End-of-life decisions in neonatal intensive care

The challenge of providing compassionate end-of-life neonatal care is compounded when cultural differences occur and there are language barriers. This section addresses managing decision-making when family and medical views conflict over withdrawal and withholding of intensive care as part of neonatal end-of-life care. Ethnicity and religion influences the acceptability of withdrawal of intensive treatment (Warrick, Perera, Murdoch & Nicholl, 2011). For example, Muslims believe the deliberate taking of life is unacceptable and some believe that the ‘premature termination of life through acts of omission’ is also against their teachings (Gatrad, 2008). Spiritual leaders may offer support to parents and advice to clinicians with decision-making.

In Asian cultures, it is the duty of parents to do everything possible to prolong the life of their baby. Family members’ views may be in conflict with medical views regarding what constitutes the optimum quality of life and end-of-life treatment or care. The following approach to negotiating with the family is suggested:

• Listen respectfully and hear the values and views of family members.
• Explain the medical view as to why stopping treatment or life support is in the best interests of the baby and explain what quality of life means (some CALD cultures value length of life more than quality of life).
• Demonstrate awareness and understanding of the family’s need to do their very best for their baby and negotiate and balance medical, legal and cultural views to help family members accept medical advice. It is important to offer advice with empathy and compassion and to help reduce the family’s feelings of anguish about potentially not fulfilling their obligation to do the best for the baby from their perspective. If needed, seek support from a cultural support service and the medical-legal advisor in the organisation.