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Chaplaincy and Prenatal Genetics
This article is the result of a presentation made by the authors at the International Genetic Nurses Conference held in the Fall of 2000. The authors provide extensive information on the program for Chaplaincy support and genetic counselling for those persons experiencing a pregnancy termination. The article is the property of the authors and may not be used without permission.
Pregnancy is a wonderful and exciting time as parents look forward to the arrival of a baby and the experience of parenting. Concerns also arrive about the health of the baby. Most babies are healthy, however, fetal abnormalities are occasionally discovered and parents then need a great deal of emotional and spiritual support, as they struggle with a nightmare come true.
It is well documented that the loss of a baby due to genetic abnormality may cause severe long-term mental health problems.1,2 Our Genetics department has been striving to improve care to parents and individuals facing fetal abnormality. A close working relationship between Genetics and Chaplaincy has evolved in the past seven years. We wish to present our approach to patient care.
We are an ordained United Church of Canada minister who is the Director of Chaplaincy and a genetic counsellor at North York General Hospital in Toronto, Canada. We will describe how Chaplaincy and Genetics combine to address the needs of our patients.
Our Genetics department is a large general program, which began in 1984, in a community hospital with university ties. We have a large prenatal program, and do perform about 2600 amniocentesis procedures a year. Within our patient population there are a small number of patients who are admitted for pregnancy induction. Since 1994, there has been a steady increase in the percentage of those patients in whom Chaplaincy has been involved. Table I
Genetic counselling is a relatively new specialty in health care. It is the process by which patients or relatives at risk of a disorder that may be hereditary are advised of the consequences of the disorder, the probability of developing or transmitting it, and of the ways in which this may be prevented, avoided, or ameliorated.3
Implicit in the counselling process is the concept of non-directiveness. The aim is for the patient to make any necessary decisions when provided with accurate and complete information. This approach differs from traditional medical practice, where medical professionals give advice to patients and generally expect that this advice will be followed. Other important concepts are impartiality and being non-judgmental.
Patients with abnormalities discovered in the pregnancy must decide to continue on with the pregnancy, or to terminate. The option of consultation with pediatricians, neurologists, psychologists, or other specialists is always available to parents. In utero treatment measures are limited.
The Genetics and the Pastoral Services departments enjoy a very positive association, due partly to the relationship of trust that we have built together. We understand and respect one another’s work and how we can best serve our patients by teamwork. Another reason this relationship works so well is that we have well-developed communication tools. One of the most important being the monthly Genetics meeting. One of the chaplains always attends this meeting. Even though as chaplains, we do not understand all the topics discussed, it gives us a greater global understanding of the issues involved with the patients and families we care for together. Another key component in developing our relationship is the leadership for the team. The program director and medical director see the development of a team approach as beneficial, and they personally support the work of both the genetics staff and the chaplains. The interrelationship of spiritual, mental, and physical needs is valued. With the relationship well developed, one result is that we are able to offer a greater accessibility of support to the patients and families. Sometimes it is the genetic counsellor and at other times it is the chaplain who is available to sit at the bedside with the patient and partner during this difficult process.
Chaplain's Focus
The focus of the chaplain is to offer spiritual support and counsel while the patient and partner are in hospital, and to give post hospital care. The chaplain offers to meet with the patient and partner at any time, but most often it is after the procedure and before the delivery. Pastoral counselling is often an important element of care. Our aim is to assist with issues of loss and grief, and the need for closure. We can often help patients begin to deal with unfinished business that this loss raises for them. We encourage them to express their feelings in a safe setting. The feelings most often expressed are guilt, sadness, regret, and anger. In addition to the pastoral counselling, we discuss rituals. They include the multi-faith blessing that we have developed which includes a naming of the fetus if desired. The other ritual, which has been very well received, is our Fetal Burial Program.
Even though the chaplains take a more spiritual approach to the subject of grief and support for the patients and families, we also offer support to those who do not espouse any particular religious beliefs. Our main goal, which is the same as the genetics staff is to offer the most comprehensive, caring support to families at a most difficult time.
Counsellor's Focus
The focus of the genetic counsellor at termination is to assess and promote the patient’s emotional and physical health. After the initial problem in the pregnancy is suspected, the woman and her partner usually have two or three appointments with genetics during the time of investigation. Several tests may be needed to determine the diagnosis, and during this time, the anxiety level of the patient increases. When results are reported, parents learn the diagnosis at a visit with geneticist and genetic counsellor. Since a future of a pregnancy is involved, it is extremely important that parents understand the test results and diagnosis. Many of our patients are recent immigrants to Canada, and do not speak English well. They may need interpreters. They may be isolated, with no family or close friends for support. Some individuals struggle with conflicts between religious teachings and their concerns about handicap. They may not contact their own religious leaders but are pleased to talk to the chaplain. Referrals to Chaplaincy are offered to all patients.
If the woman decides to end a pregnancy, a process begins. The woman with her partner to accompany her is admitted to the short stay unit, a small general ward. The nursing staff is skilled and experienced. The obstetrician performing the termination is part of the Genetics program. Close communication is important. We use a form, which gives patient information, notifies the ward about any special issues, referrals requested. Empathetic bedside nursing care is very important, and the counsellor and chaplain are readily available to facilitate this. We have a psychiatrist in the program, who may see any of our patients on an emergency basis as required.
During the patient visits, the topic of seeing the baby after delivery is discussed. We encourage patients to view the fetus, but do not push. We stress that not all abnormalities are visible. The counsellor takes pictures, both for clinical use and for parental mementos. Footprints are also taken and given to parents. The baby is wrapped in a small flannelette blanket. Sometimes pictures are taken of the parents and fetus, if they desire. Occasionally parents make a repeat visit to view the fetus, see the chaplain and counsellor. All parents have a follow up visit to genetics to discuss test results.
The Blessing of the Fetus
The chaplain in the presence of the patient, partner/ support person, and counsellor performs the blessing. Our blessing was developed by the chaplains, and is used with people of all religious faiths. At this time, patients may have their own important religious rituals and prayers, which can be incorporated into the blessing. Occasionally the family’s own religious leader performs the blessing. The timing of the blessing is flexible to allow other family members to attend. A certificate of blessing is given to the parents.
Here are a few theological components of the blessing. We are careful to assess and understand ahead of time the religious and spiritual needs of the couple/family before we do the blessing in order to be most supportive. We begin with a general opening of the ritual about the grief and difficulty in letting go of this baby. A candle is lit in honour of the life of the baby and to invoke and remind us of God’s presence and to acknowledge that the love of God is with this family. Then a prayer is said for the baby, observing its existence, honouring its brief life, and offering it back to God. This is a very bold theological statement that many parents feel is important to make. They want/need to know that their baby is being cared for by their and its Creator. A naming of the baby takes place during this part of the ceremony if the family chooses to do so. A blessing of the baby and the family follows with a laying on of hands by the chaplain and by the family if they feel comfortable doing this. This allows them the opportunity to claim this baby as theirs, to feel that they are doing something good and kind for it at a time when they are feeling very sad, guilty and helpless. We will say more about this issue later. A prayer is also offered at this time for the parents and extended family and friends, in a gesture to acknowledge the depth of their grief and sorrow. Some families, parents and/or children of the couple, choose to attend the ceremony, but most often the couple elects to be alone. If the couple wants to include prayers and rituals from their own particular religious or cultural background they are offered the opportunity to do that ahead of time and they are included here. We often find that people want/need to say prayers not only from their own traditions but also in their own languages. The grief for a baby is very deep, and with the complications of genetic problems and choosing to end the pregnancy, families often need the comfort of their first language to aid them in talking about their feelings and expressing their faith. A final blessing is offered to close the ceremony and the candle is ceremoniously extinguished. We discuss the theology of remembrance. Does God forget us or are we forever in God’s care? Will these parents forget their baby or will it ever be part of their consciousness? We help them ask, Where will the healing come from? The parents are offered time alone with the baby so that they might say any final words in privacy. The blessing can be a vehicle of reconnection with others in what can be an isolating experience. It can also be a time of reconnection and reconciliation with God, family, and their own cultural traditions.
The Fetal Burial Program
Parents wishing to participate in the Fetal Burial Program sign the required documents and later receive an invitation to attend a graveside service at Highland Memory Gardens in North York. The services, held in the spring and the fall, are open to all faith traditions. During the service we include the name of the baby’s parents’ (excluding the last name to allow for confidentiality) which helps to acknowledge the existence of the fetus in their lives. This assists them with their grief work and shows them that they are not alone.
The Fetal Burial Program is offered to all families of babies who have died before 21 weeks. This includes genetic terminations, intra-uterine deaths, and miscarriages. The majority of families participating in the program at this time are associated with Genetics. The burial service is a graveside burial of ashes. This service helps in the grieving process, and offers an opportunity to say good-bye. There is no cost to the families who participate. A local funeral home provides the casket for the fetuses and transports them to the cemetery. At the cemetery the fetuses are communally cremated and a burial plot is provided. An anonymous donor has also provided a tombstone, which bears the hospital’s name and this verse. “In memory of those who were conceived in love… They are not where they used to be, but they are now wherever we are”. Unknown author. The grave marker allows the families to return at other times in a more private way if they wish. The format for this service is very intentional. Prayers are said for the fetuses and families. A blessing of each fetus is acknowledged with the ringing of a hand bell. The service is held out doors, rain or shine. This burial service brings together families who have shared a similar loss. Sometimes families will exchange names and phone numbers at the service, but we respect patients’ privacy and confidentiality.
The Service of Remembrance is critical in the healing process for many families. Hospital staff have also commented on how it has helped them in dealing with the deaths of these babies. We have been very careful to consult with our multifaith and multicultural partners in creating this service. The prayers have been designed so as to not highlight any particular faith, however sacred texts, of each faith group represented by the families, are read by genetics staff. Secular poetry is included for those who may not have any religious tradition. A meditation is given by one of the chaplains around the issue of grief and “from whence does our help come?” (Ps. 121)
Regardless of background, most people can acknowledge that they receive support from their faith group or family and friends. For those who feel completely cut off from their inner and outer resources, chaplains and counsellors continue to support them and to offer bridges to outside therapists.
Theological Issues
The very fact that chaplains are offered and involved raises theological questions for the patient, partner, and also extended family such as the grandparents. The chaplain gives patients an opportunity to express these questions in a safe and non-judgmental environment. In the context of this paper, it is not possible to enter into all of the theological questions in great depth, however, it is important for us to give them legitimacy by naming them. Regardless of religious or spiritual background the following theological questions or issues are often raised:
Questioning of meaning of life: life is unfair and/or meaningless:
When life is following the normal course of events, questions as to its meaning and fairness are not raised with such depth and all pervasive incomprehension as when a couple are facing the decision to end a pregnancy because of a genetic problem. With resonance to others in the same situation they ask, “why is this happening to us?” “We live a good life. We don’t drink or smoke. This isn’t fair. A father/mother shouldn’t have to make this kind of decision. I shouldn’t have to be burying my baby. Why, why, why?”
These questions underscore the devastating loss our patients undergo. Once they have made the decision to end the pregnancy, they begin to feel the weight of this loss. This is the loss of a 'wished for child'. These pregnancies are by far and large planned and eagerly anticipated. This is the loss of an opportunity to nurture. It is a loss of the dreams they held for the child expected. This is the loss of the patterns and routines of their life that they were expecting i.e. birth, parenthood, childhood joys and worries, growing old and watching their family grow up. This is a loss of family identity. This is a loss of their identity as parent to this child.
Questioning of faith:
It is not uncommon for families to struggle with the context and application of their faith in these situations. For many it forces them to reconsider what it is that they truly believe. How does their faith support them? What does their church, synagogue, mosque, etc. teach about termination of pregnancy? How can they reconcile what they are going to do with what they thought they believed? The answers to these questions raises the many feelings cited below, and most often the next question.
Questioning relationship with God:
“Where is God in this? What kind of God would do this to a little baby? Why is God doing this to us?” Individuals and couples often find themselves feeling anger towards God, feeling that God has unfairly treated them, and wondering if they are being punished for something. They express doubt in the reality of God and wonder about the faith group they have always turned to. Couples often feel like they are having to “play God” in even making these decisions. The basic theological issues here are abandonment, betrayal, and aloneness. This is very much a desert time of the soul.
Other couples ask similar questions and discover a renewed relationship with their God. They hold on with a faith that overcomes such doubts and fears trusting that their God is one of love and compassion, and who suffers with them. The chaplain’s role in any case is not to question, judge or change anyone’s faith, but rather to support the individual and family wherever they find themselves in their faith.
Many Feelings:
There are many feelings that surface with guilt, regret and fear being the most prevalent. Parents feel guilt because they are the ones who make the final decision about whether or not to terminate the pregnancy. They wonder what kind of parents they are to do this, but often feel they have no other recourse. They feel guilt often because of their religious upbringing. Some religious groups feel a greater amount of guilt because of their faith group’s teaching. For all faiths that revere life as sacred, this is a very guilt -inducing situation.
These families also struggle with the fear of judgment. They fear that their families and friends will judge them for what they are doing. Often they are right. They worry about what they are going to tell their families. We have found that sometimes extended family members and friends are judgmental of couples faced with this decision. Couples are also afraid that their faith group will ostracize them. They are afraid that God will punish them. One Orthodox Christian family decided to speak to their priest about what they were going through, and were told they could no longer come back to the church. Another patient was afraid to leave the hospital afterwards because she was fearful that God was going to strike out at her for what she did.
Another fear is around the topic of future pregnancies. Will they be able to conceive again? Will the baby be healthy? Can they go through this trial again? Will the next pregnancy turn out the same because God is angry with them for this decision?
Most people express feelings of regret that things couldn’t have been different. They think of the “if only’s”. It is a sign of their emptiness, sadness and loss.
Some of these feelings are expressed by the comments below that we received on our evaluation forms and in thank you notes from the families.
“You will never know how your kindness and support helped myself and my family through the beginnings of a difficult time in our lives. I know things will get better and time can only heal everything we are feeling-the tears, the sadness and emptiness of losing a child. You were one of the first people there for us. I thank you so very much for this. We are very grateful. God bless and you are always in my prayers.”
Unfinished business:
Unfinished business is not a theological term, but is definitely a theological state of the soul. These patients and spouses have to say hello and good-bye all at the same time. As one couple commented,
“Your humane gestures helped us face our loss. The meaningful blessing, gave us an opportunity to say farewell and hold our baby one last time.”
At pregnancy termination, issues with unresolved grief of the past can surface. It also might be a time when unresolved issues appear concerning God. Patients worry about something that happened, something they did, or about something they have a need to be forgiven for doing or not doing. One man who spent time with the chaplain because he was worried that the reason this pregnancy wasn’t going well was that he had had an affair years ago. At that time he and his former girlfriend had ended the pregnancy. He was questioning if he was being punished now. This was a “secret” he was not yet prepared to share with his partner. There are all kinds of past secrets, individual and family related, that emerge during this difficult time.
It is important to note here that meaningful memories are also raised at this time. Families pull together to support one another in love and concern as they share stories of birth, death, struggle and joy.
Pastoral counselling can sometimes help with other pieces of unfinished business, such as “Am I still a good person? Am I a failure as a person, or a parent?” Coping with these questions can begin as such families have indicated as below:
“Having you bless Matthew, made leaving the hospital without him, a little easier. The certificate, blanket, candle and ultra-sound picture has helped us cope with the loss.”
Need for closure:
For theological and emotional reasons, these parents have a need to begin to make closure on this loss in their lives. They need to say good-bye to their wishes for a child. They need to say good-bye to the ‘person’ they do not know but love. They need to break through some of the denial of this loss by holding, seeing, naming and praying for this baby. They need to deal with this loss in such a way that they begin to close this chapter, and to welcome a new chapter with renewed sense of hope. They also need to find a sense of peace about the decision, which they made.
Using faith as support and coping tool:
As mentioned earlier, many people question their faith, and many others use their faith as a way of coping with the questions, doubts, fears, and loss of this situation. Faith becomes an important support tool that many say is the only thing that ‘gets them through this.’ At this moment in a couple’s life, their faith moves from their heads into their hearts. It takes on a new significance and a new reality. One parent commented,
“Your love and compassion for us and our baby during our most difficult time enabled us to feel that God’s love was there with us. You held us up when we were falling.”
Plans for Improvement
Despite our success we recognize our deficiencies. One problem is that we can only offer cremation. For some families and for some faith traditions this is not acceptable or helpful for them. Also, only being able to offer the burial twice a year, means that some families must wait a number of months for the next burial. This expanded timeframe is also not acceptable to some traditions. In the case where this program is not helpful, the chaplains assist the families in arranging private funerals, memorials or graveside services.
All patients are given questionnaires relating to coping ability and perception of care. We began collecting this information in 1992. Table II gives the number of surveys returned and the number of negative comments. The responses were very positive about the care they receive, but there are negative comments, which show where changes need to be made, specifically in bedside nursing care, providing information, and attempting to reduce the waiting time for admission, which is usually between 2 and 7 days. Some of these comments have inspired the creation of our brochures on genetic termination, developed by the Genetics staff and the Chaplaincy department. We continue to work on the problem areas, by nursing inservice, by our monthly prenatal team meetings, attended by all staff, and by our fetal pathology rounds for all staff. We also wish to make sure that the nursing staff involved with those patients having a genetic termination are those staff who want to be involved. Training, communication, and involving the right staff have helped in this area.
The chaplains would like to take this team approach to other areas and services of the organization. They would like to develop relationships similar to this model with other teams and specialties.
Lastly, concerning the Blessing we offer at the time of delivery. We are presently considering creating a number of more religion specific blessings, rather than a generic spiritual one that is adapted. We intend to consult with our faith leaders for advise and counsel in this area.
In conclusion, North York General Hospital, through its genetics staff and chaplains, offers comprehensive patient care at the time of a genetic termination. Our focus continues to be compassionate care with an integrated approach keeping in mind the interrelationship of spiritual, mental and physical needs. “Full pastoral care, therefore, is more than empathetic listening. It is a task of conversing about God, of struggling together to discern God’s presence in pain and promise, of challenging one another to respond with faithfulness and courage to God’s ways among us, and of staying with one another during the long silences when (it feels like) God is nowhere to be found.”4
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Table I
GT Patients Seen by Chaplain
Year Saw Chaplain%
1994 8.8%
1995 30%
1996 25%
1997 30%
1998 61%
1999 56%
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Table II
Surveys were handed out by the counsellor to each person having a genetic termination of pregnancy and a separate survey to her partner if available. The surveys were undated, and anonymous. The surveys asked about the patient’s reactions to the diagnosis, and feelings about termination. The patients were also asked how they felt about the care given by genetics staff, hospital nursing and medical staff, and chaplains. Patients were asked to return the surveys to the genetics program.
Number of genetic terminations 1992-1999 525
# Questionnaires returned 220
# With one or more negative comments 52
Negative Responses to Questionnaire
About nursing care on SS unit 19
More written information needed 10
Wait for admission too long 8
About Pt’s own doctor 7
About obstetrician doing Gt. 7
About genetic counsellor 3
More help with religious concerns 3
Miscellaneous 4
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References:
1 Rand, CS, et al Parental Behaviour after Perinatal Death: twelve years of observations, J. Psychosom Obstet Gynae, 1998, Mar; (1)
2 Harper, MB, Wisiam NB, Care of Bereaved Parents: A study of patient satisfaction, J. Reproductive Med., 1994, Feb, (2)
3 Harper, Peter, Practical Genetic Counselling, Fifth Edition, Butterworth Heinemann, 1998
4 Cole-Turner, Ronald, Waters, Brent, Pastoral Genetics: Theology and Care at the Beginning of Life, Pilgrim Press, 1996, p.xvii
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Web Sites: On Early Pregnancy Loss
http://www.compassionatefriends.org/
http://www.compassionatefriends.org/stillbirth.htm
http://www.erichad.com/
http://www.angelfire.com/hi2/motherswithangels/poems.html#NoFootprints.txt
http://www.digitalrain.com/pbso/frames/frames.html
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Case Study
Our Case Study will illustrate how one patient was cared for at termination.
Her obstetrician informed Ms L, that the fetal ultrasound examination showed fetal ascities and a slow fetal heartbeat. A referral to Genetics with a repeat ultrasound examination confirmed this. The cause was a condition called fetal hydrops, or excess fluid in all the body cells. Ms L then met with a geneticist and genetic counsellor to discuss her options. She revealed that she was 32 years old and single. The father was working on a cruise ship, and unavailable. Ms L had a father and three sisters, with whom she was very close. She did not have a job, Her mother, estranged from the family, was an alcoholic. Ms L. was extremely distraught, and in fact, her physician had requested a psychiatric consultation because of a previous history of depression.
A psychiatrist is part of the Genetics program, and a referral was made. Many questions were asked of the counsellor before Ms. L could arrive at a decision about her pregnancy. She felt she had no choice but to terminate the pregnancy. The referral to the chaplain was offered and accepted.
Her sister accompanied Ms L at the termination procedure. At this time, it found that there was no fetal heartbeat-a result of the hydrops. Ms. L was then taken to the short stay unit. Because staff were informed in advance, an experienced nurse was assigned. The chaplain visited Ms. L in the short stay unit, to offer continuing support. The counsellor and psychiatrist visited. Ms. L discussed seeing the baby after delivery, and decided to do this.
The fetus was delivered early the next morning by the bedside nurse who was a calming presence. The nurse cleaned and wrapped the baby, and gave it to Ms. L. who held the baby tightly, weeping. The counsellor examined the fetus and pictures were taken. Footprints were taken, as a parental memento. Ms L. held her baby in her arms for about ½ an hour with her sister present.
The chaplain performed the blessing, in the presence of Ms. L, her sister, and the counsellor. Ms. L appeared to take comfort in the blessing, and named the baby. She regretted that her baby’s father was not present. Her sisters took her home. Ms. L. was informed about the fetal burial program, but declined this. She wished to have a private memorial service later. The chaplain agreed to perform this service when at a suitable time. Ms. L also declined an autopsy. She also declined a referral to the local perinatal bereavement group. Follow up after discharge, consisted of regular phone calls by both the chaplain and counsellor. Ms L stated that she had informed her partner during a recent visit.
Two months later, a follow up appointment took place. Ms L was given the pictures of the fetus. Since the chromosome studies were normal, and no autopsy report was done, little information could be given as to the cause of the hydrops. Ms. L spent a great deal of her waking time thinking about the baby and we felt that further psychiatric assistance would be beneficial. Her visits to the psychiatrist continued for 3 months.
Recently, Ms. L telephoned to say that she was ready to try to become pregnant again. Her social situation is unchanged. Her partner is not available. The memorial service has not been held. We are concerned about her. We do know that Ms. L has established a warm and trusting relationship with our staff. We feel that we have offered her the full complement of services.
by Joan Silcox-Smith BA, MDiv, Jeanne Kennedy, BScNEd, RN
Posted by editor on September 30, 2003 10:54 AM