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Management of Non-Pain Symptoms in Pediatric Palliative Care
Abstract and Figures
The majority of children dying from a life-limiting condition suffer from distressing symptoms during their last weeks of life. The provision of current state-of-the-art symptom control is paramount for any health care professional working with dying children, but treatment guidelines are sparse. This article reviews the management of integrative and pharmacological therapies for acute seizure control, anorexia, death rattle, dyspnea, nausea and vomiting, and muscle spasm during the end-of-life period of children and teens. Several myths and misconceptions have led to inadequate symptom control in children with a terminal disease. A dying child is often highly symptomatic, and providing professional integrative and pharmacological symptom relief is one of the many precincts of pediatric palliative care.
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... It may occur due to causes such as infection, acidosis, fluid overload, anemia, lung metastasis, pulmonary embolism, pleural effusion, heart failure, pain, and anxiety. 16 The relationship between pneumonia-related dyspnea and/or severity of dyspnea and the presence of pneumonia has not been adequately studied, especially in pediatric palliative care patients. This study aimed to examine the relationship between radiological findings and laboratory findings of the cases with the presence and severity of dyspnea followed up with the diagnosis of pneumonia in pediatric palliative care. ...
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices.
Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the
relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric
palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December
15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients
diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the
median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the
pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded
that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
... Etiologies of nausea and vomiting in patients' receiving palliative care can be broadly grouped into the following: 1) due to the primary disease; 2) a side effect of therapy (either disease directed or symptom management), 3) gastrointestinal problems, 4) metabolic dysfunction, 5) infection, 6) anxiety. 1,4 Historically medications aimed at treating and preventing nausea and vomiting targeted modulation of serotonin (ondansetron), dopamine (domperidone, metoclopramide), cholinergic (hyoscine hydrobromide), antihistamine (cyclizine) pathways. Despite utilization of these therapeutic modalities many children and young people continue to experience profound and potentially debilitating nausea and vomiting. ...
Background
Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care for refractory nausea and vomiting has been limited due to limited experience or evidence of continuous use. Emerging evidence suggests that continuous use is not only safe, but also effective in patients with nausea and vomiting refractory to multiple lines of anti-emetic therapy.
Methods
We conducted a single centre retrospective chart review of children receiving care from a specialist palliative care team who were given continuous daily aprepitant for nausea and vomiting and were unresponsive to at least 2 prior lines of anti-emetic therapy. Parental reports of the impact of nausea on mobility and feeding were used as proxy efficacy markers. Duration of effect and toxicity was also evaluated.
Results
10 children (8 with cancer as a primary diagnosis and 2 with non-cancer diagnoses) received continuous aprepitant and all showed resolution of nausea and vomiting and an increased ability to mobilise and tolerate feeds. No adverse events noted.
Conclusion
Our review suggests a role for aprepitant in management of refractory nausea and vomiting, demonstrating safety and efficacy. This case series is the first report of aprepitant use in this manner in the paediatric palliative care setting.
... The most common symptom related to pediatric EOL care is pain, which is often underestimated in neonates (13)(14)(15). In comparison to adults, neonates experience pain that is more severe, diffuse, and prolonged (16). ...
One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal palliative care should include identifying and relieving distressing symptoms. Symptoms to manage at neonatal EOL may include pain using both non-pharmacologic and pharmacologic comfort measures, respiratory distress, secretions, agitation and neurologic symptoms, nutrition and gastrointestinal distress, and skin care. Also of equal importance is communication surrounding familial existential distress and psychosocial care (1, 5-7). Institutions should implement a guideline for neonatal EOL care as guidelines have been shown to decrease variability of interventions and increase use of pharmacologic symptom management (4). Providers should consult with palliative care teams if available for added multidisciplinary support for family and staff, which has been shown to enhance EOL care in neonates (8, 9).
Background
Although most children with cancer die in low‐ and middle‐income countries, palliative care receives limited attention in these settings. This study explores parents’ perspectives on experiences and needs of children dying from cancer.
Methods
Home visits were conducted to interview parents of children, who were treated for cancer at an Indonesian academic hospital and died between 2019 and 2020, using semi‐structured questionnaires.
Results
Parents of 49 children (response rate 74%) were interviewed. While all children died in hospital, 37% of parents stated their child preferred to die at home. The most common symptoms during final illness were breathing difficulties (82%), pain (80%), and appetite loss (80%). Psychological symptoms received the least support from the medical team. No intervention was given to 46% of children with depression, 45% of children with anxiety, and 33% with sadness. Boys suffered more often from anxiety (68%) than girls (37%; p = .030). Parents (57%) were not always informed about their child's condition, and doctors gave confusing information (43%). The families’ choice of treatment while dying was relieving pain or discomfort (39%) and extending life (33%), while for 29% it was unknown. However, many parents (51%) did not discuss these treatment wishes with doctors. Many children (45%) felt lonely wanting more interactions with school (71%), friends (63%), and family (57%).
Conclusion
Relieving suffering of children with cancer requires regular physical, psychological, social, and spiritual needs assessment. Families should actively participate in deciding whether to extend life or relieve pain and discomfort. This can importantly improve the quality of life of children and families.
In recent years, palliative care practice has shifted toward community-based palliative care. The complex care needs of older adults and people requiring palliative care are increasing due to the increase in life expectancy. However, it remains limited in the Middle East, which has Muslim-majority populations. Various barriers to successful establishment of palliative care services in community settings were identified.
Paediatric cancers are imminently curable, but present with a plethora of symptoms. These need urgent attention. Palliative care teams provide holistic supportive care; they can ensure the best possible care for physical, psychological, social and spiritual distress, along with the oncologist. Where possible, effective home care can keep the sick child and their family in a safe and secure environment. With advancing disease, the focus changes to comfort care; again, the palliative care teams working with the oncologist will provide the best ‘quality of life’ in the place of the families’ choice. This can be made possible even at end-of-life, thus providing a ‘dignified death’. Care continues into the bereavement phase, along with care for family and professionals.
The increasing use of lasers in photodynamic therapy (PDT) for the treatment of cancer requires a better understanding of the effects of different laser parameters on the results of PDT. To minimize thermal damage and optimize healing benefits, we compared pulse, burst pulse, and continuous wave (CW) laser irradiation modes in PDT treatment of lung cancer in an in vivo animal model. Our results show that pulse and burst pulse modes, with high power density and short irradiation times relative to CW, improve the photodynamic reaction without thermal damage. In contrast, the CW irradiation mode induced thermal damage with the same radial profile as that of the laser beam and the temperature in the tissue.
Background:
More than 15,000 children die annually in the United States due to an underlying life-limiting disease and the majority of those children experience distressing symptoms, which are not adequately relieved, such as pain and dyspnea. Multimodal analgesia, that is multiple agents, interventions, rehabilitation, psychological modalities, and integrative (nonpharmacologic) therapies, act synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality. However, opioids, such as morphine, fentanyl, hydromorphone, oxycodone, and methadone (in the United Kingdom: diamorphine) remain the mainstay medication to effectively treat pain and dyspnea in children with serious illness.
Methods:
This article reviews commonly used opioids in Pediatric Palliative Care, which a special emphasis on 2 potentially particularly effective multimechanistic opioids: tramadol and methadone.
Results:
Methadone, due to its multimechanistic action profile, is possibly among the most effective and most underutilized opioid analgesics in children with severe unrelieved pain at end of life. However, methadone should not be prescribed by those unfamiliar with its use: Its effects should be closely monitored for several days, particularly when it is first started and after any dose changes.
Conclusions:
Tramadol appears to play a key role in treating episodes of inconsolability in children with progressive neurologic, metabolic, or chromosomally based condition with impairment of the central nervous system. However, the recent 2017 United States Food and Drug Administration (FDA) warning against pediatric use of tramadol does not seem to be based on clinical evidence, and therefore puts children at risk for unrelieved pain or increased respiratory depression.
Comprehensive in scope and definitive in authority, this second edition has been thoroughly updated to cover new practices, current epidemiological data and the evolving models that support the delivery of palliative medicine to children. it is is an essential resource for anyone who works with children worldwide.
Dyspnea is perhaps the most distressing symptom experienced by palliative care patients. Potential underlying causes are listed. Supportive therapy is important. Oxygen and opioids are the most common therapies for dyspnea, but several other drugs and drug classes have been used to help manage the symptom. Evaluation instruments that have been used for the symptom are described. Some open research questions are listed. A treatment algorithm, evidence tables and drug therapy tables which include drug costs are presented.
The New England Journal of Medicine, J Wolfe, Vol 342, February 2000, 326–333
An abstract is unavailable. This article is available as HTML full text and PDF.
Background:
Convulsive status epilepticus is the most common neurological medical emergency and has high morbidity and mortality. Early treatment before admission to hospital is best with an effective medication that can be administered safely. We aimed to find out whether there are differences in efficacy and adverse events between buccal administration of liquid midazolam and rectal administration of liquid diazepam in the acute treatment of seizures.
Methods:
At a residential school with on-site medical facilities 42 young people with severe epilepsy were enrolled. Continuous seizures of more than 5 min duration were randomly treated with buccal midazolam or rectal diazepam. If the seizure did not stop within 10 min additional medication chosen by the attending physician was administered. We monitored oxygen saturation and blood pressure for 30 min after treatment. The main outcome measures were efficacy, time from arrival of the nurse to drug administration, time from drug administration to end of seizure, and incidence of adverse cardiorespiratory events.
Findings:
Buccal midazolam was used to treat 40 seizures in 14 students, and rectal diazepam 39 seizures in 14 students. Midazolam stopped 30 (75%) of 40 seizures and diazepam 23 (59%) of 39 (p=0.16). The median time from arrival of the nurse to administration of medication was 2 min. Time from administration to end of seizure did not differ significantly between the two treatments. No clinically important adverse cardiorespiratory events were identified in the two groups. Buccal midazolam was universally acceptable to the nursing and care staff.
Interpretation:
Buccal midazolam is at least as effective as rectal diazepam in the acute treatment of seizures. Administration via the mouth is more socially acceptable and convenient and may become the preferred treatment for long seizures that occur outside hospital.
Fifty-one children 6-17 years of age rated the severity of nausea, vomiting, and the extent to which chemotherapy bothered them during each course of chemotherapy. Sixteen patients had no symptoms and the doses administered to 16 others were not constant so that matched courses could not be assessed. After baseline measurement of two matched courses, the remaining 19 patients were randomized to receive hypnosis or supportive counseling during two more matched courses. An additional course with no intervention was assessed in half of the patients. No significant reduction of symptoms was demonstrated prior to intervention. However, intervention with both hypnosis and supportive counseling was associated with significant reductions in nausea, vomiting, and the extent to which these symptoms bothered patients (all p less than 0.001). Also, after termination of intervention, symptom ratings remained significantly lower than baseline. The data indicate that chemotherapy-related nausea and emesis in children can be reduced with behavioral intervention and that reductions are maintained after intervention has been discontinued.
Gastrointestinal obstruction is a common problem in advanced malignant disease, but its management remains controversial. In those patients for whom surgery is not appropriate, medical intervention is the only remaining option. We present a series of 14 patients with intestinal obstruction who were managed with subcutaneous injections of octreotide, a somatostatin analogue which reduces the volume of gastrointestinal secretions. Good control of vomiting was achieved in 12 patients, and no major side effects were observed. Octreotide would appear to be a useful drug in this clinical situation.