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
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
Interdisciplinary neonatal palliative care safeguards the quality of life of the infant and the family when a life limiting condition is diagnosed.
Rationale
The goal of this standard is to ensure that infants do not suffer unnecessary pain or discomfort in a setting in which parents receive support to enable them to be involved in the care based on their wishes.
Neonatal palliative care integrates clinical support of the infant and family support, starting from the diagnosis of a life-limiting condition and/or decision. Palliative care may commence before delivery and continue into bereavement care, so that a seamless clinical service is produced. (1–4)
Neonatal palliative care aims to optimise quality of life for the infant and family, and to create an environment that whilst death is likely, some infants may live for prolonged periods. There are wide variations in neonatal palliative care practices. (5–8) Family oriented, interdisciplinary, neonatal palliative care is essential in providing optimal care (9) and building trust between families and the healthcare team. (10) It is difficult to determine quality of life in an infant with a life-limiting condition. As an example, the balance between being awake and in contact with the parents, whilst still receiving adequate treatment for pain and discomfort can be difficult to assess. However, structured observations to assess pain and comfort are available and should be used. (11,12)
Parents must be allowed to stay with their infant at all times in an environment that meets their wishes and spiritual needs. (13) Healthcare professionals must support themselves – reflective practice groups and facilitated debriefs are helpful. (2) After the death of their child, families should be offered support by professionals trained in bereavement care.
Benefits
Reduced suffering from pain and discomfort for infants (1,3,11,13)
Improved support for parents during palliative care (1,3,4,10)
Better informed healthcare professionals regarding care priorities and the wishes of parents (6–8,10,13)
Better support for healthcare professionals in their role as palliative care providers (6,7,10)
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 life limiting conditions of their infant and family support options.
B (High quality)
Patient information sheet1
Infants with life limiting conditions receive appropriate medication and care. (1,2,11,12)
A (Moderate quality) B (Moderate quality) C (Moderate quality)
Parents are supported in their grief rituals. (14,15)
A (Low quality) B (Moderate quality)
Parent feedback
For healthcare professionals
A unit guideline on palliative care is adhered to by all healthcare professionals.
B (High quality)
Guideline
Training on palliative care is attended by all responsible healthcare professionals. (1,3)
A (Moderate quality) B (High quality)
Training documentation
For neonatal unit
A unit guideline on palliative care is available and regularly updated.
B (High quality)
Guideline
Palliative care practice is integrated within direct care and with senior supervision. (3)
A (Low quality) B (Low quality)
Annual report
A specialist inter-disciplinary palliative care team is organised. (1,3,15)
A (Low quality) B (Moderate quality)
Guideline
Regular healthcare professionals debriefing sessions are organised. (1,3)
A (Moderate quality) B (Low quality)
Minutes of debriefings
Collaboration with other palliative care professionals such as hospice care or community care is established. (7,10)
A (Low quality) B (Low quality)
Guideline
For hospital
Training on palliative care is ensured.
B (High quality)
Training documentation
Specialists services are part of the neonatal palliative care team such as psychology, pastoral/spiritual and social care teams. (1,3,4)
A (Moderate quality) B (Moderate quality)
Annual report
For health service
A national guideline on palliative care is available and regularly updated.
B (High quality)
Guideline
Smooth transition from hospital to home or hospice is provided by a good collaboration of healthcare services with palliative care services. (1,3–5)
A (Moderate quality) B (Moderate quality)
Annual report
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.
Where to go
Further development
Grading of evidence
For parents and family
Affected parents are supported with the help of parent peer groups.
A (Low quality)
For healthcare professionals
Make counselling support available for healthcare professionals. (7,8,13)
A (Moderate quality)
For neonatal unit
Establish a palliative care team at every neonatal unit. (7)
A (Moderate quality)
For hospital
N/A
For health service
N/A
Getting started
Initial steps
For parents and family
Parents are verbally informed by healthcare professionals about the life limiting conditions of their infant and family support options.
The development of neonatal palliative care practice is encouraged by bereavement support organisations.
For healthcare professionals
Attend training on palliative care.
Provide comfort management to the infant.
Provide privacy and dignity to parents.
For neonatal unit
Develop and implement a unit guideline on palliative care.
Develop information material on palliative care for parents.
Explain to parents the transition to palliative care.
Support parents throughout the palliative care process.
For hospital
Support healthcare professionals to participate in training on palliative care.
Provide access to psychological, emotional and spiritual support services.
For health service
Develop and implement a national guideline on palliative care.
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van den Berg C, Alferink K, Latour JM, Valkenburg N, van Dijk M. International care practices around an infant’s death in the NICU: A survey study. In: Selected Abstracts of the 1st Congress of joint European Neonatal Societies (jENS 2015); Budapest (Hungary); September 16-20, 2015; Session “Other”. J Pediatr Neonatal Individ Med JPNIM. 2015 Sep 8;4(2):e040211.
van den Berg C, Alferink KTM, Latour J, Falkenburg JL, Dijk M van. PO-0719 Care Around An Infant’s Death In The Nicu. Arch Dis Child. 2014 Oct 1;99(Suppl 2):A489–A489.
November 2018 / 1st edition / next revision: 2023
Recommended citation
EFCNI, Latour JM, Greisen G et al., European Standards of Care for Newborn Health: Palliative care. 2018.
