Decision-Making and Grief
By Lori Ives-Baine, RN, MN, Toronto, Canada
When your baby was born too soon, it may have felt very overwhelming. This may have been a pregnancy filled with worry about the baby being big enough and far enough in the pregnancy to be able to be resuscitated effectively or may have been a sudden labor and delivery situation (Browning, 2002). Many decisions need to be made by parents of premature babies- names, how you want to be involved in your baby’s care and, for some parents, decisions about treatment options may need to be considered.
You may be experiencing grief even if your baby is stable- grief because the baby was born too soon, may have been very sick and was not the “perfect baby going home in a couple of days” that you anticipated. This grief is normal, and you need to make sure you express it, whether to your partner, friends and family or your baby’s medical team. You are not the only one who may be feeling this way (Dyer, 2005).
If your baby’s condition deteriorates, or changes, the medical team will work with you to understand what is happening but, sometimes, decisions like surgery, specialized treatments and other issues may need to have decisions made very quickly. As a parent, this can be very overwhelming, and grief may accompany these difficult decisions (Brinchmann, 2002; Pridham, 2006). You are encouraged to speak to your family and the medical team to help you answer your questions. Decisions like surgeries and specialized treatments all have associated risks, which you need to understand, in order to make the best decision at the time for your baby.
Even when you are comfortable with a decision, sometimes complications can arise, and they are usually no one’s fault- you are acting in your baby’s best interest along with the medical team. There may be more grief and loss when some of the complications of prematurity begin to be seen, like retinopathy of prematurity or bleeds in your baby’s brain, as they may have an impact on your family and baby’s future.
Your team will do their best to predict what impact these clinical issues will have on your baby. At some point, they may need to talk to you about limiting treatments if your baby is struggling to survive (breathing, brain, bowels or heart issues) and their outlook is poor. This may be the hardest thing that parents have to hear (Pridham, 2006).
However, you may also start to wonder if your baby can improve or if they will continue to get worse. If these ideas come to your mind, it might help to speak to your partner or your baby’s nurse about your concerns (Dyer, 2005; Pridham, 2006).
Grief, Loss and Bereavement
If the medical team needs to talk to you about limiting or withdrawing life-sustaining medical therapy, listen, ask questions, and consider how you feel about what you are hearing. Some families can accept the medical team’s recommendations and allow their baby’s suffering to end, and others, based on their beliefs or their hopes and dreams, struggle with this recommendation. There is no right answer and if you make your decision based on what you believe is best for your baby and their potential for recovery, you will make the right decision (Brinchmann et al., 2002; Callister, 2006; Glyn-Pickett, 2005). A decision to continue against medical recommendation can still be revisited if your baby does not improve (Brosig et al., 2007; Workman, 2001).
References:
Brinchmann, B. S., R. Forde, et al. (2002). "What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants." Nursing Ethics: an International Journal for Health Care Professionals 9(4): 388-404.
Brosig, C. L., R. L. Pierucci, et al. (2007). "Infant end-of-life care: the parents' perspective.[see comment]." Journal of Perinatology 27(8): 510-6.
Browning, D. (2002). "Saying goodbye, saying hello: a grief sojourn." Journal of Palliative Medicine 5(3): 465-9.
Callister, L. C. (2006). "Perinatal loss: a family perspective." Journal of Perinatal & Neonatal Nursing 20(3): 227-34; quiz 235-6.
Dyer, K. (2005). "Identifying, understanding, and working with grieving parents in the NICU, Part 1: Identifying and understanding loss and the grief response. ." Neonatal Network 24(3): 35-46.
Glyn-Pickett, J. (2005). "Dialogue, death, and life choices: a parent's perspective." Archives of Disease in Childhood 90(12): 1314-5.
Pridham, K. F. (2006). "Communicating with parents in the NICU.[comment]." Journal of Perinatology 26(2): 134.
Workman, E. (2001). "Guiding parents through the death of their infant." JOGNN - Journal of Obstetric, Gynecologic, & Neonatal Nursing 30(6): 569-73.
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