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>
The use of drugs with a life-shortening effect in end-of-life care in neonates and infants
Analgesics Opioid; Euthanasia; Muscle Relaxants Central; Potassium Chloride; Practice Patterns Physicians'; Terminal Care; 0 (analgesics Opioid); 0 (muscle Relaxants Central); 660yq98i10 (potassium Chloride); Belgium; Decision Making; Drug Utilization; Humans; Infant; Infant Newborn; Intention; Pain/dt [drug Therapy]; Terminal Care/es [ethics]
OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (<1 year), in a 1-year period (between 1 August 1999 and 31 July 2000) in Flanders, Belgium, the attending physician could be identified and was sent an anonymous questionnaire. The questionnaires relating to deaths directly preceded by the administration of drugs were reviewed by a multi-disciplinary panel. RESULTS: The response rate was 86.6% (253/292). In 57 cases (22.5%), drugs were administered directly before death. In 17/57 cases, the physician explicitly intended to hasten death. In 16/17 cases information about the drug(s) was available: opioids were administered in 14, a muscle relaxant in 5 and potassium chloride in 3 cases. In 13 cases where the lethal effect could be evaluated, the panel judged that the drugs were effective in hastening death in 10 cases. In most cases the estimated life-shortening was <24 h. In 40/57 cases the physician administered drugs to alleviate pain and/or symptoms, taking into account a possible life-shortening effect without explicitly intending it. Opioids were administered in all 30 cases where information about the drug(s) was supplied. In 13 cases the lethal effect could be evaluated, and in 6 cases the panel judged that the drugs had hastened death. CONCLUSIONS: When life-shortening was explicitly intended, (dosages of) drugs were likely to be lethal. Drugs administered also clearly hastened death in some cases where life-shortening was not explicitly intended.
Provoost V; Cools F; Bilsen J; Ramet J; Deconinck P; Vander Stichele R; Vande Velde A; Van Herreweghe I; Mortier F; Vandenplas Y; Deliens L
Intensive Care Medicine
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00134-005-2863-2" target="_blank" rel="noreferrer">10.1007/s00134-005-2863-2</a>
Developing a policy for do not resuscitate orders within a framework of goals of care.
Humans; Policy; decision making; DNAR; Palliative Care/og [Organization & Administration]; Hospital Administration/es [Ethics]; Patient Care Planning/es [Ethics]; Patient Care Planning/og [Organization & Administration]; Resuscitation Orders/es [Ethics]; Palliative Care/es [Ethics]; Terminal Care/es [Ethics]; Terminal Care/og [Organization & Administration]
BACKGROUND: Discussions about DNR (do not resuscitate) orders or code status are common but can be difficult and may not lead to accurate understanding between clinicians and patients. These discussion are often isolated from the larger context of a patient's plan of care. Addressing patients goals of care, which provide a basic orientation for clinical and ethical decision making, may improve clinicians' understanding about patients' code-status preferences., A POLICY FOR DNR ORDERS WITHIN A FRAMEWORK OF GOALS OF CARE: On the basis of experience at the University of Iowa Hospitals and Clinics, which entailed incorporating goals of care in ethics education, identifying six goals of care through a structured literature review, surveying hospitalized adults, and integrating goals of care into palliative care education, the University of Iowa Hospitals and Clinics ethics committee revised the hospital policy regarding DNR orders. The intention was to avoid treating DNR orders as an isolated clinical phenomenon and to instead place the discussion of DNR orders in the more general context of end-of-life discussions and to place both of these discussions within an even more general framework of goals of care., CONCLUSIONS: The DNR order policy represents an effort to translate conceptual analysis, empirical research, and clinical experience into hospital policy so that clinicians are encouraged to place code-status discussions within a larger, goal-oriented context. Using goals of care to guide decision making about DNR orders and other treatments should enhance the quality of patient care by improving the fit between the biomedical information we provide patients and the values our patients rely on to make their medical decisions.
Kaldjian LC; Broderick A
Joint Commission Journal On Quality And Patient Safety / Joint Commission Resources
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s1553-7250(11)37002-x" target="_blank" rel="noreferrer">10.1016/s1553-7250(11)37002-x</a>
Mind the child: using interactive technology to improve child involvement in decision making about life-limiting illness.
Humans; Personal Autonomy; Interviews as Topic; Attitude to Death; Communication; Qualitative Research; DNAR; Computer-Assisted; decision making; Terminal Care; Terminal Care/es [Ethics]; Advance Directives/es [Ethics]; Child; Patient Participation/mt [Methods]; Advance Care Planning/es [Ethics]; Patient Participation/td [Trends]; Terminal Care/td [Trends]
2010
Barfield RC; Brandon D; Thompson J; Harris N; Schmidt M; Docherty S
The American Journal Of Bioethics
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 href="http://doi.org/10.1080/15265161003632930" target="_blank" rel="noreferrer">10.1080/15265161003632930</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
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313539</a>