PEDIATRICS FOR THE CLINICIAN
The following two articles represent sensitive descriptions of one parent’s stages of grieving following the death of her twin newborns, and a thoughtful description by the physician of how physicians may better help parents through this difficult period. As the author notes, “more information is needed on the effectiveness of such counseling, “ but in its absence tile authors
have made a strong case for greater involvement of physicians in counseling parents after the death of their children.-R.I.H.
Neonatal
Death:
Reflections
for Physicians
Barbara A. Elliott, M.A., and Herman A. Hem, M.D.
From the Department of Pediatrics, University of Iowa hospitals and Clinics, iowa City
When an infant dies, a bereaved family is left to face the same mourning processes as any grieving family. However, recent reports indicate that these families often experience the process with more intensity and for a longer duration. Cull-berg’ states that one third of the mothers in his study developed pathological mourning after one to two years. American fathers, as Kennell and Klaus2 point out, often react with overactivity and never completely resolve their grief. Bhkl
explains that siblings with extended grief
reac-tions are among the reasons for the development of her Early Crises Consultation Service. Clearly, the physician in contact with such a family has a role to play in their continuing recovery.
The purpose of this article is to focus on the physician’s role as counselor to a family following neonatal loss. Our personal experience and a review of the literature form the basis for specific recommendations regarding the physician’s role. (B.A.E. recently experienced the loss of twin
newborn sons at 7 and 8 days of life. A
coxsackie-virus B2 septicemia was suspected as the cause of death in each case. H.A.H. is the neonatologist who counseled the family after the twins’ death.) The various phases of mourning are described and recommendations for counseling are given at appropriate intervals.
The article is presented from the viewpoint of an intact, extended family that is interacting in the grieving process. We recognize that single
parents and parents separated from relatives and friends may go through a more extended process. The skill of a caring physician is especially essential under these circumstances when support is minimal, and more frequent visits than recom-mended here may be required.
Initial Contact
The grieving process follows a pattern even though each individual reacts with his own reper-toire of behaviors. K#{252}bler-Ross,4 Lindemann,5 Parkes, and others have described this pattern. An initial period of shock is followed by depres-sion and, finally, acceptance of the loss. The process, although a painful, self-centered ordeal, is essential for recovery.
The physician’s role, which began with the care of the infant and mother, changes with the infant’s death. His task is to help the family accept the death. There are three steps that facilitate this process: to make the death a reality, to make sure the grieving progresses to accep-tance, and to meet the individual needs of the
Received July 11; revision accepted for publication Septem-ber 19, 1977.
family during resolution of the grief.2 A series of interviews is initiated when the infant dies.
Upon the death of the infant, the physician has the opportunity to make the death a reality for the family. The family is informed sympathetical-ly of the infant’s death in a place where they have freedom to react. They should be allowed, even encouraged, to express their emotions, supported (physically, if necessary), and then given the opportunity to see or hold their infant. Contrary to popular opinion, this does not intensify or extend the grief.7
During the initial conversation, the circum-stances of the death should be explained and the feelings that the family can expect to have under these circumstances should be described. They can expect feelings of emptiness, anger, guilt, and depression, as well as exhaustion and difficulty sleeping and eating.5 They should be encouraged to talk about their feelings with each other and their children. Finally, they should be given a telephone number where a physician can be reached and they should be told that another meeting will be arranged in two or three weeks. The next meeting will be to answer questions and review the necropsy report, if appropriate.
The initial interview is often remembered only as a talk with the physician. The specific
conver-sation is lost in the trauma of the death. However,
the interview begins the communication between the family and physician; continuing contact is assured with the arrangement for the next inter-view.
Shock
The family experiences the shock phase of their grieving between the death of the infant and the next interview. This part of the adjustment commonly lasts one to six weeks8 and is essentially a time of denial. The expressions of their grief can take physical, verbal, or emotional outlets,9 but usually include aspects of all three. Commonly, fantasizing about the infant, crying, physical
distress, preoccupation with the death, and
isola-tion are experienced. In addition, feelings of emptiness, fear of the future, and overwhelming sadness are expressed.
Family relationships are intensely stressed during this time. Each member experiences grief commensurate with his pleasure in the pregnan-cy; the more pleased each was with it, the more intense the grief.7 Since grief is a highly self-centered process, each person isolates himself to try to resolve his own pain. In this way, the needs of the children and spouse are left unrecognized and unattended.
During this initial part of the mourning, there is often support from grandparents and other relatives. They come to be with the grieving family and share the loss. The second interview usually takes place when the relatives have left, two to three weeks after the death.
Interviews During Shock
The purpose of the next appointment is to
answer the parents’ questions, review the
necrop-sy findings, and determine if the family has begun
the grieving process. This interview can be an extremely trying experience for the family. It is usually the first return visit for them to the medical facility, and they may react with hostili-ty, tears, and anger. Staff reactions of coldness, indifference, or disapproval intensify these reac-tions. Everyone may benefit from a reminder to the staff to remain sympathetic and supportive.”
The conversation should include answers to the family’s questions, a discussion about their thoughts, feelings, and relationships, and a fore-cast of what they can expect. In addition, sugges-tions as to their family decisions may be appro-priate.
The questions they have are usually specific to their case. Answering them scientifically and as completely as possible reinforces the reality of the death and opens the conversation. At this point, a
further discussion of expected feelings and reac-tions is helpful. The points brought up at the death need to be reiterated and the normalcy of these reactions emphasized. Frequently, families are concerned that they are approaching insanity, and talking about their thoughts and feelings brings relief. The importance of communication
between family members must be emphasized.
Q
uestions about the couple’s relationship should be raised to establish how much communi-cation there is. A good way to open thisconver-sation is to ask each of them to explain how the
other is doing. Additional questions consider the communication with the children in the home. The children also need to share their thoughts, fears, and feelings; unless they too begin to resolve their grief, their defense behaviors may become permanent.
grief may help to anticipate their reactions. Finally, advice about contraception is frequently welcomed at this time. Libido can be intensified
during grief,’0 but pregnancy should be avoided
until the mourning process is further resolved.2 The interview closes with the arrangement for
continuing contact. A meeting should be
sched-uled in three to four weeks at which time the physician can determine how the family is
progressing and answer further questions. In the
interim, most families internalize the death and
begin to resolve the loss. Thus, they begin the depression phase of the adjustment process. During this phase, monthly interviews are gener-ally required.
Depression
When depression starts, the death has become a
reality. Each individual seeks a reason for the child’s death and tries to understand it. Common-ly this stage lasts six to eight months.” During this time adults torment themselves with questions about the meaning of life, religion, the physician’s expertise, and themselves. The children who have difficulties during this time exhibit nightmares, depression, regression, withdrawal, guilt, aggres-sion, or fear of death.3 Each of these problems demands resolution.
The strength of the family unit is tested at this time. If the individuals are angry and unrespon-sive to each other, it can lead to family
disorgani-zation and divorce. On the other hand, if there is a
common goal and communication while resolving these issues, a stronger, closer family can
2
The family slowly begins to come out of isolation during this period. Each person seeks some contact with others to share the burden. However, returning to previous routines can be extremely difficult, as the memories evoked and questions asked are painful.
Grandparents, other relatives, and friends often abandon the grieving family at this point. They see the family returning to a regular routine and
expect that the crisis is past. This is not true,
however, and the support of the interviews
becomes even more important.
Interviews During Depression
The purpose of the monthly interviews during this phase of the adjustment is to assure that the
grieving process is moving toward acceptance.
Also, the interviews serve to answer the many questions that arise and allow the family to ventilate. The conversation should include ques-tions about each family member, relationships
with other people, and a forecast as to what might be expected in the near future. The physician can expect tears, anger, and hostility in these inter-views. Continuing to maintain a sympathetic, calm manner and answering all questions with facts, current knowledge, and relevant research findings are the soundest ways to combat aggres-sive an’3
Each person, working through his grief, tries to
assign blame for the tragedy in an attempt to understand what has happened. When a parent expresses anger, whether at God, the physicians, each other, or himself, it is a sign of this effort to
understand. When the physician’s role is in ques-tion, the parent is angry and hostile toward him.
Support from social workers, clergy, and others
may help resolve this problem.’#{176} If a parent tries to assign blame to his spouse (for genetic or other
reasons), the family needs support and genetic
counseling.’0 Eventually, each parent assumes
guilt for the child’s death. There are few real reasons for self-guilt,” and careful evaluation of the parents’ concerns can relieve the issue.
The relationships in the family during this time depend on the amount of communication they have. Parents can help each other only if they
recognize one another’s needs and are willing to
listen and talk through each issue. During this time, the needs of the children to understand and resolve their grief must be appreciated and open avenues of discussion must be made available. The relationships the family has with other rela-tives and friends depend on how rapidly the
adjustment is progressing.
Forecasting what the family might expect in the next several weeks continues to be helpful. The circumstances and feelings that are normal
under these conditions should be emphasized, and the difficulty in reestablishing contact with people can be described. The depression phase of
adjustment becomes cyclical over time. The
intol-erable pain that comes with the questions seems constant at first, but eventually becomes intermit-tent, with episodes being farther apart. However, each episode remains intensely sad and can be triggered without warning. As the grieving process approaches the acceptance stage, the
episodes occur less frequently and last for shorter
periods of time.
Pathological Grief
During the depression stage, some people become morbid in their grief. Individuals who are most apt to develop pathological grief reactions are those who have a history of depression and
delayed or distorted reactions point to this prob-lem. Among the warning signs are inappropriate cheerfulness or hostility, agitated depression, continuing isolation, a recognizable medical condition (asthma, colitis, etc.), or an inability to cope with the grief.5’0 People with these prob-lems may require psychiatric aid.
Acceptance
As the grieving episodes in the depression stage spread out, it becomes less important to assign blame for the death. It is simply accepted that the child is dead. The individual is then experiencing the acceptance phase of adjustment which will continue for the rest of his life. There is sadness associated with the loss, but there is active
participation in life and planning for the future.
The family relationships stabilize, with more open communication and sensitivity for one another. The family unit is closer and considered complete; it is not missing a member.
The relationships that the family has with relatives and friends continue and grow. Those people who have supported the family through the grief often remain close friends. Those who have not been able to relate to the family during the crisis become acquaintances, and new levels of friendship and understanding are evolved.
Interviews During Acceptance
Interviews with the family may need to contin-ue at monthly intervals through the depression stage. They can be tapered off, however, when it becomes obvious that the physician’s role in the resolution of the grief has been realized (the death
is a reality, the grieving is progressing, and the
individual needs of the family are being answered). This can be accomplished by having the family schedule the appointments as they feel
necessary. Commonly, a series of four to eight
interviews is required.’#{176} Once the acceptance stage is reached, the appointments will have been
discontinued, save for those that are arranged to
consider a specific issue, such as pregnancy.
Another Pregnancy
An issue which required resolution at this time in adjustment is the question of future pregnan-cies. Of those who have experienced neonatal death, 50% strongly desire more children and 50% do not.’4 Those choosing to have another child should make the decision based on a desire for a larger family, not on the desire to replace the lost child. If a child is conceived as a replacement, it is a sigu that the family’s grief has not been resolved.
The family may require further support after the decision to attempt conception has been made because fears and memories are frequently rekindled during this time.
Financial
Aspects
A discussion of financial matters is always difficult following the death of a neonate. Physi-cians may be hesitant to charge for counseling services rendered to combat grief and, by the same token, the grieving family may avoid “bur-dening” the physician with their problems, espe-cially when similar services have been rendered gratis in the past. The need for family counseling following a neonatal death is apparent.’ ‘ Physi-cians should not treat these important sessions as excessive expenses for the family for, indeed, the
counseling sessions serve as a preventive measure
for many families that would not appropriately resolve their grief and thus require prolonged psychiatric care at far-greater expense. We feel that it is appropriate for the physician to charge the usual fee for service for the time spent with the family.
While the need for supportive counseling is apparent, we urge the initiation of large-scale studies designed to determine the amount and type of counseling that are most effective for the grieving family.
REFERENCES
1. Cullberg J: Mental reactions of women to perinatal death, in Morris N (ed): Psychosomatic Medicine in Obstetrics and Gynecology. New York, S Karger,
1972, pp 326-329.
2. Kennell J, Klaus M: Caring for parents of an infant who dies, in Klaus M, Kennell J (eds): Maternal-infant
Bonding. St Louis, CV Mosby Co, 1976, pp
209-239.
3. Blank H: Crisis consultation. intl Soc Psychiatry 21:179,
1975.
4. Kflbler-Ross E: On Death and Dying. New York, Macmillan Co, 1970.
5. Lindemann E: Symptomatology and the management of acute grief. Am I Psychiatry 101:141, 1944. 6. Parkes CM: Accuracy of predicting survival in the later
stages of cancer. Br Med I 2:29, 1972.
7. Kennell JH, Slyter H, Klaus MH: Mourning response of parents to the death of a newborn infant. N Engi I
Med 283:344, 1970.
8. Parkes CM: Bereavement and mental illness, part 2. BrI Med Psychol 38:13, 1965.
9. Fischoff J, O’Brien N: After the child dies. I Pediatr
88:140, 1976.
10. David CJ: Grief, mourning and pathological mourning.
Priniary Care 2:81, 1975.
11. Parkes CM: Bereavement and mental illness, part 1. BrI Med Psychol 38:1, 1965.
12. Gilson CI: Care of the family who has lost a newborn.
Postgrad Med 60:67, 1976.
Health Dev 2:29, 1976.
14. Wolff JR, Nielson PE, Schiller P: The emotional reac-tion to a stillbirth. Am I Obstet Gynecol 108:73,
1970.
ACKNOWLEDGMENT
We wish to thank Dr. Samuel Fomon for his review of the manuscript and Miss Marita Welsh for typing the mann-script.
Neonatal
Death:
Reflections
for Parents
Barbara A. Elliott, M.A.
iowa City
We have something in common. My baby died, too. In fact, two of my babies died. You and I know how hard life is when that happens. That is why I am writing this-to share with you what each of us has to feel, think, and talk about before time finally numbs the emptiness. Many of my feelings are hard to write about, but I know they are normal. I want you to know that too.
It takes a long time before these feelings are no longer a part of every day or even every hour. But life eventually regains its meaning. I hope that telling you my story will help you understand
your feelings and perhaps make things easier for
you.
I had
twin boys, and each died at 1 week of age.When my first son died, I was numb and full of
hope for the other. Then the second baby died too. I was shocked at what was happening to me and was left feeling totally empty. I wanted my babies. Every time I closed my eyes, I relived the experiences in the nursery. I could see each of them and wanted them. Nothing else in my life mattered.
I
felt very alone and was not able to care about other people. I ate only because food was put in front of me, and I did not sleep well. Every minute hurt as it dragged by. I wondered if I could stand it. I wanted time to go faster so the pain would not be so bad.My husband, Tom, was as numb as I. He
suffered the same shock at the babies’ deaths. He felt just as empty and could not care about anything else. Each of us wanted relief from the emptiness. We found ourselves clinging to each other for comfort. We made love for selfish reasons, but it was a losing battle at first. When we relaxed, our thoughts would turn to the result of sex-babies. Then we would both sink back to the bottom, thinking about our loss.
We had trouble relating to our children, too. We told them both, ages 2 and 4, what was
happening. Then we answered their questions.
The 2-year-old kept repeating, “Babies out of tummy. Babies dead. No more babies.” The 4-year-old understood our sadness and knew that the babies were never coming home. She had a series of bad days at home, but returning to preschool seemed to help.
I had a hard time caring for them. I was so wrapped up in my own feelings that I could not see how much they needed me. I was intolerant of them. Then the 2-year-old got the flu. As his fever rose, I kept thinking what it would be like if he died too. Then I knew how much he needed me, and how much I needed him to love. I was jolted.
I knew
I had not
been able to support or find joy in them.Our relatives were as shocked and saddened as we were. Our parents even wished it were
happening to them to save us, their children, from such pain. They all came and helped by caring for the children and the house. They cried with us, too. We all shared the emptiness, and when they left, we were better able to care for ourselves.
Friends sent flowers and cards. Some came to be with us for brief visits, and many called with offers to help. We had a close friend make the
arrangements with the funeral home. Some
people called to talk about what happened, but we were not ready for that yet. Those conversa-tions left me hurt and angry. We did learn that many people cared about us, though.
During this time, we had two people to talk
