Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success

Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.

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Principles of palliative care

InnovAiT Education and inspiration for general practice ◽

10.1177/1755738018793921 ◽

2018 ◽

Vol 11 (12) ◽

pp. 676-679

Author(s):

Joshua Getty

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Symptom Control ◽

Management Options ◽

Initial Management ◽

Factors Affecting ◽

Dying Patients ◽

Life Threatening ◽

The Individual

Palliative care traditionally focused on symptom-control in dying patients, but has recently evolved to include care of life-threatening or limiting conditions by optimising the benefits of treatment and considering other ways to improve the quality of life for patients. This is achieved through holistic consideration of physical, psychosocial and spiritual factors affecting the individual patient. The aim of this article is to explore these factors and initial management options.

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Overview of Palliative Care

Nepal Journal of Obstetrics and Gynaecology ◽

10.3126/njog.v9i2.11724 ◽

2014 ◽

Vol 9 (2) ◽

pp. 3-10

Author(s):

B D Paudel ◽

G Dangal ◽

D Munday

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Symptom Control ◽

Oral Morphine ◽

Common Symptom ◽

Depression And Anxiety ◽

Threatening Condition ◽

Life Threatening ◽

The 1960S

Patients diagnosed with a life threatening condition like cancer suffer physically, socially and mentally. Their quality of life can be improved by effective communication and good symptom control even when the disease is incurable. Pain is the most common symptom and can be controlled by optimal use of analgesics especially oral morphine if severe. Psychosocial issues like depression and anxiety can be minimized by counseling and use of medicines. Death is more painful than birth but can be minimized by understanding the reality and by honest sharing which will help to minimize unnecessary sufferings. Palliative care is the care of these patients and their family members to make their life comfortable. Modern palliative care has developed around the world since the 1960s and in Nepal, since the beginning of 21st century. Much remains to be done before palliative care can be an integrated part of health care in Nepal. In this context gynaecologist having knowledge and skills in palliative care, have an important role in improving the quality of life of patients with life threatening condition and their family members.DOI: http://dx.doi.org/10.3126/njog.v9i2.11724

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The effects of animal-assisted interactions on quality of life in children with life-threatening conditions and their parents

International Journal of Palliative Nursing ◽

10.12968/ijpn.2021.27.10.524 ◽

2021 ◽

Vol 27 (10) ◽

pp. 524-530

Author(s):

Haley Walker ◽

Mary Chapman Miller ◽

Brittany Cowfer ◽

Terrah Akard ◽

Mary Jo Gilmer

Keyword(s):

Quality Of Life ◽

Clinical Trial ◽

Palliative Care ◽

Primary Caregivers ◽

Randomised Clinical Trial ◽

Severe Stress ◽

Quality Of Life Research ◽

Threatening Condition ◽

Life Threatening

Background: Children with advanced cancer and their primary caregivers may experience severe stress and anxiety in coping with their life-threatening condition. As a way to help reduce these stressors and increase overall quality of life, research suggests that animal-assisted interactions may be beneficial when integrated into palliative care. Aims: This pilot study aims to provide evidence for the feasibility and efficacy of a randomised clinical trial using animal-assisted interactions to help improve the quality of life for children with an advanced life-threatening condition and their primary caregivers. This protocol paper outlines the basis of the research, goals, experimental design and methodology.

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The Promise of Palliative Care

Pained ◽

10.1093/oso/9780197510384.003.0058 ◽

2020 ◽

pp. 203-206

Author(s):

Michael D. Stein ◽

Sandro Galea

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

End Of Life ◽

Social Workers ◽

Hospice Care ◽

Care Plan ◽

Life Care ◽

High Quality ◽

Life Threatening

This chapter assesses palliative care. Palliative care focuses on improving the quality of life for people with life-threatening illnesses by involving a team of nurses, doctors, social workers, and clergy in a care plan. Hospice care—administered in dedicated units and in services delivered at home—has been slowly expanding over the past two decades, but the increasing percentage of patients who use hospice for less than 7 days suggests that the full benefits of end-of-life palliative care are not being realized. Meanwhile, the use of unwanted, aggressive end-of-life care, often inconsistent with patient preferences, remains pervasive. For palliative care to be effective, it must be supported by government policies and insurer incentives; it must also be owned by communities, which must continue to ask for help in designing and paying for high-quality palliative care for patients and their caregiving families.

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Integration of palliative care into the neuro-oncology practice: patterns in the United States

Neuro-Oncology Practice ◽

10.1093/nop/npt004 ◽

2014 ◽

Vol 1 (1) ◽

pp. 3-7 ◽

Cited By ~ 11

Author(s):

Tobias Walbert

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Brain Tumor ◽

End Of Life ◽

Symptom Control ◽

Tumor Patients ◽

Life Phase ◽

Improve Symptom ◽

Oncology Practice

Abstract Background Between 80%–85 percent of all adult brain tumors are high-grade gliomas (HGGs). Despite aggressive treatment with surgical resection, radiotherapy and chemotherapy, the survival of patients with HGG is limited. Brain tumor patients develop unique symptoms and needs throughout their disease trajectory, and the majority lose the ability to communicate during the end-of-life phase. Palliative care (PC) is a proactive and systematic approach to manage issues that are important to patients and families affected by serious illness. The goal is to improve quality of life and symptom control and thereby reduce suffering. Most PC interventions take place during the end-of-life phase; however, newer data suggest that early PC interventions might improve symptom control and quality of life. Methods A literature review focusing on PC, hospice care, and end-of-life care was performed with the aim to describe the integration of PC into neuro-oncology practice. Results Recently there has been increased interest in the effects of PC and brain tumor patients. The origins, methodology, and conceptual models of delivering PC and how it might be applied to the field of neuro-oncology were reviewed. Patterns of referral and utilization in neuro-oncology are described based on the findings of a recent survey. Conclusions Despite a very high symptom burden, many HGG patients do not receive the same level of PC and have fewer interactions with PC services than other cancer populations. Early PC interventions and structured advance-care planning might improve symptom control and quality of life for brain tumor patients.

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Palliative and Hospice Care: Educational Needs of Inpatient Registered Nurses

Creative Nursing ◽

10.1891/1078-4535.22.2.114 ◽

2016 ◽

Vol 22 (2) ◽

pp. 114-120 ◽

Cited By ~ 1

Author(s):

Jennifer L. Ashley ◽

Tracy K. Fasolino

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Acute Care ◽

Formal Education ◽

Care Setting ◽

Hospice Care ◽

Acute Care Setting ◽

Life Threatening ◽

Hospice And Palliative Care

Hospice and palliative care aim to improve the quality of life for patients and families impacted by chronic, serious, and life-threatening illnesses. Patients and families benefit from earlier integration of palliative care and seamless transitions to hospice care. Nurses are an integral part of the care team, and their understanding of these services is critical. However, many nurses do not receive formal education in hospice and palliative care. This leads to lack of skills that nurses need to provide and discuss hospice and palliative care across care settings. Nurses in an acute care setting of a large health system were invited to participate in a survey, Attitudes Towards Care at the End-of-Life. The results of this survey revealed that nurses believe that patients and families need to be communicated with honestly regarding their disease, but nurses lack the knowledge of how to facilitate these discussions. Another key finding is that nurses feel less confident with non-pharmacologic interventions to relieve patients’ suffering. Education is urgently needed in these areas.

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Reliability and validity of the EORTC QLQ-C30 in palliative care cancer patients

Open Medicine ◽

10.2478/s11536-009-0032-7 ◽

2009 ◽

Vol 4 (3) ◽

pp. 348-357 ◽

Cited By ~ 10

Author(s):

Hubert Jocham ◽

Theo Dassen ◽

Guy Widdershoven ◽

Ruud Halfens

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Cancer Patients ◽

Symptom Control ◽

Reliability And Validity ◽

European Organization ◽

Wide Range ◽

Eortc Qlq C30 ◽

Eortc Qlq

AbstractPalliative care aims at improving the patient’s quality of life. The assessment of this quality of life (QoL) is crucial for the evaluation of palliative care outcome. Many patients require hospital admissions for symptom control during their cancer journey and most of them die in hospitals, although they would like to stay at home until the end of their lives. In 1986, the European Organization for Research and Treatment (EORTC) initiated a research programme to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. This questionnaire measures cancer patients’ physical, psychological and social functions and was used in a wide range of clinical cancer trials with large numbers of research groups and also in various other non-trial studies. The aim of this study was to evaluate the psychometric properties, especially the reliability, validity and applicability of the EORTC QLQ-C30 in a German sample of terminally ill cancer patients receiving palliative care in different settings. The questionnaire was well accepted in the present patient population. Scale reliability was good (pre-treatment 0.80) especially for the functional scale. The results support the reliability and validity of the QLQ-C30 (version 3.0) as a measure of the health-related quality of life in German cancer patients receiving palliative care treatment.

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The Nursing Dimension of Providing Palliative Care to Children and Adolescents with Cancer

Clinical Medicine Insights Pediatrics ◽

10.4137/cmped.s8208 ◽

2012 ◽

Vol 6 ◽

pp. CMPed.S8208 ◽

Cited By ~ 3

Author(s):

Sharron L. Docherty ◽

Cheryl Thaxton ◽

Courtney Allison ◽

Raymond C. Barfield ◽

Robert F. Tamburro

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Children And Adolescents ◽

Pediatric Oncology ◽

Clear Understanding ◽

Curative Therapy ◽

Oncology Nurse ◽

Integral Role ◽

Relief Of Suffering

Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.

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UK Medical Cannabis Registry palliative care patients cohort: initial experience and outcomes

Journal of Cannabis Research ◽

10.1186/s42238-021-00114-9 ◽

2022 ◽

Vol 4 (1) ◽

Author(s):

Devaki Nimalan ◽

Michal Kawka ◽

Simon Erridge ◽

Mehmet Ergisi ◽

Michael Harris ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Adverse Events ◽

Symptom Control ◽

Case Series ◽

Nausea And Vomiting ◽

Medical Cannabis ◽

Patient Reported ◽

The Uk

Abstract Introduction Palliative care aims to improve quality of life through optimal symptom control and pain management. Cannabis-based medicinal products (CBMPs) have a proven role in the treatment of chemotherapy-induced nausea and vomiting. However, there is a paucity of high-quality evidence with regards to the optimal therapeutic regimen, safety, and effectiveness of CBMPs in palliative care, as existing clinical trials are limited by methodological heterogeneity. The aim of this study is to summarise the outcomes of the initial subgroup of patients from the UK Medical Cannabis Registry who were prescribed CBMPs for a primary indication of palliative care, cancer pain and chemotherapy-induced nausea and vomiting, including effects on health-related quality of life and clinical safety. Methods A case series from the UK Medical Cannabis Registry of patients, who were receiving CBMPs for the indication of palliative care was undertaken. The primary outcome consisted of changes in patient-reported outcome measures including EQ-5D-5L, General Anxiety Disorder-7 (GAD-7), Single-Item Sleep Quality Scale (SQS), Pain Visual Analog Scale (VAS) and the Australia-Modified Karnofsky Performance Scale at 1 and 3 months compared to baseline. Secondary outcomes included the incidence and characteristics of adverse events. Statistical significance was defined by p-value< 0.050. Results Sixteen patients were included in the analysis, with a mean age of 63.25 years. Patients were predominantly prescribed CBMPs for cancer-related palliative care (n = 15, 94%). The median initial CBD and THC daily doses were 32.0 mg (Range: 20.0–384.0 mg) and 1.3 mg (Range: 1.0–16.0 mg) respectively. Improvements in patient reported health outcomes were observed according to SQS, EQ-5D-5L mobility, pain and discomfort, and anxiety and depression subdomains, EQ-5D-5L index, EQ-VAS and Pain VAS validated scales at both 1-month and 3-months, however, the changes were not statistically significant. Three adverse events (18.75%) were reported, all of which were either mild or moderate in severity. Conclusion This small study provides an exploratory analysis of the role of CBMPs in palliative care in the first cohort of patients since CBMPs legalisation in the UK. CBMPs were tolerated with few adverse events, all of which were mild or moderate and resolved spontaneously. Further long-term safety and efficacy studies involving larger cohorts are needed to establish CBMPs role in palliative care, including comparisons with standard treatments.

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The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review

Children ◽

10.3390/children8111043 ◽

2021 ◽

Vol 8 (11) ◽

pp. 1043

Author(s):

Silvia Ortiz-Campoy ◽

Cristina Lirio-Romero ◽

Helena Romay-Barrero ◽

David Martín-Caro Álvarez ◽

Purificación López-Muñoz ◽

...

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Palliative Care ◽

Scientific Evidence ◽

Pediatric Palliative Care ◽

Cochrane Library ◽

Her Family ◽

Life Threatening ◽

Respiratory Physiotherapy

Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to control symptoms is physiotherapy; however, its application in the child population has not been thoroughly studied. The main objective of this study was to gather, analyze, and critically evaluate the available scientific evidence on physiotherapy in children who require palliative care through a systematic review of the studies published in the last 10 years in the following databases: PubMed, Cochrane Library, PEDro, CINAHL, and Scopus. Of a total of 622 studies, the inclusion criteria were only met by seven articles, which were focused on the relationship between physiotherapy and PPC. This study analyzed: (1) the main pathologies treated, with a predominance of cerebral palsy and cancer; (2) the interventions applied, such as respiratory physiotherapy, neurological physiotherapy, therapeutic massage, and virtual reality; (3) the effects achieved in the child and his/her family, highlighting the control of symptoms and the improvement of the quality of life; and (4) the knowledge of the physiotherapists on PPC, observing that most of the professionals had not received training in this scope. The findings of this review indicate a lack of an adequate evidence foundation for physiotherapy in PPC.

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