Communicating with a family who is experiencing a stillbirth

Overview: summary

The support a family receives, both during and after the death of their baby can make a huge impact on their experience. Health-care providers are in a unique position to support and guide the family during a difficult time in their lives. Families remember the kind of support they receive. They appreciate compassionate care, clear communication, support in creating memories and smooth transitions. You can make a positive difference in the lives of bereaved families.

Many health-care providers feel anxiety and stress caring for a family who is losing a baby, as they understand the significance of this life event. Providers may feel helpless when there is a lack of resources, time and/or education on how to deal with an unexpected loss. Although it can feel overwhelming, you don’t have to be an expert to make a positive difference in the lives of families.

Families need direct, honest, and clear information in a variety of formats about what is happening to them, what is going to happen, and what care options are available to them. A family will likely be experiencing complex emotions, and may be in a state of shock and disbelief. They may need time and space to process what is happening, and they need adequate information and support to make informed decisions. They may also need emotional support or spiritual guidance, and should not be left alone for long periods of time.

Communication is very important, which includes both verbal and non-verbal communication. When talking to a family, use sensitive, non-clinical, and considerate language. Offer your full attention, adequate time to address questions and concerns, space for the family to process information, and opportunities to discuss available options. Discuss the implications, risks, and benefits of all choices. When an option is not available, they should be informed why. If the situation does not allow time for this, return to the family as soon as possible and allow them to ask questions and explore what has happened. If you are unsure if a family understands, it is best to ask. Body language is not universal, so it’s important to not make assumptions based on non-verbal communication alone.

Helping in the creation of memories can be very meaningful for families. This may be their only opportunity to parent their baby and create tangible evidence that the baby was loved and cared for. Many parents feel a strong sense of connection to these objects that were a part of their time with baby. Your role in encouraging and assisting with the creation of memories is very important, as there is only one opportunity to do this. Treat the baby’s body with respect and honour – help the family to do the same. Be flexible, open and non-judgmental to a family’s requests. This time is sacred to a family, and can also be very scary and overwhelming for them. They often need guidance and encouragement.

Ensuring smooth transitions between care providers can minimize distress for a family. Poor communication, cooperation or coordination between staff can cause unnecessary stress. Ensure everyone that comes in contact with the family is informed of their situation. When making referrals, inform the reason for their visit so the family doesn’t have to explain why they are there.

Many families experience grief following a loss, and need ongoing connection and support. Although many people will have their needs met through family and friends, offering referrals, resources and following up after a loss can be very helpful. A little bit of support and compassion can go a long way in helping families integrate this loss into their lives.

Introduction

Most health-care professionals are committed to providing sensitive and compassionate care. PAIL Network aims to support their work and to encourage others to adopt practices that are informed by families who have experienced the loss of a pregnancy or death of their baby. We know that some health-care professionals may feel anxiety and apprehension when communicating with a family. They may feel ill equipped to provide adequate care. Some may have experienced a loss themselves. We acknowledge this is difficult work.

The information in this document is intended to offer information and suggestions to health-care professionals on how to communicate with a family who is experiencing a stillbirth. Bereaved families and health-care providers in Ontario have written the material, with the assistance of the SANDS Guidelines for Professionals.

A stillbirth in Canada is defined as the death of a fetus prior to birth with a birth weight of 500g or more or a gestational age of 20 weeks or more. Throughout this document, the term “stillbirth” will be used, however we recognize some families prefer alternative terminology such as “death of a baby” or “end of pregnancy.”

We use the terms “partners”, “parents”, “families”, and “the person carrying the pregnancy” to refer to those experiencing the loss, to recognize the diversity of family groups, and that not all identify with the terms “mother” or “father.”

The information provided is not intended as an absolute guide. Every situation is different, every family is unique, and you will need to adapt your approach to each individual situation. We recognize that not all the suggestions are possible in your workplace. Some situations require immediate intervention and there simply isn’t the time or resources available to meet families’ needs in the way you would have hoped. Please consider what can work when you think about your own approach and workplace.

Approaching the family
  • Recognize this is a significant event. Losing a pregnancy or baby in later gestation can be a life altering experience for a family. They likely have developed hopes and dreams for this baby and have planned and envisioned their life with the baby in it (or as parents). They may have purchased baby supplies and created a space for the baby to come home to. They may be shocked that something like this can happen to them.
  • If you’re sharing difficult news, prepare for many different reactions and a wide range of emotions. Everyone reacts differently, but expect that parents will respond with strong emotion, shock, disbelief, anger, confusionh or disorientation. Sometimes families will act in ways that are incongruent with your expectations, such as with humour. Assume this is a vulnerable and devastating time for them.
  • Find out as much as you can about the family and their situation before approaching them.
  • Be aware that families may be open or guarded, depending on their previous experiences. You are not the first health-care provider they have encountered, and their previous interactions may not have always been positive, especially if they are from a marginalized community.
  • Ensure you have sufficient time to address their questions and concerns. If this is not possible, arrange for someone to be available to continue care for the family. Know that even in brief encounters, you can help a family feel cared for and supported.
  • If it is suspected that a baby has died, it can be very difficult for parents to wait in an area with other expectant parents. If they must wait for an examination or test, provide parents with a separate and private room. Try to prioritize them to minimize wait time. Offer them the option to leave the space and be contacted when you are ready for them. If none of these options are possible, acknowledge that this may be very difficult for them, and that you are sorry there is no private space for them. Small gestures of kindness are appreciated, such as a glass of water, sanitary napkins, warm blanket, etc.
  • Find a quiet, confidential, and comfortable space available to talk. Ideally it has a door that closes, and where there are no pictures of babies or sounds of babies crying. Try and find a space where the partner or support person can sit comfortably. Again, if this is not possible, which may be the case, acknowledging this will be appreciated by the family.
  • Find out if the family has a name for the baby. If so, be prepared to use the baby’s name when interacting with the family.
  • Find out if they are undressed and/or on an examination table. If so, give them an opportunity to get dressed and sit up.
  • Make sure that when you are speaking with other staff/colleagues about their case, that the family is not within hearing range.
  • Before approaching a family, make efforts to be calm, centered, and grounded.
Communicating with the family
  • Clearly identify yourself and your role.
  • Give them your full attention.
  • Be aware of your body language and tone. This includes: posture, gestures, facial expressions, and the tone of your voice. The family will pick up on your emotional state by how you carry yourself.
  • Sit down, bend down, or make sure you’re not standing over them. Sit face to face and make gentle eye contact if appropriate.
  • Check whether an interpreter or other support for communication is needed.
  • If you have difficult news to share, and a person is on their own, ask if they would like to contact a partner or another support person to join them. Tell them, “I have some bad news. Would you like to call someone to be with you before we speak?” Parents appreciate being told right away when there is a concern, even when it is unconfirmed or uncertain.
  • If they choose to wait for their partner or support person, try and ensure they are not left alone for long periods of time. Check in frequently.
  • No matter what you say or do, you cannot fix this and you will not be able to take their pain away. Resist the urge to reassure, find solutions, compare their experience to your own. You can make a positive difference in the lives of families who desperately need compassion and caring support.
  • Be direct and honest. Families often can sense that something is wrong before they are told, and appreciate a straightforward approach. This is important in building trust. If you’re unable to share news with a family (for example you work as a sonographer), let them know you are sorry, you don’t detect a heartbeat or you see something that concerns you, and you are going to get a doctor or someone else to speak to them as quickly as possible.
  • If you cannot offer accurate or sufficient information, be honest. Arrange for them to speak with someone more knowledgeable as soon as possible.
  • Be clear and succinct. Avoid euphemisms, such as, “Your baby is gone”. Say instead, “I’m so sorry, but your baby has died” or “I’m sorry, but your baby has died, there is no heartbeat.” It is important the family is not given false hope when there is none.
  • Don’t make assumptions that people understand what you’ve said by reading their non-verbal communication (for example, by nodding). Body language means different things to different people. Ask for clarification that they understand what you have told them. If you aren’t sure if they understand, ask open questions so they can reflect back to you what they know.
  • If the diagnosis or a prognosis is uncertain, acknowledge how difficult and frustrating this is for them. Let them know what to expect during the time they are waiting for an ultrasound, blood work, or other tests to confirm the situation. Where a baby’s prognosis is uncertain, it is important this is honestly explained to parents. Staff can suggest to parents that a parallel care plan for providing both active and palliative care should be devised in these situations.
  • If they need to return several times/make several trips for confirmation/tests, acknowledge how difficult and frustrating this is for them. When possible, streamline the process. Can they avoid going through registration each time? Can you see them at the beginning or end of the day, so they don’t have to be around many other pregnant people? Can they avoid a waiting room? Do they need a note for sick time off work?
  • Know that it is okay to have a human reaction and to show that you care. Families usually appreciate it when you express that you are sad for them and that you understand the gravity of the situation.
  • Express genuine concern and empathy through simple heartfelt words. Some people find the words “I’m sorry for your loss” soothing, while other may feel those words come across as obligatory or cliche. Some people prefer to hear expressions of empathy such as, “I know this is difficult for you to hear”, “I can see how devastating this is for you”, “Whatever happens, you won’t be left to face this on your own” or “We will be with you all the way through this”. Simple present silence, gentle touch when welcomed, and empathetic body language can also be powerful and supportive.
  • If you use medical or technical terminology, explain what the terms mean in simple language. If you need to describe what has happened, use the term and then explain what it means using non-medical words.
  • Avoid clinical language that may be offensive to the family. Some families find the term “stillbirth” to be very offensive when describing their loss. In general, avoid the words abnormal, deformed, failed/failure, or incompetent. Language can also influence their perception or understanding of what is happening.
  • If the reason for the loss is uncertain, acknowledge that this is very difficult for them, and that you wish you could offer them more answers. Many people will blame themselves or their partner for the loss. When possible, explain that it is no one’s fault. Do this several times.
  • If the loss is unexpected, the family will likely be shocked and unable to absorb any additional information. Try to keep it clear and simple and do not overload them with too many details.
  • If possible, give them an opportunity to process information, and to understand the reality of what is happening. It is helpful when staff are gentle and sensitive and allow time and space. The family may want their privacy at this time, but it can be reassuring for them to know staff is available and they are not abandoned. Return at a later time to explore options. It’s okay to check-in with them frequently. If you feel like you cannot be with the family or check-in with them, try to find someone who can.
  • Be prepared to listen and be sensitive to their needs. Take cues from a person about where they are at, what they want to talk about, and if they understand what is happening.
  • Ask questions gently. Invite them to ask you questions. Let them know it’s okay for them to be confused and to feel the way they do.
  • Remain calm and supportive, even when they express intense emotions.
  • Ask permission before touching. Touch can be very comforting and reassuring, but don’t assume they are comfortable with touch. Touching someone on the hand or shoulder is typically welcomed, but if they pull away, then touch might not be suitable. There can be cultural implications to appropriate touch, and what might be seen as friendly in some cultures, may be impolite or inappropriate by another. There may be cultural restrictions to touch. It is important to recognize there are variations within cultural groups, and the best approach is to not make assumptions.
Decision making
  • Present all their available options. The options available to a family may include surgical, medical, or expectant management. Explain any uncertainties, risks, and benefits. Offer evidence-based information.
  • Decisions may be influenced by a person’s personal, cultural, spiritual or religious needs. Care for a family must be individualized to encompass their choices whenever possible. Assumptions should never be made, as there is much variance within cultural groups. Acknowledging how difficult it is for them to make these decisions is very appreciated by families.
  • If a family needs to return home (or to the community or a hotel) to wait for a spot where they will give birth, this can be a very hard time for them. Many families will feel that they are being cast aside or that their babies are not important anymore. They may be distressed that they have to wait. Talk about this with this family. Acknowledge that it’s hard on them. Provide updates daily or as needed, even if a spot has not opened up. If possible, provide the contact information of someone who will be able to provide updates. Even when you have time or space limitations, communicate with the family regularly.
  • Ensure that parents have access to all the information you have available about their situation. Some people want to know more information, while others do not. Consider their views, concerns, and wishes. Some of their requests may not be possible. Sensitively explain the reasons why.
  • Remain objective. It’s important to be aware of your own biases and judgments, and ensure you’re not influencing their decision by how you’re presenting the information. Some families will be concerned about being difficult or questioning authority and will be very sensitive to what they think you want them to do. Encourage them to ask questions and to communicate their needs to you.
  • Parents may be influenced by the media and “miracle survival stories”, believing an intervention can be done. Clearly explain the situation and what is possible and not possible. Some people feel angry and distressed if they feel their concerns are not taken seriously. Many people will feel distressed that nothing is being done urgently, from their perspective, to “stop” the loss or “save’”the baby.
  • Although a non-surgical birth is generally recommended, this can cause a lot of anxiety and fear for families. If the baby has died, families will often want to have a caesarean and may be shocked that this option is not offered or available to them. Parents need to be offered full and detailed explanations of the potential implications and risks of cesarean births. Address their fears and give reassurance that they will be provided with continuous support. It is helpful for you to remember that many families will make this decision out of shock and a preference to ‘get things over with’. When possible, provide time. Slow things down.
  • Many factors play into the decisions a family may make. Whenever possible, offer the family sufficient time to absorb information and to have their questions answered before being asked to make a decision. This could be the most difficult decision they have to make in their whole lives, and it deserves time and consideration. In an emergency situation, offer opportunities to discuss what happened once things have calmed down. Offering time to speak again (for example, several weeks later) may also be helpful for families.
  • Whenever possible, present information in a variety of formats other than verbal. This is especially important if you don’t have time to answer their questions in detail or if they have language/communication barriers. Drawing pictures, writing down words for them to research later, using a variety of different terminology are all helpful ways of doing this. Some people are more visual and appreciate symbols, diagrams or charts.
  • Gently check for confirmation that they understand what their options are, they know what decisions they have to make, and when they need to be made. Be clear when there is time to make decisions, as they may feel pressure to decide immediately. Often a family’s initial reaction comes from a place of shock, and may change in a short period of time.
  • If the family expresses anger, blame or strong emotions, try and not take it personally. Anger and blame are common initial reactions, and important for the family to express, as long as you are not being harmed.
  • If they are struggling to make a decision or process information, inquire about who might be able to support them, and make efforts to include others (with their consent), such as a family member, elder or spiritual care provider.
Preparing a family for next steps
  • Inform the family what will happen next. Make sure the family knows exactly what they need to do and in what time-frame decisions must be made. Encourage any opportunities for them to make their own decisions about their care, and the care of the baby.
  • Prepare a family for what is going to happen next. This will be very different depending on the circumstances; whether the person carrying the pregnancy is in active labour, whether the baby has died or is expected to die during the labour and delivery, if the family plans to carry to term despite a life limiting diagnosis or must consider induction.
  • Be sure the family has a way of contacting you, or someone else, to have their questions or concerns addressed between appointments. Ensure they know when and how to seek help and when possible, know how to access someone 24 hours.
  • Be certain that if you say you are going to contact the family or meet at a particular time, that you do so. The family is anxiously awaiting communication with you, and will remember if you say you will contact them.
  • If available, offer the family written information or alternative ways of accessing more information. It is helpful if information is available in other formats for people with sensory or learning disabilities, such as large print, Braille, DVDs, CDs and/or visual images. It is also helpful if this information is available in alternative languages. Many organizations will have interpreter services available for staff.
  • Provide referrals for additional tests or procedures they’ve consented to, and make the referrals as soon as possible.
  • Encourage the family to reach out to trusted loved ones and communicate what they need. When possible, bend visiting hours or restrictions on number of visitors.
  • A family who is making a decision incongruent with their faith or belief system will be vulnerable to stigma, conflict and complex emotions. Understanding, support, confidentiality and non-judgmental care is important.
  • Offer them the services of a social worker, spiritual care provider, and/or palliative care resource (if appropriate and available).
  • If you are able, ask if you can contact someone for them (spiritual leader, family member, friend, elder, or community resource). Let them know where to access any local support and counselling services, including leaflets, web addresses, and/or helpline numbers.
  • Reassure them of their confidentiality. Let the family know with whom you will be communicating and sharing information with regarding their case. This includes other departments, health-care teams, GP or midwife, etc. They have a right to object to their information being shared.
  • PAIL Network has a booklet on stillbirth for families in six different languages. Families can always order a free copy by contacting PAIL Network and requesting one. Health-care providers can order booklets.
Following up and following through
  • Ensure a smooth transition between care providers. Poor communication between staff can cause unnecessary distress for a family.
  • Clearly document and record your interactions with the family, including what options, information, and decisions have been discussed. This way other staff can understand their history, and avoid giving parents conflicting or contradictory information. They can also avoid asking the family the same questions over and over again, which may cause distress for the family, and/or cause them to lose confidence in a decision that was made. When applicable, write down their baby’s name, and encourage others to use it.
  • Make note of the family’s personal needs that may help in the family’s transition between care providers. For example, if they prefer a gender-neutral pronoun, if they are a single parent, if they eat Kosher or Halal, etc.
  • When making a referral, inform other teams, departments, and units of the reason for their visit so that their arrival is expected, someone is there to greet them, and the family doesn’t have to explain why they are there.
  • Everyone that comes in contact with the family, including administrative and cleaning staff, should be informed of their situation. It can be very distressing when someone approaches a family assuming everything is okay with their pregnancy or baby. Many places will use a special symbol, such as a butterfly on the outside of their door or chart, to identify them to other team members.
  • If the family is carrying to term after receiving a life limiting diagnosis for their baby, it is especially important to communicate their care plan with other care providers, as they will encounter many who will assume they do not understand their options or decision.
  • Allow opportunities for the family to change their mind, whenever possible. It is common for parents to be in shock and not know what they need/want right away.
  • Take steps to allow (or not allow) visitors as per family’s request.
  • Ask if the parents want fetal monitoring (if the baby has a heartbeat) to identify the moment the baby passes. Some families want this option, and some do not.
  • At times, families will be placed in an area that is away from other birthing rooms and crying babies. While many families will appreciate this, some may not. Some parents report feeling tucked/hidden away and left alone. When possible, offer the choice. You could say, “Some parents really don’t want to be where they will see other pregnant people or hear crying babies. Other parents want to be treated the same. What would you like?”
  • If there is no alternative space outside of the maternity ward for a family, and they communicate that it is distressing for them, do what you can to minimize their exposure to other babies, people in labour, photographs of babies, announcements etc.
  • Let them know where to access local support and counselling services, including leaflets, web addresses, and/or helpline numbers. Talk to them about PAIL Network.
Creating memories
  • When appropriate, assist (or find someone to assist) the family with creating a plan for the birth and memory making (bathing, dressing, photography and hand/foot prints, hand/foot molds, etc.).
  • When appropriate, assist (or find someone to assist) the family in making burial or cremation arrangements. Let them know they can have a funeral, burial or cremation at any gestation. Many funeral homes will provide their services for free.
  • Consent is required for most memory making activities, including photographs, hand and foot prints/molds or cutting a lock of hair. It is not best practice to take pictures or do an activity just in case the family changes their minds later.
  • Now I Lay Me Down To Sleep is an organization that connects professional photographers to families experiencing perinatal bereavement. Usually, photographers are willing to photograph babies that are 22 weeks gestation and older, although there may be some variation in this depending on the family’s situation. To find out if there are any photographers available in your area, please go to their website. If there are, inform the family of their services. They will take photographs of the baby and family before, during or after the birth. Get permission from the family before requesting a photographer. Sometimes, it is worth looking to see whether a photographer is available in your area before offering to the family. This many help to avoid disappointment if no one is available.
  • If no photographer is available, Now I Lay Me Down To Sleep has online resources and guides available. If applicable, help the family find someone to take photos (for example another local photographer), or do it yourself.
  • If the family does not want to hold their baby or participate in any memory making, do not take their first response as the final response. It is very common for the family to reject the idea at first. It helps families for you to normalize activities and to make suggestions for them. Many families will not know what options they have, and will be unable to think of things that they can do with their baby.
  • The family will be looking to you for guidance. Try and remain neutral and non-judgmental. Help the family feel it is normal to hold and interact with their baby. They may be afraid to touch them. One possible approach is to say, “Some families really want to see and hold their baby. Other people don’t want to do either. Both are normal and okay. What do you think?” Sometimes a family won’t want to see their baby, but they will still want to hold them (wrapped in a blanket). Other times families will be afraid of what their baby will look like. Talking about this many help to alleviate their fears. As a health-care provider, you can prepare the family by describing the baby to them. Sometimes you won’t know what the baby will look like when they are born, and it’s okay to say this. Talk about your plan. Will the health-care team describe the baby to the family first, and then they will make a decision about memory making? Sometimes what families are imagining is much worse than reality. Even normalizing that it can be scary for many people is helpful.
  • Be aware that you are a part of their story. You may be one of the few people who will know their story or will meet their baby. This is an important role and a privilege.
  • If you are present when the baby is born, tell the family their baby is beautiful/cute/looks peaceful or other positive observations. This may be the only opportunity for another person to witness their child. Refer to the baby by name. Offer to show the parents how to dress or bathe their baby. Hold them gently and treat them as if you would any other baby.
  • Ask the family if they’d like time alone with the baby. Be quiet and unobtrusive when in the space. Know that this time is precious to the family.
  • Let the family know that they can change their mind at any time.
  • Let the family know they can spend as much time as they want with the baby. Let them know what is possible, and if they want to hold them later, you can arrange this.
  • If the parents consent to photos, but aren’t ready to see them, offer to store them somewhere safely (if possible) in case they want them at a later time.
Postnatal care
  • Ensure the family knows what to expect after a loss, physically and emotionally.
  • The person who carried the pregnancy will lactate after the loss, and needs to know what options are available to them, including medication, natural remedies or milk donation. PAIL Network has downloadable resources to provide to families about lactation after loss.
  • Consider ways of preparing the family for their return home after a loss. Many families feel the urge to remove any memory of the baby or pregnancy from their home, while others take comfort in having their objects or a nursery. Avoid removing the baby’s things without the family’s consent.
  • Returning home may be especially difficult for families who had to leave their home community to give birth. Many times, the community does not know about the loss. Ask families about this. How will they manage? Will they tell anyone? Who will support them, and what professional connections do they already have? Can they see their primary care provider in a few days or weeks? Can you help to arrange this for them, or to have information sent ahead of time?
  • Encourage the family to reach out for support if they are struggling. They are vulnerable to depression, anxiety and social isolation. It’s normal for a family to question their beliefs, faith and life purpose. Their family and friends may be too shocked, anxious or uncomfortable to support them. Inform the family of wider available supports including spiritual care, counselling, and voluntary support groups.
  • Consider providing resources and support for the partner. A partner’s grief can be as profound as the person who carried the pregnancy. Their grief needs to be recognized.
Ongoing support
  • If applicable to your role, check in regularly with the family, or refer them (when possible) to someone who can. It is difficult for many grieving people to ask for help. They may feel guilty about receiving attention, or fear they are a burden to others, or they may just be too depressed to reach out for help. They may not have the motivation or energy to ask for what they need.
  • If a family chooses to end communication with you, it is likely not personal. Some families take comfort in continuing a connection with the health-care providers who offered them support while others may find it difficult. If you are concerned for their mental or physical health, ensure they are connected to alternative support systems.
  • Encourage the family to find ways to commemorate or honour their loss. Some possibilities include: planting a tree, creating a memory box, writing their story, getting a tattoo, hosting an annual gathering, creating a fundraiser, or volunteering with bereaved families.
  • Consider reaching out to the family on the anniversary of the baby’s birth or death by sending a card or making a phone call.
  • Consider attending memorial events or fundraisers for pregnancy and infant loss, and continue learning how to support families.
  • Ensure you have built in support for yourself. Know your own capacity and reach out when you need support from others. There are many great resources available on self-care, compassion fatigue, burnout and vicarious trauma available through TEND Academy.