Palliative care

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Authors

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)

Clinical records

Parents are supported in a way that meets their needs and respect their wishes. (1,3,4,10,8,13) (see Infant- and family-centred developmental care)

A (Moderate quality)
B (Moderate quality)

Parent feedback

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.

National Institute for Health and Care Excellence (NICE). End of life care for infants, children and young people with life-limiting conditions: planning and management [Internet]. 2016. Available from: https://www.nice.org.uk/guidance/ng61/resources/end-of-life-care-for-infants-children-and-young-people-with-lifelimiting-conditions-planning-and-management-1837568722885
WHO | WHO Definition of Palliative Care [Internet]. WHO. [cited 2018 May 23]. Available from: http://www.who.int/cancer/palliative/definition/en/
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.
Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol Off J Calif Perinat Assoc. 2002 May;22(3):184–95.
Tosello B, Dany L, Bétrémieux P, Le Coz P, Auquier P, Gire C, et al. Barriers in referring neonatal patients to perinatal palliative care: a French multicenter survey. PloS One. 2015;10(5):e0126861.
Cortezzo DE, Sanders MR, Brownell E, Moss K. Neonatologists’ perspectives of palliative and end-of-life care in neonatal intensive care units. J Perinatol Off J Calif Perinat Assoc. 2013 Sep;33(9):731–5.
Mendes JCC, Justo da Silva L. Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal. Adv Neonatal Care Off J Natl Assoc Neonatal Nurses. 2013 Dec;13(6):408–14.
Cortezzo DE, Sanders MR, Brownell EA, Moss K. End-of-life care in the neonatal intensive care unit: experiences of staff and parents. Am J Perinatol. 2015 Jul;32(8):713–24.
Williams-Reade J, Lamson AL, Knight SM, White MB, Ballard SM, Desai PP. The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography. Palliat Support Care. 2015 Apr;13(2):179–86.
Carter BS. Advance care planning: outpatient antenatal palliative care consultation. Arch Dis Child Fetal Neonatal Ed. 2017 Jan;102(1):F3–4.
van Dijk M, Roofthooft DWE, Anand KJS, Guldemond F, de Graaf J, Simons S, et al. Taking up the challenge of measuring prolonged pain in (premature) neonates: the COMFORTneo scale seems promising. Clin J Pain. 2009 Sep;25(7):607–16.
Carter BS, Jones PM. Evidence-based comfort care for neonates towards the end of life. Semin Fetal Neonatal Med. 2013 Apr;18(2):88–92.
Fielding A, Haddow G, Wilson S, Fernandes C. Parents’ and families’ experiences of care by health care professionals in the hospital setting following perinatal death: A systematic review. JBI Libr Syst Rev. 2009;7(8 Suppl):1–22.
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.