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Communication in ethically complex decisions

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

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    
1. 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 sheet
       
2. Parents are informed about the clinical situation. (1,2,11,12) A (Low quality)
B (High quality)
C (Moderate quality)
Clinical records, parent feedback
       
3. Conditions and preferences of the family are actively explored. (3–5) A (Low quality)
B (Moderate quality)
Clinical records, parent feedback
       
4. Parents are offered assistance from an interpreter if necessary. (7,10) B (Low quality) Clinical records
       
5. Parents are given the right to bring family support or a spiritual adviser to meetings. (9,10) B (Low quality) Clinical records
       
6. 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    
7. Training on communication of complex clinical issues is attended by all responsible healthcare professionals. (10) A (Low quality)
B (High quality)
Training documentation
       
8. Sufficient time for meetings with parents is provided. (10) A (Low quality)
B (Moderate quality)
Clinical records, parent feedback
       
For neonatal unit    
9. A private area for meetings between healthcare professionals and family is provided. (see TEG NICU design) B (Moderate quality) Audit report
       
10. Regular case reviews and training that includes discussing challenges in communication is conducted. A (Low quality)
B (Low quality)
Training documentation
       
For hospital    
11. Training on communication of complex clinical issues is ensured. B (High quality) Training documentation
       
12. When designing neonatal units private rooms for parent meetings are included. (see TEG NICU design) B (Low quality) Audit report
       
13. Healthcare professionals are adequately supported and appropriate facilities are ensured. (see TEG Infant- and family-centred developmental care, TEG Patient safety & hygiene practice, TEG NICU design) C (Moderate quality) Audit report
       
For health service    
14. In national curricula for healthcare professionals communication of complex clinical issues is included. (see TEG Education & training) B (Moderate quality) Training documentation
       

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
 

Sources

  1. Staniszewska S, Brett J, Redshaw M, Hamilton K, Newburn M, Jones N, et al. The POPPY study: developing a model of family-centred care for neonatal units. Worldviews Evid-Based Nurs Sigma Theta Tau Int Honor Soc Nurs. 2012 Dec;9(4):243–55.
  2. Fowlie PW, McHaffie H. Supporting parents in the neonatal unit. BMJ. 2004 Dec 4;329(7478):1336–8.
  3. 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.
  4. Shaw C, Stokoe E, Gallagher K, Aladangady N, Marlow N. Parental involvement in neonatal critical care decision-making. Sociol Health Illn. 2016 Nov;38(8):1217–42.
  5. 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.
  6. Cuttini M, Casotto V, de Vonderweid U, Garel M, Kollée LA, Saracci R, et al. Neonatal end-of-life decisions and bioethical perspectives. Early Hum Dev. 2009 Oct;85(10 Suppl):S21-25.
  7. Brinchmann BS, Førde R, Nortvedt P. What matters to the parents? A qualitative study of parents’ experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002 Jul;9(4):388–404.
  8. 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.
  9. King NM. Transparency in neonatal intensive care. Hastings Cent Rep. 1992 Jun;22(3):18–25.
  10. 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;
  11. 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
  12. Riksdagsförvaltningen. Patientlag (2014:821) Svensk författningssamling 2014:2014:821 t.o.m. SFS 2017:615 – Riksdagen [Internet]. [cited 2018 Feb 28]. Available from: http://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/patientlag-2014821_sfs-2014-821
  13. Jacobs EA, Leos GS, Rathouz PJ, Fu P. Shared networks of interpreter services, at relatively low cost, can help providers serve patients with limited english skills. Health Aff Proj Hope. 2011 Oct;30(10):1930–8.
  14. Masland MC, Lou C, Snowden L. Use of communication technologies to cost-effectively increase the availability of interpretation services in healthcare settings. Telemed J E-Health Off J Am Telemed Assoc. 2010 Aug;16(6):739–45.

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.

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