GUEST CORNER

The Story of a Perinatal Mortality Counseling Program

Kenneth R. Kellner, M.D., Ph.D.

Our guest article this month is written by Dr. Kenneth Kellner, Professor of Maternal/Fetal Medicine in the Department of Obstetrics and Gynecology at the University of Florida College of Medicine in Gainesville, Florida. Dr. Kellner shares with us his experience developing the University of Florida Perinatal Mortality Counseling Program.

I am frequently asked how I became a perinatologist "specializing" in mothers with stillbirths. It is certainly a "road less traveled." Although seeds were sown earlier, the blossoms appeared in 1978.

At that time stillbirth was a "non-event." After the diagnosis of fetal death immediate induction was initiated. Mothers were heavily sedated and no mention of the death or baby was offered, in order to spare the mother further emotional distress. Babies were sec-reted away and, although autopsies were strongly re-commended, no followup was of-fered. Women came into the hospital pregnant, went home not pregnant and had no idea what had happened in be-tween.

As a fellow in Maternal-Fetal medicine at the University of Florida I was assigned to review the autopsy reports for perinatal deaths to determine if any medical intervention was appropriate before a subsequent pregnancy. Coincidentally I had lunch with a graduate nurse studying the emotional response of families who had experienced perinatal death. We discussed her work, my assignment to review autopsies and also my interest in family centered care (I was putting together the first birthing room in the hospital). She suggested I read a recently published book, Maternal-Infant Bonding by Marshall Klaus and John Kennell. Their work made it clear that not reviewing autopsy reports was insignificant compared with the inappropriate way women were being treated prenatally and in labor and delivery. Further reading revealed a small body of literature suggesting the advantages of an open discussion of events and of interaction between parents and their dead newborn. I organized a meeting of individuals from fields with potential resources and skills in the area including nursing, pathology, genetics, neonatology, psychiatry, social services, clinical psychology, and pastoral care. Each subsequent meeting had fewer attendees as people felt they could help ... but as a consultant. The final group consisted of an obstetrician (myself), a perinatal pathologist (Dr. William Donnelly), and a social worker (Sandra Chesborough). We formed the Perinatal Mortality Counseling Program (PMCP) and, although the team has been enlarged temporarily (a research psychologist) and permanently (an OB resident and a perinatal nurse), the format and operation of the program has not changed.

Three guiding principles were established at the onset and have continued to be the foundation of the program.

1. Parents would be given as much choice as possible about their care and interaction with their baby. We had found little scientific support for any particular intervention (e.g. immediate induction; sedation; seeing the baby; disposal of remains), and, in particular, rarely found, in writing, hospital "policies" in this area. Most "rules"’ had been handed down by word of mouth (e.g. how long a dead baby could stay in the labor and delivery unit; where mothers recovered postpartum). We decided to begin with a policy of unbiased choice, then study parental choices and try to develop a more rational basis for intervention.

2. Anything is better than nothing. As this program was "added-on" to our regular responsibilities we realized we would frequently not have as much time to donate to these families as desired. Therefore, we adopted the attitude that as little as we might do was better than nothing being done. This has been a great stress reducer for team members.

3. You do the best you can with what you have. It was clear that our families had multiple problems (e.g. financial, social, interpersonal) in addition to the perinatal death. Although the interdisciplinary nature of the team was a great strength of the program, still we were often overwhelmed. Therefore, we established the goal of the program as doing our best to minimize the negative impact of this particular tragedy, NOT to otherwise change people’s lives. Again this has been a great stress reducer for the team.

We believe the interdisciplinary nature of the team is best suited to resolving the many problems these families have. Different family members relate best to different team members. Having male team members often seems to help generate more empathy with fathers. While all members are involved in helping the parents and families with supportive counseling, in our program each has a distinct role.

The obstetrician occupies a unique position because he has access to all the resources for optimal medical care. He coordinates in-house management and acts as a central source of information for the rest of the team regarding the status of the patient. The obstetrician provides information to the family regarding medical concerns related to the present and future pregnancy and arranges appropriate followup. Further, he serves as consultant and educator of other hospital staff, residents and students regarding care of patients experiencing perinatal death. Lastly, he can influence hospital policies and protocols for families’ maximal benefit.

The nurse is also an important interface between the family and the hospital as so much of the care given is by nursing. She can assess the patient’s needs and easily relate them to the staff and help coordinate nursing care. She also can provide medical information to families regarding tests and procedures. The nurse can act as a consultant and educator of the nursing staff and students and also influence hospital policies. The gathering of articles dealing with perinatal death psychology is her responsibility and this information is kept current.

The social worker has special training and skill in interviewing and assessing families’ non-medical needs. She is a valuable source of information regarding community resources and, when necessary, serves as a liaison between service agencies and the family.

The pathologist provides information about options parents have after the delivery. He provides information about the autopsy to the parents and other family members. He provides appropriate photographs of the infant and interprets reasons for any abnormal features. Lastly, he makes available to the family the remains of the infant.

The third year resident on the obstetric service is automatically on the team. This provides for formal resident education as well as a link to minute-by-minute care. It reinforces the concept that these women are still the patient of their primary physician and the team is acting only consultatively. The team does not assume responsibility for care or paperwork.

From its inception the PMCP has been a crisis-intervention program. After fetal death is diagnosed mothers who are not in labor or have a medical indication for induction may choose immediate induction or to wait until a time of their choosing to be induced. Either the team obstetrician or nurse is notified and they notify other team members and the first contact is made as soon as convenient. We try to visit the women in pairs. This gives the mother the opportunity to relate to different team members, we can more easily record information, topics are not forgotten and mutual support can be given after the encounter. Undelivered women are counseled weekly.

At the time of delivery, medical management is discussed with the physician and staff caring for the patient. This discussion is an important opportunity to educate the staff. Analgesia is tailored to the patient’s desires. Opportunity is given to see, hold, and have time alone with the baby. Footprints and instant photographs are provided in a specially designed folder along with a booklet written by the team.

During the postpartum stay in the hospital, the woman is seen at least daily. Discussion with the staff again affords an opportunity for education. The parents and family members are again given the opportunity to have their baby with them. The team discusses with the parents normal grieving and what they can expect. Potential reactions of other people in their lives are discussed as well as how they plan to inform their other children. Lastly, the program and followup are explained and a program card with all our telephone numbers is given for easy access.

The mother is next seen four weeks later at her hospital clinic visit for a postpartum examination and family planning. Again we try to have at least two team members present. The physical and emotional responses of the parents to the death are assessed and their normality reinforced.

When the autopsy report is completed and all information about the death reviewed by the obstetrician and pathologist, the woman and her family are invited to return for followup information and counseling. This usually occurs 8 to 12 weeks after the delivery. We are interested in the emotional welfare of all family members and especially try to identify any problems requiring further intervention. If needed, referrals to community agencies are made. Finally there is a full discussion of the autopsy findings and their implications for future pregnancies. A copy of the autopsy report with appropriate "translation" is given along with photographs of the baby arranged in a blanket taken prior to the autopsy. No further formal, scheduled contact occurs.

From January 1, 1979 to June 30, 1994, 1019 families have been counseled in the program. We include women who have experienced intrauterine death at any time beyond 13 weeks gestation or who have had a liveborn who has died in the first few hours of life. The latter are cared for along with pediatrics on an individual basis.

We have observed that, in general, all parents want contact with their baby, supportive counseling and information about the death. However, it is impossible to predict what a particular parent will choose, no matter the demographic subgroup (e.g. gestational age; maternal age; socioeconomic status; religion). We have not found adequate studies showing unequivocal long term benefit of any particular choice. Our original principle that all parents should have all choices remains valid.

We are particularly proud of two accomplishments. Kind, compassionate caring for these families has become the "norm" and is readily accepted and internalized by medical students, residents, and nursing students, the providers of tomorrow. A model for questioning "the usual way of doing things" has also been established. In addition, we have been able to reconcile the conflicts between medical definitions, vital statistics laws and parents’ needs regarding such issues as liveborn vs. stillborn, and gestational age. Now all deaths greater than 13 weeks are given the same care, choices and paperwork.

Judged by feedback from parents, changes in hospital policy, the reception of our presentations at local, national and international forums and our publication of a wide array of articles in this field, the program has been successful. This seems to be due to several factors. From the beginning, one individual in a position of power took responsibility for program implementation, record keeping and overall success. This has facilitated overcoming bureaucratic hurdles. The interdisciplinary nature of the team is best at resolving the many problems these families face. Having both men and women and functioning as a team offers families the opportunity to relate to different team members. In addition, if only one person was involved in the program, the emotional drain would be overwhelming and the team approach helps to share this load. Lastly, basic principles of operation were established before any patients were seen. This has resulted in remarkable continuity of care over this 15 year period.

This is how it all happened and what we do. Why I do it is another question. What I have learned from these families in tragedy has made me a better physician in the good times as well. The techniques and viewpoint I have needed have proven useful not only professionally, but also in my personal life. And finally, these families say "Thank you."

Selected Bibliography of Articles Related to the Experiences of the University of Florida Perinatal Mortality Counseling Program.

Kellner KR, Kirkley-Best E, Chesborough S, Donnelly W, Green M (1980): Perinatal Mortality Counseling Program for Families Who Experience a Stillbirth. Death Education 5:29-35.

Kirkley-Best E, Kellner KR (1982): The Forgotten Grief: A Review of the Psychology of Stillbirth. Amer J Orthopsychiat 52:420-429.

Kellner KR, Donnelly WH, Gould SD (1984): Parental Behavior After Perinatal Death: Lack of Predictive Demographic and Obstetric Variables. Obstet Gynecol 63:809-814.

Kellner KR (1990): Helping Families Who Experience Stillbirth. OB/GYN Report 2:435-439.

Revak-Lutz R, Kellner KR (1994): Paternal Involvement Following Perinatal Death. J Perinatol (In press).

Kellner KR, Rand C, Revak-Lutz R, Massey JK (1994): Parental Behavior After Perinatal Death: Twelve Years of Observations. (Submitted for publication.)