Greisen G, Latour JM, Verhaest Y, Alfonso E, Bucher HU, Caeymaex L, Cuttini M, Embleton N, Novak M, Nuzum D, Peters J, Rombo K, Wood D
Click on the image to read the standard in brief.
Target group
Infants, parents, and families
User group
Healthcare professionals, neonatal units, hospitals, and health services
Statement of standard
Decisions of withholding or withdrawing life support are based on shared decision-making between parents and healthcare team taking into account the best interest of the infant and family in the context of the clinical situation and legal frameworks.
Rationale
In many societies and cultures, active life support to infants has only become accepted standard practice years after this was routinely offered to children and adults. This may reflect different views on the value of newborn life, and the uncertainty about future health. (1,2) In most high-resource settings, newborn infants born alive have full legal status regardless of gestation or size at birth, and legally all actions should be motivated by the child’s ‘best interests’. In the judgement of this, due emphasis should be put on careful observation and interpretation of the child’s own behaviour.
Deliberations about limiting life support should be taken in partnership with the parents, who should be a part of the shared decision-making process. Such decisions must be based on local data, international experience, national laws and yet be individualised as such decisions are of ultimate importance. (3–8) In all cases the values, experiences, conditions, and wishes of the family have to be taken into consideration recognising that the child is a child in a family and that the future of the life of the family is involved. (9,10) The responsible physician must be able to take full responsibility if the decision is questioned at a later stage.
Benefits
Reduced suffering of the infant (3)
Facilitated acceptance of the decision by involving families in the choices to be made (1,2)
Better provision of care by healthcare professionals when the benefit to the child and the family is well defined (consensus)
Reduced numbers of healthcare professionals suffering stress and ‘burnout’ when shared decision-making is used (11,12)
Components of the standard
Component
Grading of evidence
Indicator of meeting the standard
For parents and family
Parents are informed by healthcare professionals about the decision-making process as far as they wish and within the national legal framework. (1–3)
A (Low quality) B (High quality)
Parent feedback, patient information sheet1
Emotional, psychological, ethical, and religious/spiritual support is offered. (1,3,6,10)
A (Moderate quality) B (Moderate quality)
Parent feedback, patient information sheet1
For healthcare professionals
A unit guideline on withholding or withdrawing life is adhered to by all healthcare professionals.
B (High quality)
Guideline
Training on ethical decision-making processes is attended by all responsible healthcare professionals.
B (High quality)
Training documentation
The family is involved as much as they wish and the information given as well as the family’s responses and choices are recorded. (2,4,5,8,9)
A (Moderate quality) B (Moderate quality)
Clinical records, healthcare professional feedback
A clinical basis for decisions is created at multi-professional conferences involving healthcare professionals with the relevant knowledge and skills as well as healthcare professionals with the most direct contact with the infant and family. (5,7)
A (Moderate quality)
Clinical records, healthcare professional feedback
For neonatal unit
A unit guideline on withholding or withdrawing life support is available and regularly updated. (8)
B (High quality)
Guideline
Multi-professional case reviews of decision-making practice are organised where specific challenges are discussed. (7,8)
A (Low quality) B (Moderate quality)
Audit report2
Multi-professional debriefing meetings are organised routinely or when relevant after the death of infants following a decision to withhold or withdraw treatment. (7,8) (see Infant- and family-centred developmental care)
A (Low quality) B (Moderate quality)
Audit report2
For hospital
Training in ethical decision-making processes is ensured.
B (High quality)
Training documentation
A clinical ethics committee is available for advice.
B (Moderate quality)
Audit report2
For health service
A national guideline or legislation on withholding or withdrawing life support is available and regularly updated. (12–14)
A (Moderate quality) B (High quality) C (Moderate quality)
Guideline
1The indicator “patient information sheet” is an example for written, detailed information, in which digital solutions are included, such as web-based systems, apps, brochures, information leaflets, and booklets.
2The indicator “audit report” can also be defined as a benchmarking report.
Where to go
Further development
Grading of evidence
For parents and family
The development of parental peer groups is supported. (1–3)
A (Moderate quality)
Methods of parental feedback on the decision-making process are developed. (15)
A (Low quality)
For healthcare professionals
Mentor junior healthcare professionals in ethical decision-making.
B (Low quality)
For neonatal unit
Organise regular healthcare team meetings to remind healthcare professionals of the importance and relevance of family involvement in decisions of withholding or withdrawing life support. (8)
B (Low quality)
For hospital
N/A
For health service
Develop training programmes in communication around decisions in limiting life support.
B (Moderate quality)
Getting started
Initial steps
For parents and family
Parents are verbally informed about and involved in ethical decision-making processes by healthcare professionals.
For healthcare professionals
Attend training in ethical decision-making processes.
Organise regular team meetings to discuss ethical issues.
For neonatal unit
Develop and implement a unit guideline on withholding or withdrawing life support.
Develop information material for parents to be involved in the decision-making process.
Organise multi-professional meetings to discuss ethical issues.
For hospital
Support healthcare professionals to participate in training in ethical decision-making processes.
Initiate a clinical ethics committee.
For health service
Develop and implement a national guideline on withholding or withdrawing life support.
Caeymaex L, Speranza M, Vasilescu C, Danan C, Bourrat M-M, Garel M, et al. Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU. PloS One. 2011;6(12):e28633.
Caeymaex L, Jousselme C, Vasilescu C, Danan C, Falissard B, Bourrat M-M, et al. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed. 2013 Jan;98(1):F26-31.
Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014 Feb 1;38(1):38–46.
Reed S, Kassis K, Nagel R, Verbeck N, Mahan JD, Shell R. Breaking bad news is a teachable skill in pediatric residents: A feasibility study of an educational intervention. Patient Educ Couns. 2015 Jun;98(6):748–52.
Tobler K, Grant E, Marczinski C. Evaluation of the impact of a simulation-enhanced breaking bad news workshop in pediatrics. Simul Healthc J Soc Simul Healthc. 2014 Aug;9(4):213–9.
Rosenthal SA, Nolan MT. A meta-ethnography and theory of parental ethical decision making in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs JOGNN NAACOG. 2013 Jul;42(4):492–502.
Janvier A, Lantos J, POST Investigators. Ethics and etiquette in neonatal intensive care. JAMA Pediatr. 2014 Sep;168(9):857–8.
Mancini A, Uthaya S, Beardsley C, Wood D, Modi N. Practical guidance for the management of palliative care on neonatal units. Lond R Coll Paediatr Child Health. 2014.
Warrick C, Perera L, Murdoch E, Nicholl RM. Guidance for withdrawal and withholding of intensive care as part of neonatal end-of-life care. Br Med Bull. 2011;98:99–113.
Allen KA. Parental decision-making for medically complex infants and children: an integrated literature review. Int J Nurs Stud. 2014 Sep;51(9):1289–304.
de Boer JC, van Blijderveen G, van Dijk G, Duivenvoorden HJ, Williams M. Implementing structured, multiprofessional medical ethical decision-making in a neonatal intensive care unit. J Med Ethics. 2012 Oct;38(10):596–601.
End of life care for infants, children and young people with life-limiting conditions: planning and management | Guidance and guidelines | NICE [Internet]. [cited 2018 May 23]. Available from: https://www.nice.org.uk/guidance/ng61
Koninkrijksrelaties M van BZ en. Wet toetsing levensbeëindiging op verzoek en hulp bij zelfdoding [Internet]. [cited 2018 Feb 28]. Available from: http://wetten.overheid.nl/BWBR0012410/2012-10-10
