Symptom Management in Pediatric Palliative Care

2019 ◽  
pp. 699-707
Author(s):  
Joan “Jody” Chrastek ◽  
Camara van Breemen
Keyword(s):  
Palliative Care ◽  
Symptom Management ◽  
Cultural Norms ◽  
Healthcare Team ◽  
Pharmacological Interventions ◽  
Disease Treatment ◽  
Disease Trajectory ◽  
Threatening Condition ◽  
Life Threatening

Pediatric symptom management can be complex and challenging, but, when done well, it improves quality of life significantly. Assessment of symptoms should be started at the diagnosis of a life-threatening condition and continued throughout the trajectory of the condition or disease. Treatment methods of each symptom depend on the reversibility of the symptom, disease trajectory, and family goals of care. Both nonpharmacological and pharmacological interventions should be employed. Decisions should be made jointly between the healthcare team and the parents/caregivers. Cultural norms and traditions need to be respected and adhered to when possible. Palliative care should be holistic, addressing not only the physical but also the spiritual, emotional, and social aspects. This chapter provides an overview of managing common symptoms of dyspnea, excessive secretions, nausea/vomiting, constipation, and neurological issues. A list of websites, guidelines, and sample algorithms are included for further information.

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

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.

scholarly journals Overview of Palliative Care

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

scholarly journals Palliative Care Comics: Designing a Person-Centered Patient Education Tool

2019 ◽  
Vol 43 (2) ◽  
Author(s):  
Mona Li ◽  
Shelley Wall ◽  
Camilla Zimmermann
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Treatment Options ◽  
Patient Journey ◽  
Narrative Design ◽  
Disease Trajectory ◽  
Life Threatening ◽  
Education Tool ◽  
Timely Referral

Palliative care can improve quality of life in patients facing life-threatening illnesses by addressing their physical, emotional, spiritual, and practical needs. Research has shown that palliative care initiated early in the disease trajectory improves patients’ mood, quality of life, and even survival. Nevertheless, timely referral and willingness to initiate palliative care are hindered by stigma and the misconception that palliative care is for patients who have exhausted treatment options. Well-designed comics may be useful for addressing complex, stigmatized topics, because they are unintimidating, easy to consume, and relatable to readers. Unsurprisingly, educational comics can teach more effectively than text or verbal instruction. Since palliative care is valued by patients for being a person-centered and patient-led experience, comics may be uniquely suited to educate about this topic by embedding information in the context of an individual patient journey. The comic, currently a work-in-progress, will include a didactic narrative about palliative care and a situational narrative describing the patient experience. Feedback from palliative care patients during the development process will inform visual and narrative design of the comic.

Effectiveness of a Dispatcher-Assisted Cardiopulmonary Resuscitation Program Developed by the Thailand National Institute of Emergency Medicine (NIEMS)

2021 ◽  
pp. 1-6
Author(s):  
Chuenruthai Angkoontassaneeyarat ◽  
Chaiyaporn Yuksen ◽  
Chetsadakon Jenpanitpong ◽  
Pemika Rukthai ◽  
Marisa Seanpan ◽  
...  
Keyword(s):  
Health Care ◽  
Emergency Medicine ◽  
Cardiac Arrest ◽  
Cardiopulmonary Resuscitation ◽  
Health Care Providers ◽  
Care Providers ◽  
Chest Compressions ◽  
Threatening Condition ◽  
Life Threatening

Abstract Background: Out-of-hospital cardiac arrest (OHCA) is a life-threatening condition with an overall survival rate that generally does not exceed 10%. Several factors play essential roles in increasing survival among patients experiencing cardiac arrest outside the hospital. Previous studies have reported that implementing a dispatcher-assisted cardiopulmonary resuscitation (DA-CPR) program increases bystander CPR, quality of chest compressions, and patient survival. This study aimed to assess the effectiveness of a DA-CPR program developed by the Thailand National Institute for Emergency Medicine (NIEMS). Methods: This was an experimental study using a manikin model. The participants comprised both health care providers and non-health care providers aged 18 to 60 years. They were randomly assigned to either the DA-CPR group or the uninstructed CPR (U-CPR) group and performed chest compressions on a manikin model for two minutes. The sequentially numbered, opaque, sealed envelope method was used for randomization in blocks of four with a ratio of 1:1. Results: There were 100 participants in this study (49 in the DA-CPR group and 51 in the U-CPR group). Time to initiate chest compressions was statistically significantly longer in the DA-CPR group than in the U-CPR group (85.82 [SD = 32.54] seconds versus 23.94 [SD = 16.70] seconds; P <.001). However, the CPR instruction did not translate into better performance or quality of chest compressions for the overall sample or for health care or non-health care providers. Conclusion: Those in the CPR-trained group applied chest compressions (initiated CPR) more quickly than those who initiated CPR based upon dispatch-based CPR instructions.

The Promise of Palliative Care

Pained ◽  
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.

Palliative Care in End-Stage Neurological Disease

2018 ◽  
Author(s):  
Tobias Walbert ◽  
Joel Phillips
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Symptom Management ◽  
Neurological Diseases ◽  
The United States ◽  
Pain Syndromes ◽  
End Stage ◽  
Chronic Course

Neurological disorders are among the leading causes of morbidity and death worldwide. Although stroke is the third leading cause of death, after heart disease and cancer, in the United States, other neurological diseases have a more chronic course that leads to protracted disability, morbidity, and death. Unfortunately, for many of these disorders, such as Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS), no cure is currently available. Patients suffer from dysarthria, dysphagia, muscle spasm, bladder and bowel difficulties, pain syndromes, and fatigue. Adequate symptom management and palliative care have the potential to maintain good quality of life for patients for as long as possible and ease the burden on both caregivers and patients. This chapter outlines the principles of clinical symptom management for some of the most important neurological diseases, specifically ALS, stroke, MS, and Parkinson’s disease.

Palliative Care for People Living with HIV

2019 ◽  
pp. 513-520
Author(s):  
Jacquelyn Slomka
Keyword(s):  
Palliative Care ◽  
Chronic Condition ◽  
Social Stigma ◽  
Healthcare Team ◽  
People Living With Hiv ◽  
Care Needs ◽  
Team Members ◽  
Disease Trajectory ◽  
The Social ◽  
Living With Hiv

This chapter discusses the palliative care needs of people living with HIV (PLWH). Now considered a chronic condition, HIV presents specific challenges both for individuals who are long-term survivors and for those adults who are recently diagnosed. The initial diagnosis of a chronic condition can be devastating for anyone, but a diagnosis of HIV may be especially stressful and challenging due to the social stigma and history associated with it. For PLWH whose condition is well-controlled, the development of comorbidities associated with disease characteristics, medication, or the aging process speaks to the need for palliative care throughout the disease trajectory. This chapter focuses on the social context impinging on those needs. It provides palliative care content that can facilitate nurses’ collaborations with patients, as well as with physicians and other healthcare team members who care for adults with HIV.

scholarly journals Considerations for Continuing Semielective and Emergency Otolaryngological Procedures During the COVID-19 Pandemic

2020 ◽  
Vol 100 (1) ◽  
pp. 19-25
Author(s):  
Sarina K. Mueller ◽  
Maximilian Traxdorf ◽  
Konstantinos Mantsopoulos ◽  
Antoniu-Oreste Gostian ◽  
Matti Sievert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Emergency Surgery ◽  
Transmission Rate ◽  
Medical Personnel ◽  
Human Beings ◽  
Threatening Condition ◽  
Long Time ◽  
Life Threatening

Introduction: During the COVID-19 pandemic, worldwide over 600,000 human beings died due to the cause of the disease. In order to deescalate the transmission rate and to avoid crush loading the countries medical health systems social distancing, face masks, and lockdowns have been considered essential by the majority of governments. Whereas some countries have highly reduced or completely stopped otorhinolaryngological procedures, other countries have continued selected surgeries. The objective of this study was to analyze procedures and outcomes of continuing semielective and emergency surgeries during the COVID-19 pandemic. Methods: Retrospective analysis of n = 750 patients who received semi-elective or emergency surgery between March 26 and June 16, 2020, in the Otolaryngology Department of the Friedrich-Alexander-University of Erlangen-Nürnberg. All patients were screened for COVID symptoms and swabbed for SARS-CoV-2 prior to surgery. Results: Of the n = 750 patients, n = 699 patients received semielective surgery and n = 51 emergency surgery. For 27 patients, the swab result could not be awaited due to a life-threatening condition. In these cases, surgery was performed in full protective equipment. No patient was tested positive during or after the surgery (follow-up 45 to 127 days). No member of the medical personnel showed symptoms or was tested positive after contact with patients. Due to the continuation of surgeries, patients’ lives were saved and improvement of long-term quality-of-life and outcomes is anticipated. Conclusions: Continuing selected otorhinolaryngological surgeries is crucial for patients’ health, survival, and long-time quality of life, yet, the protection of the medical personnel has to be granted.

Palliative and Hospice Care: Educational Needs of Inpatient Registered Nurses

2016 ◽  
Vol 22 (2) ◽  
pp. 114-120 ◽  
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.

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

Children ◽  
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.

Sign in / Sign up

Export Citation Format

Share Document