Paediatric end-of-life care at home
Humans; Child; Home Care Services; Terminal Care; Palliative Care/px [Psychology]; Parents/px [Psychology]; Terminal Care/px [Psychology]; Hospice Care; Terminal Care; Death
BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task., AIM: To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care., METHOD: A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used., FINDINGS: A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care., CONCLUSION: The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.
Larsen SHK; Bording I; Bjergegaard M; Buchreitz J; Mouritzen BT; Brix L; Jespersen BA; Neergaard MA
International Journal of Palliative Nursing
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/10.12968/ijpn.2023.29.6.282" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.6.282</a>
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
Bereavement; Perinatal Death; Terminal Care; Anxiety; Bereavement; Depression; Female; Humans; Infant; Infant Newborn; Parents/px [Psychology]; Perception; Prospective Studies; Terminal Care; Terminal Care/px [Psychology]
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context., METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death., RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview., CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents. Copyright © 2023. The Author(s).
Cambonie G; Desage C; Thaller P; Lemaitre A; de Balanda KB; Combes C; Gavotto A
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/s12904-023-01183-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01183-8</a>
Paediatric palliative care for the generalist
Hospice and Palliative Care Nursing; Hospice Care; Terminal Care; Child; Humans; Palliative Care; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Terminally Ill/px [Psychology]
Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.
Ambler JF; Bell CH
South African Family Practice
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/10.4102/safp.v65i1.5722" target="_blank" rel="noreferrer noopener">10.4102/safp.v65i1.5722</a>
Always a burden? Healthcare providers' perspectives on moral distress
Humans; Intensive Care Units; Stress; Attitude of Health Personnel; Female; Male; Adult; Qualitative Research; Intensive Care; Terminal Care/es [Ethics]; Terminal Care/px [Psychology]; Morals; Job Satisfaction; Psychological; Neonatal; Burnout; Terminal Care; Health Personnel/px [Psychology]; Professional/px [Psychology]; Neonatal/sn [Statistics & Numerical Data]; Neonatal/es [Ethics]; Burnout; Intensive Care; Stress; Neonatal/px [Psychology]; Professional; Professional/et [Etiology]; Professional/pc [Prevention & Control]; Psychological/et [Etiology]; Psychological/pc [Prevention & Control]
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. DESIGN: An anonymous questionnaire was distributed to medical and nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical and one perinatal-seeking their understanding of the term and their experience of it. Open-ended questions were analysed using qualitative methodology. RESULTS: A total of 345 healthcare providers from two NICUs participated (80% response rate): 286 nurses and 59 medical providers. Moral distress was correctly identified as constrained moral judgement resulting in distress by 93% of participants. However, in practice the term moral distress was also used as an umbrella term to articulate different forms of distress. Moral distress was experienced by 72% of providers at least once a month. Yet despite the negative sequelae of moral distress, few (8% medical, 21% nursing providers) thought that moral distress should be eliminated from the NICU. Open-ended responses revealed that while interventions were desired to decrease the negative impacts of moral distress, moral distress was also viewed as an essential component of the caring profession that prompts robust discussion and acts as an impetus for medical decision-making. CONCLUSIONS: Moral distress remains prevalent within NICUs. While the harmful aspects of moral distress need to be mitigated, moral distress may have a positive role in advocating for and promoting the interests of the neonatal population.
Prentice TM; Gillam L; Davis PG; Janvier A
Archives of Disease in Childhood Fetal & Neonatal Edition
2018
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<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313539</a>
A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care
Humans; Intensive Care Units; Intensive Care Units; Middle Aged; Female; Male; Adult; Aged; Pediatric; Neonatal; Terminal Care/px [Psychology]; Mental Health; Burnout; Health Personnel/px [Psychology]; Mindfulness/mt [Methods]; Clergy/px [Psychology]; Depression/px [Psychology]; Social Workers/px [Psychology]; Professional/px [Psychology]
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care., METHODS: A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program., RESULTS: Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers ( P < .05)., CONCLUSION: Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.
O'Mahony S; Gerhart J; Abrams I; Greene M; McFadden Rory; Tamizuddin S; Levy MM
The American journal of hospice & palliative care
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/10.1177/1049909116660688" target="_blank" rel="noreferrer noopener">10.1177/1049909116660688</a>
Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records
Child; Female; Humans; Male; Advance Directives; Physician-Patient Relations; Pediatrics; Practice Guidelines as Topic; Communication; Resuscitation Orders; Time Factors; quality of life; end of life; adolescent; Preschool; decision making; infant; retrospective studies; DNAR; Parents; documentation; Parents/px [Psychology]; Terminal Care; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; review; Medical Records; Neoplasms; advance planning; child and family wishes; Neoplasms/mo [Mortality]; Patient Care Planning/st [Standards]; Terminal Care/px [Psychology]
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared.
2014-03
Beringer AJ; Heckford EJ
Child: Care, Health And Development
2014
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Journal Article
<a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">10.1111/cch.12020</a>
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Pediatrics
2009
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Journal Article
<a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</a>
To explore the neonatal nurses' beliefs and attitudes towards caring for dying neonates in Taiwan
Attitude of Health Personnel; Attitude to Death; Culture; Neonatal Nursing; Terminal Care/px [Psychology]; Adult; Cross-Sectional Studies; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Neonatology; Surveys and Questionnaires; Taiwan; Young Adult
(1) To explore attitudes and beliefs of neonatal nurses toward nursing care for dying neonates; (2) to estimate the influence of neonatal nurses' personal and professional characteristics on their attitudes towards end-of life care for dying infants. A cross-sectional design was used. A questionnaire was used to collect data from 80 neonatal nurses. Research setting was four level III NICUs at four medical centers around the central region of Taiwan. Research participants were neonatal nurses who had worked for at least 1 year in one of level III NICUs and had been directly involved with the care of dying infants. Research participants were 80 neonatal nurses (response rate 100 %). Research findings identified eight barriers hindering neonatal palliative care practice. These barriers were insufficient communication due to the lack of an in-service educational program; the lack of available counseling help for neonatal clinicians; inability to express personal opinions, values and beliefs towards neonatal palliative care; insufficient staffing; the lack of unit policies/guidelines for supporting palliative care; the technological imperative; parental demands and personal beliefs about death and previous experience caring for dying infants. Further studies are needed to explore each barrier and to provide in-service neonatal palliative care educational programs that are needed to decrease these barriers.
Chen CH; Huang LC; Liu HL; Lee HY; Wu SY; Chang YC; Peng NH
Maternal & Child Health Journal
2013
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<a href="http://doi.org/10.1007/s10995-012-1199-0" target="_blank" rel="noreferrer">10.1007/s10995-012-1199-0</a>
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Critical Illness/th [Therapy]; Decision Making; Parents/px [Psychology]; Terminal Care; Belgium; gestational age; Humans; infant; Infant Newborn; Life Support Care/px [Psychology]; Medical Futility/px [Psychology]; Physician-Patient Relations; retrospective studies; Surveys and Questionnaires; Terminal Care/px [Psychology]; Withholding Treatment
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Provoost V; Cools F; Deconinck P; Ramet J; Deschepper R; Bilsen J; Mortier F; Vandenplas Y; Deliens L
European Journal Of Pediatrics
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).
<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-006-0190-4</a>
Human suffering: the need for relationship-based research in pediatric end-of-life care
Interpersonal Relations; Neoplasms/co [complications]; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Psychology; Stress; Terminal Care; Adaptation; Child; Health Services Needs And Demand; Humans; Psychological; Psychological/et [etiology]; Psychological/nu [nursing]; Psychological/px [psychology]; Quality Of Life; Sick Role; Social Support; Spirituality; Stress; Terminal Care/og [organization & Administration]; Terminal Care/px [psychology]
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being. [References: 29]
Kane JR; Hellsten MB; Coldsmith A
Journal Of Pediatric Oncology Nursing
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).
<a href="http://doi.org/10.1177/1043454204264393" target="_blank" rel="noreferrer">10.1177/1043454204264393</a>
End-Of-Life Research as a Priority for Pediatric Oncology
Neoplasms; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Terminal Care/og [organization & Administration]; Adaptation; Attitude To Death; Child; Decision Making; Family/px [psychology]; Grief; Health Priorities/og [organization & Administration]; Humans; Needs Assessment; Neoplasms/nu [nursing]; Neoplasms/px [psychology]; Psychological; Psychology; Social Support; Survivors/px [psychology]; Terminal Care/px [psychology]
Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. The focus of this article is on five key areas related to end of life where research is critically needed; (a) the characteristics of cancer-related death and the profiles of survivorship in bereaved family members and health care providers, (b) the trajectory of dying in children and adolescents and a comparison of care delivery preferred by the family and that actually delivered, (c) end-of-life decision making, (d) the financial costs of a child or adolescent dying a cancer-related death and associated policy making, and (e) outcomes of symptom-directed or bereavement interventions. Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors. [References: 26]
Hinds PS; Pritchard M; Harper J
Journal Of Pediatric Oncology Nursing
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).
<a href="http://doi.org/10.1177/1043454204264386" target="_blank" rel="noreferrer noopener">10.1177/1043454204264386</a>
Parent Perspectives of Neonatal Intensive Care at the End-of-Life
Intensive Care Neonatal/st [standards]; Palliative Care/mt [methods]; Parents/px [psychology]; Professional-family Relations; Terminal Care/px [psychology]; Adaptation Psychological; Adult; Bereavement; Decision Making; Female; Humans; Infant Newborn; Intensive Care Neonatal/td [trends]; Intensive Care Units Neonatal; Interviews As Topic; Male; Palliative Care/px [psychology]; Perception; Qualitative Research; Stress Psychological; Terminal Care/mt [methods]; United States
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.
Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Meneses K
Journal of Pediatric Nursing
2016
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10.1016/j.pedn.2016.03.023
Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care
Parents/px [psychology]; Pediatrics; Social Workers/px [psychology]; Terminal Care/es [ethics]; Terminal Care/px [psychology]; Decision Making; Family; Health Personnel/px [psychology]; Humans; Interviews As Topic; Professional-family Relations; Terminal Care/st [standards]; Withholding Treatment/es [ethics]
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.
Thieleman KJ; Wallace C; Cimino AN; Rueda HA
Journal of Social Work in End-of-life and Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/15524256.2016.1200518">10.1080/15524256.2016.1200518</a>
Caring For Premature Life And Death: The Relational Dynamics Of Detachment In A Nicu
Anthropology Medical; Infant Premature; Intensive Care Neonatal/px [psychology]; Intensive Care Units Neonatal; Professional-patient Relations; Terminal Care/px [psychology]; Humans; Infant Newborn; Thailand/eh [ethnology]
Drawing on fieldwork in a neonatal intensive care unit (NICU) in Chiang Mai during 2010 and 2012, I examine neonatal care as a contingent entanglement of technological and ethical relationships with vulnerable others. Along the continuum of universal antenatal and delivery care, neonatal medicine becomes a normative part of reproductive health care in Chiang Mai. As the NICU opens its door to sick newborns whose belonging to kinship and the nation-state is uncertain, neonatal care requires deliberate practices to incorporate them into life-sustaining connections. By tracing medical staff's effort to be accountable to their fragile patients, I show that withdrawing of intensive care is relational work that requires affective involvement and distancing through commensality, prosthetic extensions, and karmic network. This specific mode of care, which is premised on the combination of unconditional openness and careful detachment, offers insight into a possible enactment of hospitality within biomedical institutions.
Seo B K
Medical Anthropology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1080/01459740.2016.1145678