Caregivers
Caregivers are a pivotal part of a bereaved parents journey. No matter what kind of caregiver you are, whether you are a hospital medical provider (MD, NP, RN, RT, etc.), primary care physician, OB/GYN, hospital chaplain, religious clergy, social worker, therapist, counselor, etc., when you interact with a bereaved parent or a soon-to-be bereaved parent, your actions and words can be immensely powerful.
These parents are going through the worst experience of their lives. Offering these resources may not change their hurt, but it will help them during this most difficult time. Giving this information to parents as early as possible early in their grief journey will let them know they are not alone.
Click on each of the following sections to explore ways to help bereaved or soon-to-be bereaved parents.
Offer Pamphlet with Helpful Resources
Offer Pamphlet with Helpful Resources
Download and print this pamphlet as a resource to offer to bereaved parents.
Direct Parents to Download Guides
Direct Parents to Download Guides
Lighten the Weight on Parents’ Shoulders
Lighten the Weight on Parents’ Shoulders
- Cancel future appointments and let the family know so they will not have to deal with it themselves or get triggering reminders.
- Make a note on the records of the other children in the family so that other care providers are aware of their loss.
- Use the child’s name if families are comfortable discussing their child.
Consider Bereaved Parents’ Grief
- Grief begins long before the actual death of a child. It can begin with unexpected hospitalizations, new or unexplained diagnoses (terminal or otherwise), or traumatic accidents.
- Past experiences with trauma or loss will dictate how a family responds to a presenting crisis. For example, a family with a history of a prolonged or complicated NICU stay may be quicker to panic in response to monitor alarms than others. Even bringing their child to the hospital for a routine medical appointment may be difficult for a family who has had a child die.
- Every grieving individual has their own unique thoughts, feelings, and ways of dealing with their grief. There are, however, some themes common to many bereaved parents.
How to Respond to Parents’ Common Feelings after Child Loss
How to Respond to Parents’ Common Feelings after Child Loss
Caregivers are often some of the first individuals to interact with parents after the loss of a child. We know that these conversations are not easy, but we also know how impactful they can be. Please keep in mind, grief takes many forms and is not the same for everyone. Further, these feelings and thoughts will likely change over time.
To help facilitate these conversations with bereaved parents, we wanted to give you some suggested responses to common feelings after child loss.
Guilt & Trauma
Guilt & Trauma
Parents likely feel guilty for their child’s death, blaming themselves, and thinking they could have done more to prevent it.
When appropriate, use your words and actions to reassure the bereaved parent that they are not responsible for their child’s death. It may not absolve their guilty feelings, but it will help to have the voice of a reasoned medical professional in their head when they question themselves again and again later on.
Parents replay will replay the circumstances of the death over and over.
Allow the opportunity for the parents to receive a medical debrief after a traumatic event, code, or death. Allow them to verbalize the sequence of the events from their perspective if they are able and help them fill in the blanks of the how and why things happened the way they did. Another method would be to give a brief summation of the event and allow them to ask questions throughout.
Sadness / Depression
Sadness / Depression
Parents will cry, sometimes constantly and sometimes when they least expect it
Many parents might apologize for crying. Normalize this feeling, but also give them the opportunity for privacy if they request it.
Shock & Numbness
Shock & Numbness
Parents will have difficulty making decisions and even communicating what they need/want.
End of life care requires a barrage of difficult decisions that can have lasting consequences in the life of a grieving parent. Allowing the family the needed time to make these decisions and be confident in them is a gift. Making a decision to continue life-supporting medical devices or care may actually be indecision on the part of a family coming to grips with the impending death of their child.
Confusion & Disbelief
Confusion & Disbelief
Parents will feel like they are in a cloud or haze, especially at the beginning.
As a medical provider you have probably thought the following sentence, at least once, in your career “I JUST spent an hour explaining all this to the family yesterday, I don’t know why they don’t understand today.” Families in crisis are experiencing significant trauma during this time. They may not be able to make accurate memories during this trauma. They actually may not remember the conversation, only remember parts of it, or remember it going a different way. Two parents may hear the same conversation and come away with completely different impressions.
Parents will wish they had more time with their child, even just seconds.
If you can, give them that time.
Fear
Fear
Parents may develop a stronger fear about situations they may not have previously.
– Being overprotective of other living children
– Fear about the safety of their family
– Concern over having another child
– Fear of the particular circumstances that took their child (e.g., a car wreck, a heart condition, etc.).
Acknowledge and validate these fears while also providing appropriate reassurance and direction when the bereaved parents are ready to move forward.
Anger
Anger
Parents may feel like no one can understand their grief and experience anger toward themselves, others, God or even their child.
Allow them to express their anger as long as it is done in a safe manner. Do not take their anger personally even if it is directed at you.
What To Say To Bereaved Parents
While nothing you can say will take away the pain the parents are experiencing from losing their child, there are some things you can say that may help provide comfort to the parents. The suggestions below will hopefully help you consider what to say to bereaved parents.
On the contrary, through our experience as bereaved parents, we have learned that there are some things that when said, no matter how good the intentions, are hurtful to the parents. While we recognize that each parent is different, the following are some phrases or sentiments we suggest avoiding.
What to Say
What to Say
- Ask the parents what they are comfortable with in terms of discussing their child. Do they wish to talk about their child or is it too difficult at the moment? Remember, each person is different, but we have found that most parents welcome talking about their child as it assures them their child will not be forgotten.
- When you do talk about their child, do so in a normal manner, as you would talk about your living children’s memories and accomplishments. Share memories of them and discuss what the child was like at different ages and stages, instead of focusing on the death.
- Follow the parents’ cues on talking about the child’s death or medical condition(s). If the parents bring it up, it is probably safe to talk about, but do not start a conversation on this topic without knowing how the parents feel.
What NOT to Say
What NOT to Say
Don’t try to make the death into a positive. This includes saying things such as:
- God has a plan, have faith, or turn to God.
- Everything happens for a reason or good things will come from this.
- It will get better with time or time will heal.
- S/he is in a better place or s/he is or will no longer have to suffer in this life.
- I know how you feel or I understand what you are going through (unless you are also a bereaved parent, and even then, everyone’s feelings are different).
Avoid judgments of any kind, including asking the parents if how they are grieving is keeping them from moving on.
Any sentence that starts with “at least” (no amount of justification will make the parents feel better).
I knew something was wrong with him/her or I think the Doctors should have done more.
Don’t unload your new fears and anxieties on the parents. Most parents understand that what happened to them affects others as well and probably does cause you to have fear and anxiety related to your own kids, but these parents are likely struggling to work through their own fears and anxieties and cannot focus on listening to the fears of others.
Don’t say a new pregnancy will make everything better or be overly excited about it without recognizing that it comes with a whole host of complicated emotions for the parents. A new baby doesn’t make everything ok or mean the parents have moved on in any way. It is helpful to ask the parents about the emotions of the new pregnancy, rather than make assumptions about the impact it has on their grief.
The most important thing to remember is that each parent is different and how they feel may change over time. The best advice we can give you is to candidly ask the parent what they are comfortable with and follow their cues.