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Protect us from ourselves: Balancing the parental instinct of saving.
Nurs Ethics 2019; :969733019871691NE

Abstract

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.

Authors+Show Affiliations

Norwegian University of Science and Technology, Norway.St. Olav's University Hospital, Norway; Norwegian University of Science and Technology, Norway.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31505995

Citation

Ursin, Lars, and Janicke Syltern. "Protect Us From Ourselves: Balancing the Parental Instinct of Saving." Nursing Ethics, 2019, p. 969733019871691.
Ursin L, Syltern J. Protect us from ourselves: Balancing the parental instinct of saving. Nurs Ethics. 2019.
Ursin, L., & Syltern, J. (2019). Protect us from ourselves: Balancing the parental instinct of saving. Nursing Ethics, p. 969733019871691. doi:10.1177/0969733019871691.
Ursin L, Syltern J. Protect Us From Ourselves: Balancing the Parental Instinct of Saving. Nurs Ethics. 2019 Sep 10;969733019871691. PubMed PMID: 31505995.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Protect us from ourselves: Balancing the parental instinct of saving. AU - Ursin,Lars, AU - Syltern,Janicke, Y1 - 2019/09/10/ PY - 2019/9/12/entrez KW - Ethics KW - extremely premature infants KW - life-and-death decisions KW - neonatal nursing KW - role of parents SP - 969733019871691 EP - 969733019871691 JF - Nursing ethics JO - Nurs Ethics N2 - 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. SN - 1477-0989 UR - https://www.unboundmedicine.com/medline/citation/31505995/Protect_us_from_ourselves:_Balancing_the_parental_instinct_of_saving L2 - http://journals.sagepub.com/doi/full/10.1177/0969733019871691?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub=pubmed DB - PRIME DP - Unbound Medicine ER -