacy and side effects were closely monitored. Drops of the 2.5% oily tetrahydrocannabinol solution (dronabinol) were administered. A promising therapeutic effect was seen, mostly due to abolishment or marked improvement of severe, treatment resistant spasticity (n=12). In two cases the effect could not be determined, two patients did not benefit. The median duration of treatment was 181 days (range 23-1429 days). Dosages to obtain a therapeutic effect varied from 0.08 to 1.0mg/kg/d with a median of 0.33mg/kg/d in patients with a documented therapeutic effect. When administered as an escalating dosage scheme, side effects were rare and only consisted in vomiting and restlessness (one patient each). No serious and enduring side effects occurred even in young children and/or over a longer period of time. In the majority of pediatric palliative patients the treatment with dronabinol showed promising effects in treatment resistant spasticity.

Predictors of Symptoms and Site of Death in Pediatric Palliative Patients With Cancer at End of Life

To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer. We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that elicited preferences for aggressive chemotherapy versus supportive care alone and who subsequently died. Main outcomes were severe pain and dyspnea proximal to death and site of death. Choice of aggressive chemotherapy predicted significantly more severe pain (odds ratio [OR] 3.1, 95% confidence interval [CI] 1.0-9.6; P = .049). Intravenous chemotherapy 4 weeks before death predicted severe dyspnea (OR 15.8, 95% CI 3.7-67.5; P < .001) and death outside the home (OR 0.3, 95% CI 0.1-0.9; P = .038). Parental choice of aggressive chemotherapy and more aggressive treatment proximal to death predicted more pain, dyspnea, and death in hospital. Strategies to improve quality of life are needed.

Die Entwicklung einer spezialisierten ambulanten pädiatrischen Palliativversorgung

In Deutschland sterben jährlich ca. 1 500 – 3 000 Kinder an lebensverkürzenden Erkrankungen. Symptomatik und Verlauf unterscheiden sich in Abhängigkeit von der Art der Erkrankung erheblich. Der Wunsch der Kinder und ihrer Familien, die Lebensendphase zu Hause verbringen zu können, führte zur Gründung eines Kinderpalliativteams am Universitätsklinikum Düsseldorf. In den letzten 20 Jahren ist aus einer unstrukturierten, ehrenamtlichen Arbeit ein spezialisiertes pädiatrisches Palliativteam entstanden. Zukünftige Ziele sind eine flächendeckende, kompetente Versorgung aller pädiatrischen Palliativpatienten und die Optimierung der Zusammenarbeit zwischen Haus-Kinderärzten, Kinderpalliativpflegediensten und spezialisierten ambulanten pädiatrischen Palliativteams. Darüber hinaus sind die Erstellung von Netzwerken sowie eine gute Kommunikation zwischen multiprofessionellen Versorgern unabdingbar.