Pediatric Nurses' Perceived Competencies toward Palliative Care for Terminally Ill Children
palliative care; Terminal Care; Pediatric Nursing; Terminally Ill; Terminally ill children; Nurses' competency
INTRODUCTION: Paediatric palliative care involves the physical, psychological, and spiritual well-being of terminally ill children and their families. Competency in palliative care centred on personal traits and attributes, key abilities to satisfy professional duty through practise, and knowledge of palliative care. OBJECTIVE: Is to identify paediatric nurses' perceived Competencies toward Palliative Care for Terminally Ill Children. METHOD: Used was a descriptive research design. The sample included 72 nurses who worked at neonatal, pediatric intensive care units ( NICU, PICU) in four hospitals affiliated to Universal Health Insurance (UHI) in Port Said City, namely ( El Nasr, El Salam, El Hayah, and pain outpatient clinic at El Tadamon) hospital. The structured questionnaire and the nursing palliative care quiz are the first tools used to evaluate sociodemographic characteristics. Data were gathered using a second tool, the Nurses' Core Competencies in Palliative Care questionnaire. RESULTS: Based on the study, 56.9% of nurses had adequate knowledge, and 47.2% of paediatric nurses agreed that they had some extendable palliative care competences.It can be summarized that more than sighlty half of the studied sample have adequate knowledge while the rest of the studied sample have inadequate knowledge,with statistically significant relationship between nurses' overall perceived competence and overall knowledge. CONCLUSION: The relationship between nurses' overall perceived competence and overall knowledge was very statistically significant. The Recommendation study's findings highlight the urgent need of creating an evidence-based programme for competency training in palliative care, which should be available in every hospital and adhered to all paediatric nurses.
Farrag JM; Ibrahim AM; Anwr DB; Ibrahim Ibrahim NM; Saadoon MM
Asian Pacific Journal of Cancer Prevention
2023
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<a href="http://doi.org/10.31557/apjcp.2023.24.9.3275" target="_blank" rel="noreferrer noopener">10.31557/apjcp.2023.24.9.3275</a>
The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers
Humans; Parents; Child; Palliative Care; Adult; Qualitative Research; Health Personnel; Palliative Care; Terminally Ill; Terminally Ill; Terminally ill children; Dignity; Mainland China; Pediatric Palliative care; Respect
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.
Cai S; Guo Q; Lin J; Deng C; Li H; Zhou X
BMC Palliative Care
2023
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/10.1186/s12904-023-01206-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01206-4</a>
Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
Nursing Staff; Palliative Care; Child; Cross-Sectional Studies; Education; Nursing; Female; Human; Infant; Newborn; Male; Palliative Care; Surveys and Questionnaires; Terminally Ill
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative care for neonatal children is a lack of training for nurses. Aim: The aim of this research is to investigate the experiences of nurses who provide care for neonates who are terminally ill as well as their educational requirements for neonatal palliative care. METHOD: A cross-sectional descriptive study was conducted among 200 nurses working in a tertiary center providing care for terminally ill neonates in Saudi Arabia. Data was collected from using Neonatal Palliative Care Questionnaire (QNPC) from January 2021 to March 2021. RESULTS: Two hundred nurses were surveyed (the response rate was 79%). The mean age of the 158 participants was 35.67 (standard deviation (SD): 7.43), and the majority were female (151; 95.6%). The majority were bachelor's holders (119; 75.3%), with more than 5 years of experience in providing care for neonates (100; 63.3%). Most of the participants reported not receiving any education about palliative care (115; 72.8%). Nurses reported a moderate level of experience in all areas of neonatal palliative care. The total mean score of palliative care experiences of neonates was 3.42 (SD: 1.35). However, the majority of nurses reported little experience discussing the transition period to palliative care for neonates 2.95 (SD: 1.93), the discussion of code status (DNR) during terminal illness of neonates 3.11 (SD: 1.54) and spiritual support 2.90 (SD: 1.55). CONCLUSION: The assessment of the fundamental skills of neonatal palliative care by nurses was insufficient. To enhance the quality of care, it is crucial to incorporate education on neonatal palliative care into programs for nursing staff development.
Khraisat OM; Al-Bashaireh AM; Khafajeh R; Alqudah O
PLoS One
2023
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<a href="http://doi.org/10.1371/journal.pone.0280081" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0280081</a>
Update on the palliative care approach at the pediatric intensive care unit
Child; Communication; Humans; Intensive Care Units; Palliative Care; Pediatric; Quality of Life; Terminally Ill; Critical Care; Palliative Care; Terminal Care
Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.
García-Salido A; Navarro-Mingorance Á; Martino-Alba R; Nieto-Moro M
Archivos Argentinos de Pediatria
2022
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<a href="http://doi.org/10.5546/aap.2022.eng.e255" target="_blank" rel="noreferrer noopener">10.5546/aap.2022.eng.e255</a>
Describing the Psychosocial Profile and Unmet Support Needs of Parents Caring for a Child with a Life-Limiting Condition: A Cross-Sectional Study of Caregiver-Reported Outcomes
caregiver; terminally ill; quality of life; paediatrics; Palliative care; stress; psychological
BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. AIM: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. DESIGN: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. SETTING/PARTICIPANTS: Parents currently caring for one or more children (18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). RESULTS: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = -.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. CONCLUSIONS: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
Collins A; Burchell J; Remedios C; Thomas K
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216319892825" target="_blank" rel="noreferrer noopener">10.1177/0269216319892825</a>
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
Child; Child Preschool; Cross Infection/prevention & control; Cross-Sectional Studies; Drug Resistance Multiple; Female; Hospital Units; Humans; Hygiene; Infant; Infection Control/organization & administration; Inservice Training; Interviews as Topic; Male; Nursing Assessment; Paediatrics; Palliative care; Palliative Care; Parents; Patient Isolation; Patient Safety; Quality of Life; Social Participation; Stereotyping; Surveys and Questionnaires; Terminally Ill
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.
Schmidt P; Hartenstein-Pinter A; Hasan C; Stening K; Zernikow B; Wager J
International Journal of Palliative Nursing
2021
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<a href="http://doi.org/10.12968/ijpn.2021.27.1.10" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.10</a>
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Infant; Adolescent; Child; Female; Humans; Male; Child Preschool; Infant Newborn; Research Design; Terminally Ill; Ethics Committees Research; Human Experimentation/ethics; content analysis; United Kingdom; research; ethics committees
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters. SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
Butler AE; Vincent K; Bluebond-Langner M
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216319885566" target="_blank" rel="noreferrer noopener">10.1177/0269216319885566</a>
COVID-19 Pandemic Restrictions and the Use of Technology for Pediatric Palliative Care in the Acute Care Setting
Infant; Female; Humans; Parents; Intensive Care Units Pediatric; Hospice and Palliative Care Nursing; Terminally Ill; Palliative Care; Videoconferencing; Infection Control; Pandemics; Betacoronavirus; Visitors to Patients; Coronavirus Infections/epidemiology; Pneumonia Viral/epidemiology
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical condition or is terminally ill. These situations have necessitated the use of technology such as the Zoom platform to have difficult conversations concerning complex medical decision-making and goals of care. In cases where the child is deemed at immediate end of life, many facilities will allow both parents to be at the bedside, but no other family or friends that may be integral support to the parents or child. These situations have compelled the use of FaceTime, Zoom, or Skype technology to facilitate real-time support at end of life for these young patients and their caregivers. This article presents a case where technologies such as these were utilized to assist a family in goals-of-care discussions and at end of life for an infant in the intensive care unit at a large urban pediatric care facility during the COVID-19 pandemic.
Bettini EA
Journal of Hospice and Palliative Nursing
2020
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<a href="http://doi.org/10.1097/njh.0000000000000694" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000694</a>
Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Decision Making; Terminally Ill; Child; Children; Decision-Making; End-of-Life; Ethics of Care; Female; Gillick Competence; Guidelines as Topic; Humans; Informed Consent By Minors/ethics/legislation & jurisprudence; Mental Competency/legislation & jurisprudence; Palliative Care/ethics; Parents; Personal Autonomy; Terminal Care/ethics; Treatment Refusal; Treatment Refusal/ethics/legislation & jurisprudence; United Kingdom
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
Moreton KL
Medical Law Review
2020
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<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">10.1093/medlaw/fwz011</a>
Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature
Terminally Ill; Transition to Adult Care; Adolescent; Adult; Child; Humans; Young Adult
BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for both young adults and service providers, with complex transition interventions interacting in unpredictable ways with local contexts. OBJECTIVES: To explain how intervention processes interact with contextual factors to help transition from children's to adult services for young adults with life-limiting conditions. DESIGN: Systematic realist review of the literature. DATA SOURCES: Literature was sourced from four electronic databases: Embase, MEDLINE, Science Direct and Cochrane Library from January 1995 to April 2016. This was supplemented with a search in Google Scholar and articles sourced from reference lists of included papers. REVIEW METHODS: Data were extracted using an adapted standardised data extraction tool which included identifying information related to interventions, mechanisms, contextual influences and outcomes. Two reviewers assessed the relevance of papers based on the inclusion criteria. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tools. RESULTS: 78 articles were included in the review. Six interventions were identified related to an effective transition to adult services. Contextual factors include the need for children's service providers to collaborate with adult service providers to prepare an environment with knowledgeable staff and adequate resources. Mechanisms triggered by the interventions include a sense of empowerment and agency amongst all stakeholders. CONCLUSIONS: Early planning, collaboration between children's and adult service providers, and a focus on increasing the young adults' confidence in decision-making and engaging with adult services, are vital to a successful transition. Interventions should be tailored to their context and focused not only on organisational procedures but on equipping young adults, parents/carers and staff to engage with each other effectively.
Kerr H; Price J; Nicholl H; O'Halloran P
International Journal of Nursing Studies
2017
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<a href="http://doi.org/10.1016/j.ijnurstu.2017.06.013" target="_blank" rel="noreferrer noopener">10.1016/j.ijnurstu.2017.06.013</a>
Predictive factors for do-not-resuscitate designation among terminally ill cancer patients receiving care from a palliative care consultation service.
Female; Humans; Male; Prognosis; Aged; Middle Aged; Sex Factors; Multivariate Analysis; Time Factors; retrospective studies; DNAR; Taiwan; Resuscitation Orders; Palliative Care; Neoplasms/th [Therapy]; referral and consultation; Terminally Ill; Family/px [Psychology]; Liver Neoplasms/di [Diagnosis]; Liver Neoplasms/pp [Physiopathology]; Liver Neoplasms/px [Psychology]; Liver Neoplasms/th [Therapy]; Neoplasms/di [Diagnosis]; Neoplasms/pp [Physiopathology]; Neoplasms/px [Psychology]; Resuscitation Orders/px [Psychology]; Terminally Ill/px [Psychology]
CONTEXT: Since the development of palliative care in the 1980s, "do not resuscitate" (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients., OBJECTIVES: This study aimed to evaluate the effect of a palliative care consultation service (PCCS) on DNR designation and to identify a subgroup of patients who would potentially benefit from care by the PCCS with respect to DNR designation., METHODS: In total, 2995 terminally ill cancer patients (with a predicted life expectancy of less than six months by clinician estimate) who received care by the PCCS between January 2006 and December 2010 at a single medical center in Taiwan were selected. Among these, the characteristics of 2020 (67.4%) patients who were not designated as DNR at the beginning of care by the PCCS were retrospectively analyzed to identify variables pertinent to DNR designation., RESULTS: A total of 1301 (64%) of 2020 patients were designated as DNR at the end of care by the PCCS. Male gender and primary liver cancer were characteristics more predominantly found among DNR-designated patients who also had worse performance status, higher prevalence of physical distress, and shorter intervals from palliative care referral to death than did patients without DNR designation. On univariate analysis, a higher probability of DNR designation was associated with male gender, duration of care by the PCCS of more than 14 days, patients' prognostic awareness, family's diagnostic and prognostic awareness, and high Palliative Prognostic Index (PPI) scores. On multivariate analysis, duration of care by the PCCS, patients' prognostic awareness, family's diagnostic and prognostic awareness, and a high PPI score constituted independent variables predicting DNR-designated patients at the end of care by the PCCS., CONCLUSION: DNR designation was late in terminally ill cancer patients. DNR-designated cancer patient indicators were high PPI scores, patients' prognostic awareness, family's diagnostic and prognostic awareness, and longer durations of care by the PCCS.Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
2014
Kao Chen-Yi; Wang Hung-Ming; Tang Shu-Chuan; Huang K-G; Jaing T-H; Liu Chien-Ying; Liu Keng-Hao; Shen W-C; Wu Jin-Hou; Hung Y-S; Hsu H-C; Chen JS; Liau Chi-Ting; Lin Yung-Chang; Su Po-Jung; Hsieh C-H; Chou WC
Journal Of Pain And Symptom Management
2014
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.03.020" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.03.020</a>
A charter for the rights of the dying child
Child; Humans; Terminal Care; Terminally Ill; Child Advocacy
2014-05
Benini F; Vecchi R; Orzalesi M
Lancet
2014
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Journal Article
<a href="http://doi.org/10.1016/S0140-6736(14)60746-7" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)60746-7</a>
Disclosing terminal diagnosis to children and their families: palliative professionals' communication barriers
Humans; Terminally Ill; Communication Barriers; Professional-Patient Relations; Palliative Care
Few studies have fully explored the problem of communication barriers in pediatric palliative care, particularly the detrimental effects of poor interaction between staff and families on children's health and well-being. A literature review was undertaken to expand the current body of knowledge about staff to patient communications. Articles meeting the inclusion criteria (N = 15) were systematically read and summarized using a data extraction sheet. A narrative synthesis identified 5 overarching themes as barriers to communication. Improvements in staff education and individualized palliative care plans for children and their families may help to overcome communication barriers.
2014-06
Coad J; Patel R; Murray S
Death Studies
2014
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Journal Article
<a href="http://doi.org/10.1080/07481187.2012.753555" target="_blank" rel="noreferrer">10.1080/07481187.2012.753555</a>
Rights of the child: to die?
Child; Humans; Terminally Ill; Euthanasia; Child Advocacy; Europe; Patient Rights
The legal position of the child as a vulnerable individual requires us as a society to treat them with special consideration in regard to the sanctity of life. In UK law, euthanasia is currently illegal, although there are some moves afoot to have this changed for those who have reached majority (18 years of age in the UK).
2014-04
Gormley-Fleming Liz; Campbell A
British Journal Of Nursing
2014
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Journal Article
<a href="http://doi.org/10.12968/bjon.2014.23.6.302" target="_blank" rel="noreferrer">10.12968/bjon.2014.23.6.302</a>
Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children?
adolescent; Child; Humans; Terminally Ill; referral and consultation; Euthanasia; Health Services Needs and Demand; Belgium; Freedom
2014-06
Friedel M
International Journal Of Palliative Nursing
2014
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2014.20.6.265" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.6.265</a>
Decision aids for advance care planning: an overview of the state of the science.
Humans; Terminally Ill; Prognosis; Internet; advance care planning; Decision Support Techniques
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.
2014-09
Butler M; Ratner E; McCreedy E; Shippee N; Kane RL
Annals Of Internal Medicine
2014
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Journal Article
<a href="http://doi.org/10.7326/M14-0644" target="_blank" rel="noreferrer">10.7326/M14-0644</a>
Suffering indicators in terminally ill children from the parental perspective
Child; Female; Humans; Male; Neoplasms; Terminal Care; Terminally Ill; Adult; Parent-Child Relations; Parents; Interviews as Topic; Attitude to Death; Qualitative Research; Spain; Stress; quality of life; Adaptation; Psychological
PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their perspectives on suffering, in order to provide initial understanding from which to develop observational indicators and further research. METHODS: Qualitative descriptive study with semi-structured interviews made "ad hoc". Selection through deliberate sampling of mothers and fathers of hospitalised children (0-16 years old) with a terminal illness in Granada (Spain). KEY RESULTS: 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy, and anger towards their parents and the professionals. The isolation from their natural environment, the uncertainty towards the future, and the anticipation of pain caused suffering in children. The pain is experienced as an assault that their parents allow to occur. CONCLUSIONS: The analysis of the interview with the parents about their perception of their ill children's suffering at the end of their lives is a valuable source of information to consider supportive interventions for children and parents in health care settings. An outline summary of the assessed aspects of suffering, the indicators and aspects for health professional consideration is proposed.
2013-12
Montoya-Juárez R; García-Caro MP; Schmidt-Rio-Valle J; Campos-Calderón C; Sorroche-Navarro C; Sánchez-García R; Cruz-Quintana F
European Journal Of Oncology Nursing: The Official Journal Of European Oncology Nursing Society
2013
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Journal Article
<a href="http://doi.org/10.1016/j.ejon.2013.04.004" target="_blank" rel="noreferrer">10.1016/j.ejon.2013.04.004</a>
Siblings Caring for and about Pediatric Palliative Care Patients
adolescent; Child; Female; Humans; Male; Young Adult; Palliative Care; Terminally Ill; Siblings; Communication; caregivers; Qualitative Research; New Zealand; Preschool; Psychological; Grief; Anticipation
Abstract Background: The experiences of young people who have siblings with life-limiting illnesses are not well understood. Aim: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Design and Measurement: Semistructured interviews were administered to participants and analyzed using qualitative inductive thematic analysis. Setting and Participants: Study subjects were 18 siblings of PPC patients aged 9 to 22 living in the Auckland area. Results: The siblings of PPC patients held concerns about their siblings' impending death and desires to be involved in their lives and care. Conclusions: Siblings may benefit from opportunities to be involved in conversations about mortality and the care of their ill sibling. They are able to express their concerns and help provide care to PPC patients.
2013-12
Gaab EM; Owens GR; Macleod RD
Journal Of Palliative Medicine
2013
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0117" target="_blank" rel="noreferrer">10.1089/jpm.2013.0117</a>
A mother's perspective: the power of holistic care for the terminally ill child
Child; Humans; mothers; Terminal Care; Terminally Ill; Family; Adult; Mother-Child Relations; Life Change Events; Hospitals; Leukemia; Holistic Nursing; Altruism; Pediatric; Gift Giving
This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.
2013-04
Dolan P
Holistic Nursing Practice
2013
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/10.1097/HNP.0b013e318280f83c" target="_blank" rel="noreferrer">10.1097/HNP.0b013e318280f83c</a>
Predicting death in children
Child; Female; Humans; Male; Terminally Ill; Attitude to Death; Preschool; Parents/psychology; Life Expectancy; Palliative Care/methods/standards; Professional-Family Relations/ethics
Rarely do paediatric palliative medicine physicians have to break the news of a diagnosis of a life-limiting condition. It is much commoner for us to be faced with the question: "how long?". This cannot be answered with certainty, and yet a great deal may depend on it. While palliative care should ideally be available from diagnosis, the need for "active" practical palliative care intervention will fluctuate during the course of a child's illness, often over months or years, sometimes decades. Typically, there will be several periods during which death seems likely before the final terminal episode, particularly among children with non-malignant life-limiting condition. Optimal management of all episodes depends on anticipating the child's needs, which in turn depends on recognising that such an episode has begun. Providing adequate palliative care critically depends on making a diagnosis of dying. In this article, we will consider why it is important to make a diagnosis of dying, briefly review some of the helpful tools available, and examine some of the evidence from published literature in children and adults.
2008
Brook L; Hain R
Archives Of Disease In Childhood
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/10.1136/adc.2007.127332" target="_blank" rel="noreferrer">10.1136/adc.2007.127332</a>
Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service
Child; Humans; Terminally Ill; Critical Illness; Family Health; Western Australia; patient care team; Q3 Literature Search; Parents/psychology; social support; Quality of Health Care/organization & administration/standards; Community Health Nursing/organization & administration/standards; Palliative Care/organization & administration/psychology/standards
OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.
2007
Monterosso L; Kristjanson LJ; Aoun S; Phillips MB
Palliative Medicine
2007
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/10.1177/0269216307083032" target="_blank" rel="noreferrer">10.1177/0269216307083032</a>
Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study
Child; Humans; Terminally Ill; Family; Attitude of Health Personnel; Focus Groups; Needs Assessment; Delphi Technique; Scotland; adolescent; Palliative Care/organization & administration; Charting the Territory; Research/organization & administration; Hospice Care/organization & administration
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research priorities for children's hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children's hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritized research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children's hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children's hospice and palliative care research and optimise the delivery of children's hospice services that are underpinned by valid and robust research.
Malcolm C; Knighting K; Forbat L; Kearney N
Palliative Medicine
2009
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/10.1177/0269216309104061" target="_blank" rel="noreferrer">10.1177/0269216309104061</a>
Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed
Child; Humans; United States; Terminally Ill; Great Britain; Adult; Prospective Studies; adolescent; Preschool; Caregivers/psychology; decision making; infant; Parents/psychology; Neoplasms/therapy
PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients, and staff, including participant-observation; open-ended, semistructured interviews; and review of medical records at a US and UK pediatric oncology center. Thirty-four children (n = 17 US, 17 UK), whose disease had recurred with less than 30% chance of cure, were enrolled between March 2001 and June 2002 and followed until death (n = 11 US, 14 UK) or close of study in December 2005 (n = 6 US, 3 UK). RESULTS: There were no major differences between parents' approaches in the US and UK despite differences in health care systems, institutions, and parents' religion or ethnicity. All parents continued to have or request meetings with the oncologist and investigative procedures. No parent initiated discontinuation of cancer- or symptom-directed interventions. In 28 of 34 cases (13 US, 15 UK), parents continued to pursue cancer-directed therapies; in 16 of 28 cases (seven US, nine UK), parents initiated inquires beyond what was offered. CONCLUSION: Understanding parents' behavior requires attention to the reason and emotion they bring to decision making and their children's care, their unique responsibilities as parents, and what they learn throughout the illness. Parents do not see cancer-directed therapy and symptom-directed care as mutually exclusive, alternative approaches. Parents will not be constrained by what the oncologist offers. Physicians and parents discuss and negotiate care and treatment throughout the illness. Our findings suggest developing integrative care models incorporating cancer-directed, symptom-directed, and supportive care throughout the illness; they are most consistent with parents' approaches and advances in pediatric oncology.
2007
Bluebond-Langner M; Belasco JB; Goldman A; Belasco C
Journal Of Clinical Oncology
2007
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Journal Article
<a href="http://doi.org/10.1200/JCO.2006.08.7759" target="_blank" rel="noreferrer">10.1200/JCO.2006.08.7759</a>
Advanced illness index: Predictive modeling to stratify elders using self-report data
Female; Humans; Male; Terminally Ill; Aged; Severity of Illness Index; Risk Assessment; Self Disclosure; Forecasting; 80 and over; Models; retrospective studies; Health Surveys; Theoretical
OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study with a 3-year observation period. SETTING: Integrated, not-for-profit managed care organization. Participants: Beneficiaries aged 65-105 responding to an annual survey (n = 4888). MEASUREMENTS: Survey instrument includes physical function, geriatric syndromes, health care utilization, special equipment use, self-care deficits, caregiving responsibilities, and general health problems. RESULTS: An 11-variable model changed the baseline chi2 from 315.71 (df = 1) to 742.511 (df = 11). The percent of subjects correctly classified was 74.3% and the negative predictive value was 92.2%. CONCLUSION: Advanced Illness Index (AII) model is stable. Characteristic variables used are not easily reversed: the 1997 cohort classified as at-risk consistently remained at risk or died in the subsequent years (1998, 92%; and 1999, 96%) and 92% of those not at-risk survived the next 36 months. Persons at high risk should at a minimum be made aware of the types of integrated home and community-based services available to them should it be needed. They also should be targeted for elicitation of treatment preferences, values, designation of health care proxy, planning, and advanced care directives.
2006
Brody KK; Perrin NA; Dellapenna R
Journal Of Palliative Medicine
2006
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/10.1089/jpm.2006.9.1310" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1310</a>
Parents' reactions to participating in interviews about end-of-life decision making
Child; Female; Humans; Male; United States; Terminally Ill; Adult; Interviews; decision making; ICU Decision Making; Parents/psychology; child mortality
BACKGROUND: Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision making for critically ill children. OBJECTIVE: To examine the reactions of pediatric intensive care unit (PICU) patients' parents to interviews on end-of-life decision making for their child. METHODS: We conducted semistructured interviews on end-of-life decision making with PICU patients' parents from two tertiary care PICUs. We approached 117 parents of 102 patients. Seventy-four parents (63%) of 69 patients participated. RESULTS: Forty-three parents (61%) described the interview as "a good experience," 20 (29%) as "a neutral experience," and 1 (1%) as "a bad experience." The parent who judged the interview negatively stated that, "It bothers me a little bit because my son is [out] there having difficulties and I'm in here and not out there." Fifty-four of 59 parents (92%) said they would participate in another similar interview. Most parents (92%) felt the medical community should continue research on end-of-life decision making. Themes identified from the responses included: emotional reaction to the interviews; exposure to end-of-life decision-making issues; impact on parents' views; and impact on future end-of-life decision making. Parents' comments suggested that many perceived the interviews as beneficial. CONCLUSIONS: This study demonstrates the willingness of many parents of critically ill children to participate in study interviews regarding end-of-life decision making, a topic that most parents felt was important and warranted more research.
2006
Michelson KN; Koogler TK; Skipton K; Sullivan C; Frader JE
Journal Of Palliative Medicine
2006
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Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.1329" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1329</a>
Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature
Humans; Survival Rate; Terminally Ill; Practice Guidelines as Topic; Communication; Treatment Outcome; Decision Support Techniques; Research Design; Risk Factors; Patient Selection; Activities of Daily Living; Evidence-Based Medicine; Patient Education as Topic; quality of life; Nutritional Status; Nutrition Assessment; Enteral Nutrition/adverse effects/methods/utilization; Malnutrition/etiology/therapy; Neoplasms/complications/mortality/psychology; Parenteral Nutrition/adverse effects/methods/utilization; Terminal Care/methods/psychology/utilization
Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer, rather than the cause of decreasing functional status, and providing supplemental nutrition rarely changes the course of the disease. This article reviews evidence on issues relevant to enteral and parenteral nutrition in patients with advanced cancer, including benefits, risks, and discomforts; how these types of nutrition are used and perceived, and how decisions are made; and how decision-making might be improved.
2006
Dy SM
The American Journal Of Hospice & Palliative Care
2006
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Journal Article
<a href="http://doi.org/10.1177/1049909106292167" target="_blank" rel="noreferrer">10.1177/1049909106292167</a>
Parental suicide after the expected death of a child at home
Child; Female; Humans; Male; Terminally Ill; Adult; PedPal Lit; infant; Grief; Death; Mothers/psychology; Suicide/psychology
2006
Davies DE
Bmj
2006
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Journal Article
Patterns of functional decline at the end of life
Female; Humans; Male; Terminally Ill; Cohort Studies; Interviews as Topic; Aged; Death; Activities of Daily Living; Frail Elderly; Epidemiologic Methods; Multiple Organ Failure/physiopathology; Neoplasms/physiopathology; Sudden
CONTEXT: Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations. OBJECTIVE: To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty. DESIGN, SETTING, AND PARTICIPANTS: Cohort analysis of data from 4 US regions in the prospective, longitudinal Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. Of the 14 456 participants aged 65 years or older who provided interviews at baseline (1981-1987), 4871 died during the first 6 years of follow-up; 4190 (86%) of these provided interviews within 1 year before dying. These decedents were evenly distributed in 12 cohorts based on the number of months between the final interview and death. MAIN OUTCOME MEASURES: Self- or proxy-reported physical function (performance of 7 activities of daily living [ADLs]) within 1 year prior to death; predicted ADL dependency prior to death. RESULTS: Mean function declined across the 12 cohorts, simulating individual decline in the final year of life. Sudden death decedents were highly functional even in the last month before death (mean [95% confidence interval [CI]] numbers of ADL dependencies: 0.69 [0.19-1.19] at 12 months before death vs 1.22 [0.59-1.85] at the final month of life, P =.20); cancer decedents were highly functional early in their final year but markedly more disabled 3 months prior to death (0.77 [0.30-1.24] vs 4.09 [3.37-4.81], P<.001); organ failure decedents experienced a fluctuating pattern of decline, with substantially poorer function during the last 3 months before death (2.10 [1.49-2.70] vs 3.66 [2.94-4.38], P<.001); and frail decedents were relatively more disabled in the final year and especially dependent during the last month (2.92 [2.24-3.60] vs 5.84 [5.33-6.35], P<.001). After controlling for age, sex, race, education, marital status, interval between final interview and death, and other demographic differences, frail decedents were more than 8 times more likely than sudden death decedents to be ADL dependent (OR, 8.32 [95% CI, 6.46-10.73); cancer decedents, one and a half times more likely (OR, 1.57 [95% CI, 1.25-1.96]); and organ failure decedents, 3 times more likely (OR, 3.00 [95% CI, 2.39-3.77]). CONCLUSIONS: Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.
2003
Lunney JR; Lynn J; Foley DJ; Lipson S; Guralnik JM
Jama
2003
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Journal Article
<a href="http://doi.org/10.1001/jama.289.18.2387" target="_blank" rel="noreferrer">10.1001/jama.289.18.2387</a>
Place of death: preferences among cancer patients and their carers
Female; Humans; Male; Terminally Ill; Cohort Studies; Great Britain; Adult; Aged; Middle Aged; Attitude to Death; Longitudinal Studies; Patient Satisfaction; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Comparative Study; location of death; Neoplasms/mortality/therapy; Hospice Care/standards/trends
The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2-4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.
2004
Thomas C; Morris SM; Clark D
Social Science & Medicine
2004
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Journal Article
<a href="http://doi.org/10.1016/j.socscimed.2003.09.005" target="_blank" rel="noreferrer">10.1016/j.socscimed.2003.09.005</a>
Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life
Humans; Terminally Ill; Risk Assessment; Research; Ethics; Palliative Care/ethics; Biomedical and Behavioral Research
Research in end-of-life care is constrained more by pragmatic, social, cultural, and financial constraints than ethical issues that preclude the application of typical research methodologies. When normally accepted and ethically sound protections for subjects (especially for those who lack independent decision-making) are in place, exclusion of patients with far advanced disease from research is in and of itself unethical. Involvement in research may have a therapeutic, anticomiogenic effect on dying patients and their families. Institutional review boards must be educated to evaluate research protocols involving this group of vulnerable patients with an eye toward assuring that ethical safeguards are in place, conflicts of interest are transparent and minimized, and that the proposed methodology has duly considered all practical exigencies so that resources and peoples' time and emotional investments are not squandered. Investigators and research review committees must be knowledgeable about placebo effects and under what types of circumstances their use is justifiable, preferred or requisite to fulfill both ethical and scientific imperatives. Examples of investigations using various research methodologies, along with their respective ethical considerations are provided.
2003
Fine PG
Journal Of Pain And Symptom Management
2003
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(03)00056-3" target="_blank" rel="noreferrer">10.1016/s0885-3924(03)00056-3</a>
Voluntariness in clinical research at the end of life
Humans; Terminally Ill; Research; Ethics; Biomedical and Behavioral Research; Multi-site Ethics; Human Experimentation/ethics
Voluntariness is a requirement that is frequently voiced in research ethics but is poorly understood. This article seeks to clarify voluntariness and assess its significance in clinical research at the end of life. First, what voluntariness is and why we consider it important is considered. Next, where voluntariness fits in the overall context of making clinical research ethical is clarified. Finally, the murky terms "vulnerability," "exploitation," and "coercion" are clarified and their relationship to voluntariness examined. The danger of using some of these terms is that they carry a lot of moral weight and labeling patients as "vulnerable" or "coerced" can close off conversation because they are reflexively associated with unethical research. Finally, correctly characterized threats to voluntariness are examined and ways to ameliorate them are presented.
2003
Agrawal M
Journal Of Pain And Symptom Management
2003
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(03)00057-5" target="_blank" rel="noreferrer">10.1016/s0885-3924(03)00057-5</a>
Talking about death with children who have severe malignant disease
Child; Female; Humans; Male; Terminally Ill; Adult; Parent-Child Relations; Logistic Models; Death; Truth Disclosure; Sweden; Chi-Square Distribution; adolescent; Preschool; bereavement; Parents/psychology; Neoplasms
BACKGROUND: One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child. METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire, and 429 stated whether or not they had talked about death with their child. RESULTS: None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0). The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it. CONCLUSIONS: Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.
2004
Kreicbergs U; Valdimarsdottir U; Onelov E; Henter JI; Steineck G
New England Journal Of Medicine
2004
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Journal Article
<a href="http://doi.org/10.1056/NEJMoa040366" target="_blank" rel="noreferrer">10.1056/NEJMoa040366</a>
A systematic review of physicians' survival predictions in terminally ill cancer patients.
Humans; Terminally Ill; Survival Analysis; Longitudinal Studies; Reproducibility of Results; Analysis of Variance; Regression Analysis; Empirical Approach; Death and Euthanasia; decision making; Charting the Territory; Neoplasms/mortality; Clinical Competence/standards; Physicians/standards
OBJECTIVE: To systematically review the accuracy of physicians' clinical predictions of survival in terminally ill cancer patients. DATA SOURCES: Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand searching. STUDY SELECTION: Studies were included if a physician's temporal clinical prediction of survival (CPS) and the actual survival (AS) for terminally ill cancer patients were available for statistical analysis. Study quality was assessed by using a critical appraisal tool produced by the local health authority. DATA SYNTHESIS: Raw data were pooled and analysed with regression and other multivariate techniques. RESULTS: 17 published studies were identified; 12 met the inclusion criteria, and 8 were evaluable, providing 1563 individual prediction-survival dyads. CPS was generally overoptimistic (median CPS 42 days, median AS 29 days); it was correct to within one week in 25% of cases and overestimated survival by at least four weeks in 27%. The longer the CPS the greater the variability in AS. Although agreement between CPS and AS was poor (weighted kappa 0.36), the two were highly significantly associated after log transformation (Spearman rank correlation 0.60, P < 0.001). Consideration of performance status, symptoms, and use of steroids improved the accuracy of the CPS, although the additional value was small. Heterogeneity of the studies' results precluded a comprehensive meta-analysis. CONCLUSIONS: Although clinicians consistently overestimate survival, their predictions are highly correlated with actual survival; the predictions have discriminatory ability even if they are miscalibrated. Clinicians caring for patients with terminal cancer need to be aware of their tendency to overestimate survival, as it may affect patients' prospects for achieving a good death. Accurate prognostication models incorporating clinical prediction of survival are needed.
2003
Glare P; Virik K; Jones M; Hudson M; Eychmuller S; Simes J; Christakis NA
Bmj (clinical Research Ed.)
2003
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Journal Article
<a href="http://doi.org/10.1136/bmj.327.7408.195" target="_blank" rel="noreferrer">10.1136/bmj.327.7408.195</a>
Consensus guidelines on analgesia and sedation in dying intensive care unit patients
Humans; Intensive Care Units; Terminally Ill; Consensus; Euthanasia; Suicide; Stress; Empirical Approach; Death and Euthanasia; Practice Guidelines; Pain/drug therapy; Active; Hypnotics and Sedatives/therapeutic use; Assisted; Terminal Care/standards; Psychological/drug therapy; Analgesics/therapeutic use; Palliative Care/methods/standards
BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. METHODS: Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). RESULTS: After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. CONCLUSION: Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.
2002
Hawryluck LA; Harvey WR; Lemieux-Charles L; Singer PA
Bmc Medical Ethics
2002
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Journal Article
<a href="http://doi.org/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">10.1186/1472-6939-3-3</a>
Non-invasive ventilation and palliation: experience in a district general hospital and a review
Female; Humans; Male; Terminally Ill; Aged; Middle Aged; Respiration; Time Factors; Lung Diseases; Carcinoma; Respiratory Insufficiency/therapy; Artificial/ethics/methods; Emphysema/therapy; Lung Neoplasms/complications; Motor Neuron Disease/complications; Multiple Sclerosis/complications; Myeloproliferative Disorders/complications; Obstructive/therapy; Palliative Care/ethics/methods; Small Cell/complications; Syringomyelia/complications
Non-invasive ventilation (NIV) is increasingly being used in hospitals to treat respiratory failure. The use of NIV with palliative intent in a district general hospital is described and ten illustrative cases where NIV was used in an attempt to palliate symptoms or to 'buy time' are presented. The role of NIV in relieving symptoms in various conditions is reviewed and ethical aspects are considered. It is suggested that hospital palliative care teams will increasingly see patients treated by this technique as it becomes more widely used for exacerbations of chronic obstructive airways disease, for relief of breathlessness in the terminally ill and for buying time in patient management. Domiciliary teams will see increasing numbers of people with motor neurone disease and other conditions treated with NIV.
2003
Shee CD; Green M
Palliative Medicine
2003
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Journal Article
<a href="http://doi.org/10.1191/0269216303pm659oa" target="_blank" rel="noreferrer">10.1191/0269216303pm659oa</a>
Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.
Child; Female; Hospitalization; Humans; infant; Male; Palliative Care; Terminal Care; Terminally Ill; Withholding Treatment; Hospital Mortality; Length of Stay; Longitudinal Studies; Academic Medical Centers; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; retrospective studies; Hospitalized; Pain/diagnosis/drug therapy
OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children, especially pain and symptom management by the multidisciplinary pediatric care team. DESIGN: Patients in the neonatal intensive care unit, pediatric critical care unit, or general pediatric units of Vanderbilt Children's Hospital who were hospitalized at the time of death, between July 1, 2000, and June 30, 2001, were identified. Children eligible for the survey had received inpatient EOL care at the hospital for at least 24 hours before death. A retrospective medical record review was completed to describe documentation of care for these children and their families during the last 72 hours of life. RESULTS: Records of children who had received inpatient EOL care were identified (n = 105). A majority (87%) of children were in an intensive care setting at the time of death. Most deaths occurred in the pediatric critical care unit (56%), followed by the neonatal intensive care unit (31%). Pain medication was received by 90% of the children in the last 72 hours of life, and 55% received additional comfort care measures. The presence of symptoms other than pain was infrequently documented. CONCLUSIONS: The duration of hospitalization for most children dying in this inpatient setting was sufficient for provision of interdisciplinary pediatric palliative care. Management of pain and other symptoms was accomplished for many children. The documentation of pain and symptom assessment and management can be improved but requires new tools.
2004
Carter BS; Howenstein M; Gilmer MJ; et al
Pediatrics
2004
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/10.1542/peds.2003-0654-f" target="_blank" rel="noreferrer">10.1542/peds.2003-0654-f</a>
Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness
Palliative Care; Terminal Care; Terminally Ill; Patients; Research Design; Quality of Health Care; quality of life
Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care. [References: 29]
1999
Teno JM; Byock I; Field MJ
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(98)00134-1" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00134-1</a>
Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care
Child; Female; Humans; Male; Palliative Care; Terminally Ill; Adult; Data Collection; Prognosis; Attitude to Death; Regression Analysis; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Parents/psychology; Oncology at EOL; Physicians/psychology; Neoplasms/mortality/therapy
Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.Objectives To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.Design, Setting, and Participants Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.Main Outcome Measure Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.Results Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P = .04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).Conclusion Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.
2000-11
Wolfe J; Klar N; Grier HE; et al
Jama
2000
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/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">10.1001/jama.284.19.2469</a>
Lessons learned and not learned from the SUPPORT project
Hospitalization; Adult; Euthanasia; Health Care Costs; quality of life; Randomized Controlled Trials; Human; decision making; Terminally Ill; Passive
1999
Teno JM
Palliative Medicine
1999
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Journal Article
Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study
Male; Survival Rate; Cohort Studies; Prognosis; Prospective Studies; Non-U.S. Gov't; Human; Support; Terminally Ill; Clinical Competence/standards; Medical Errors/statistics & numerical data; Terminal Care/standards
OBJECTIVE: To describe doctors' prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. DESIGN: Prospective cohort study. SETTING: Five outpatient hospice programmes in Chicago. PARTICIPANTS: 343 doctors provided survival estimates for 468 terminally ill patients at the time of hospice referral. MAIN OUTCOME MEASURES: Patients' estimated and actual survival. RESULTS: Median survival was 24 days. Only 20% (92/468) of predictions were accurate (within 33% of actual survival); 63% (295/468) were overoptimistic and 17% (81/468) were overpessimistic. Overall, doctors overestimated survival by a factor of 5.3. Few patient or doctor characteristics were associated with prognostic accuracy. Male patients were 58% less likely to have overpessimistic predictions. Non-oncology medical specialists were 326% more likely than general internists to make overpessimistic predictions. Doctors in the upper quartile of practice experience were the most accurate. As duration of doctor-patient relationship increased and time since last contact decreased, prognostic accuracy decreased. CONCLUSION: Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic. The inaccuracy is, in general, not restricted to certain kinds of doctors or patients. These phenomena may be adversely affecting the quality of care given to patients near the end of life.
2000
Christakis NA; Lamont EB
Bmj
2000
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