End-of-life care in the pediatric intensive care unit: Survey in Japan
Adolescent; Attitude of Health Personnel; Child; Clinical Decision-Making/mt [Methods]; Health Care Surveys; Humans; Infant; intensive care units; Intensive Care Units; Japan; Palliative Care/mt [Methods]; Palliative Care/sn [Statistics & Numerical Data]; Palliative Care/st [Standards]; Pediatric/sn [Statistics & Numerical Data]; Pediatric/st [Standards]; Physicians'/sn [Statistics & Numerical Data]; Physicians'/st [Standards]; Practice Patterns; Practice Patterns Physicians'/*ethics; Preschool; Terminal Care/mt [Methods]; Terminal Care/sn [Statistics & Numerical Data]; Terminal Care/st [Standards]
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan. METHODS: A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple-choice questions and one open-ended question. RESULTS: Twenty-seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only eight of these teams were involved in EOL care in PICUs. Mental health care for health-care providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included "lack of experience and knowledge about EOL care", "fear of making the decision to end care", and "reluctance to be involved in EOL care because of its complex process". Team issues included "insufficient frequency of conferences" and "non-multidisciplinary approach". Legal and ethics issues were "lack of legal support" and "fear of lawsuits". CONCLUSIONS: This study is the first to investigate the current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. A need was identified for relevant educational programs, as well as the importance of multidisciplinary and legal support.
Seino Y; Kurosawa H; Shiima Y; Niitsu T
Pediatrics International
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/ped.13924" target="_blank" rel="noreferrer noopener">10.1111/ped.13924</a>
Planning for the end of children's lives--the lifetime framework.
Child; Humans; Parent-Child Relations; Attitude to Death; Time Factors; Delphi Technique; adolescent; Preschool; decision making; infant; DNAR; Palliative Care/st [Standards]; Terminal Care/st [Standards]; Advance Care Planning/st [Standards]; Child Health Services/og [Organization & Administration]
AIM: This paper describes the development of 'a best practice framework', following review of a sample of notes of children known to the Lifetime Service, where the child has a non-malignant life limiting condition, to improve child and family engagement in the planning process at the end of life., BACKGROUND: There is very little literature about how to engage with families to decide end of life plans for children with life limiting conditions., METHOD: An audit of clinical case notes was followed by the development of 'a best practice framework' through a Delphi process involving clinical practitioners., RESULTS: The 3 x 3 framework is presented to aid communication with parents and children at this difficult time of decision-making., CONCLUSION: This new framework has been well received by both parents and practitioners, and its use will be audited in the future.
2008
Finlay F; Lewis M; Lenton S; Poon M
Child: Care, Health And Development
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2008.00843.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2008.00843.x</a>
The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy.
Child; Female; Humans; Male; Advance Directives; Adult; Respiration; Continuity of Patient Care; adolescent; bereavement; social support; DNAR; Nuclear Family; Artificial; Parents/px [Psychology]; Palliative Care/og [Organization & Administration]; Muscular Atrophy; Muscular Dystrophies/th [Therapy]; Needs Assessment; Terminal Care/st [Standards]; South Australia; Spinal/th [Therapy]
OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families., METHODOLOGY: Semistructured interviews were conducted in South Australia with nine bereaved and four current family members of individuals with muscular dystrophy or spinal muscular atrophy. Issues explored during interview included: (i) the family perceptions of the difficulties in caring; (ii) the psychological and physical resources which were available to assist them; and (iii) family recall of the management of the terminal phase of the illness., RESULTS: Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives., CONCLUSIONS: The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home.
1999
Parker D; Maddocks I; Stern LM
Journal Of Paediatrics And Child Health
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1046/j.1440-1754.1999.00351.x" target="_blank" rel="noreferrer">10.1046/j.1440-1754.1999.00351.x</a>
Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy
Internship and Residency; Pain/dt [Drug Therapy]; Palliative Care; Pediatrics/ed [Education]; Terminal Care; Adult; Child; Female; Humans; Italy; Male; Middle Aged; Needs Assessment; Palliative Care/st [Standards]; Palliative Care/td [Trends]; Surveys and Questionnaires; Terminal Care/st [Standards]; Terminal Care/td [Trends]
UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. CONCLUSION: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training.
Rusalen F; Ferrante A; Po C; Salata M; Agosto C; Benini F
European Journal Of Pediatrics
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00431-014-2304-8" target="_blank" rel="noreferrer">10.1007/s00431-014-2304-8</a>
Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life
Disabled Children/px [Psychology]; Palliative Medicine/st [Standards]; Terminal Care/st [Standards]; Vulnerable Populations/px [Psychology]; Child; Humans; Palliative Medicine/mt [Methods]; Terminal Care/mt [Methods]
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
Viallard ML
Culture, Medicine & Psychiatry
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s11013-013-9355-6" target="_blank" rel="noreferrer">10.1007/s11013-013-9355-6</a>
Key Factors Affecting Dying Children And Their Families
Bereavement; Family/px [psychology]; Palliative Care/st [standards]; Professional-family Relations; Quality Of Health Care; Terminal Care/st [standards]; Adolescent; Bereavement; Child; Communication; Decision Making; Humans; Only Child; Stress Psychological/et [etiology]; Terminal Care
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care. [References: 75]
Hinds PS; Schum L; Baker J; Wolfe J
Journal Of Palliative Medicine
2005
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10.1089/jpm.2005.8.s-70
Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care
Parents/px [psychology]; Pediatrics; Social Workers/px [psychology]; Terminal Care/es [ethics]; Terminal Care/px [psychology]; Decision Making; Family; Health Personnel/px [psychology]; Humans; Interviews As Topic; Professional-family Relations; Terminal Care/st [standards]; Withholding Treatment/es [ethics]
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.
Thieleman KJ; Wallace C; Cimino AN; Rueda HA
Journal of Social Work in End-of-life and Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/15524256.2016.1200518">10.1080/15524256.2016.1200518</a>