52: Death of an Infant

A newborn infant is dying or has just died. The mortality rate in the United States for newborns is 4.56 per 1000 live births. Recent reviews have focused on the importance of bereavement support and the profound effect health care providers can have on parents who have lost an infant. Studies have shown that a health care provider's insensitivity to a parent can contribute to difficulties in coping and may increase the risk of a complicated grief reaction. Nurses who received training for bereavement care were more likely to have a positive attitude toward perinatal bereavement care. Studies show that more physicians than nurses never received any formal training in bereavement care. Hospitals should establish training and protocols for an infant death so they can potentially decrease the traumatic effects.

1. Has the family been prepared for the death, or was it unexpected? It is important to prepare the family in advance, if possible, for the death of an infant and to be ready to answer questions after the event.

2. Was this an early or late neonatal death? Early neonatal death describes the death of a live-born infant during the first 7 completed days of life. Late neonatal death refers to the death of a live-born infant after 7 but before 28 completed days of life. After 28 days, it is considered an infant death.

3. Which family members are present? Usually, several immediate family members in addition to the parents are present at the hospital, which is good for emotional support. Each of the family members may adopt a special role. The family should be allowed to go through the immediate process of grieving the way they feel most comfortable (eg, on their own, with the chaplain, with their favorite nurse, or with the physician they trust) and in the location they feel most comfortable (eg, the neonatal intensive care unit [NICU] or family conference room). Attention should focus on both parents.

4. If the family members are not present, is a telephone contact available? It is standard practice to ensure there is a contact telephone number available for any sick infant. If the family members are not present, telephone contact must be made as soon as possible to alert the family that their infant is dying or has already passed away. In either case, urge the family to come in and be with their infant.

5. Are there any religious needs expressed by the family? The religious needs must be respected and the necessary support provided (eg, priest, rabbi, chaplain, or pastoral care). Every hospital has pastoral services, and it is useful to inform the chaplain in advance because some parents may request that their child be baptized before death. Remember that a patient's culture or religion may influence the families' decision on how to handle the time of death, autopsy, and funeral.

Not applicable.

Remember that the dying infant may continue with a gasp reflex for some time even without spontaneous respiration and movement. The heartbeat may be very faint; therefore, auscultation for 2–5 minutes is advisable. Legal definitions of “death” vary by state. It is essential to be familiar with the local legal requirements for declaring death.

1. Preparations. A recent review has reported on the behaviors viewed most favorably by parents after their infant has died, outlined in Table 52–1.

   1. The NICU environment. The noise level should be kept to a minimum. The staff should be sensitive to the emotions of the parents and the family. The infant and family members should be provided privacy in an isolated quiet room or a screened-off area in the NICU. Examination of the infant by the physician to determine death may be done in that same private area, with the family.

   2. The infant. The equipment (eg, IVs and endotracheal tubes) may be removed from the infant unless an autopsy is anticipated. In that case, it is best to leave in place central catheters and possibly the endotracheal tube. The parents should be allowed to hold the infant for as long as they desire. This type of visual and physical contact is important to begin the grieving process in a healthy manner and try to relieve any future guilt. Treating the infant carelessly by staff members is not tolerated well by parents. The practice reported in the literature of placing the deceased infant on an uncovered metal table or placed into a bucket after delivery is unacceptable. Parents are acutely aware how nurses care for the deceased infant. Bathing and dressing the infant in a caring manner and treating the deceased infant with respect is appreciated by the family. Families also appreciate when nurses took special photos of the infant and gave the family special mementos so they could have some memories.

2. Discussion of death with the family

   1. Location. Parents and immediate family members should be in a quiet, private consultation room, and the physician should calmly explain the cause and inevitability of death.

   2. News of the death. Studies show parents value clear communication. The physician needs to offer condolences to the family concerning their loss. News of the infant's death can be very difficult for the physician to convey and the family to accept. The physician must be sensitive to the emotional reactions of the family. Nurses, in one review, were perceived as the health care provider who was most likely to provide emotional support. The nurse's ability to partner with the family is very important in helping the family take steps in their ability to grieve. It is important that nurses participate in this process because they can provide more ongoing support through this difficult time. They can also guide new mothers and fathers of caring tasks that they can perform for their baby and create memories that will provide them a sense of comfort later on. Communicate the news of the death to all staff members who will be taking care of the mother if she is hospitalized at the time of the infant death. This includes dietary staff and housekeepers so they know the appropriate way to act.

   3. Areas of dissatisfaction from parents. Reviews have emphasized that parents are upset by lack of communication between staff members. Staff who did not know the infant had died and made comments, staff who avoided or were silent with the family, and staff who showed insensitivity or lack of emotional support all created great stress in the families of the deceased. Treating the mother and deceased infant with respect is important.

3. Effects on the family

   1. Emotional (grieving). A brief outline of the normal grieving process may be discussed. The stages Kübler-Ross identified are denial (“This isn't happening to me!”); anger (“Why is this happening to me?”); bargaining (“I promise I'll be a better person if …”); depression (“I don't care anymore”); and acceptance (“I'm ready for whatever comes”). Temes has described 3 particular types of behavior exhibited by those suffering from grief and loss: numbness (mechanical functioning and social insulation), disorganization (intensely painful feelings of loss), and reorganization (reentry into a more “normal” social life). Physicians who offered specifics to the family in what to expect in the grieving process were rated as the most competent physicians.

   2. Physical. Loss of appetite and disruption of sleep patterns.

   3. Siblings. It is important to discuss the impact of death on a sibling. A study was done to assess the developmental impact of surviving a sibling who died in the NICU; it showed that siblings born both before and after a death of an infant are at risk and in need of psychological support. Photos and family rituals are important for parents and siblings. Clinicians should allow siblings to be active participants in the infant's life and death.

   4. Surviving twin or multiple. Staff must be aware of the added stress on the parents looking in on a surviving twin or multiple birth.

4. Practical aspects

   1. Perinatal bereavement programs. Because the neonatal staff plays a major role in helping families cope with the loss of their infant, it is important for each unit to set up a comprehensive program to help families deal with their grief. Some units have set up a bereavement support service that includes a bereavement suite, bereavement coordinators, bereavement support (funerals and blessings, 24-hour communication, financial advice and benefits, provision of mementoes and keepsakes, sibling involvement and counseling, and follow-up). It is important to not only focus on the neonate's physical needs but to address the family's spiritual, religious, and existential needs. Recent studies show that intergenerational services should be offered and provide benefit for the entire family. Hospice care teams are getting involved in the prenatal arena (mothers with infants with known lethal anomalies) and give support while the infant is in utero and also in the NICU to address the process of dying and stages of grief for parents.

   2. Education. Recent reviews have reported that parents appreciated education from the health care providers. Parents want to have information regarding why the infant died and also specific information on the grieving process. Parents have indicated that staff members who kept them informed and provided honest answers with consistent information were valued the most. Hello Means Good-Bye by Paul Kirk and Pat Schwiebert (www.griefwatch.com) is an often recommended lay book that can help the family cope with the loss of an infant.

   3. Additional support. Family members should be asked whether they need any support for transport or funeral arrangements and whether they need a note to the employer regarding time off from work and so on. Social workers or case workers are usually available to assist in the hospital setting. Questions regarding maternity leave benefits and returning to work can be answered. Some units offer a 24-hour dedicated telephone line for bereaved families to be able to contact as needed.

   4. Bereavement photography. Gives consolation to parents after a perinatal loss. Includes pictures of the infant either alone or with family members done by staff, a professional photographer, or several organizations that help to ease the grief of NICU parents by taking professional photographs. These images can serve as a link to memories and feelings and help parents grieve and heal. Parents may wish to dress their baby in clothes or include mementoes in the pictures. It is important to respect the parents' wishes.

   5. Rituals. Rituals provide an ordered way to say goodbye to a loved one. They can be beneficial to individuals and families who have experienced the death of a child. These can include funerals, memory boxes (with name bands, cord clamp, lock of baby's hair, etc.), naming the baby, religious practices, and specific cultural traditions.

   6. Written permission. Should be obtained for the following: photography, mementos, autopsy, or biopsy.

   7. Organ donation. Occasionally, parents and immediate family members may have discussed organ donation before the death of the infant. If not, it can be brought up gently with the family, who will be given adequate time to reflect on it, taking into consideration the requirements for organ donation. Sometimes the parents may want to donate an organ, but this may not be possible because of the presence of infection or inadequate function of the organ before death. This should be explained carefully to the parents. Follow your institution's procedure for requesting organ procurement.

   8. Autopsy. Autopsy can be a vital part of determining the cause of death and may be important in counseling the parents for future pregnancies. It is always a very sensitive issue to discuss with the parents, especially after the loss of their loved one. Parents should always be allowed adequate time to discuss this themselves and with the family if they have not already made up their minds. A recent study on bereaved parents' perception on autopsy revealed that it is important to openly discuss the benefits of an autopsy; 90% of parents valued autopsy as a way to find out why their child died, and 77% knew it contributed to medical knowledge. Forty-two percent felt that the autopsy examination added to their grief, 30% found it a comfort, and 41% said it helped them with their loss.

   9. Documentation

      1. Neonatal death summary note. The physician may include a brief synopsis of the infant's history or a problem list. The events leading up to the infant's death that day, whether it was sudden or gradual, and the treatment or interventions performed must be noted. It is also important to note conversations with family members while the infant was dying, if not written earlier in separate notes.

      2. Death certificate. The physician declaring the infant dead initiates the death certificate, following strict guidelines for each county/state.

5. Follow-up arrangements

   1. Family contact. A telephone call from one of the medical team members should be arranged within the first week of death. A letter of sympathy can be sent. Another contact can be made at the end of the first month to comfort the family, share any further information, and answer questions. Some NICU teams may make contact again at the 1-year anniversary.

   2. Counseling. It is extremely important to discuss the arrangements for future counseling and refer the parents to high-risk obstetrics if appropriate. Genetic counseling may also be appropriate based on the specific case. Parents should be allowed to grieve for the death of their child and should be given the opportunity to contact the physician at a later date when they are more receptive emotionally. Siblings are at risk and may require psychological support.

   3. Autopsy follow-up. If consent for autopsy has been obtained, an autopsy follow-up conference after ∽6–8 weeks is essential. The presence of a geneticist at this follow-up may be appropriate. This autopsy conference not only provides the parents with concrete information but also assists in the process of grieving.

   4. The obstetrician, pediatrician, and family physician involved with the care of the mother or family should be notified of the death.

   5. The needs of the caregivers also should be considered. Dealing with grief, loss, and bereavement is one of the major stressors in the NICU setting. Several units have developed specific programs in this area, and resources should be made available to the staff as well. Some units have a palliative care team that receives specific training. They offer debriefing sessions for anyone in the NICU to attend.