Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

2005 ◽  
Vol 24 (5) ◽  
pp. 57-57
Author(s):  
Brian Carter ◽  
Marcia Leveton
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
Pediatric Patient ◽  
State Of The Art ◽  
Pediatric Population ◽  
Life Issues ◽  
Patient State ◽  
The Face ◽  
Life Threatening ◽  
End Of Life Issues

Palliative Care for Infants, Children, and Adolescents: A Practical Handbook is a comprehensively well written book encompassing the pediatric population, with a practical, didactic, and academic approach to palliative care. This book’s treatment of end-of-life issues would benefit all pediatric caregivers affiliated with life-limiting or life- threatening conditions, regardless of setting. One of the more poignant aspects of this book is its attempt to promote and advance palliative care for children in the face of prevailing barriers. We are reminded that, although we strive to cure and promote life, we must not fail to give to the pediatric patient state-of-the-art care in the face of life-limiting and certain-death circumstances.

Palliative Care and End-of-Life Issues

2017 ◽  
pp. 621-633
Author(s):  
Rashmi Khadilkar ◽  
Hilary Yehling ◽  
Quill Timothy E.
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Life Issues ◽  
End Of Life Issues

scholarly journals Public awareness of palliative care in Sweden

2018 ◽  
Vol 46 (4) ◽  
pp. 478-487 ◽  
Author(s):  
Caroline Westerlund ◽  
Carol Tishelman ◽  
Inger Benkel ◽  
Carl Johan Fürst ◽  
Ulla Molander ◽  
...  
Keyword(s):  
Palliative Care ◽  
Public Awareness ◽  
Population Sample ◽  
Healthcare Setting ◽  
Swedish Population ◽  
Lack Of Information ◽  
Open Questions ◽  
Life Issues ◽  
The Media ◽  
End Of Life Issues

Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ ( n = 827, 41%) or ‘some’ ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as ‘care before death’, ‘pain relief’, ‘dignity’ and a ‘peaceful death’. The preferred place of care and death was one’s own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term ‘palliative care’ was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. Conclusions: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

scholarly journals A Comparative Study of the Law of Palliative Care and End-of-Life Treatment

2003 ◽  
Vol 31 (1) ◽  
pp. 130-143 ◽  
Author(s):  
Danuta Mendelson ◽  
Timothy Stoltzfus Jost
Keyword(s):  
Palliative Care ◽  
Supreme Court ◽  
End Of Life ◽  
The United States ◽  
Legal Issues ◽  
The United Kingdom ◽  
Life Issues ◽  
The Law ◽  
End Of Life Issues ◽  
End Of Life Treatment

Since the Supreme Court of New Jersey decided the Quinlan case a quarter of a century ago, three American Supreme Court decisions and a host of state appellate decisions have addressed end-of-life issues. These decisions, as well as legislation addressing the same issues, have prompted a torrent of law journal articles analyzing every aspect of end-of-life law. In recent years, moreover, a number of law review articles, many published in this journal, have also specifically addressed legal issues raised by palliative care. Much less is known in the United States, however, as to how other countries address these issues. Reflection on the experience and analysis of other nations may give Americans a better understanding of their own experience, as well as suggest improvements to their present way of dealing with the difficult problems in this area.This article offers a conceptual and comparative analysis of major legal issues relating to end-of-life treatment and to the treatment of pain in a number of countries. In particular, it focuses on the law of Australia, Canada, the United Kingdom, Poland, France, the Netherlands, Germany, and Japan.

scholarly journals Whose Business is Dying? Death, the Home and Palliative Care

2011 ◽  
Vol 17 (1) ◽  
Author(s):  
John Rosenberg
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Services ◽  
Death Scene ◽  
Care Services ◽  
Life Issues ◽  
Palliative Care Services ◽  
End Of Life Issues ◽  
Dying At Home ◽  
Communal Responsibility

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

scholarly journals The Fami-life study: protocol of a prospective observational multicenter mixed study of psychological consequences of grieving relatives in French palliative care units on behalf of the family research in palliative care (F.R.I.P.C research network)

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Maité Garrouste-Orgeas ◽  
Cécile Flahault ◽  
Edith Poulain ◽  
Adrien Evin ◽  
Frédéric Guirimand ◽  
...  
Keyword(s):  
Palliative Care ◽  
Anxiety And Depression ◽  
Psychological Consequences ◽  
Post Traumatic Stress ◽  
Patient Death ◽  
Prolonged Grief ◽  
Life Issues ◽  
Palliative Care Units ◽  
Post Traumatic ◽  
End Of Life Issues

Abstract Background Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients’ death in French palliative care units and their needs for support. Methods This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient’ death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients’ death based on an Hospital Anxiety and Depression score (range 0–42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient’ death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient’s death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. Discussion This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives’ experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs. Trial registration NCT03748225 registered on 11/19/2018. Recruiting patients.

scholarly journals Achieving consensus and controversy around applicability of palliative care to dementia

2015 ◽  
Vol 28 (1) ◽  
pp. 133-145 ◽  
Author(s):  
Jenny T. van der Steen ◽  
Lukas Radbruch ◽  
Marike E. de Boer ◽  
Saskia Jünger ◽  
Julian C. Hughes ◽  
...  
Keyword(s):  
Palliative Care ◽  
Delphi Study ◽  
Dementia Care ◽  
Optimal Care ◽  
Early Introduction ◽  
International Panel ◽  
People With Dementia ◽  
Life Issues ◽  
End Of Life Issues ◽  
Almost All

ABSTRACTBackground:People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.Methods:To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.Results:Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.Conclusions:Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.

scholarly journals Palliative Care of the Infant and Child in the Paediatric Intensive Care Unit

2021 ◽  
Author(s):  
Maeve McAllister ◽  
Ann-Marie Crowe ◽  
Roisin Ni Charra ◽  
Julie Edwards ◽  
Suzanne Crowe
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
Intensive Care ◽  
Paediatric Intensive Care Unit ◽  
Paediatric Intensive Care ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues ◽  
Individualised Care

In this chapter we discuss the delivery of palliative care in the paediatric intensive care unit environment. Illustrated by challenging cases, we describe the role of intensive care in symptom management for the child with terminal or life-limiting illness. We detail the importance of a multidisciplinary team and their roles in the provision of individualised care for the child and their family. The importance of family-centred care and advance care planning is expanded upon. In addition, we explore end of life issues that are particular to children in intensive care such as withdrawal of life-sustaining therapies and organ donation. Finally, we discuss how to ensure the delivery of high-quality palliative care in the paediatric intensive care environment.

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