A Retrospective Examination of Home PCA Use and Parental Satisfaction With Pediatric Palliative Care Patients

Author(s):  
Daniel H. Grossoehme ◽  
Miraides Brown ◽  
Gwendolyn Richner ◽  
Sarah M. Zhou ◽  
Sarah Friebert

Introduction: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain. Methods: A chart review was performed of patients prescribed home PCA. Surveys were sent to patients’ guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns. Results: Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child’s pain management and level of alertness. Conclusion: Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.

2013 ◽  
Vol 30 (8) ◽  
pp. 764-767 ◽  
Author(s):  
Lindsay A. Thompson ◽  
Elizabeth Meinert ◽  
Kimberly Baker ◽  
Caprice Knapp

2019 ◽  
Vol 57 (1) ◽  
pp. 20-27 ◽  
Author(s):  
Jessica S. Merlin ◽  
Kanan Patel ◽  
Nicole Thompson ◽  
Jennifer Kapo ◽  
Frank Keefe ◽  
...  

Author(s):  
Stefan J. Friedrichsdorf

Annually, at least 21 million children could benefit from pediatric palliative care (PPC) and 8 million would need specialized PPC services. In the USA alone, more than 40,000 children aged 0–19 years die annually; 55% of them are infants younger than 1 year of age. Pain is common, under-recognized, and under-treated, especially in children with progressive neurodegenerative and chromosomal conditions with central nervous system impairment. Unrelieved pain is also common in children with advanced serious illness during the end-of-life period, and, when treated, the therapy is commonly ineffective. Treating pain in children with serious illness is not profoundly different than advanced pain management for children with complex acute conditions or diseases such as major trauma, burns, cancer, or those with sickle cell disease in vaso-occlusive crisis. It is important to appreciate that children with serious illness are more likely to simultaneously suffer from acute pain, neuropathic pain, visceral pain, total pain, and chronic pain. As such, multimodal analgesic (i.e., multiple agents, interventions, rehabilitation, psychological modalities, and integrative (“nonpharmacologic,” e.g., behavioral, physiological, and psychological) therapies that act synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality must be employed. Opioids, such as morphine, fentanyl, hydromorphone, oxycodone, and methadone, remain the mainstay medications to effectively treat pain in children with serious illness. However, medications alone are often insufficient for optimal pain control. In fact, the paradigm shift away from “medications only” toward offering “multimodal analgesia” to children with serious illness experiencing pain, including addressing chronic pain/primary pain disorders and total pain has become a “game changer” in advancing PPC to ensure that patients can live as long as possible, as well as possible.


2019 ◽  
Vol 25 (9) ◽  
pp. 453-457
Author(s):  
Brenda Peters-Watral

Along with a well-documented increase in opioid use disorder (OUD) and a rapidly escalating rate of fatal overdose in North America, inadequate management of chronic pain remains a pervasive problem. The increasing number of individuals living with OUD also experience multiple cancer risk factors, which are related to their substance use, while people with cancer diagnoses have similar risks of current or past addiction as the general population. Recent pain guidelines focus on chronic non-cancer pain and do not include recommendations for cancer pain management. Managing cancer pain at the end of life is more challenging in people with current or past substance use disorder (SUD), especially OUD. Addressing these challenges requires confronting stigmas and stereotypes, building knowledge among palliative care providers and assessing the risks and benefits of opioids for pain management on an individual basis in order to continue to provide the holistic care.


2018 ◽  
Vol 17 (03) ◽  
pp. 269-275 ◽  
Author(s):  
Samuel M. Kase ◽  
Elisha D. Waldman ◽  
Andrea S. Weintraub

AbstractObjectiveCompassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States.MethodThe Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed.ResultsThe survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a “clinical situation,” physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about “coworkers,” emotional depletion, social isolation, and “recent involvement in a clinical situation in which life-prolonging activities were not introduced” were significant determinants of BO. Physical exhaustion, personal history of trauma, “recent involvement in a clinical situation in which life-prolonging activities were not introduced,” and not discussing distressing issues were significant predictors of lower CS scores.Significance of resultsCF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.


Children ◽  
2021 ◽  
Vol 8 (10) ◽  
pp. 902
Author(s):  
Jennifer Placencia ◽  
Kevin Madden

Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the absorption, distribution, metabolism, and elimination of medications are commonly used in palliative care. Adding to that complexity, certain medications have different effects in the pediatric patient compared to the adult patient. Being aware of the pharmacokinetic changes, impact on neurodevelopment and unique medication factors that are present in pediatric patients helps clinicians treat the pediatric palliative care patient in the best and safest way possible.


2021 ◽  
Vol 8 ◽  
pp. 2333794X2110430
Author(s):  
Megan Doherty ◽  
Shokoufeh Modanloo ◽  
Emily Evans ◽  
Jennifer Rowe ◽  
Dennis Newhook ◽  
...  

Project ECHO (Extension of Community Healthcare Outcomes) is an innovative model of online education which has been proposed to enhance access to palliative care in resource-limited settings. There is limited literature describing how health care providers in low-and middle-income countries benefit from and learn from this type of training. This qualitative description study explores the learning experiences of participants in a Project ECHO program on pediatric palliative care in South Asia through focus group discussions. Discussions were transcribed, coded, independently verified, and arranged into overarching themes. We identified learning themes including the importance of creating a supportive learning community; the opportunity to share ideas and experiences; gaining knowledge and skills, and access to additional learning materials. Designing future programs to ensure a supportive and interactive learning community with attention cultural challenges may enhance learning from future Project ECHO programs.


Author(s):  
Melody Brown Hellsten ◽  
Stacey Berg

This chapter focuses on issues related to the assessment and management of common non-pain symptoms in children and adolescents with complex medical conditions in the advanced and terminal stages. Suffering from uncontrolled symptoms can be prevented by knowledge of the child‘s underlying disease process, thorough assessment of the child and family for sources of suffering, advocacy for child and family needs, and the use of an interdisciplinary approach to management that includes appropriate pharmacological and nonpharmacological interventions.


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