Providing compassionate careSuggestions for health-care providers
Emergency department best practices
Many families who are experiencing a pregnancy loss or threatened pregnancy loss will go to an emergency department. Even if it is not a medical emergency, it is very often an emotional emergency for the family. Waiting in a crowded room without information and the impression that anything is being done quickly is very difficult for families, who often hope the miscarriage can be stopped or prevented.
In many cases, families are hoping for information and answers. Families may be nervous about the amount of bleeding that is happening, even if it’s normal to health-care providers. Some families have experienced previous losses or infertility, and these experiences can heighten an already difficult and sad time. If a D&C is required, many families want for it to happen right away, which often is not possible. Meeting expectations and bereavement needs may be difficult in busy emergency departments, but there are some ways to improve bereavement care in these settings. Even small care changes can make a big difference to a family.
ED best practice suggestions
- When possible, provide the family with a private room or area. If it’s not possible, which is the most common scenario, let the family know by saying, “I’m sorry we don’t have a more private space for you right now.” Acknowledge what is happening.
- When possible, check on the family regularly and reassure them they haven’t been forgotten
- If the pregnant person is going to the washroom, provide them with a cup, urine hat, or other item in case the person loses the fetus in the toilet. This may be especially important for facilities that have automatic flush toilets. If families are being discharged home, ask them if they would like to take the cup/urine hat home. This may be especially important for families who choose to bury, cremate, or honour their baby in another way.
- Many families experiencing pregnancy loss will be upset and scared, even if it is an early pregnancy. What appears to us as a normal amount of blood can seem excessive to families. Reassure the family that they are in a safe place. Do not minimize the loss. Acknowledge what is happening. Normalize grief, fear and sadness.
- If it looks like the baby has died or will die, ask the person if there are any family members, friends, a chaplain, or social worker you can call for them
- Be genuine. Acknowledge the loss or the fear of loss. Say “I’m sorry.”
- Information on norms is often useful. How much bleeding is too much? How long will things take? Should there be follow-up blood work? When should they return to the emergency department?
- If they are waiting for OR time, is there someone who can provide updates for them, or a contact person at the hospital for follow-up questions?
- Discuss follow-up. Many families will be in shock and not sure what to do next. Should they see their primary care provider? When? Is there an Early Pregnancy Assessment Clinic in your community? If the loss is not confirmed, when should the family get follow-up, and where?
- Discuss time off work and required documentation
- Provide written information for families as appropriate. Refer to local community and online supports.
- PAIL Network offers written, online and in-person peer supports for families. PAIL Network’s general pamphlet or booklet “Miscarriage: Pregnancy Loss Before 20 Weeks” may be helpful for you to give to families on discharge.
- If the loss is not confirmed and families are sent home to wait, giving the family a bereavement pamphlet at the time of discharge will not be helpful. However, for the many families who will subsequently experience loss, most will receive no information on supports. This is where a general handout on what to do/expect may be helpful. At the end of the handout, you may wish to list some bereavement supports, including PAIL Network. You could also say to a family “I hope you don’t experience a loss, but if you do, I want you to know there are supports available if you need them.”
Sometimes hospital procedures and processes, while designed for functionality or cost efficiency, are frustrating and upsetting to families experiencing pregnancy or infant loss. As an organization, there are ways to provide compassionate, sensitive, and skilled care while still meeting organizational needs and priorities.
Best practice suggestions for hospital processes
- Include families in decision-making surrounding hospital procedures and processes. Ask for feedback. Initiate a patient/family advisory committee. Include families on your bereavement committee. Prioritize person-centred and family-centred care.
- Have a clear process for storage and disposal of pregnancy tissues/fetal remains, and ensure families know and understand your hospital’s processes should they decide to leave the baby/remains at the hospital. There have been reports of families leaving the remains behind and then returning for them, assuming they will be kept by the hospital. Some hospitals keep pregnancy loss remains and do a service/burial once or twice a year.
- Have a list of local funeral homes to give to families to assist with their preparations. Some funeral homes don’t charge for cremation of early pregnancy loss remains and have possible reduced costs for later pregnancy loss or infant deaths. This information is useful for families who are often overwhelmed.
- Develop a bereavement checklist for staff to use, to help ensure consistent care.
- Develop a process for required paperwork, including during weekends or after-hours. There have been reports of families having to wait longer than they would like because of a delay in the required paperwork for burials.
Providing compassionate care
While there are some general best practice guidelines for the provision of compassionate and skilled bereavement care, local resources, services and cultural practices will influence available and appropriate care. Person-centred and family-centred care is essential. Professionals who have both a perinatal bereavement knowledge base and willingness to explore care preferences with families are best equipped to provide skilled and compassionate care.
Best practice suggestions for providing compassionate care
- Acknowledge the loss. Tell the family you are sorry for their loss. Ask the family if they have named the baby and if so, use their baby’s name.
- Most families report wanting private space to grieve and spend time together. It is common to place families away from other babies or people giving birth, and this is often much appreciated. However, some families report feeling abandoned or hidden away. Talk to the family and ask what they prefer. Do what you can to make the family comfortable.
- If the family is in a private hospital room, place a bereavement marker on the door to let staff know the family’s baby has died. This will help to ensure that staff do not enter the room and make insensitive or hurtful comments. Common markers include a butterfly or tear drop.
- Encourage families to spend as much time as they would like with their baby. Remind them they can change their minds, and ask questions as needed. If parents decline, offer several times, as appropriate. Try to support families where one person may wish to see/hold the baby, but the other does not.
- Provide memory making opportunities and mementos as appropriate
- Support families in their cultural and spiritual practices
- Some hospitals have developed creative processes for bringing a deceased baby to the morgue. For example, purple boxes to place the baby in, a special bag to carry, or a basket with a blanket inside.
- Adapt your discharge package or written instructions for families who experience pregnancy or infant loss. Include local and online supports and follow-up instructions. When appropriate, provide information on breast milk production, pain relief and bleeding.
- Provide the family with the appropriate PAIL Network booklet or resource
- Listen more than you talk
- Give the family permission to grieve their child
- Answer questions or refer to someone who can
- Offer practical assistance (food, calling someone)
- Show genuine caring and emotion
- Think about a follow-up plan
- Contact the family when you say you will
- Repeat information as needed
- Dominate the conversation
- Use clichés
- Pass judgment
- Minimize the loss
- Change the subject
- Avoid the family
- Take anger personally
- Give medical advice without knowledge
- Forget other family members (partners, siblings, grandparents)
Our words matter: using compassionate language
What to say, and what not to say to a family experiencing a loss
- “I’m sorry for your loss” or “I’m sorry”
- “I feel sad” or “I’m sad for you”
- “I wish things would have ended differently”
- “I don’t know what to say”
- “Do you have any questions?”
- “Can I call someone for you?”
- “How can I help” or “What do you need right now?”
- “We can talk again later”
- “Take all the time you need”
- “We are here to help”
- “Call us if you need us”
- “Tell me about your supports at home”
- “It’s ok to cry”
- “I don’t know why it happened”
- “It’s not your fault”
- Just listen….
- “It’s for the best” or “Everything happens for a reason”
- “This is nature’s way”
- “At least it all came out”
- “At least you didn’t know the baby”
- “This is God’s will” or “God knows best” or “God needed an angel”
- “Now you have an angel baby”
- “It could be worse”
- “You’re young, you can try again”
- “Time will heal”
- “It’s just your body’s way of ending an unhealthy pregnancy”
- “This happens all the time”
- “It happened for a reason”
- “Be grateful for the children you have”
- “You need to move on”
- Anything to trivialize the loss
Supporting families in a pregnancy subsequent to loss
Perinatal loss has a pervasive impact on families, which often extends to a subsequent pregnancy. During this time, families have unique care needs that may not be adequately addressed by current pregnancy management processes or systems. Knowledgeable care providers can help support the health of the pregnant person and their family and have a significant impact on the pregnancy experience and beyond.
Understanding subsequent pregnancies
In subsequent pregnancies:
- There is a greater risk for anxiety and depression, which continues into the postpartum period. Anxiety is the most widely reported state in pregnancies after loss.
- Families may be more isolated from their normal support networks
- Families may avoid attachment to the pregnancy and preparing for the baby, including avoiding prenatal education
- Families may seek reassurance through interactions with care providers. There is growing evidence that these interactions do not meet their needs or expectations.
- Families will frequently encounter care providers who are unaware of their history and who are dismissive of their concerns, worries, and fears. These encounters often remain with families for a very long time.
- Ultrasounds and pregnancy tests are often stressful, especially if they are how the issue or death was discovered previously. Despite this, most families will request and want extra monitoring.
- Families are not necessarily reassured by extra monitoring. Improved psychosocial supports and collaborative relationships are important to families. Families who had ‘perfect’ pregnancies up to the loss or who had a loss through a rare event will often not be reassured by healthy test or monitoring results or statistics. Their risk evaluation may be different than yours. They know bad things do happen: they have been the 1 in 1000 before.
- Families may be less confident in their ability to safely carry a pregnancy, have a healthy baby, provide for an infant (breastfeeding, knowing if an infant is well), and parent. Some transient newborn issues, such as jaundice or hypoglycemia, may be especially distressing for families. Skilled and sensitive support from health-care providers, including anticipatory guidance, is important.
- Families may request early planning for delivery and early delivery, which presents challenges for health-care providers. When possible, include families in discussions and decisions.
- Families often want more frequent visits, flexible options for care, time to discuss their worries and fears, and reassurance
- Families do not want to repeat their history of loss or story of loss over and over to the same health-care team
- Families may require more postpartum supports and tailored education
Care considerations for subsequent pregnancies
Care considerations include:
- Offer flexible care options, including more frequent visits. This may be especially helpful around the gestation of the previous loss or losses.
- Identify the family to the care team whenever possible so they don’t have to repeat themselves, but don’t shy away from discussing their loss when needed.
- Use their baby’s name
- Ask the family what would be helpful or useful. Individualize support.
- Share with the family details that indicate how you know their baby is well. Make time for questions even after the family has gone home from their appointment.
- When possible, provide a contact person for between appointments
- Discuss the difficulty of “regular” prenatal education for families. Offer alternatives, including online prenatal education and private tours of the facility where the family will give birth. If a family wishes to go to “regular” prenatal classes, discuss the option of talking with the educator ahead of time to share details about their loss.
- Provide mental health supports as needed. Screen for mental illness. Do not minimize anxiety, concerns or fears. Talk about feelings of isolation, anger and guilt. Normalize experiences, but do not minimize them. Ask families regularly how they are doing. Refer to mental health professionals as appropriate.
- Refer to Healthy Babies Healthy Children programs antenatally. People with a history of mental illness, or who are at increased risk (i.e. people who have experienced perinatal loss), may qualify for antenatal support. This has the benefit of connecting families with community supports and avoiding the postpartum wait-time. It also provides longer-term community support. If families decline, discuss the option for self-referral, available at any time if they change their mind.
- Provide anticipatory guidance to families: infant feeding supports, possible thoughts and feelings during delivery and postpartum, healthy newborn norms, postpartum supports, prematurity, etc.
- Provide a follow-up plan after birth and discharge from regular pregnancy care
- If a family has experienced an infant loss, discuss strategies for postpartum support. Many primary care providers, including nurse practitioners, family doctors, midwives and pediatricians, will agree to see a family more frequently in the initial postpartum period and provide reassurance and education about healthy infant norms.
- Consider education and training for staff working with families who experience perinatal bereavement
- Use sensitive language. For many families, being asked “Is this your first pregnancy?” or told ‘Don’t worry about that” by a health-care provider is very upsetting.
- Utilize PAIL Network’s booklet for families: “Pregnancy After Loss” and refer for peer support. PAIL Network provides peer support for families during pregnancies after loss.