Flourishing, religion, and burnout among caregivers working in pediatric palliative care
child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Oberholzer AE; Doolittle BR
International Journal of Psychiatry in Medicine
2024
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/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</a>
"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
child; Adolescent; Terminal Care; terminal care; adult; article; human; male; palliative therapy; aged; Europe; Australia; grief; interview; education; dying; adolescent; questionnaire; curriculum; awareness; literacy
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.
Bollig G; Graf K; Gruna H; Drexler D; Pothmann R
Children
2024
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/10.3390/children11020224" target="_blank" rel="noreferrer noopener">10.3390/children11020224</a>
The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
Bereavement; article; human; death; pediatrics; clinical practice; grief; terminal care; dying; wellbeing; comfort; resident; human relation; pediatrician; bereavement; medical education; frustration; coping behavior; work environment; posthumous care; anger; bereavement support; medical student; catharsis; gesture; loneliness
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build relationships with patients and families. One memory, among many, inspired our work to bolster and reform trainee bereavement practices. On Monday, I walked into the hospital apprehensively. I was nearing the end of a month-long rotation in the medical-surgical ICU, my first experience caring for critically ill children during residency. I heard the news from my coresident: my patient had died on Sunday. Although it was not unexpected, it still hurt all the same. It was 5:50 am when I rounded the hospital corner and approached his old room. As I peeked inside, my heart sank. Just 3 days ago, this room was full of people and things and sounds;...
Rabinowitz DG; Korus RE; Eastland SL; Bloomhardt HM
Hospital Pediatrics
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/10.1542/hpeds.2023-007225" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2023-007225</a>
"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients
child; terminal care; article; human; emotion; Internal Medicine; interview; content analysis; education; dying; physician; resident; multidisciplinary team; genetic transcription; meaning-making; care behavior; skill; witness; tension; personhood; internal medicine; learning environment; self care
BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. <br/>OBJECTIVE(S): This qualitative study aimed to characterize the experiences of residents caring for dying patients and elucidate the impact of emotional, cultural, and logistical factors on learning. <br/>METHOD(S): 6 US internal medicine and 8 pediatric residents who had cared for at least 1 dying patient completed a semi-structured one-on-one interview between 2019 and 2020. Residents described an experience caring for a dying patient including their confidence in clinical skills, emotional experience, role within the interdisciplinary team, and perspective on how to improve their education. Interviews were transcribed verbatim and investigators conducted content analysis to generate themes. <br/>RESULT(S): 3 themes (with subthemes) emerged: (1) experiencing strong emotion or tension (loss of patient personhood, emerging professional identity, emotional dissonance); (2) processing the experience (innate resilience, team support); and (3) recognition of a new perspective or skill (bearing witness, meaning making, recognizing biases, emotional work of doctoring). <br/>CONCLUSION(S): Our data suggests a model for the process by which residents learn affective skills critical to EOL care: residents (1) notice strong emotion, (2) reflect on the meaning of the emotion, and (3) crystallize this reflection into a new perspective or skill. Educators can use this model to develop educational methods that emphasize normalization of physician emotions and space for processing and professional identity formation.
Gibbon LM; Buck L; Schmidt L; Bogetz JF; Trowbridge A
American Journal of Hospice and Palliative Care
2023
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<a href="http://doi.org/10.1177/10499091231181567" target="_blank" rel="noreferrer noopener">10.1177/10499091231181567</a>
Psychosocial Support within the Context of Perinatal Palliative Care: The "SORROWFUL" Model
bereaved parents; Birth; dying; life-limiting disease; neonates; Palliative Care
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.
von der Hude K; Garten L
Children
2022
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/10.3390/children10010038" target="_blank" rel="noreferrer noopener">10.3390/children10010038</a>
The Fraught Notion of a "Good Death" in Pediatrics
childhood death; dying; end-of-life; medical decision-making; pediatrics
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, between accounts of a good death that minimally and maximally promote the dying child's interests. I propose a narrowed account of the dying child's interests, because they differ from the interests of non-dying children. Importantly, this account illustrates how disagreements at the end of a child's life are sometimes the result of a shift from a future to a present-oriented understanding of the child's interests on the part of some stakeholders but not others, and sometimes the result of a values-based disagreement about how different interests should be weighted. This brings into sharper focus the questions of for whom, and in what way, a child's death might be considered good.
Moore B
Journal of Medicine and Philosophy
2022
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/10.1093/jmp/jhac036" target="_blank" rel="noreferrer noopener">10.1093/jmp/jhac036</a>
A Spiritual Prescription to Bereaved Parents of Children Died Due to Coronavirus Disease 2019
Bereavement; Coronavirus Disease 2019; Spiritual Care; Bereavement; Coronavirus 19; Parent; Child; Child Death; Dying; Editorial; Financial Management; Grief; Healing; Health Care Personnel; Hopelessness; Human; Life History; Medical Care; Palliative Therapy; Psychosocial Care; Religion; Sudden Cardiac Death
Çaksen H
Journal of Child Science
2022
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/10.1055/s-0042-1757146" target="_blank" rel="noreferrer noopener">10.1055/s-0042-1757146</a>
Dying child and nurses' mourning
Mourning; Nurse; Child; Death; Nurse; Nurse Care; Death; Child; Anger; Care; Child; Conference Abstract; Curriculum; Demography; Dying; Education; Guilt; Hospitalized Child; Human; Pediatric Hospital; Pediatric Nurse; Questionnaire; Sadness; Theoretical Study
Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses' attitudes towards death. Method(s): Methodology: 170 nurses, working in pediatric hospital departments completed a questionnaire which included sociodemographic characteristics and information related to their previous training and clinical experience regarding death issues in general and dying children's care in particular. Result(s): 68.6% reported that the death of a child affects them very much, while 44.7% of the participants didn't feel well prepared to manage death issues. Pediatric nurses were greatly affected by children's death, expressing mainly feelings of sadness (44%), compassion (22%), guilt (22%) and anger (22%). 73% of the sample wished the hospitalized child, died when they were not present. 53.5% had been trained regarding the care of dying patients and the management of death and mourning as part of their curriculum and 21.2% had attended a relative seminar / lecture. The importance of proper and adequate education becomes particularly apparent considering that the majority of our sample either did not feel sufficiently prepared in order to deal with death and mourning, even though more than 70% of our participants had been relatively educated. Conclusion(s): The incorporation of the notions of death and care at end of life in the theoretical and practical fields of nursing will improve the quality of services offered at the end of life for patients and their families.
Zartaloudi A; Lekas C; Koutelekos I; Evangelou E; Kyritsi E
European Psychiatry
2021
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/10.1192/j.eurpsy.2021.1075" target="_blank" rel="noreferrer noopener">10.1192/j.eurpsy.2021.1075</a>
Health professionals' experiences of grief associated with the death of pediatric patients: a systematic review
Bereavement; child; dying; healthcare workers; palliative care
OBJECTIVE: The objective of this review was to synthesize the experiences of health professionals who have experienced grief as a result of a pediatric patient dying. INTRODUCTION: There has been some research into health professionals' grief experiences, but there has not been a review that synthesizes the findings of these experiences. Other related reviews have focused on prenatal, perinatal or adult deaths or the coping strategies employed by health professionals. This review highlights the complexities of experiences faced by pediatric health professionals. INCLUSION CRITERIA: Qualitative studies involving pediatric health professionals working in any healthcare setting who had experienced grief from the death of a patient were considered for inclusion. Studies were conducted in any country, at any time and published in English. METHODS: The search was conducted in PubMed, CINAHL, Embase, PsycINFO, Scopus and ProQuest Dissertations and Theses. The search was completed in January 2019. The review followed principles of meta-aggregation in line with the JBI approach. Methodological quality assessment was based on representation of participants' voices and congruence between research methodology and both research question and analysis of data. RESULTS: Meta-aggregation led to three synthesized findings from 12 qualitative studies that met the inclusion and methodological quality criteria. Studies predominantly included nurses working in a hospital, with sample sizes ranging from six to 25 participants. The synthesized findings were physical, behavioral, psychological or spiritual symptoms; compounding grief; and alleviating grief. Physical, behavioral, psychological, or spiritual symptoms highlighted the various characteristics of grief experiences by health professionals. Compounding grief was the largest synthesized finding and incorporated the various factors that contributed to a poorer experience of grief. Alleviating grief showed the limited identified factors that improved the experience of grief. Methodological quality led to synthesized findings receiving a ConQual rating of low or moderate. CONCLUSIONS: The synthesized findings from this review highlight the varied reported experience of grief in health professionals. The methodological quality and reporting of studies, however, led to decreased confidence in the synthesized findings and recommendations arising from this review. Healthcare professionals should be aware of the potential for experiencing grief when a patient dies and the compounding and alleviating factors associated with this. Further research could expand participant and language limitations, and improve methodological quality and reporting.
Barnes S; Jordan Z; Broom M
JBI Database of Systematic Reviews and Implementation Reports
2020
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<a href="http://doi.org/10.11124/jbisrir-d-19-00156" target="_blank" rel="noreferrer noopener">10.11124/jbisrir-d-19-00156</a>
Improving pediatric palliative care in a community-based setting through an ongoing education series
administrative personnel; checklist; child; clergy; comfort; community hospital; conference abstract; conversation; do not resuscitate order; dying; education; female; hospice care; human; Likert scale; major clinical study; male; needs assessment; nurse; palliative therapy; pharmacist; simulation; social worker; Texas
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hospital staff have varying experience in PPC and are unfamiliar with available resources. Absence of focused training on PPC and relative paucity of exposure to PPC necessitates an urgent need for improvement. Objective(s): 1. To understand baseline comfort of TCH-TW staff members in delivering PPC in a community-based setting and identify areas of improvement and knowledge gaps. 2. To pilot a campus wide ongoing education series that improves overall comfort and knowledge of TCH-TW staff members in delivering PPC in a community-based setting. Design/Method: An electronic survey (using a 5 point Likert scale) was sent to 350 staff members including physicians, mild-level providers, nurses, social workers, child life specialists, chaplains, pharmacists, and administrators to conduct a needs assessment. Results were analyzed to design a quarterly education series, utilizing didactic presentations, simulations, and small group discussions. Feedback tools included pre- and post-assessment questions, audience response system, and competency checklists. Result(s): One-hundred forty three participants (40%) completed the survey. Staff members reported an average score ~3.16 when asked if they felt the campus was 'palliative care friendly.' They reported a comfort level ~2.90 with regards to having end-of-life discussions with patients and their families, and a rating ~2.33 when it came to placing 'do-not-resuscitate' orders. An average comfort level ~3.28 was reported when caring for an actively dying patient and acute symptom management. Additional areas of improvement included understanding essential differences between palliative, concurrent, and hospice care (average score~3.39), as well as logistics and information accessibility to identify PPC resources within the campus (average score ~2.85 and ~2.93, respectively). The inaugural lecture- 'Hospice 101: Providing Palliative Care in the Community Hospital Setting: An Interprofessional Approach-' was launched in October 2018, with 37 participants reporting an overall activity quality score ~4.53. Additional lectures planned over the academic year include: having difficult conversations; logistics of when a patient dies at TCH-TW; and management of an actively dying patient. Conclusion(s): Community hospitals have a unique opportunity to provide PPC services due their closer proximity to a patient's own home. Through an ongoing campus wide educational series initiative, we aim to provide a high-quality palliative care experience that better serves our patient population.
Moonat H; Nguyen L
Pediatric Blood and Cancer
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Costs of Care and Location of Death in Community-Based Pediatric Palliative Care
adolescent; adult; article; cardiovascular disease/dm [Disease Management]; child; child death; child health care; child health insurance; childhood cancer/dm [Disease Management]; childhood disease/dm [Disease Management]; cohort analysis; community care; community-based; congenital disorder/dm [Disease Management]; cost; dying; family income; female; groups by age; health care cost; health maintenance organization; home care; human; major clinical study; male; medicaid; neuromuscular disease/dm [Disease Management]; newborn disease/dm [Disease Management]; palliative therapy; pediatric palliative care; pediatric patient; prematurity/dm [Disease Management]; race difference; retrospective study
Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design(s): A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Result(s): Sixty-six (29%) of the children were \textless1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusion(s): Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability. Copyright © 2019, Mary Ann Liebert, Inc.
Chirico J; Donnelly J P; Gupton A; Cromwell P; Miller M; Dawson C; Korones D N
Journal of Palliative Medicine
2019
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0276</a>
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Neoplasms/psychology; Medical Oncology; Middle Aged; Male; Disease Progression; dying; Child; Humans; Adult; Qualitative Research; Pediatrics; Adolescent; Parents; palliative care; Female; Attitude to Death; Attitude to Health; Narration; Switzerland; narrative; Leukemia/psychology; paediatric oncology; stories; lived experience; Oncologists; Bone Neoplasms/psychology; Sarcoma/psychology; Soft Tissue Neoplasms/psychology
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.
De CE; Elger BS; Wangmo T
European Journal of Cancer Care
2017
<a href="http://doi.org/%2010.1111/ecc.12651" target="_blank" rel="noreferrer noopener">10.1111/ecc.12651</a>
End of life care experience at the peadiatic oncology unit at the uganda cancer institute: What role can oncology nurses play?
quality of life; dying; adolescent; pediatrics; advanced cancer; cancer patient; cancer survival; cancer chemotherapy; cancer diagnosis; mortality rate; coordination; conference abstract; human; child; female; male; adult; diagnosis; terminal care; clinical article; palliative therapy; pediatric patient; multidisciplinary team; oncology nurse; clinician
Mulyowa I
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific
dying; pain; Asia; pediatrics; palliative therapy; dyspnea; health care access; seizure; human; article; child; terminal care; nausea; high income country; analgesic agent/pd [Pharmacology]; analgesic agent/po [Oral Drug Administration]; life; pharmacognosy; symptom; drug bioavailability; online analysis; restlessness; sputum
Chong LA; Chong P H; Chee J
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0626</a>
Development and Implementation of an End-of-Life Curriculum for Pediatric Residents
dying; palliative therapy; comfort; satisfaction; resident; human; article; child; terminal care; curriculum development
BACKGROUND: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they often receive minimal education on EOL care. OBJECTIVE: To develop and implement an EOL curriculum and to study its impact on resident comfort and attitudes surrounding EOL care. DESIGN: Kern's 6-step approach to curriculum development was used as a framework for curriculum design and implementation. SETTING/PARTICIPANTS: Categorical and combined pediatric residents at a large quaternary care children's hospital were exposed to the curriculum. MEASUREMENTS: A cross-sectional survey was distributed pre- and postimplementation of the curriculum to evaluate its impact on resident comfort and attitudes surrounding EOL care. RESULTS: One-hundred twenty-six (49%) of 258 residents completed the preimplementation survey, and 65 (32%) of 201 residents completed the postimplementation survey. Over 80% of residents reported caring for a dying patient, yet less than half the residents reported receiving prior education on EOL care. Following curriculum implementation, the percentage of residents dissatisfied with their EOL education fell from 36% to 14%, while the percentage of residents satisfied with their education increased from 14% to 29%. The postimplementation survey identified that resident comfort with communication-based topics improved, and they sought additional training in symptom management. CONCLUSIONS: The implementation of a longitudinal targeted multimodal EOL curriculum improved resident satisfaction with EOL education and highlighted the need for additional EOL education.
Wilson PM; Herbst L A; Gonzalez-Del-Rey J
The American journal of hospice & palliative care
2018
<a href="http://doi.org/10.1177/1049909118786870" target="_blank" rel="noreferrer noopener">10.1177/1049909118786870</a>
Opinions of Israeli neonatologists about life and death decisions in neonates
Israeli;medical decision making;neonatologist;physician attitude;terminal care;adult;age;article;demography;disabled person;disease severity;dying;ethnicity;family attitude;Female;health care cost;human;Israel;Male;medical ethics;medicolegal aspect;middle aged;neonatal intensive care unit;normal human;personal experience;prospective study;psychological well being;questionnaire;religion;sex difference;simulation
Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious backgrounds (both religion and religiosity) influence neonatologists' attitudes in simulated clinical situations and opinions about the new law. Design/Methods:: Prospective design, using standard questionnaire sent to all 155 board-certified practising Israeli Neonatologists. The questionnaire sought demographic and descriptive data, personal opinions regarding four simulated cases, and opinions about five statements regarding variables that may influence decision-making. Statistical analyses were by stepwise backward regression analysis, linear regression, and Kruskal-Wallis tests, wherever indicated. Results:: Sixty-nine percent of the neonatologists replied, representing 27 NICUs out of the 29 NICUs in Israel. Most neonatologists would respect the wish of the family as long as it would be within the limits of the law or their personal beliefs. In stepwise regression analysis, religion, religiosity, age, gender, experience, or country of training did not influence significantly the neonatologists' opinions or their decisions in simulated practice. Most neonatologists felt that Ethical Committees had no role in NICUs and were seldom consulted. Most felt that likelihood of severe handicap was critical in decision-making. Issues related to treatment cost of a handicapped or dying infant, as well as impact of a handicapped infant on family's well-being, were not deemed critical. Conclusion:: Israeli neonatologists appear to be a relatively homogeneous group in end-of-life decisions, regardless of their ethnic, religious, or religiosity background.
Kasirer MY;Mimouni FB;Bin-nun A;Schimmel MS
Journal of Perinatology
2018
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/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">10.1038/s41372-018-0102-2</a>
Spiritual care of the child with cancer at the end of life: a concept analysis
Child; cancer; spiritual care; dying; concept analysis; nurses/midwives/nursing
Aim The aim of this paper is to report an analysis of the concept of spiritual care of a child with cancer at the end of life. Background Spirituality is a vital dimension of a child's experience at the end of life; providing comfort; support; and a sense of connection. Spiritual care is paramount to address the substantial spiritual distress that may develop. Design Rodgers' method of evolutionary concept analysis guided the review process. Data sources The literature search was not limited by start date and literature through the end of 2012 was included. English, peer-reviewed texts in the databases CINAHL, ATLA and PubMed were included. Methods Critical analysis of the literature identified surrogate terms, related concepts, attributes, antecedents and consequences. Results The analysis identified six attributes: assessing spiritual needs; assisting the child to express feelings; guiding the child in strengthening relationships; helping the child to be remembered; assisting the child to find meaning; and aiding the child to find hope. Antecedents include existential questions and spiritual distress. Consequences include a peaceful death, spiritual growth, a relationship of trust and enhanced end-of-life care. Conclusion Spiritual care is a vital aspect of holistic nursing care; however, gaps in knowledge and practice prevent children from receiving adequate spiritual care at the end of life. Nurses would benefit from increased awareness, skills and knowledge about spiritual care. Research is needed to identify interventions that exert the greatest effect on patient care outcomes.
2013
Petersen CL
Journal Of Advanced Nursing
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/10.1111/jan.12257" target="_blank" rel="noreferrer">10.1111/jan.12257</a>
Masculinity, moralities and being cared for: An exploration of experiences of living and dying in a hospice
Palliative Care; Death; hospice; Australia; identity; dying; father experience; Masculinity; moral practice
http://www.sciencedirect.com/science/article/B6VBF-507BHVC-9/2/87c0e7a37c04eda75f05a7e6f11ab460
Hospices are playing an increasingly important role in end of life care in Australia and internationally and the in-patient hospice experience has not been well documented by social scientists. This paper explores some important facets of the contemporary hospice experience through an examination of the perspectives of 11 male and 9 female Australian in-patients in the last few weeks of their lives. Through a series of qualitative in-depth interviews, we explore their conceptions of death and dying and their experiences of being cared for. The results illustrate a range of important themes including: tensions around what constitutes [`]the good death'; dying and caring as moral practice; and, the centrality of gender identity and relations in shaping experiences of dying and caring. We argue for a sociological approach to death and dying that better elucidates the interplay of identity, morality and relationality at the end of life."
Broom A; Cavenagh J
Social Science & Medicine
2010
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 Systematic Review of Measures of End-of-Life Care and Its Outcomes
Outcome and Process Assessment (Health Care); Quality of Health Care; dying; Essential Data Set; end-of-life care; measures
Objective. To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.Data Sources. English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.Study Design. Systematic review of end-of-life care literature.Extraction Methods. Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.Principal Findings. Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies.Conclusions. In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.
2007
Mularski RA; Dy SM; Shugarman LR; Wilkinson A; Lynn J; Shekelle PG; Morton SC; Sun VC; Hughes RG; Hilton LK; Maglione M; Rhodes SL; Rolon C; Lorenz KA
Health Services Research
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/10.1111/j.1475-6773.2007.00721.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2007.00721.x</a>
The importance of place of death in young adults with terminal cancer
Death; Neoplasms; cancer; location of death; Young adults; dying; Home Death; Place of Death; Terminal Cancer; Terminal Illness
This paper addresses issues relating to place of death in young adults with terminal cancer, through the perspectives of their parents. Evidence suggests that the majority of terminally ill cancer patients would prefer the option of a home death, but little is known about preferences among young adult cancer patients and their families. Through retrospective reflection by bereaved parents of young adults with cancer, this paper aims to understand the importance of place of death to this age group. The empirical data drawn on in this paper consist of accounts written by the parents of 13 young adults who died of cancer. A death at home is reported as a strongly held preference of the majority of young adults, and was supported by their parents. Eight of the 13 young adults were able to die at home, another wished to do so but died in a hospice. However, narratives describing death in places other than home signal that home may now always be the preferred or 'best' place to die. Life-stage factors do appear to play a role in determining both preference for, and the actual achievement of, a death at home, but if life stage issues are understood and respected a 'good' death can take place in other environments.
2004
Grinyer A; Thomas C
Mortality
2004
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Journal Article
<a href="http://doi.org/10.1080/13576270310001659436" target="_blank" rel="noreferrer">10.1080/13576270310001659436</a>
Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance
adolescent; Child; Female; Humans; infant; Male; Death; Adult; social support; childhood cancer; Preschool; Oncology at EOL; Neoplasms/psychology; Brain Neoplasms/therapy; dying; Terminal Care; Leukemia/therapy; Lymphoma/therapy; Neoplasms/therapy; palliative terminal care; psychological support; symptoms and suffering
AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate programs to address the challenges faced by these children. Procedure: Between 1994 and 2000, 28 children died after treatment for cancer at Hamamatsu University Hospital, Japan. The circumstances, signs and symptoms at the end of life of these children were analyzed through their medical records. Results: Of the 28 children, the underlying diseases were leukemia/lymphoma (LL group; n=11), brain tumors (BT group; n=7), and other solid tumors (OST group; n=10). Records showed poor appetite (100%), dyspnea (82.1%), pain (75.0%), fatigue (71.4%), nausea/vomiting (57.1%), constipation (46.4%) and diarrhea (21.4%) among these children. Anxiety was reported in 53.6% of the entire group of 28 children; however, no child in the BT group manifested anxiety. However, disturbance of consciousness was reported in all children in the BT group, which was significantly greater than in the other groups. Awareness, fear or acceptance of the imminence of his/her own death as indicated by verbal expression was reported in nine children (32.1%). Conclusions: Using the data obtained in the present study, we describe situations faced in the terminal care of children. It is important to address the problems revealed by this analysis in order to achieve improvements in both the physical and psychological care of children with terminal cancer.
2003-02
Hongo T; Watanabe C; Okada S; Inoue N; Yajima S; Fujii Yuji; Ohzeki T
Pediatrics International
2003
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.1442-200X.2003.01668.x" target="_blank" rel="noreferrer">10.1046/j.1442-200X.2003.01668.x</a>
How children die in hospital.
Child; Humans; Death; Palliative Care; symptoms; Euthanasia; Communication; Death; Resuscitation Orders; Longitudinal Studies; Critical Care; Children; Children; Preschool; infant; DNAR; Human; Pediatric intensive care unit; Passive; Hospital Mortality; Infant Mortality; Canuck Place 15 year chart review; dying; Infants; Pediatric intensive care unit
A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236 infants and children who died after hospital admission in Edmonton, Canada between January 1996 and June 1998 met entry criteria. Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days following an acute event were included. Unanticipated deaths were excluded. Eighty-three percent of children died in intensive care settings (64/77), and 78 % (60/77) were intubated prior to their death. Symptoms were recorded in narrative progress notes. Five of 77 (6%) charts contained specific pain assessment and treatment records. Opioid analgesia was provided in 84 % of all cases (65/77). Six (8 %) patients had do not resuscitate (DNNR) orders preceding final hospital admission and 56/71 (79%) remaining patients had documented discussion resulting in DNR decision during final hospital admission. Median time from DNR to death was < 1 day. Mode of death was withdrawal of therapy in 33/77 (43 %), no cardiopulmonary resuscitation (CPR) in 26/77 (34 %), andfailed CPR in 13/77 (17%). Five children were declared brain dead. In only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making regarding end-of-life issues in this pediatric population was deferred very close to the time of death, and only after no remaining curative therapy was available. Acuity of care was very high prior to death. Children are rarely told that they are dying.
2000
McCallum DE; Byrne P; Bruera E
Journal Of Pain And Symptom Management
2000
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(00)00212-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00212-8</a>
Palliative care for children.
Child; Palliative Care; Death; Children; bereavement; Guidelines; dying; Terminal Illness; Position Statement; Statement
The International Work Group on Death, Dying, and Bereavement recognizes the wide variation of attitudes, beliefs, and behaviours pertaining to childhood death, dying, and bereavement. The purpose of this statement is, therefore, to identify a set of assumptions which can serve as guidelines, across cultures, in the care of children with terminal illness and their families.
1993
International Work Group on Death Dying; Committee on Bioethics and Committee on Hospital Care
Death Studies
1993
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.106.2.351" target="_blank" rel="noreferrer">10.1542/peds.106.2.351</a>
How to Increase the Quality of a Suffering Experience: Lessons Derived From the Diary Narratives of a Dying Adolescent Girl
adolescent; dying; lived experience; narrative analysis; Suffering; unsolicited diary
Personal narratives are assumed to be primary sources of the essential meaning of lived experiences of dying. In this study, I analyzed the personal diary of Mirac Fidan, a terminally ill adolescent with advanced cancer who kept a diary until her death at the age of 15. Mirac's Diary, also published as a book, was subjected to hermeneutic phenomenological narrative analysis. Inferences were drawn regarding the following basic elements: (a) The dynamics in which Mirac lived and (2) her perceptions of herself, her immediate environment, and her experiences. Suffering seems to be the main experience dominating Mirac's life, which I examined with regard to two dimensions: suffering caused by inevitable factors and suffering caused by preventable/changeable factors. The results suggest that if various causes among contextual factors are neutralized, then the quality of the existential experience determined by the inevitable factors would increase.
Kavas MV
Omega (westport)
2018
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/10.1177/0030222817694667" target="_blank" rel="noreferrer">10.1177/0030222817694667</a>
Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis
Bereavement; Critical Care Nursing; Practice Patterns Nurses'; Adult; Australia; bereavement; Child; Death; dying; end-of-life care; Family; Female; Humans; Intensive Care; Intensive Care Units; Internet; Male; New Zealand; nursing role; Patient-Centered Care; Surveys and Questionnaires
BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content analysis was conducted on free-text responses to a web-based survey exploring unit-based bereavement practice distributed to nurse managers in 229 intensive care units in New Zealand and Australia. RESULTS: A total of 153 (67%) surveys were returned with 68 respondents making free-text responses. Respondents were mainly Australian (n = 54, 85.3%), from the public sector (n = 51, 75%) and holding Nurse Unit Managers/Charge Nurse roles (n = 39, 52.9%). From the 124 free-text responses, a total of 187 individual codes were identified focussing on bereavement care practices (n = 145, 77.5%), educational provision to support staff (n = 15, 8%) and organisational challenges (n = 27, 14.4%). Bereavement care practices described use of memory boxes, cultural specificity, annual memorial services and use of community support services. Educational provision identified local in-service programmes, and national bereavement courses for specialist bereavement nurse coordinators. Organisational challenges focussed on lack of funding, especially for provision of bereavement follow-up. CONCLUSIONS: This is the first Australasian-wide survey, and one of the few international studies, describing bereavement practices within intensive care, an important aspect of nursing practice. However, with funding for new bereavement services and education for staff lacking, there are continued challenges in developing bereavement care. Given knowledge about the impact of these areas of care on bereaved family members, this requires review. RELEVANCE TO CLINICAL PRACTICE: Nurses remain committed to supporting bereaved families during and following death in intensive care. With limited resource to support bereavement care, intensive care nurses undertake a range of bereavement care practices at time of death, and after death through family bereavement follow-up.
Coombs M; Mitchell M; James S; Wetzig K
Journal of Clinical Nursing
2017
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<a href="http://doi.org/10.1111/jocn.13624" target="_blank" rel="noreferrer">10.1111/jocn.13624</a>
[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
Attitude Of Health Personnel; Cancer Palliative Therapy; Childhood Cancer; Communication Barrier; Communication Barriers; Critical Illness/nu [nursing]; Palliative Care/mt [methods]; Parental Attitude; Physician-patient Relations; Article; Cancer Mortality; Cancer Patient; Cancer Therapy; Child; Critical Illness/px [psychology]; Disease Management; Dying; Empathy; Female; Human; Humans; Interpersonal Communication; Medical Expert; Oncologist; Palliative Care/px [psychology]; Parent-child Relations; Parents/px [psychology]; Pediatrician; Psychologist; Quality Of Health Care; Self Defense; Structured Interview
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Nyiro J; Hauser P; Zorgo S; Hegedus K
Orvosi Hetilap
2017
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/10.1556/650.2017.30815" target="_blank" rel="noreferrer">10.1556/650.2017.30815</a>
Palliative Care After Neonatal Intensive Care: Contributions Of Leonetti Law And Remaining Challenges
Newborn Intensive Care; Palliative Therapy; Patient Right; Terminal Care; Artificial Feeding; Brain Damage; Climate; Clinical Practice; Clinical Study; Decision Making; Drug Withdrawal; Dying; Emotion; Ethics; Health Promotion; Human; Human Dignity; Hydration; Life Sustaining Treatment; Medical Decision Making; Medical Ethics; Medical Practice; Neonatology; Newborn; Palliative Therapy; Perinatal Care; Perinatal Nursing; Quality Of Life; Short Survey; Survival; Terminal Care; Treatment Withdrawal
Kuhn P; Dillenseger L; Cojean N; Escande B; Zores C; Astruc D
Archives De Pediatrie
2017
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10.1016/j.arcped.2016.11.012
Communication About Dying, Death, And Bereavement: A Systematic Review Of Children's Literature
Bereavement; Bibliotherapy; Child; Children's Literature; Death; Dying; Grief; Only Child
BACKGROUND: Children's books have the potential to facilitate communication about death for children living with a serious illness and for children coping with the death of a loved one. OBJECTIVES: This study examines the content of children's literature relevant to the topic of dying and death and identifies books providers can share with children and their families. DESIGN: A search of children's literature was conducted using four electronic databases and one additional search engine using the word "Death" or "Dying." Storybooks about dying, death, and bereavement published in English, French, or Spanish between 1995 and 2015 were included. MEASUREMENTS: Each book underwent content analysis by at least two independent reviewers. Strict PRISMA standard was followed. Full protocol is available as PROSPERO #CRD42016042129. RESULTS: Two hundred ten books met inclusion criteria. The dying subject was primarily a grandparent (n = 78) or pet (n = 44). Books on the experience of a child dying were scarce (n = 5). The word death or dying was used in 75% of the books (n = 158), while others utilized euphemisms. The majority of books featured animals (n = 40) or Caucasian subjects (n = 122) and included spiritual elements such as heaven (n = 122). Less than one-quarter of the books included tools for readers to address the topic of death. CONCLUSIONS: Storybooks can be a helpful tool to introduce communication about dying and death with children. Gaps exist in current children's literature to effectively enable children to reflect on their own dying process. A general summary of available books is provided to assist those caring for children and families facing end-of-life issues.
Arruda-Colli MN; Weaver M; Wiener L
Journal Of Palliative Medicine
2017
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10.1089/jpm.2016.0494
Delivery Room Deaths Of Extremely Preterm Babies: An Observational Study
Management; Epipage-2; Decision Making; Weeks Gestation; Palliative Care; Perspectives; Birth; Challenge; Infant; Delivery Rooms; Perinatal Palliative Care; Extreme Prematurity; Comfort Care; Death; Pediatrics
Palliative Care; Comfort Care; Delivery Room; Dying; Extreme Prematurity
OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France.
DESIGN, SETTING, PATIENTS:
Prospective study including neonates, who were liveborn between 22+0 and 26+6 weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby.
RESULTS:
The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%.
CONCLUSIONS:
Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping.
X Durrmeyer
Archives Of Disease In Childhood. Fetal And Neonatal Edition
2016
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DOI: 10.1136/archdischild-2016-310718