This document discusses ethical principles related to end-of-life care for neonates. It outlines when resuscitation may be withheld based on agreement between parents and physicians that intensive care will not improve survival or pose an unacceptable burden. While parents are the best surrogate decision makers, resuscitation is initiated if their preferences are unknown, and care can shift to palliative if continuing life-sustaining treatment is deemed not in the baby's best interest. The primary considerations for decisions are the chance of success, risks of treatment, potential quality of life, and minimizing suffering through palliative care. Support is also important for medical staff after a perinatal death.

1. Ethics and Care at the
End of Life
Marwa Elhady
Ass prof pediatrics
Al-Azhar University

2. • The ethical principles associated with neonatal resuscitation
• When it may be appropriate to withhold resuscitation
• What to do when the prognosis is uncertain
• What to do when a baby dies
• How to help parents and staff through the grieving process

3. Ethical principles apply to neonatal resuscitation
• Recommendations affected by culture context and available resources
• General principles:
Respect individual's rights to make choices that affect his life (autonomy)
Acting to benefit others (beneficence)
Avoiding harm (nonmaleficence)
Treat people truthfully and fairly (justice).
• Ask patients for informed consent
• Exceptions include life-threatening medical emergencies and situations
where patients are not competent to make their own decisions.

4. Parents role in resuscitation decisions
• Parents are the best surrogate decision makers for babies
• They should be involved in shared decision making whenever possible.
• For decision making: Parent need
Accurate honest information (risks/benefits of each ttt option)
Adequate time to think, ask questions, and seek other opinions.
• Obstacles
 Resuscitation is emergency need rapid decisions
 Little opportunity to achieve fully informed consent before proceeding.
 Uncertainty about medical condition, actual GA, survival, disabilities
 Complete information may not be available until after birth

5. Parents role in resuscitation decisions
• Parents are the best surrogate decision makers for babies
• They should be involved in shared decision making whenever possible.
• For decision making: Parent need
Accurate honest information (risks/benefits of each ttt option)
Adequate time to think, ask questions, and seek other opinions.
• Obstacles
 Resuscitation is emergency need rapid decisions
 Little opportunity to achieve fully informed consent before proceeding.
 Uncertainty about medical condition, actual GA, survival, disabilities
 Complete information may not be available until after birth

6. If both parents and physicians agree that intensive medical care will
not improve survival or pose an unacceptable burden, so it is ethical
to provide palliative care and not resuscitation.
If the parents' preferences regarding resuscitation
are unknown or uncertain
So initiate resuscitation and stabilization
& pending further discussions.
It is not ethically obligated to continue life-sustaining ttt
after resuscitation if both parent and physician decide
it is no longer in the baby's best interest
So may redirect from curative to palliative care.

7. The primary consideration for decisions
should be
what is best for the newborn.
1. The chance that the therapy will succeed
2. The risks involved with treatment and non treatment
3. The degree to which the therapy, if successful, will extend life
4. The pain and discomfort associated with the therapy
5. The anticipated quality of life for the newborn with and without treatment
Factors that should be weighed during decisions are :

8. Care of a dying neonate
• Minimize suffering by providing palliative care and analgesics for pain.
• Silence alarms and medical equipment before removing them.
• Remove any unnecessary tubes, tape, monitors, medical equipment
• Gently clean the baby's mouth and face.
• Wrap the baby in a clean, warm blanket.
• Chest auscultated intermittently as a very slow HR may persist for hours.
• Offer to bring baby to parent & Prepare parents for what they may see.
• Understand the cultural and religious parent expectations & wishes
• Take consent for autopsy needed for diagnosis or organ transplantation

9. Breaking parents bad news
• Support parents, be honest and speak in empathic and caring manner.
• If they chose name for their baby so refer to the baby by name.
• Summarize medical condition, prognosis, efforts done for diagnosis & ttt
• Explain the baby’s current condition.
• State clearly without euphemism that, despite treatment, baby is dying.
• Explain plan to care for dying baby and what options are available.
• Before parents leave the hospital, provide contact information

10. Support medical team after a perinatal death
• Medical team need support as they may feel sadness, anger and guilt
• Consider holding a debriefing session shortly after the neonatal death.
• Open discussion in professional, supportive, non-judgmental way.