communication; Neonatal Intensive Care Unit; Newborns; nurse perspectives
Description
OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. METHODS: Study with a descriptive qualitative approach, in which 17 professionals participated. Data were collected through a semi-structured interview script, from December/2018 to February/2019, and submitted to content analysis. RESULTS: Four theoretical categories emerged, with 11 subcategories inserted: meanings attributed to bad news; nursing as a support for the family; difficulties in dealing with the process of communicating bad news; nursing and involvement with the family's suffering. FINAL CONSIDERATIONS: The challenges to deal with the situation are related to lack of preparation, impotence, and subjectivities. The results broaden knowledge on the subject and enable the improvement of nursing care in this context.
Rights
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).
Quality of life; Withholding treatment; Cognition disorders; Infancy; Newborns; Value of life
Description
In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child's future life? Third, if the life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child (suffering) will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness.
Rights
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).
end-of-life care; ethics; families; medical ethics; newborns; physicians
Rights
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).
Recent Changes in End-of-Life Decisions for Newborns in a Korean Hospital
Creator
Kim MJ; Lee JH; Lee HD
Identifier
10.1177/1049909117730024
Publisher
American Journal Of Hospice And Palliative Medicine
Date
2017
Subject
Decision-making; End-of-life; Ethics; Neonatal Care; Neonatal Intensive Care Unit; Newborns
Description
INTRODUCTION: Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and affecting factors. METHODS: This is a retrospective study of neonates who died between 2001 and 2015 in the neonatal intensive care unit of Dong-A University Hospital in Busan. The types of end-of-life decisions were divided into active resuscitation, withholding treatment, and withdrawing treatment. The study period was divided into 3 time frames using 5-year intervals to investigate changes over time. To identify the associated factors, we analyzed the demographic and clinical characteristics of the neonates and their parents using the chi2 test and independent t test. RESULTS: Of the neonatal deaths included in the analysis (n = 222), active resuscitation, withholding treatment, and withdrawing treatment groups accounted for 73.4%, 25.2%, and 1.4% of cases, respectively. When comparing changes over time, between period 1 (2001-2005), 2 (2006-2010), and 3 (2011-2015), the proportion of active resuscitation decreased significantly, from 80.9% to 60.8%, while that of nonactive resuscitation increased significantly from 19.1% to 39.2%. The factors associated with end-of-life decisions were the clinical condition of the neonate at the time of death, rather than general characteristics or socioeconomic factors. CONCLUSIONS: In Korea, changes in the decisions on end-of-life care in neonates are shifting from active resuscitation to nonactive resuscitation based on clinical conditions.
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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).
Citation List Month
November 2017 List
Notes
1938-2715 Kim, Myo-Jing ORCID: http://orcid.org/0000-0002-8296-3382 Lee, Jin-Hyeok Lee, Hyoung-Doo Journal Article United States Am J Hosp Palliat Care. 2017 Jan 1:1049909117730024. doi: 10.1177/1049909117730024.
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In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings.
DESIGN:
A structured, retrospective, cohort study.
SETTING/PARTICIPANTS:
All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified.
RESULTS:
The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death.
CONCLUSION:
Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.]]>2023-02-23T17:20:39-05:00
Title
A Descriptive Report Of End-of-life Care Practices Occurring In Two Neonatal Intensive Care Units
Creator
Lam V; Kain N; Joynt C; van Manen MA
Identifier
DOI: 10.1177/0269216316634246
Publisher
Journal Of Palliative Medicine
Date
2016
Subject
Death; Decision Making; Withdrawal; Patterns; Perspectives; Nicu; Infant; Neonatal; Newborns; Support Implementation; End Of Life Care; Public Environmental & Occupational Health; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Neonatal Intensive Care Unit; Palliative Care; Anesthesia; Analgesics; Intensive Care
Death; End Of Life; Neonatal; Neonatal Intensive Care Unit; Palliative Care
Description
BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings.
DESIGN:
A structured, retrospective, cohort study.
SETTING/PARTICIPANTS:
All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified.
RESULTS:
The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death.
CONCLUSION:
Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.
Rights
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).