1. Salladay, Susan A.

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Sometimes healthcare providers must ask parents to make ethical decisions about comfort care versus aggressive treatment for their gravely ill infants. But how can providers possibly impose on or expect someone already overwhelmed with grief to bear the burden of additional emotional pain? Yet parents are, of course, the rightful decision makers.


"Ethical decision making is the process of deciding the right thing to do when facing a moral dilemma. Healthcare dilemmas often occur when there are alternative choices, limited resources, and differing values" (Pozgar, 2012). Parents may be asked to make decisions about initiating complex treatments or discontinuing treatment that has already begun but is no longer effective. In these situations, providers help parents weigh risks in relation to benefits for their baby. Each individual (including each parent) may perceive risks and benefits quite differently.


It is during these difficult decisions that nurses often become the most deeply sensitive patient-family advocates. In these moments, nurses are the compassionate listeners who often, just by their presence, gently invite family members to speak aloud their fears, doubts, questions, and despair. They give family members the courage to voice the finality of a painful decision. Nurses are in an ideal position, as trusted confidants, to help parents search their hearts about "when enough is enough."


It's normal to be struggling with guilt and 'what ifs' about what happened.... Moms may face added emotions about having to deal with the physical aspects of giving birth, recovery from delivery, and fluctuating hormone levels which intensify the grief of missing the baby. (Danielsson, 2014)


Sometimes advocacy means helping family members decide about personal concerns that can have lasting effects. By helping parents understand their options, nurses can guide parents in choosing to hold a baby after death, taking pictures, saving keepsakes such as a lock of hair, and initiating religious traditions most significant within their faith.


Encourage the family to follow comforting grief rituals such as interacting with nature, lighting votive candles, saying a prayer, or whatever ritual brings spiritual comfort in dealing with the loss. Understand and support the family's expression of pain in its own way and in its own time. Encourage the family to create quiet and comfortable healing environments. (Ackley & Ladwig, 2013, p. 393)


Danielsson also notes that physicians may wish to do an autopsy after neonatal death. This can be helpful for closure or in planning future pregnancies. "Still, some parents may not be able to handle the idea... and may not feel ready to try again for a long time, if ever, and that's okay, too" (2014). Nurses can support parents in making this decision.


A number of dedicated organizations provide services, outreach, counseling, and support groups for parents facing these most difficult ethical decisions. One group, M.E.N.D. (Mommies Enduring Neonatal Death;, focuses its mission on 2 Corinthians 1:4 (NIV), "...that we comfort those in any trouble with the comfort we ourselves have received from God," offering services such as publications, music, keepsakes, family memorial websites/Facebook pages, links to over 50 other service-specific organizations (such as lactation management after perinatal loss, loss of a twin or infant in multiple birth), and excellent resources for healthcare providers. "Providers" include not only nurses, physicians and physician assistants, social workers, and chaplains, but also midwives, genetic counselors, ultrasonographers, and funeral directors.


God's Word speaks abundantly and tenderly of children and offers assurances of his compassion and comfort for those who grieve (i.e., Isaiah 43:2; Matthew 5:4; 1 Thessalonians 4: 13-14; Hebrews 4:15-16). But one Scripture is especially poignant in this unexpected context: "And he took the children in his arms, put his hands on them and blessed them" (Mark 10:16). For all parents who have endured the death of a baby, it is a picture-promise that Jesus is now holding their beloved child.


Ackley B. J., Ladwig G. B. (2013). Nursing diagnosis handbook: An evidence-based guide to planning care (10th ed.). St. Louis, MO: Mosby Elsevier. [Context Link]


Danielsson K. (2014). Coping with neonatal death or the loss of a premature baby. Retrieved from[Context Link]


Pozgar G. D. (2012). Legal aspects of health care administration. Sudbury, MA: Jones & Bartlett. [Context Link]