How to Respond to a NICU Parent when the Situation Looks Grim

One situation that everyone hopes no NICU parent needs to face is the death of their NICU baby. Unfortunately each year 1,000's of NICU Parents must face the difficult realization that their NICU baby will not be discharged to home; their because their NICU baby is dying.

Every year nearly 30,000 infants die in the United States, many of them are in the Neonatal Intensive Care units (NICU) and Intensive Care Nurseries (ICN).
When a NICU baby dies it is difficult for the family and also for the NICU Team. Knowing what to say to NICU parents when the situation looks grim is helpful for NICU providers, other family members and friends.

Expressing Wishes and Providing Support in Response to Futility
Dr. Timothy Quill and Colleagues looked at the issues of wishes in response to loss and unrealistic hopes as part of the article "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes.

They reiterated the fact that "physicians who care for patients encounter many powerful and painful emotions, including anger, sadness, fear, grief, loss, hopelessness, and blame." Furthermore they pointed out that situations evoking loss, guilt, or hopelessness are particularly hard for physicians to respond to with empathy.

Quill and colleagues pointed out that "offering wishes instead of apologies is a way to convey empathy for the parent coping with the loss. expressing wishes has the power and potential to humanize the medical encounter in some of its most challenging moments."

Offering wishes is particularly helpful "when the emotion is unrealistic hope, loss, futility, or grief that seems overwhelming or otherwise very difficult to address." These are the situations when physicians should consider joining with the patient and family in the expression of a wish that their circumstances were different.

Some of the phrases suggested (or variants) that may be helpful for physicians, NICU providers, family and friends to use and express wishes include:

• I wish things had turned out better for you.
• I wish the news had been different.
• This has been a terrible loss for you. I wish it hadn't turned out this way.
• This is so hard for you. Just when our hopes were so high, for this to happen. I wish it had been otherwise.
• I will work with you to find a way through this.

What Helped You?

Most NICU parents can remember the awful things that people say to them. These leave indelible etchings in our memories.

I would like to encourage visitors to comment on the things people said or the phrases have helped you during your time of loss.

Note: This is a modified version of the article Tips on Offering Comfort to a Grieving NICU Parent published on the Type-A Mom Site in February 2008.

More:
Quill TE. Arnold RM. Platt F. "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med, Oct 2001; 135: 551 - 555.
Dyer K. Coping Strategies Used by Parents to Deal with their Child's Death. NICU Parent Support Blog.
Dyer K. Factors Important to Parents at the End of their Infant's Life. NICU Parent Support Blog.