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Main Page Site Index Getting Pregnant Pregnancy Parenting Pregnancy and Parenting Journals Fertility Nutrition Pregnant Moms Morning Sickness Women's Health Child Health	Main Page - Late Term and Neonatal Loss - Rights of Parents When a Baby Dies Rights of Parents When a Baby Dies - Choices or Mandates ? Effective ways of presenting choices to parents at the time of their loss by By Cathi Lammert RN, Executive Director, National SHARE Office Recently a young bereaved mother called to talk to me about the death of her baby at 17 week's gestation. She was overcome by the intensity of her feelings but voiced a concern about her care. At the time of her baby's death, she and her husband had decided not to see, hold or name their baby, nor did they want to know the sex of their baby. They both thought that knowing the sex of the baby would add additional grief to their already broken hearts. She was upset by the bereavement counselor's follow-up phone call. In the conversation the counselor told her "We have the pictures of your son. Would you like us to keep them or would you be more comfortable coming in to see them?". The mother was so shocked by this. Her rights had been violated! Her choice had not been respected. Twenty years ago when SHARE-Pregnancy & Infant Loss Support, Inc. began, the voices of hurting parents brought many caregivers to the realization that parents needed to have choices made available to them in dealing with their baby's death. We also realized that we needed to provide families with information regarding these choices and the decisions they were facing, as well as offering them support in carrying through with their wishes. It was also apparent that the average parent was not aware of their options plus they were vulnerable and overwhelmed with their grief. Subsequently many parents shared with us their positive and negative experiences at the time of their losses and we have gleaned valuable information from their experiences. The box on page 7 lists the rights of parents and babies that have been formulated and can be used as guidelines for institutions and as a handout for parents. "The term "rights" is not used as a mandate for the bereaved, nor as a militant statement of demands. It is an affirmation for parents who wish to be involved with their baby, to make decisions based on informed consent, and to assume the parenting role in meaningful ways despite the tragic circumstances. Every minute is significant, every decision important for the future peace and healing of these parents. Many, however, are afraid to request anything our society might consider morbid, unusual, or weird. This document serves as a guideline to the possibilities and options available to parents and gives them "permission" to follow their parenting instincts within the limits of state, local, and hospital policies."(1) This list of rights was written by Sr. Jane Marie Lamb, OSF, the foundress of SHARE by revising and enhancing rights that were based on a document first developed by the Perinatal Bereavement Team at Women's College in Toronto, Canada. In the thirteen years that I have ministered to families who have experienced the death of their baby, I continue to be touched by the individuality of each death. It does make sense. As one thinks about it, each footprint that is left on the hearts of his/her parents is unique and different from every other footprint. Therefore, the parents' reactions and choices will be different and varied. I think we as caregivers get into trouble when we assume each family will want to see, hold, touch, name and bury their baby. I have even heard caregivers say, "She has to see the baby." We need to be careful not to force but to gently give patients options. Some caregivers even feel they have failed if the bereaved parents did not choose the options he/she felt would aid in their healing. In the past year, a mom shared with me that she was forced to see her stillborn baby very quickly after delivery. She told me, "I was not prepared for this and it was not a positive experience for me. I needed more time to prepare myself plus I wish the nurse had explained what my baby looked like before she put the baby in my arms. I still have nightmares." Another mom shared with me that she refused to see her stillborn baby in the hospital. She stated, "It was the right decision for me at the time. I wish now I could have seen my daughter but I know if someone had forced me, it would have been a negative experience." There are no right or wrong choices. However, choices are influenced by the degree of information plus the amount of time bereaved parents have to make these important decisions. Also, I think the most vital part of the decision-making is how the choices are presented by the caregivers. As caregivers, we can play a very important role in the healing process by laying the foundation for a positive grieving process. Realize how special you are and how much your patients and their families look to you for compassion and guidance. Know it is an honor to share this devastating time with parents and their beloved baby. They will never forget your presence and your caring. Some of us, including myself, are in these roles because our lives were impacted by the death of our own babies. Many of us were not given all the wonderful options families have today. Some may think it is their duty to insure that each person make the 'right' choices since they did not have the opportunity. Be alert to this, as this can shade one's objectivity. On the flip side, I have had a caregiver say to me, "I did not chose to see my baby who died at 16 weeks. I still do not understand why we give families all these options." This caregiver made her choice but that does not mean it is the right choice for her patients. She has the responsibility to give her patients information and options even if she disagrees. The choices families make may not be our choices and this could be disturbing or make us feel frustrated or guilty. Acknowledge your own feelings because they are very real and share them with your co-workers. Also, share with your colleagues the bereaved patients' positive and negative responses to your care giving. I have found this type of dialogue invaluable because it emphasizes the necessity of presenting choices to our vulnerable patients. However, rest assured that if you have presented the options to the best of your ability with compassion, the choices made were the right ones for the bereaved families you serve at that moment. In my years of working with bereaved parents I have gleaned valuable insights and knowledge from each family I have had the privilege of being with for the hellos and goodbyes of their precious babies. Caregivers have shared with me that they often are uncertain if they have said the right words or explained the options clearly. It is important to be yourself, be authentic. Sometimes words may not totally be what one would consider "perfect" but if your caring heart is present, the bereaved family will notice your authenticity over your words. They will be forever grateful for your compassion and understanding plus your knowledge. I have found that before I have a conversation with the mom and dad that I need to acquire as much information about the patient and her significant other as possible. I read through her chart and prenatal record and then talk to her primary caregivers. It is important to know this information plus her response as it gives me a few insights. Also it prevents me from asking repetitive questions that could be annoying to the patient. I also ask the patient's caregiver if she and her support system have voiced any concerns. This better prepares me to possibly have answers to these worries or fears when I enter the room. I then discuss my plan of care with her primary caregivers. We use a checklist to enhance continuity of care plus an organized packet. Every staff person who cares for the patient and her family writes on this check list and it is a permanent part of the patient's medical record. The SHARE packet includes information and resources for the patient plus the necessary forms and paperwork for the caregiver. We also refer to the St. Joseph Health Center SHARE Manual that has been compiled to better assist all caregivers involved in caring for this hurting family. This manual also facilitates continuity of care as the answers to many questions that arise concerning policies and procedures plus common questions families may ask are addressed in it. Before I walk into the room to begin presenting the options, I say a silent prayer. This just helps me to become focused and allows me to be present to each family and their needs. I introduce myself and explain my role of caregiving to the each of them. I express my sympathy by saying "My heart goes out to you at this time." I am a 'touchy-feely' person and many times I will touch their hand or arm. However, some times I will sense they an not comfortable with touching, so I refrain from doing so in that instance. I sit down in a chair close to the patient. Sometimes, I am the patient's physical care nurse plus her SHARE supporter. Most of the time though I am there to assist with their emotional needs and concerns. I share briefly that I experienced the death of my baby several years ago. I let them know I do not know exactly how they feel but I will try to understand and acknowledge their feelings. I let them know how sorry I am about the loss or impending death of their baby. I assure them our staff will be here for them before, during and after the birth of their baby. I then ask if they would like to share with me their story or I have even asked "Would you like to tell me what this baby has meant to you?" As the parents share their story I usually discover some very important details, such as, the challenges of infertility had really stressed their marriage, or their children at home have been very involved with this pregnancy, or this was not her husband's baby, or she has had an elective abortion earlier and feels she is being punished. Also sometimes dads and moms share with me the hopes and dreams they had for this special baby. Ideally it is wonderful if there is time to spend with each family member before active labor progresses or before surgery. Often there is not time due to the patient's comfort level or the caregiver's availability. However, when there is time to discuss the meaning of this child in his/her family it has proven to be of great value to the patient and to SHARE's role. It assures a sincere interest plus builds a relationship with the family that facilitates their acceptance of the SHARE group in the difficult weeks to come. Caregivers have shared with me their insecurities about presenting choices to the moms and dads. To me, the way of presenting these options is as vital as the choice itself. I explain to the mom and dad, as well as other family members, that years ago we did not give families options and moms were heavily medicated to ease their emotional pain. But it has been found that healing is more difficult for moms when they do not have an active role in decision-making and it is most beneficial if decisions are made together as a couple. I assure them there are no right nor wrong choices but these decisions are theirs based on the information I will be providing. I also let them know most of these choices do not need to be made immediately but we will go over the choices at least one or two more times. And I assure them no one will be forced to do anything that is uncomfortable for them. Before proceeding, I ask if they have any questions or concerns. Sometimes this allows for a natural lead into the options; other times then are no questions and I begin as gently as possible. To be given the opportunity to see, hold and touch their baby at any time before and/or after death within reason. Instead of directly asking if they would like to see and hold their baby, I ask if they had thought of seeing the baby, "Can you share with me your feelings?" Many times fears about what the baby will look like arises. I let them know if this is a worry, a nurse or I will prepare them for possibilities, i.e., skin tears, skin discoloration. I do let them know, as with all babies, they will see special family features of each of them. I let them know they can hold the baby or put the baby in our special basket. Reassurance is given that this decision can be made during or after the birth and that they can have as much time as they need. I address their fears as honestly as possible. To have photographs of their baby taken, and made available to the parents or held in security until the parents wish to see them. Sometimes parents are unsure about this choice and I explain to them that parents have requested pictures after they have gone home and have had time to think about it. As caregivers we know that this is the only chance the parents will have for photographs of their baby to be taken. No one should be forced to take or to see the pictures and they should be kept in a safe place for the parent should they ever want to see or have them. I explain the process of taking these special pictures which include positioning the baby, special props and clothing. It is important to take an instant photo, 35mm pictures plus a professional picture, such as First Foto. Some families choose to take an active role and use their own camera, as well as video taping. Others may also wish to have family pictures taken. But, some may be uncomfortable and refuse to have any additional pictures taken and this should be accepted and not forced on the parents. To be given as many mementos as possible, such as, crib card, baby beads, ultrasound and/or other photos, lock of hair, feet and hand prints and record of weight and length. I explain that families have requested we give them mementos of their babies. I let them know we have available a baby book and items like a crib card, baby beads, photos, lock of hair, permanent feet and hand prints, weight and length. Parents have found great comfort picking out an outfit that the hospital provides or using one that they have brought from home. Any item that the baby came in contact with means a great deal to the parent such as a blanket or a prop from the picture. This is all tangible evidence that this baby did exist and it has been found that these items aid in the parents' healing. I acknowledge that these things may be overwhelming and can be made available to them later at our office. To name their child and bond with him or her. Instead of directly saying, "Are you going to name this baby?", I gently ask "Had you picked out names for this baby? Can you share them with me if you feel comfortable naming this baby." Many times I will have an immediate "Yes" that the baby will be named. However, sometimes I sense hesitation due to the significance of the name picked out. I allow them to share with me their reason for this special name. I assure them the decision is theirs and it is OK to change the name if that feels better. I also honor their decisions if it feels better for the baby to be "Baby Smith". I also let them know the decision can be made at a later date to name the baby. If a name is chosen, I begin to honor the baby by using his/her name in our conversations. To observe cultural and religious practices. When I was a new OB nurse, I was always concerned that I was not completely aware of each culture and religion and their beliefs. As years passed I attempted to educate myself by reading and attending workshops. I gleaned some insights through this process. I am more aware of different beliefs but have found that two individuals in the same faith may have different ideas. Therefore when ministering to parents, I ask the parents to share their individual beliefs with me. In the case of mixed faith relationships, an attempt is made to find a middle ground. Sometimes both ministers or rabbi or priest can assist with rituals. Other times, the hospital chaplain is an appropriate person. To be cared for by an empathetic staff. Many of the parents who contact me share that their healing was made easier through the sensitive caring individuals that assisted them during their darkest hours. It is imperative we continue to provide on-going education regarding perinatal loss to our staffs via workshops, videos, etc. Recent cuts in funding for education and time constraints can make this challenging. The newly released videos At a Loss For Words and Footprints on Our Hearts (2) could be purchased for continuing education or for new staff members. To be with each other. With today's family-centered OB units, hopefully, this is a given - that one's support system will be allowed to stay 24 hours a day, plus be near during all procedures. This should not only include the father of the baby but in the case of a single mom, her support person as well. To be given time alone with the baby. After they have had some time with the baby in my presence, I will ask them if my would like time alone with their baby. Before I leave I give them a couple of options to see if they are comfortable. a. I let them know that they can use the rocking chair. b. They can dress, undress or bathe their baby. c. Soft music/tapes/CDs are available. d. A bassinet is at the bedside if they would like to use it. e. The camera is available for private pictures. I let them know where I will be and that they can turn on the call light if they need me. I assure them that this is their time and we will not intrude. An additional request(s) may be made later to see the baby once the baby has been taken to the morgue. This request is honored. The baby is brought back up to the division so parents can have additional time with their baby. To be informed of the grieving process. Many times parents are unable to compute all the information we give them initially due to their feelings of shock. However, it is important that the basic feelings of grief are explained to them. The caregiver can give them an overview of the printed material in their packet. Also the mourning needs of siblings, grandparents and other family members should be addressed and acknowledged. Printed information explaining the grief process should be included in their take-home packet. To request an autopsy or pathology exam. Often the parents are frightened by the prospect of an autopsy or they are not clear about the need or reason for an autopsy. I ask them if they would like me to explain the procedure and the possible benefits. Their fears and concerns are discussed. I let them know they have a choice for a full autopsy or chest and abdomen only. The doctor and I often will discuss the other choices in genetic testing. Many will ask if they will get an answer to the cause of death and also how long it takes to get the results. To have information presented in understandable terminology. Everyone has the right to comprehend the material presented to them. It is imperative to speak in terms that parents will understand. Also due to their state of mind, they may need to have the information repeated. It is also important to have an interpreter for non-English speaking persons or someone to sign for a deaf person. To plan a farewell ritual, burial or cremation. Instead of asking the family, "Are you going to have a funeral?" I ask, "Can you share with me your feelings regarding having a funeral?" I acknowledge how difficult planning a funeral might be for them since this could be the first time young parents may be attending the funeral of someone in their immediate family, let alone planning one. I let them know we will help them along with their minister and/or funeral director. I show them our publication, Bittersweet…Hellogoodbye(3), and the realm of options it offers. I share with them the ceremony is theirs and can be as personal as they chose. We address their cultural and religious traditions in regards to the rituals. I also give them printed information regarding area funeral homes/cemeteries with options and costs. I have assisted many families through this challenging choice and I am always amazed at the individuality of each farewell ritual. It is vital as caregivers that we are aware of state and local regulations regarding burial. If their wishes are within regulations, they should be honored. To receive information on support resources. A list of support resources should be given at the time of discharge. A follow-up phone call may need to be made before the farewell ritual to confirm plans. Additional calls should be made to check on the family at established intervals and at difficult times, i.e., due date, anniversary. If a support group is run by the institution, follow-up letters explaining the meeting and upcoming meeting dates should be sent by the facilitator. Also, the availability of other resources such as library books and videos or newsletters should be noted. It is my hope that this explanation of the many choices that the newly bereaved parents are faced with has broadened your knowledge and insights as a caregiver. Resources 1. Parents' Needs and Rights When a Baby Dies, Sr. Jane Marie Lamb, OSF Health Progress, December 1992 issue. 2. Videos: Footprints on Our Hearts and At A Loss For Words are available through Paraclete Press at 1-800-451-5006. 3. Bittersweet…Hellogoodbye Edited by Sr. Jane Marie Lamb, OSF is available through the National SHARE Office 1-800-821-6819. SHARE is a nonprofit group dedicated to helping parents experiencing pregnancy and infant loss support. All of SHARE's information packets, correspondence, and support is free of charge for bereaved parents. They also publish a bi-monthly newsletter that is available to bereaved parents, free of charge for the first year thanks to The Employees Community Fund of Boeing-St. Louis. National SHARE Office St. Joseph Health Center 300 First Capitol Drive St. Charles, Missouri 63301-2893 1-(800)-821-6819 or (636) 947-6164 Fax: (636) 947-7486 http://www.nationalshareoffice.com/index.html ~ Miscarriage and Loss Section Guide ~ Table of Contents - Main Page General and Early Loss Late Term and Neonatal Loss Pregnancy Loss and Psychological Issues Feelings of the Fathers Marriage Issues Grieving Children and Siblings For Friends and Family Recurrent Pregnancy Loss (Multiple Miscarriages) and Testing Loss in a Multiple Birth Issues Surrounding a Poor Prenatal Diagnosis Multiple Pregnancy Reduction (Selective Reduction) Memorial Sites They're in Our Hearts Forever - Gestures of Love Holiday and Anniversary Struggles Links to Dedicated Support Sites Pregnancy After a Loss Poems and Inspirational Stories Songs of Grief and Loss Our Bookstore, Featuring Titles Dedicated to Miscarriage and Loss