In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making

PEDIATRICS ◽  
2018 ◽  
Vol 142 (Supplement 1) ◽  
pp. S567-S573 ◽  
Author(s):  
Lars Ursin ◽  
Janicke Syltern
Keyword(s):  
Decision Making ◽  
Health Personnel ◽  
Best Interest ◽  
Proper Role ◽  
Role Of Parents

The role of parents in teenagers' independent decision-making

2020 ◽  
Vol 3 (6) ◽  
pp. 45-47
Author(s):  
Sodiqova Gulbarno Odiljon qizi
Keyword(s):  
Decision Making ◽  
The Family ◽  
Role Of Parents ◽  
Independent Decision

This article provides an overview of the role of parents and parenting methods in teenager independent decision-making in the family, and provides relevant conclusions

Treatment of Disabled Infants

PEDIATRICS ◽  
1984 ◽  
Vol 74 (4) ◽  
pp. 572-572
Author(s):  
PAUL F. WEHRLE
Keyword(s):  
Decision Making ◽  
Human Services ◽  
Medical Professionals ◽  
Health And Human Services ◽  
Department Of Health ◽  
Baby Doe ◽  
The Government ◽  
Role Of Parents ◽  
Seriously Ill

In Reply.— I am concerned that the Academy's position on treatment decisions regarding seriously ill newborns may have been construed to be one in alliance with the government's hard-line stand on interventionism and insistence upon treatment. It has always been our position that neither the government nor the courts should interfere in decisions best made by parents in consultation with medical professionals. The Academy is as committed to this concept today as it was when it first challenged the Department of Health and Human Services (DHHS) and successfully struck down the first "Baby Doe" rule which ignored the role of parents in this critical decision-making arena.

Exploring the Role of Pediatric Neurology in Determinations of Futility, Identifying Vulnerability, and Participating in Shared Decision Making through Case-Based Analysis

2020 ◽  
Vol 9 (03) ◽  
pp. 067-072
Author(s):  
Julio Quezada ◽  
John D. Lantos
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Neurological Disease ◽  
Multidisciplinary Teams ◽  
Shared Decision ◽  
Best Interest ◽  
Self Identity ◽  
Unique Character ◽  
Case Based

AbstractIt is not uncommon for pediatric neurologists to encounter ethical dilemmas in clinical practice. These dilemmas not only require an exploration of the basic bioethical principles, but also considering that neurological disease can have impact on a person's self-identity. Patients with neurological disease are particularly vulnerable and at risk of having long-term sequelae of their nervous system and their individual selves. These important considerations can then raise the question of futility of treatment in a setting of uncertainty of outcome. In these complex situations, a pediatric neurologist plays an important role in shared decision making with both families and multidisciplinary teams. In this paper, we explore case-based scenarios that serve to demonstrate the unique character of ethics in neurology and the role of pediatric neurologists in finding solutions that are in a patient's best interest, have a minimal chance of harm, respect a patient's autonomy, and are just and promote justice.

The Medical Surrogate as Fiduciary Agent

2017 ◽  
Vol 45 (3) ◽  
pp. 402-420
Author(s):  
Dana Howard
Keyword(s):  
Decision Making ◽  
Advance Care Planning ◽  
Care Planning ◽  
Surrogate Decision Making ◽  
Best Interest ◽  
New Approach ◽  
Novel Approach ◽  
Advance Care ◽  
Surrogate Decision

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will.

scholarly journals Protect us from ourselves: Balancing the parental instinct of saving

2019 ◽  
Vol 27 (5) ◽  
pp. 1282-1296
Author(s):  
Lars Ursin ◽  
Janicke Syltern
Keyword(s):  
Decision Making ◽  
Research Question ◽  
Ethical Challenges ◽  
Prenatal Counselling ◽  
Limit Of Viability ◽  
Regional Committee ◽  
Role Of Parents ◽  
Study Participants ◽  
Medical Research Ethics

Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child.

scholarly journals Article 5: The Role of Parents in the Proxy Informed Consent Process in Medical Research involving Children

2020 ◽  
Vol 28 (3) ◽  
pp. 521-546
Author(s):  
Sheila Varadan
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Research ◽  
Well Being ◽  
Ethical Challenges ◽  
Research Setting ◽  
Role Of Parents ◽  
Article 5 ◽  
The Relationship

Abstract Medical research involving child subjects has led to advances in medicine that have dramatically improved the lives, health and well-being of children. Yet, determining when and under what conditions a child should be enrolled in medical research remains an ethically vexing question in research ethics. At the crux of the issue is the free and informed consent of the child participant. A child, who is presumed legally incompetent, or lacks sufficient understanding to exercise autonomous decision-making, will not be able to express free and informed consent in the research setting. Rather than exclude all such children from medical research, a parent (or legal guardian) is designated as a proxy to consent on the child’s behalf. However, the concept of proxy informed consent and the framework for its implementation present practical and ethical challenges for researchers, particularly in navigating the relationship between proxy decision-makers and child subjects in the medical research setting. Article 5 of the uncrc may offer guidance on this point: (1) it places boundaries around how parental authority should be exercised; (2) it offers a model for parent-child decision-making that is participatory, collaborative and linked to the child’s enjoyment of rights under the uncrc; (3) it respects and supports the autonomy of child participants by recognising their evolving capacities to give informed consent. This paper concludes that greater consideration should be given to Article 5 as a complementary framework for researchers engaged in medical research involving children.

Challenges in shared decision-making in pediatric neuro-oncology: Two illustrative cases of the pursuit of postoperative alternative medicine

2020 ◽  
pp. 147775092092889
Author(s):  
Mandana Behbahani ◽  
Laura S McGuire ◽  
Laura Burokas ◽  
Emily Obringer ◽  
Demetrios Nikas
Keyword(s):  
Decision Making ◽  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Pediatric Patients ◽  
Best Interest ◽  
Multifaceted Approach ◽  
Parental Decision Making ◽  
Medical Recommendations ◽  
Complementary And Alternative

In caring for pediatric patients, a multifaceted approach in decision-making is utilized. The role of the medical team in complementary and alternative medicine is controversial. In cases of conventional treatment refusal by parents in pursuit of complementary and alternative medicine, there must be balanced decision-making, autonomy, and the best interest of the child. This report highlights two illustrative cases (ages 4, 17 years) of patients with brain tumor, whereby parents refused postoperative conventional therapy involving chemoradiotherapy, in pursuit of complementary and alternative medicine alone. Parental decision-making in complementary and alternative medicine, in lieu of medical recommendations, poses an ethical and legal dilemma that may impede care of the pediatric patient and compromise outcome of oncological care.

scholarly journals Role of parents in school management: A focus on decision making and accountability in resource provision in pre-primary schools in Embu County, Kenya

2019 ◽  
Vol 8 ◽  
pp. 344-360
Author(s):  
IRERI JEREMIAH WANJAU ◽  
Nyakwara Begi
Keyword(s):  
Decision Making ◽  
Parental Involvement ◽  
Primary Schools ◽  
School Management ◽  
Decision Making Process ◽  
Use Of Resources ◽  
Parents Involvement ◽  
Role Of Parents

There is a link between availability of resources and quality of education in schools. This is because children who are exposed to sufficient resources in schools develop positive self-concept and perform better in all curricular areas. This study was designed to explore the influence of parents’ involvement in decision making by the school boards of management on the adequacy of resources in pre-primary schools in Embu County. The study was guided by Systems theory of management. The dependent variable was adequacy of resources in pre-primary schools, while the independent variables were involvement of parents in decision making process and accountability of school management to parents. Results from data analysis revealed that resources available in most of the pre-primary schools were inadequate. It was also apparent that parental involvement in decision making process and accountability of school management on use of resources influenced the adequacy of resources in pre-primary schools.

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