Communicating with a family who has experienced a miscarriage

Overview: summary

The support a family receives, both during and after an early pregnancy loss, makes an impact on their experience. Their health-care providers are in a unique position to support and guide the family during a difficult time in their lives. Families appreciate compassionate care, clear communication, support in creating memories and smooth transitions.

Health-care providers may feel anxiety and stress caring for a family who is losing a baby, as they understand the significance of this life event. Providers report feeling 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 ways (ie. written, verbal) about what is happening to them, what is going to happen next, and what care options are available to them. They need adequate information to make informed decisions, and to have their concerns, feelings, and wishes considered. If an option to manage their loss is not available, they should be offered a clear explanation. Partners and/or support people need to be included in conversations and to also have their needs validated and considered.

Many families experience significant grief following a loss, and will benefit from 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. Your support, compassion, and validation of their grief will go a long way in helping families integrate this loss into their lives.

Introduction

The information in this document is intended to offer information and suggestions on how to communicate with a family who is experiencing a miscarriage or other early pregnancy loss. Bereaved families and health-care providers have written the material, adapted from the SANDS Guidelines for Professionals.

A miscarriage in Canada is defined as the loss of a pregnancy during the first 20 weeks gestation, unless the baby is born with no heartbeat but weighs over 500 grams (stillbirth). Throughout this document, the term ‘miscarriage’ and ‘early pregnancy loss’ will be used, however we recognize some families prefer alternative terminology such as ‘death of a baby’ or ‘end of pregnancy’.

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 are circumstances where there simply isn’t the time or resources available to meet families’ needs in the way you would have hoped. Please consider what could be helpful in your own practice and workplace.

Approaching the family
  • Be aware that this can be a life altering experience, and is not a routine medical event for the family. Be prepared for a wide range of emotional responses. They may experience this as the death of their baby, they may be relieved if the pregnancy wasn’t wanted, or anything in between.
  • Find out as much as you can about the family and their situation before approaching them.
  • Find out if they have experienced previous losses or infertility. This can compound the grief response to a subsequent loss or pregnancy.
  • Be aware that they 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.
  • 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.
  • Ensure you have sufficient time to address their questions and concerns. If this is not possible, try to arrange for someone to be available to continue care for the family. Know that even in brief encounters with families, you can help a family feel cared for and supported.
  • If they are undressed and/or on an examination table, give them an opportunity to get dressed and sit up.
  • Make sure that when you are speaking with other staff/colleagues about their case, 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. 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 a person is on their own, ask if they would like to contact a partner or another support person who might be able to join them. If you have bad news to share, 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 are on their own, try and ensure they are not left alone for long periods of time while they wait for their partner or support person.
  • 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, if 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 pregnancy is gone” or “I don’t see a pregnancy”. Say instead, “I’m so sorry, but your baby has died” or “I’m sorry, but your pregnancy has ended. 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 alone (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 prognosis is uncertain, acknowledge how difficult and frustrating this is for them. Say, “I’m sorry, but we don’t know for certain if you are experiencing a miscarriage. I know how difficult this may be for you”. Let them know what to expect during the time they are waiting for an ultrasound, blood work, or other tests to confirm the situation.
  • 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?
  • Many parents will want to know if anything can be done to prevent the miscarriage. For many families, this will be why they came for medical help. Clearly explain the situation and what is possible and not possible. Some people feel angry and distressed if they think their concerns are not taken seriously. Many people will come for help and feel very distressed that nothing is being done urgently, from their perspective, to stop the loss.
  • 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 you understand the gravity of the situation.
  • Express genuine concern and empathy by using phrases such as, “I’m very sorry” or “I’m sorry we are meeting under these circumstances” or “I know this is difficult for you to hear”.
  • Mirror the language the family uses to refer to their loss. Some families find it distressing to have their loss referred to as ‘products of conception’, ‘embryo’, or ‘fetus’. Use “baby” if you hear the family use this term.
  • If you use medical terminology, explain what the terms mean in simple language. If you need to describe what is happening or what has happened, use the term and then explain what it means using non-medical words.
  • Try to avoid clinical language that may be offensive to the family. At the least, try to avoid repeatedly using language that may be offensive to the family. Some families find the term “miscarriage” or “abortion” to be very offensive when describing their loss. In general, avoid the words abnormal, deformed, failed/failure, or incompetent. Examples of words to avoid (or explain) include: spontaneous abortion, incomplete abortion, missed miscarriage, anembryonic pregnancy, pregnancy failure, abnormal pregnancy, fetal tissue, or incompetent cervix.
  • If the reason for the loss is uncertain (which is usually the case), 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, assure the family that the miscarriage is no one’s fault and in most cases could not have been prevented.
  • If the loss is unexpected, the family will likely be shocked and unable to absorb much additional information. Try to keep explanations simple and to 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. Staff can help by being sensitive and allowing 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.
  • Be prepared to listen and be sensitive to their needs. Take cues from a person about where they are at and what they want to talk about.
  • 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
  • Find out if there is an early pregnancy loss assessment clinic or facility that offers special clinical assessment in your area. Refer them if they meet the criteria for referral and consent.
  • Present all of their available options. The options available to a family may include surgical, medical, or expectant management. Surgery tends to be the choice for those who have accepted the loss and have a desire to expedite. Medical management may offer more control over the timing and the environment. Whatever the choice, satisfaction to treatment is correlated with supportive care from the clinical team and an expeditious resolution.
  • Decisions may be influenced by a person’s personal, cultural, spiritual or religious needs. Care for a family must be individualized to respect their choices whenever possible. Assumptions should never be made, as there is much variance within cultural groups.
  • Staff should offer the opportunity to fully discuss the available miscarriage care options. This includes how long each type of management may take, what it involves, any risks and benefits, and how long they can expect to bleed or experience pain during and after the miscarriage.
  • Let them know the process for each choice. Let them know if they will be going home to wait for the miscarriage to occur or to wait for a procedure, or if they will be offered a room on a gynaecological or surgical ward.
  • Explain any uncertainties, risks, and benefits, including the impact on their future fertility. Offer evidence-based information.
  • 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.
  • Let them know how long it may take to find space for them in the OR, or a person to provide the procedure. Acknowledge that this waiting is really difficult and often not ideal. When possible, provide contact information so they have someone to contact while waiting for news. Many families will appreciate updates, even if you don’t yet have a date/time. This helps the family to know that someone is still working on a solution and takes the onus off of them to have to contact you. If you are able to provide regular updates, ask the family if this will be helpful.
  • Gently and sensitively offer information about what they might expect the remains to look like depending on the gestation or type of management used (ensure they know that there may not be any identifiable remains in surgical management). Acknowledge this may be difficult for them to hear and consider. If a family is going home, explore options with them on what they can do with the pregnancy tissues/fetal remains.
  • 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 seeming difficult or questioning authority so will be very sensitive to what they think you want them to do. Encourage and support their questions and to communicate their needs.
  • 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. If they don’t have to make a decision right away, let them know this so they don’t feel pressure. Often a family’s initial reaction 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 the 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.
  • When they’ve made a decision, prepare them for what to expect for the option they choose including length and extent of pain and bleeding, side effects, and when to seek out medical support. Many families report being unprepared for the amount of bleeding, the length of the process, and pain that they will experience. An early miscarriage may be similar to labour and staff should explain that there is variation in how much pain is experienced. Discuss options for pain relief that are available.
  • Ensure they know what to expect during the recovery period. Offer information about post-operative care (for those undergoing surgery). Don’t assume they will be getting this information elsewhere.
  • For families who have had an ectopic pregnancy, many will have found out that they are pregnant and losing the pregnancy in the same day. After surgery, it is helpful for many families to have this acknowledged. Many families will be sent home quickly, and be left to absorb this information alone. Normalize that they may feel grief and distress. Refer to PAIL Network or other sources of support.
  • When relevant, offer parents information about histological or pathological examinations that may be available or recommended to examine tissues from the pregnancy.
  • If the family chooses medication or expectant management, send them home with a urine hat or other collection device. If they miscarry on the toilet, they may be disturbed if the remains end up in the toilet. As well, if they are bringing the remains in for testing, they will need a way to collect them.
  • Make sure the family has a way of contacting you, or someone else (primary care provider, walk-in clinic, etc.), to have their questions or concerns addressed between appointments. Ensure they know when and how to seek medical advice if their pain and bleeding worsen or new symptoms develop. Ensure they know how to access someone 24 hours. Provide them with the contact for TeleHealth Ontario.
  • It may be helpful for a family to be given documentation that is required for time off work. Many families will be exhausted from the experience, and going back and forth from home to the hospital or clinic and waiting for appointments and information can be stressful and tiring. Additionally, many families will not have shared their pregnancy news yet with many people, including their employer.
  • Provide referrals for additional tests or procedures they’ve consented to, and make the referrals as soon as possible.
  • 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.
  • Ensure parents know when to follow up with you or another health-care professional of their choice. When possible, send the information to that care provider, so the family does not need to explain what has happened.
  • Although not always available, 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.
  • Encourage the family to reach out to trusted loved ones and communicate what they need.
  • 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, and confidentiality is important.
  • Offer them the services of a hospital social worker or spiritual care provider (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. Let them know if you will not be sharing information to their other health-care providers, so they know who they need to contact and disclose to.
  • PAIL Network has a booklet on miscarriage for families in 6 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
  • If a family is leaving the hospital or clinic and has to return later, consider if there a way they can avoid the process of re-telling their story to each new staff member, or re-registering and giving all of the same information again.
  • 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. It may also help avoid the need for families to answer the same questions repeatedly, which can be very stressful.
  • 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.
Talking about fetal remains/pregnancy tissues
  • If the family wishes to see their baby or pregnancy remains, gently describe what they will see beforehand. This includes sensitively telling parents whether any remains will be recognizable and/or complete. Many families report being unprepared for what they will see when they miscarry at home, and are shocked to see a fully formed fetus. As well, they may not be aware that the remains may be unrecognizable after a surgical procedure. It’s also okay to tell the family that sometimes it is hard to know, but that you are wanting to prepare them. If you don’t tell them, it is likely that no one else will discuss this with them either.
  • Many families will not be prepared for the bleeding or the amount of tissues/fetal remains that will come out. Once this happens, many families will not have been told what to do. Some families will instinctively flush the remains. Some families will collect the remains and choose to bury them (many will collect and freeze them if it’s winter, or freeze them while they are deciding what to do). Others will dispose of them. Some of these options are distressing for parents.
  • Gently discuss what the family can do with the pregnancy tissues/remains if they deliver at home. Although this is an awkward conversation, chances are no one else will discuss this with them and it may be worse for the family if they are not prepared. You may want to say, “I want to talk to you about what you plan to do with any pregnancy tissues/the baby when you go home. Have you thought of this?” If they have, confirm that their plan is normal. If they have not, you can offer choices by describing what other families have done. For example, you could say, “Some families will choose to keep the remains and bury them in a special place. Other families will choose to flush the remains or dispose of them in another way. All of these choices are normal and okay.” For some families, what they do will depend on how far along in the pregnancy they are, and the amount of tissue. It is okay to tell them this.
  • Some parents may flush the pregnancy remains by mistake and may be distressed that they were unable to see the remains or make other arrangements for them. It may help parents to know that this is a possibility and that if this does happen to them, there are other options and rituals to honour their loss.
  • Providing a urine hat for the toilet may be helpful. It may also be helpful to share that some people will get into the (empty) tub, especially if they are bleeding or if they want to be sure that they can collect the tissues/baby.
  • When appropriate and applicable, discuss options for what to do with the remains of the miscarriage if they are to be tested. For some people, cultural traditions will mean they want to collect all the pregnancy tissues for burial or other ceremonies (even after pathological testing). Learn about what the local process is for this in your hospital or healthcare setting. You can help the family by ensuring this is possible and by describing the process. It may also help for the family to know what will happen when they collect the remains (if they miscarry at home). Where should they bring them? Once examinations are complete, and if they are picking them up, will they be in a busy hallway and have them given to them in a container from the lab? Will they be mailed to them in their home community? Will a funeral home be able to assist?
  • Although it is not required by law, the family has a right to the remains, and can have a funeral, burial, or cremation at any gestation. Many hospitals have a sensitive disposal services, and may have the option to be cremated or buried along with the remains of other miscarried babies. Other hospitals will dispose of the remains in clinical waste. Let the family know their available options. The choice is entirely up to them.
  • If the family chooses to look at the remains/baby, help them to feel it is normal. Let them know, “Some families find they want to see what comes out and some do not. Both choices are okay and normal. What do you think?”
  • Let the family know that they can change their mind.
  • The family will be looking to you for guidance. Try and remain neutral and non-judgmental.
  • Parents should be assured that it is their decision and whatever they decide is all right.
  • Be aware that you are a part of their story. You may be one of the few people who will know what has happened to them. This is an important role and a privilege.
Postnatal care
  • Whenever possible, before, during and after a surgical procedure, families may appreciate being offered a private room away from the sounds of other women in labour and crying babies. If this is not possible, verbally recognize how difficult this might be for them.
  • Ensure the family knows what to expect after a loss including physically and emotionally.
  • They may lactate after the loss (if after 14 – 16 weeks) and need to know what options are available to them, including medication or natural remedies. PAIL Network has downloadable resources to provide to families about lactation after loss.
  • he person carrying the pregnancy should be offered a follow-up appointment in the case they need ongoing support, or have questions and concerns. They may need ongoing physical care. This follow up appointment can happen with their primary care provider (GP, NP, OB, or midwife). They may need to discuss results or the possibility for additional screening and diagnostic tests. They also may need referrals for emotional support. At this appointment, it may be helpful to ask them both, “How are you feeling physically” and “How are you feeling emotionally”?
  • Include the partner in discussions. A partner’s grief can be as profound as the person who carried the pregnancy. Their experience needs to be recognized.
  • Inform the family of wider available supports including spiritual care, counselling, and voluntary support groups.
Ongoing support
  • If possible, check in with the family, or refer them 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 be too depressed to reach out for help. They may not have the motivation or energy to ask for what they need.
  • Encourage the family to reach out for support if they are struggling. They are vulnerable to depression, anxiety, and social isolation. Society still views miscarriage as a taboo, and it often isn’t talked about. This may be especially true for families who had a lesser known type of loss, such as an ectopic pregnancy, a molar pregnancy, or a chemical pregnancy. They may have been told, “This happens all the time” or “This is really common,” which may minimize their feelings of loss and make it hard to express their grief. Their family and friends may not know they were pregnant, or be too anxious or uncomfortable to support them. They may experience disenfranchised grief.
  • Without knowing the cause, they can blame themselves and feel like it’s their fault. It’s also normal for a family to question their beliefs, faith and life purpose. When possible, indicate that the miscarriage was no one’s fault. Being a listening presence and allowing a person to tell their story can be a powerful way to help them through their grief.
  • 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.
  • If the family is struggling to find connection and wants to honour their loss, consider suggesting a memorial activity such as planting a tree or garden, creating a ritual, making a memory box, getting a tattoo, or creating a piece of artwork.
  • If the family is struggling to find meaning, consider ways this can be addressed, such as by volunteering, hosting a fundraiser, getting involved in a political cause, writing a blog, or making a donation.
  • Consider sending a follow up letter to the family.
  • 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.

Overview: summary

The support a family receives, both during and after an early pregnancy loss, makes an impact on their experience. Their health-care providers are in a unique position to support and guide the family during a difficult time in their lives. Families appreciate compassionate care, clear communication, support in creating memories and smooth transitions.

Health-care providers may feel anxiety and stress caring for a family who is losing a baby, as they understand the significance of this life event. Providers report feeling 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 ways (ie. written, verbal) about what is happening to them, what is going to happen next, and what care options are available to them. They need adequate information to make informed decisions, and to have their concerns, feelings, and wishes considered. If an option to manage their loss is not available, they should be offered a clear explanation. Partners and/or support people need to be included in conversations and to also have their needs validated and considered.

Many families experience significant grief following a loss, and will benefit from 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. Your support, compassion, and validation of their grief will go a long way in helping families integrate this loss into their lives.