“Some things are even worse than telling a child he is going to die”: Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life

2021 ◽  
Author(s):  
Anat Laronne ◽  
Leeat Granek ◽  
Lori Wiener ◽  
Paula Feder‐Bubis ◽  
Hana Golan
Keyword(s):  
End Of Life ◽  
Pediatric Oncology ◽  
Healthcare Professionals ◽  
Communicating With Children

End-of-life decision-making in pediatric oncology

2015 ◽  
pp. 894-908
Author(s):  
Pamela S. Hinds ◽  
Linda L. Oakes ◽  
Wayne L. Furman
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Pediatric Oncology ◽  
Current Literature ◽  
Health Care Professionals ◽  
Healthcare Professionals ◽  
End Of Life Decision ◽  
Life Decision ◽  
Use Of Health Care

The purposes of this chapter are to offer a review of the current literature (both clinical and research-based) on end-of-life decision-making in pediatrics, with a special emphasis on pediatric oncology, and to offer guidelines for the use of health-care professionals in assisting children, adolescents, their parents, and other healthcare professionals in making such decisions.

End-of-Life Needs of Dying Patients and Their Families in Mainland China: A Systematic Review

2021 ◽  
pp. 003022282199734
Author(s):  
Guobin Cheng ◽  
Chuqian Chen
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Web Of Science ◽  
Empirical Studies ◽  
Symptom Control ◽  
Mainland China ◽  
Spiritual Needs ◽  
Care Needs ◽  
Dying Patients

Objective To map the current research status and understand existing findings regarding end-of-life care needs in Mainland China. Method First-hand, empirical studies on the needs of dying patients and/or their families in Mainland China were searched in Web of Science, Scopus, Proquest, Taylor & Francis Online and CNKI in December 2019. Findings were synthesized. Results A total of 33 (10 qualitative) studies were involved. Chinese dying patients and their families had physical, psychological, social, and spiritual needs and needs for knowledge and information. Prevalent needs of dying patients were mainly symptom control and decent look, being treated kindly by professional caregivers, family accompany, dignity, and comfortable environment. Families mainly need healthcare professionals to take good care of patients and wishes for information, knowledge, and facilities to help themselves become better caregivers. Conclusions Findings lay the foundation for effective and tailored services for Chinese clients and provided insights for future investigations.

scholarly journals Ethical considerations at the end-of-life care

2021 ◽  
Vol 9 ◽  
pp. 205031212110009
Author(s):  
Melahat Akdeniz ◽  
Bülent Yardımcı ◽  
Ethem Kavukcu
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Assisted Suicide ◽  
Healthcare Professionals ◽  
Ethical Decision Making ◽  
Biomedical Ethics ◽  
Artificial Nutrition ◽  
Life Care ◽  
Ethical Challenges ◽  
Physician Assisted Suicide

The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.

scholarly journals Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
Bregje D. Onwuteaka-Philipsen ◽  
Cécile R.L. Boot ◽  
Allard J. van der Beek ◽  
Hanna T. Klop ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Family Care ◽  
Work And Family ◽  
Similar Process ◽  
Paid Work ◽  
Health And Wellbeing ◽  
Care Situation ◽  
At Home

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

scholarly journals The Pediatric Oncology East and Mediterranean (POEM) group – A regional collaborative platform for childhood cancer healthcare professionals

2020 ◽  
Vol 5 (1) ◽  
pp. 3-6 ◽  
Author(s):  
Raya Saab ◽  
Asim Belgaumi ◽  
Samar Muwakkit ◽  
Anas Obeid ◽  
Carlos-Rodriguez Galindo ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Healthcare Professionals ◽  
Group A ◽  
Collaborative Platform

Healthcare professionals’ perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study

2013 ◽  
Vol 5 (5) ◽  
pp. 490-495 ◽  
Author(s):  
Colette Reid ◽  
Jane Gibbins ◽  
Sophia Bloor ◽  
Melanie Burcombe ◽  
Rachel McCoubrie ◽  
...  
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Acute Hospital ◽  
Life Care
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