Latour JM, Greisen G, Verhaest Y, Alfonso E, Bucher HU, Caeymaex L, Cuttini M, Embleton N, Novak M, Nuzum D, Peters J, Rombo K, Wood D
Target group
Infants, parents, and families
User group
Healthcare professionals, neonatal units, hospitals, and health services
Statement of standard
Parents and healthcare professionals share all relevant information such as the conditions, prognosis, and choices for care of the infant, as well as the social situation, values, and preferences of parents.
Rationale
The goal of this standard is to ensure that caregivers understand the conditions of the infant, values, and preferences of the parents and those parents understand the prognosis and choices for care for their infant and receive support in their role in decision-making.
Parents often report that they do not feel that they participate meaningfully in important decisions for their infant’s care (1), especially when the clinical team has identified a life limiting condition or a high risk of survival with significant long-term disability (2), where communication is particularly challenging. Parents value shared decision-making (3) particularly where they are given choices for the direction of their infant’s care. (4) In order to participate in the decisions they need a trustful relationship with emotionally supporting healthcare professionals. (5,6) Effective communication skills are needed regardless of language, educational, cultural or socio-economic barriers, and a suitable, unpressured environment.
Open and honest information sharing is an important priority for parents of ill infants. (7,8) Healthcare professionals must seek to understand the social situation of the parents, their family values, and personal preferences, and must be able to explain the situation in plain language and compassionate manner. They must make sure that parents understand the situation, and that arising questions are elicited. Transparency and continuity of communication with parents is vital (9) whilst acknowledging that spontaneous communication that responds to changing needs and priorities is also crucial. (10) Care should be taken to ensure consistency in communication when different healthcare professionals members are involved.
Benefits
Increased trust of parents that decisions are individualised, based on clinical factors and respect for their family values (1,2,6,9)
Improved understanding of healthcare planning in the short term, but also in the longer term when parents may reflect on the decisions that were made (2,3)
Reassurance that the best decisions have been made by healthcare professionals in close dialogue with families (1,2,6,9,10)
Improved ability to cope with stress that comes with caring for ill infants (2,3,9)
Components of the standard
Component
Grading of evidence
Indicator of meeting the standard
For parents and family
Parents are informed by healthcare professionals how ethical decisions are made in the neonatal unit. (9,10)
A (Low quality) B (High quality)
Patient information sheet1
Parents are informed about the clinical situation. (1,2,11,12)
A (Low quality) B (High quality) C (Moderate quality)
Clinical records, parent feedback
Conditions and preferences of the family are actively explored. (3–5)
A (Low quality) B (Moderate quality)
Clinical records, parent feedback
Parents are offered assistance from an interpreter if necessary. (7,10)
B (Low quality)
Clinical records
Parents are given the right to bring family support or a spiritual adviser to meetings. (9,10)
B (Low quality)
Clinical records
For important decisions sufficient time to allow for appropriate reflection is given; multiple encounters may be required. (2,10)
A (Low quality) B (Moderate quality)
Clinical records, parent feedback
For healthcare professionals
Training on communication of complex clinical issues is attended by all responsible healthcare professionals. (10)
A (Low quality) B (High quality)
Training documentation
Sufficient time for meetings with parents is provided. (10)
A (Low quality) B (Moderate quality)
Clinical records, parent feedback
For neonatal unit
A private area for meetings between healthcare professionals and family is provided. (see NICU design)
B (Moderate quality)
Audit report2
Regular case reviews and training that includes discussing challenges in communication is conducted.
A (Low quality) B (Low quality)
Training documentation
For hospital
Training on communication of complex clinical issues is ensured.
B (High quality)
Training documentation
When designing neonatal units private rooms for parent meetings are included. (see NICU design)
In national curricula for healthcare professionals communication of complex clinical issues is included. (see Education & training)
B (Moderate quality)
Training documentation
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
Organise parent support groups. (10)
A (Low quality) B (Moderate quality)
For healthcare professionals
Organise annual communication training for healthcare professionals. (9,10)
A (Low quality) B (Moderate quality)
For neonatal unit
N/A
For hospital
N/A
For health service
Develop resources for interpreters to work face-to-face, via telephone or internet. (13,14)
A (Low quality)
Getting started
Initial steps
For parents and family
Awareness is increased among parents of their right to be fully informed and involved in discussion of the clinical course of their infant by healthcare professionals.
For healthcare professionals
Attend training on communication of complex clinical issues.
Include parents in the discussion of the clinical course and prognosis of their infant from admission to the neonatal unit.
For neonatal unit
Develop information material on the process of ethical decision-making in the neonatal unit for parents.
For hospital
Support healthcare professionals to participate in training on communication of complex clinical issues.
For health service
N/A
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November 2018 / 1st edition / next revision: 2023
Recommended citation
EFCNI, Latour JM, Greisen G et al., European Standards of Care for Newborn Health: Communication in ethically complex decisions. 2018.
