scholarly journals Pediatric Palliative Care in Oncology

2020 ◽  
Vol 38 (9) ◽  
pp. 954-962 ◽  
Author(s):  
Jennifer Snaman ◽  
Sarah McCarthy ◽  
Lori Wiener ◽  
Joanne Wolfe
Keyword(s):  
Palliative Care ◽  
Routine Care ◽  
Physical Symptoms ◽  
Pediatric Palliative Care ◽  
Communication Assessment ◽  
Improved Outcomes ◽  
Palliative Oncology ◽  
Psychosocial Concerns ◽  
Oncology Care ◽  
Serious Disease

Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology—encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases—is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.

scholarly journals Oncology and Palliative Care Integration: Cocreating Quality and Value in the Era of Health Care Reform

2017 ◽  
Vol 13 (9) ◽  
pp. 580-588 ◽  
Author(s):  
Tara L. Kaufmann ◽  
Arif H. Kamal
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Symptom Burden ◽  
Routine Care ◽  
Care Integration ◽  
Usual Clinical Practice ◽  
Oncology Care ◽  
The Right ◽  
Treatment Complexity

Recent payment reforms in health care have spurred thinking regarding how strengthened partnerships can cocreate quality and value. Oncology is an important area in which to consider further collaborations in patient care, as a result of increasing treatment complexity from an expanding armamentarium of interventions, large resource expenditures related to cancer care, and a growing disease prevalence related to an aging population. Many have highlighted the important role of palliative care in the routine care of patients with advanced cancer and high symptom burden. Yet, how integration can occur that translates research into usual clinical practice while prioritizing the right patients and settings to maximize outcomes of interest has been inadequately described. We review the evidence for integration of palliative care into routine oncology care and then map the benefits to the requirements put forward by the Centers for Medicare and Medicaid Services Oncology Care Model as a use case; we also discuss applications to other evolving payment models.

scholarly journals Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer

2020 ◽  
Vol 38 (9) ◽  
pp. 915-925 ◽  
Author(s):  
Joseph A. Greer ◽  
Allison J. Applebaum ◽  
Juliet C. Jacobsen ◽  
Jennifer S. Temel ◽  
Vicki A. Jackson
Keyword(s):  
Palliative Care ◽  
Coping Strategies ◽  
Advanced Cancer ◽  
Physical Symptoms ◽  
Early Palliative Care ◽  
Beneficial Effects ◽  
Symptoms Of Depression ◽  
Home Based ◽  
Oncology Care

Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.

Assessment of physician perceptions of pediatric palliative care for children with cancer in Latin America.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 10053-10053
Author(s):  
Michael McNeil ◽  
Bella Ehrlich ◽  
Marisol Bustamante ◽  
Veronica Dussel ◽  
Paola Friedrich ◽  
...  
Keyword(s):  
Palliative Care ◽  
Latin America ◽  
Palliative Treatment ◽  
Physical Symptoms ◽  
World Health ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Early Integration ◽  
Cancer Management ◽  
Care Integration

10053 Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health Organization (WHO) has stated that early integration of palliative care is an ethical responsibility in the management of children with life-limiting illness. While structural barriers impact the ability to deliver pediatric palliative care (PPC), underlying stigma also prevents early integration of PPC. Methods: The Assessing Doctor’s Attitudes on Palliative Treatment (ADAPT) survey was created for physicians of all specialties who care for children with cancer, initially used in Eurasia. Survey questions evaluated provider perceptions on timing of palliative care integration, scope of palliative treatment, physician responsibility, and ethical issues. This survey was adapted for use in Latin America, including translation to Spanish and reviewed by regional palliative care specialists for syntax, comprehension, and cultural relevance. The survey was then distributed to physicians treating children with cancer in the region. To assess provider’s perspectives on palliative care, we used fifteen statements from the WHO 2018 guidelines, describing general palliative care principles. Results are reported as percent of alignment with guidelines. Results: A total of 1,039 participants from 16 countries in Latin America completed the survey, with a median country response rate of 66% (range 26%-100%). Thirty-six specialties were represented with 34% general pediatricians and 23% pediatric hematologist/oncologists. The majority (59%) had received no PPC training and 37% had no access to PPC experts for consultation in their practice setting. On average, provider’s perspectives on PPC were aligned with the WHO guidelines (81% alignment, range 53%-96%). However, almost half (42%) felt that the integration of pediatric palliative occurred too late in the course of treatment. Additionally, less than half (47%) of respondents felt comfortable addressing the physical symptoms of their patients, 33% felt comfortable addressing emotional symptoms, and only 26% felt comfortable addressing grief and bereavement for the patient’s family. The most common barriers identified were a lack of home-based services (87%), a lack of physician knowledge on the role of PPC (84%), and physician discomfort in discussing palliative care with families (81%). Nearly all (95%) wanted more training in PPC. Conclusions: Most physicians who completed the survey were not confident in providing symptomatic and supportive care for their patients and families. This study will guide targeted interventions for education in PPC for physicians in Latin America as well as interventions to address barriers which impede earlier palliative care integration in the region.

scholarly journals Palliative Care for Children with Central Nervous System Malignancies

2018 ◽  
Vol 5 (4) ◽  
pp. 85 ◽  
Author(s):  
Peter Baenziger ◽  
Karen Moody
Keyword(s):  
Central Nervous System ◽  
Palliative Care ◽  
Nervous System ◽  
Symptom Burden ◽  
Medical Specialty ◽  
Pediatric Palliative Care ◽  
Risk Of Death ◽  
Life Threatening ◽  
Oncology Care

Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills, which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice, can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary pediatric palliative care.

scholarly journals Historical aspects in pain management in palliative care in an oncological reference unit

2021 ◽  
Vol 74 (5) ◽  
Author(s):  
Carolina Fraga Paiva ◽  
Tânia Cristina Franco Santos ◽  
Pacita Geovana Gama de Sousa Aperibense ◽  
Gizele da Conceição Soares Martins ◽  
Lilian Dias Ennes ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Pain Management ◽  
National Cancer Institute ◽  
Historical Aspects ◽  
Palliative Oncology ◽  
History Of ◽  
Oncology Care ◽  
Written Sources ◽  
International Events

ABSTRACT Objective: Describe the actions implemented for pain management in palliative care oncology and analyze the contribution of Hospital do Câncer IV, as a reference unit at the National Cancer Institute. Methods: Study of the history of the present time, whose sources were written documents and interviews with five participants. The collection took place from February to June 2018. The analysis of the written sources took place through internal and external criticism of the documents, considering their chronology and theme. Results: Professionals contributed with actions for pain management in palliative oncology care: in discussions and final drafting of ordinances, as rapporteurs at national and international events, in the elaboration of humanization conducts and systematization of assistance in addressing pain. Final considerations: These actions favored assistance in palliative oncology care at various levels of health care for patients and families, with greater technical and scientific recognition for all.

Early palliative care integration trial: consultation content and interaction dynamics

2021 ◽  
pp. bmjspcare-2020-002419
Author(s):  
Nadine Kleiner ◽  
Sofia C. Zambrano ◽  
Steffen Eychmüller ◽  
Susanne Zwahlen
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Positive Impact ◽  
Interaction Analysis ◽  
Physical Symptoms ◽  
Early Integration ◽  
Early Palliative Care ◽  
Interaction Dynamics ◽  
Oncology Care

ObjectivesEvidence for the positive impact of the early integration of palliative care (EPC) continues to grow. Less is known about how EPC improves patient and family outcomes, including the content of EPC consultations. Therefore, we aimed to better understand the content of EPC consultations including areas addressed, percentage covered per area and interaction style.MethodsAs part of a trial in which EPC in addition to oncology care was compared with oncology care alone, we audio recorded 10 interventions. The palliative care team led the interventions using SENS, a conversation structure, which stands for: Symptoms, End-of-life decision-making, Network and Support. We employed two approaches to analysis: the Roter interaction analysis system (RIAS) to analyse interaction dynamics and SENS as a framework for content analysis.ResultsPhysician–patient communication covered 91% of the interaction. According to RIAS, the consultations were evenly dominated between physicians and patients (ratio=1.04) and highly patient-centred (ratio=1.26). Content wise, rapport was the largest category covering 27% of the consultation, followed by decision-making (21%) and by symptom assessment/management (17%) including 8.1% for physical symptoms and 5.4% for psychosocial aspects. Network discussions covered 17%, and lastly, support for the family 7%.ConclusionsEPC consultations cover a variety of end-of-life topics while putting a high value in establishing rapport, developing a relationship with patients, and on providing reassurance and positive emotional talk. EPC consultations using predefined structures may guarantee that a minimum of important aspects are addressed in a way in which the relationship with the patient remains at the centre.

scholarly journals Summarizing the Evidence Base for Palliative Oncology Care: A Critical Evaluation of the Meta-analyses

2020 ◽  
Vol 14 ◽  
pp. 117955492091572 ◽  
Author(s):  
James L Rogers ◽  
Laura M Perry ◽  
Michael Hoerger
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Critical Evaluation ◽  
Evidence Base ◽  
Palliative Oncology ◽  
Oncology Care ◽  
Meta Analyses ◽  
The Impact ◽  
Psychological Quality Of Life

Background: Palliative care is a specialized approach to symptom management that focuses on supporting patients’ physical and psychological quality of life throughout the disease course. In oncology, palliative care has been increasing in utilization. The evidence base for such care is also growing through the use of randomized controlled trials (RCTs). In this review, we aim to integrate the findings from 4 meta-analyses of palliative oncology care RCTs to examine the impact of palliative care on physical and psychological quality of life and survival. Method: We considered 4 meta-analyses of palliative oncology care RCTs, which each used slightly different methodologies and analyses. Two of the meta-analyses included both outpatient and inpatient populations, whereas the remaining meta-analyses focused specifically on outpatient palliative oncology care. Results: All 4 meta-analyses reported a robust quality of life advantage for patients randomized to receive palliative care. Two meta-analyses identified a survival advantage, whereas the other 2 detected no survival differences. In 1 meta-analysis that examined high-quality RCTs of outpatient palliative oncology care, it was found that an increased survival probability for palliative care, compared with standard of care, was confined to 6- to 18-month follow-up. Conclusions: There is a growing evidence base for palliative oncology care, as highlighted by the 4 meta-analyses considered. Such care successfully improves both physical and psychological quality of life for patients with serious illnesses, especially cancer. Clinicians should educate patients and their caregivers about the findings of these meta-analyses. Finally, governmental policies should focus on increasing palliative care access.

scholarly journals Delivering Hospital-Based Pediatric Palliative Care: The Symptoms, Interventions, and Outcomes for Children With Cancer in Bangladesh

2020 ◽  
pp. 884-891
Author(s):  
Megan Doherty ◽  
Liam Power ◽  
Chloé Thabet
Keyword(s):  
Palliative Care ◽  
Cancer Care ◽  
Psychosocial Support ◽  
Lymphoblastic Leukemia ◽  
Pilot Project ◽  
Physical Symptoms ◽  
Health Care Facilities ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Clinical Records

PURPOSE The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services. METHODS This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics. RESULTS There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21). CONCLUSION A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.

scholarly journals Evaluation of a Quality Improvement Intervention to Improve Pediatric Palliative Care Consultation Processes

2021 ◽  
pp. 104990912110266
Author(s):  
Jennifer Forsman Stoyell ◽  
Megan Jordan ◽  
Anne Derouin ◽  
Julie Thompson ◽  
Sarah Gall ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Physical Symptoms ◽  
Pediatric Palliative Care ◽  
Family Needs ◽  
Emotional Needs ◽  
Improvement Project ◽  
Symptom Screening ◽  
Palliative Care Consultation ◽  
Care Consultation

Background: A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments of other physical symptoms and psychosocial, emotional, or spiritual needs. Aims: To improve the breadth of assessment of psychosocial and emotional needs, screen for symptoms other than pain among pediatric patients utilizing palliative care services, and to increase documentation of assessment data from 30%-40% to 80% through practice changes implemented in 2 Plan-Do-Study-Act (PDSA) cycles. Methods: This quality improvement project involved implementing provider education and adapting the palliative care consultation template in the electronic health record to improve breadth and consistency of assessment and documentation during consultations by the interdisciplinary pediatric palliative care team. Two PDSA cycles were performed. Chi squared tests and statistical control charts were used for data analysis. Results: There was statistically significant improvement in the inclusion of documentation of a pediatric palliative care social work note from baseline (32%) to Cycle 2 (57%). Physical symptom screening declined slightly, but not significantly (p = .32) and socio-emotional discussions also declined but not significantly (p = .05). Conclusions: Screening for physical symptoms and discussions with patients and families about psychosocial/emotional needs during the initial palliative care consultations are extremely important in providing effective, holistic, patient-centered care. There is a need for development of pediatric-centric guidelines and quality measures to evaluate pediatric palliative care programs; further research is indicated to determine methods for evaluating compliance with these guidelines.

scholarly journals Adding life to their years: the current state of pediatric palliative care in CKD

Kidney360 ◽  
2021 ◽  
pp. 10.34067/KID.0000282021
Author(s):  
Taylor R House ◽  
Aaron Wightman
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Kidney Disease ◽  
Pediatric Nephrology ◽  
Unmet Need ◽  
Routine Care ◽  
Pediatric Palliative Care ◽  
Disease States ◽  
Definition Of

Despite continued advances in medical treatment, pediatric chronic kidney disease (CKD) remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death.(1-7) These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. Pediatric palliative care is an evolving field which strives to 1) relieve physical, psychological, social, practical and existential suffering; 2) improve quality of life; 3) facilitate decision-making; and 4) assist with care coordination in children with life-threatening or life-shortening conditions.(8) Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases, yet, similar integration has not occurred in pediatric nephrology.(9,10) This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and finally to introduce future opportunities for study.

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