Neonatal Staff and Advanced Practice Nurses’ Perceptions of Bereavement/End-of-Life Care of Families of Critically Ill and/or Dying Infants

2004 ◽  
Vol 13 (6) ◽  
pp. 489-498 ◽  
Author(s):  
Arthur J. Engler ◽  
Regina M. Cusson ◽  
Renee T. Brockett ◽  
Charlene Cannon-Heinrich ◽  
Michelle A. Goldberg ◽  
...  

• Background Parents need compassionate care when an infant dies. Nurses can provide such care and possibly facilitate grieving, yet often have inadequate preparation in bereavement/end-of-life care. • Objective To describe neonatal nurses’ perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. • Methods A cross-sectional, descriptive, correlational mailed survey design was used. The 55-item Bereavement End-of-Life Attitudes About Care: Neonatal Nurses Scale containing 4 sections (comfort, roles, involvement, and demographics) was mailed to 240 hospitals in the United States. • Results The final response rate was 52% (190 completed data sets from 125 hospitals). Respondents were comfortable with many aspects of bereavement/end-of-life care. Comfort and roles scores correlated significantly with number of years as a neonatal intensive care nurse. Respondents agreed about many important aspects of their roles with patients’ families, especially the importance of providing daily support to the families. Most respondents identified caring for a dying infant, the actual death of an infant, and language or cultural differences as influential factors in the level of their involvement with families. • Conclusions Education on bereavement/end-of-life care could affect nurses’ comfort with caring for families of critically ill and/or dying infants. Additional education on cultural competence would be helpful. Educators must promote the inclusion of content on bereavement/end-of-life care in nursing curricula. Finally, researchers must focus more attention on factors that promote and inhibit bereavement/end-of-life care of families of critically ill and/or dying infants.


2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Aurelija Blaževičienė ◽  
Jamesetta A. Newland ◽  
Vilija Čivinskienė ◽  
Renea L. Beckstrand


2020 ◽  
Vol 29 (7-8) ◽  
pp. 1209-1219
Author(s):  
Carmen W. H. Chan ◽  
Meyrick C. M. Chow ◽  
Sally Chan ◽  
Robert Sanson‐Fisher ◽  
Amy Waller ◽  
...  


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.



2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.



2002 ◽  
Vol 10 (3) ◽  
pp. 233-241 ◽  
Author(s):  
Phyllis B. Taylor

More people than ever before are being incarcerated in the United States. Many inmates are infected with HIV and hepatitis C. Sentences are increasing in length. Prison health care is now having to cope with the many chronic illnesses associated with an ill and aging population. The growth of end-of-life care programs in corrections in the United States is a direct result of the changing demographics of inmates. This article examines the need for end-of-life care behind bars and discusses selected hospice programs.



2012 ◽  
Vol 2012 ◽  
pp. 1-7 ◽  
Author(s):  
So-Sun Kim ◽  
Won-Hee Lee ◽  
JooYoung Cheon ◽  
Jung-Eun Lee ◽  
KiSun Yeo ◽  
...  

Background. The goal of advance directives is to help patients retain their dignity and autonomy by making their own decisions regarding end-stage medical treatment. The purpose of this study was to examine preferences of advance directives among general population in Korea.Method. A descriptive cross-sectional survey was performed from October 2007 to June 2008 in Seoul, Korea. A total of 336 city-dwelling adults self-administered the questionnaire and returned it via mail. Data analyses were conducted using SPSS 17.0.Results. Subjects reported the need for healthcare providers' detailed explanations and recommendations regarding end-of-life care. When there is no hope of recovery and death is imminent, most subjects did not want to receive cardiopulmonary resuscitation nor an IV or tube feeding. However, most of the subjects wanted pain management care.Conclusions. The present study showed that many Korean people have an interest in advance directives. The results show that the autonomy and dignity of patient have increased in importance. To provide better end-of-life care, there is a need to educate patients on the definition and intent of an advance directive. Additional proactive communication between patients and their caregivers should be educated to healthcare providers.



1997 ◽  
Vol 6 (2) ◽  
pp. 189-204 ◽  
Author(s):  
Timothy E. Quill ◽  
Gerrit Kimsma

Voluntary active euthanasia (VAE) and physician-assisted suicide (PAS) remain technically illegal in the Netherlands, but the practices are openly tolerated provided that physicians adhere to carefully constructed guidelines. Harsh criticism of the Dutch practice by authors in the United States and Great Britain has made achieving a balanced understanding of its clinical, moral, and policy implications very difficult. Similar practice patterns probably exist in the United States, but they are conducted in secret because of a more uncertain legal and ethical climate. In this manuscript, we plan to compare end-of-life care in the United States and the Netherlands with regard to underlying values, justifications, and practices. We will explore the risks and benefits of each system for a real patient who was faced with a common end-of-life clinical dilemma, and close with challenges for public policies in both countries.



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