Communicating with Families During and After a Perinatal Loss

1. Communicating with Families During and After a Perinatal Loss Trishia Penner BTh, BA, MA, Med III, Spiritual Health Specialist

2. People’s Responses Vary Greatly • A woman who experienced a full-term stillbirth asks, “So I guess this is called a miscarriage?” • A woman who miscarried at 10 weeks cries saying, “This baby was so much a part of my life! This is just as sad and traumatic for me as having my 2 year old daughter die!”

3. How can we know what to say? • Each situation, and each person involved in each situation, responds differently to loss and grief. • There are no easy answers we can give to people, nothing we do or say can change the outcome of this situation.

4. Listen Carefully • Listening to a patient and their supports give us clues as to how to respond. • What are their emotions? Their expectations? Their hopes? What is the most difficult part of today? • They may be experiencing any stage of grieving, or they may not acknowledge any grief at all. Some may even express relief.

5. Respond Authenically • Patient and their families often say afterward how they appreciated the sadness, vulnerability or tears of their healthcare providers.

6. What should I say? How should I respond? • There are some responses which are generally considered helpful by patients, as well as some which are not appreciated. • Imagine what you would want to hear if you were in their situation.

7. What do you say… What do you say when a baby dies and someone says… “At least you didn’t bring it home.” What do you say when a baby is stillborn and someone says… “At least it never lived.”

8. What do you say when a mother of three says… “Think of all the time you have.”

9. What do you say when so many people say… “You can always have another….” “At least you never knew it….” “You have your whole life ahead of you.” “You have an angel in heaven.”

10. What do you say when someone says….nothing?

11. What do you say when someone says… “I’m sorry.” You say, with grateful tears and warm embrace, “Thank You!” Kathie Rataj Mayo

12. What NOT to Say: • You’re young, you can have others. • You have an angel in heaven. • This happened for the best. • Better for this to happen now, before you knew the baby. • There was something wrong with the baby anyway. • I know how you feel. • It was God’s will.

13. What TO Say: • I’m sad for you. • How are you doing with all this? • What can I do for you? • This must be hard for you. • I’m sorry. • I’m here and I want to listen. • I don’t really know what to say.

14. Listen and allow for silence Allow them to express their story and feelings Encourage them to be patient with themselves and not to expect too much Ask if they have any special requests of you Make referrals to appropriate services within the hospital (Spiritual Care, Social Work, Aboriginal Sevices, etc.) DOs

15. DON’Ts • Don’t dominate conversation • Don’t personalize their comments or emotions • Don’t pass judgement (“You should be feeling better by now.”) • Don’t discourage emotion or tears • Don’t change the subject when they talk about their dead baby • Don’t answer a question that you don’t have the answers for • Don’t make comments that they should have sought care earlier

16. Refer to the baby by name if it has been named by the parents. Remember that there may be cultural differences surrounding death Acknowledge their sadness Give the family momentos to acknowledge their baby if appropriate. DOs

17. For Viewable Babies: • Ask them if they would like to see and hold their baby. Give them more than one opportunity if they say no the first time they are asked. • Describe to the parents and others in the room what the baby looks like, what to expect. Prepare them before bringing the baby in for viewing. • Create appropriate keepsakes.

18. DON’Ts • Don’t call the baby a fetus, POCs or “it” without knowing that these words are acceptable to the family. • Don’t talk only to the patient, engage the partner or other supports present • Don’t assume that a miscarriage is easier to cope with than a stillbirth or neonatal death • Don’t confuse support with “cheering her up.”

20. Questions? Comments? Contact Trish Penner at umpennet@cc.umanitoba.ca