Living with Grief Following Removal of Infant Life Support: Parents' Perspectives

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Research findings reported in the literature about making life and death decisions for critically ill infants in the neonatal ICU focus primarily on the experiences of health care providers and the ethical dilemmas surrounding these decisions. Fewer studies focus on parents' experiences in making decisions about discontinuing life support for their infant, and even fewer address what life is like for parents following the deaths of their infants. This article expands on the concepts identified by parents as factors in their decision making and on the facilitators and barriers parents faced, and continue to face, in their grieving process.

Section snippets

Sample

After approval from the institutional review boards of the sponsoring universities, participants were recruited from a large support group for parents who experienced the neonatal death of a child. Recruitment material that described the study's purposes was published in the support group's on-line newsletter accessed electronically via the group's Web site. The theoretical sample for this study was comprised of 15 parents, four couples and seven mothers whose spouses chose not to participate.

Data collection

Data in this grounded theory study were narrative interviews. Each participant was asked the same opening question: “Tell me about your son/your daughter.” Parents then were asked to describe what it was like to realize that their infant was not going to survive. Parents were asked to describe what their lives were like immediately after their infant's death and how their lives are now, without the infant. Parents also were asked about their current feelings regarding their decisions and if, in

Making the decision

All participants spoke of the dawning realization that, despite hope and prayer, their infant was not going to survive. One parent stated that “the decision was pretty clear cut … He wasn't going to get better,” whereas another commented that “there wasn't a big decision … There wasn't any need to go on … He was just suffering, and we didn't want him to suffer.” Some parents perceived their infant to be “slowly dying, so if we did not remove the life support, he would die on his own;” others

Things they would have changed

Believing that “there was nothing that anybody could do to make it better … your baby's going to die,” the parents in this study did not express any guilt over their decision to remove their critically ill infant from life support and continue to believe that it “was the right thing to do” under the circumstances. They did, however, express some regrets about how they spent the time they shared with the infant after making the decision. These regrets centered primarily on three different areas:

Health care providers

Most of the study participants' experiences with health care professionals were of a positive nature. One father of a premature son reflected that “the nursing staff, the doctors … they really know what they're doing … not only medically, but dealing with us personally … that helped a lot.” The parents deeply appreciated actions acknowledging the infant as a person in his or own right before the death. The mother of a daughter who had congenital anomalies remarked that “one of the nurses wrote

Initial shock

Mothers repeatedly commented that, despite performing normal activities, they were essentially dysfunctional for lengthy periods of time. One mother of a term infant stated that she would “would get up in the morning … I would be … normal … after about 2 weeks, 3 weeks … act normally … take the little one to school, stay in the car for a while … come back home and get into bed for the next 6 hours … and cry, and do whatever I needed to do … and I'd say, “OK gotta go get her, so I guess I'd

Differences in grief between mothers and fathers

Some parents had been informed that differences in grieving would occur between couples that had lost an infant; others were not provided with this information. One mother who lost a daughter to a lethal congenital anomaly stated that being provided this information “helped save our marriage” because her husband “wasn't on the same page with me, and it almost seemed like a betrayal.” Although all couples commented that it was important for them “to stick together … with your spouse … and make

Family and friends

Many parents had very supportive families and friends, but others found themselves facing further hurt when people close to them did not recognize their loss. Parents frequently commented that “the reality that there was a child and a life that came and went seemed to have been lost on a lot of people” and that “not treating her as if she was a person that was here … is hurtful.” As one parent responded back to family members who viewed another family member's stillbirth at 4 months as more of

Feelings of isolation

Having the support of family and friends for the horrific decision they had to make “was important not … just our recovery … coming through grief … but knowing they supported our decision and supported us … made the process easier than … it would have been otherwise.” Several of the study participants, however, revealed that they have “never really told outside friends or distant families that we actually took him off the ventilator. … I didn't think it was anyone's business … except our

Remembering activities

Study participants identified several strategies for remembering their infant that helped them with their grief and loss over time. Most mothers put together a memory box or scrapbook containing the few “tangible things I have of her … which I share with her siblings, family, … just everyone.” Every day one mother wears “an angel of some sort … and that's what it's for … that's how I remember her.” Another mother wears “the little necklace that has your children's charms on it, … and I wear

Moving forward

With the passage of time parents realized that they had to “move on. … Life will never be the same .… You'll be forever changed, … but you do have to go on with your life. … You have to find a new normal for you.” A mother of a premature son stated that for her it was that “all of a sudden I realized it's okay that I don't cry every day. … I still cry, but I think you have to realize that there's still joy in life. … Yes, we lost a son, but life is still … the sun still comes up, and there are

Altered perspectives of life

All study participants talked about a shift in life priorities as they emerged from their intense grief and loss. “It kind of re-focuses you. … There are some things in life that really matter, and there are other things that just don't.” As one mother explained, “Things that used to seem like a big deal just aren't a big deal. My perspective has changed a little bit. I hope I'm more compassionate … to other people.” Their experiences were described as an “eye opener … you look at everything a

Spiritual/religious perspectives

Faith was a significant component for study participants as they went on with their daily lives. Some parents always were able to draw comfort from their faith: “That strong relationship I have with Him … I know carried me through that time,” “Through the whole thing, I really felt very strongly that God just really gave me a strength I never knew I had; …you know that when they're with the Lord, there is nothing better.” Others expressed anger at God while still embracing faith: “I am very

Discussion

Deciding to withdraw life support from one's critically ill infant is a painful and overwhelming experience for parents. The participants' descriptions contained in this qualitative work provide an understanding of that decision as well their ongoing grief as they moved forward with their lives following the death of their infant. These rich descriptions entail movement over time as the parents incorporate not just memories but the continued essence of their deceased infant in their daily lives.

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