Category: Doing bereavement work as a doula

These blog posts discuss bereavement support skills for doulas, especially doulas who do not specialize in bereavement support.

What to do while a newborn is in surgery

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Doulas and other support people may find themselves in situations where a baby is rushed off to surgery immediately or shortly after birth. How can we support families in this situation? Here are five suggestions for you.

1. Find out how long the surgery is. Sometimes, surgeries are short enough that the flurry of birth recovery and getting the family to the baby’s recovery room is all you actually have time for. Sometimes, it’s many hours of waiting.

2. Get a picture of the baby if possible before they go into surgery. You can ask nurses and other staff members to help with this if possible. Especially when there’s an urgent need for a surgery, a full photoshoot isn’t going to be possible, but even if a nurse can sneak a quick photo on your phone as the baby is rushed to the OR, or if you can get a photo as baby is being born, the family will be able to look at and memorize details of their little one.

3. Ask (ideally ahead of time) if the parents can bring a stuffy or a blanket to send with the baby into surgery, if they can’t attend the surgery.

4. Ask (ideally ahead of time) if the parents can send a playlist into surgery, or even just a single song. Invite the parents to listen to the same playlist or song while they are waiting for news.

5. Have activities for the parents ready to go in case there’s a long wait. Some possibilities:

  1. Visit the hospital chapel or speak with a hospital chaplain to pray or meditate.
  2. Eat. (This is especially difficult but especially important considering that one of the parents just gave birth, and there’s likely a long and stressful day ahead.)
  3. Shower or change clothes. Sometimes this reset is the most practical but helpful use of time.
  4. Share the news of the baby’s birth with supportive loved ones who understand the uncertainty of the situation.
  5. Play Tetris. Did you know that studies indicate that playing Tetris after a stressful event can lessen symptoms of post-traumatic stress disorder? (Learn more here https://www.nature.com/articles/mp201723 and here https://bmcdigitalhealth.biomedcentral.com/articles/10.1186/s44247-024-00086-9 and here https://doi.org/10.1016/j.brat.2017.03.018)
  6. Talk with providers. Take the opportunity to ask any questions you might have about the birth and about next steps depending on the surgery’s outcome.
  7. (requires advance planning:) Have parents read themselves or each other letters they’ve written in preparation for this moment.

    Thank you for being present to families in these difficult situations! We appreciate your attentiveness and care for those you serve.

    How to get professional consults while upholding confidentiality

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    In many bereavement cases, we as bereavement doulas (or any kind of support people) can benefit from a consultation with another professional. You may want to ask a neonatologist their general standard of care for a certain type of case, or an experienced bereavement doula how they might handle the family dynamic you’re presented with, or a grief therapist what modalities of therapy might be most useful to someone in your client’s situation.

    Seeking out advice and wisdom from others is often a brilliant idea. But, it poses a few challenges. In this blog post, we’re going to address the potential pitfalls with calling for a consult as regard confidentiality.

    Bereavement doulas and confidentiality

    In the United States, bereavement doulas are generally not bound by HIPAA (the Health Insurance Portability and Accountability Act of 1996), the law that typically protects people’s protected health information from being widely shared by their care providers. The cases where bereavement doulas may be bound by HIPAA usually involve their employer (they work for a hospital, for example) or another role they play (they work as an L&D nurse in addition to a bereavement doula, and those roles may cross at times). If you do not know if HIPAA applies to you, I encourage you to find out immediately.

    But even if you’re like most bereavement doulas and HIPAA or other legal standards in your jurisdiction do not dictate what health information you can share about someone else and how, the code of ethics of your work do dictate that. Haven Bereavement Doulas, for example, pledge to uphold client confidentiality in our code of ethics. This is in service of a person’s right to tell their own story, which is a key principle not only of caregiving but also particularly of grief work.

    So, while you may not be legally required to uphold confidentiality, I would argue strongly that you are ethically required by your grief work (and if you are a Haven Doula, you are also professionally required by your scope of practice) to protect client health information.

    Strategies for handling the tension

    How do we balance these needs to uphold client confidentiality with our desire to seek wisdom from other care providers?

    Here are a few strategies we can use.

    1. Work as a part of a collective or agency where clients willingly give permission for you to share protected health information (and other kinds of information) with your colleagues. This can work very well when you already have a community of bereavement doulas (or birth workers or grief workers) that you trust and associate with frequently. The downside to this strategy is that you’re likely to primarily get input from people whose role is fairly similar to yours. Sometimes, you need to reach out beyond other bereavement doulas, and those folks are less likely to be part of your collective or agency. 
    2. Ask your client to sign a permission slip for you to share identifiable information about them. It’s best in these cases to explain clearly why you want to involve another provider and why you want to be the one to tell the client’s story (rather than having the client reach out to the professional). It is also best to hire a lawyer to make sure that your permission slip meets the requirements of the area in which you live. 
    3. Word your question in a non-identifiable way (that is, one that doesn’t share information that helps people substantially narrow down who your client could be); AND, pose that question to a care provider who is highly unlikely to know your client. This is a huge benefit of having a widespread bereavement support network, like Haven’s; you can find a bereavement doula to give you a consult from five states away, or get a recommendation for a grief-informed lactation consultant to help you think through a client’s needs who will probably never lay eyes on your client — much less recognize them or attribute the details of the case to them. 

    I hope these strategies help you learn from others’ wisdom without sharing client stories. 

    Photo by Christina @ wocintechchat.com on Unsplash

    Listening, over and over and over and

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    On what it means to receive the same story – for the teller and for me

    By Dr. Abby Jorgensen

    When I’m working with a family who is experiencing or has experienced a loss, I often will spend time listening to them as they tell me important parts of their story. Sometimes, it’s the first time they’ve ever told anyone the story. Sometimes, the story details what happened that morning, and sometimes, it’s a history from decades ago that has remained hidden for far too long.

    One common pattern I see is that sometimes, a person who is struggling to make sense of a particular moment or interaction will repeat that story over and over again. Sometimes I’ve counted as many as five or six retellings, in the same conversation, of exactly the same story. The person often doesn’t realize that they’re going back over the same conversational ground. Sometimes there are different inflections in the story, different elements that appear. But the plotline and major characters are the same.

    Sometimes the story is one of sadness (the moment a child took their last breath). Sometimes the story is one of naive joy (the moment she discovered that the pregnancy test was positive and thought everything would be alright). Sometimes the story is one of deep anger (the moment a provider uncompassionately shared the news that the fetus had died).

    And the story comes spilling out, and does again, and then another time.

    Believe it or not, this conversation pattern is very normal. This isn’t even something I worry about, so long as the person seems to be safe and capable of keeping those around them safe. Often times, when they’ve told me the story two or three times, I’ll even invite it the next time they mention that moment — “Could you tell me about that again? That moment seems so impactful for you.”

    Some people might experience listening to this retelling as boring, tiresome, or burdensome. And there is some truth to this — what I think the person is often longing for is a way for the story to end appropriately, for the plotline to finish in a place that makes sense. I can’t give them that. It’s hard to be reminded, over and over and over again, that you can’t actually solve the crushing problem the person is telling you about. It’s grating to keep hearing a message that you’ll never be able to fix a thing you keep hearing about, no matter what you do. Taking on that burden, again, and again, and again, and again, is a sacrifice of mental stimulation in conversation in honor of helping a person carrying the heavy burden that moment places upon them.

    So, listening to the story allows us to help the other person feel less alone. But also, it can give someone the chance to share their child with another person — the child whose public image may never have materialized, who may remain unknown to most of the community. And even further, through listening and attending to the nuanced differences, I can validate different emotions that may arise as someone walks back through the story with slightly different foci each time.

    But most of all, listening to this story is an ever-expanding gift.

    Each time you listen to that story, you give an even larger gift of hearing someone who has not been heard, of receiving something the giver does not yet understand. This is why I call listening to the same story over and over again the “ever-expanding gift.” I deeply believe that creating a conversational space for the release of the story and the emotions behind it, bit by little tiny bit, becomes more impactful the more we do it for that particular story.

    Support people of many kinds are entrusted with stories. While our conversational norms might lead us to expect that we will hear a story once (maybe twice, if the teller has forgotten they’ve already shared it with us), in reality grief stories can be replayed and reiterated and reshared. Next time you are the recipient of these stories, I hope you can identify yourself as the giver of an ever-expanding gift with each iteration of the story you receive, hold, and cherish.

    Photo by Erol Ahmed on Unsplash

    Prepared Presence 2024

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    If you’re a birthworker looking for strategies to talk more about loss on your online presence,

    We’ve got you.

    Come join our free 5-day mini course, Prepared Presence 2024, September 16-20. Each day, you’ll get access to a short video with instructions for a 10-minute activity designed to help make your online presence more welcoming and supportive of loss families.

    Join us for free here!

    Sign up for Prepared Presence 2024

    How to add a funeral home to your resource list

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    One of the most helpful resources for many families is their local funeral home. I’ve made you a guide for how to get in touch with your local funeral home and find out what resources they offer. 

    Step 1: look up the legal requirements for funeral home involvement.
    There are usually state or federal requirements for at what gestational age a funeral home legally must be involved in order for families to have access to their little one’s remains. Do an internet search for key terms such as “legal requirement funeral home fetal remains [insert your country or state here]” to learn what those requirements are for the families you serve.

    Step 2: look up what funeral homes serve folks in your area.
    This is usually pretty easy to find from an internet search.

    Step 3: scan their websites for any mention of perinatal loss.
    Most funeral homes don’t post about perinatal loss, even if they have extra resources specifically for families facing the loss of a child. 

    Step 4: call or email each funeral home to ask about resources in cases of perinatal loss.

    Here is a script for you: 
    “Hi, my name is Abby, and I’m a birth doula here in (state your town or neighborhood). I’m working on a resource list for families who experience miscarriage, stillbirth, or infant loss, and I wanted to ask what kinds of services or resources you have for families in that situation.” And if it’s an email, you can end with: “Thank you for your help!” 

    Some resources you might expect to hear about would include miscarriage burial/cremation options (i.e., options for when a baby’s body is very small or is not identifiable), liaison services with the local hospitals (which are legally required in some states at certain gestational ages), financial support for families in paying for funerals (either from the funeral home or from local partners), and local cemeteries or other place of burial available for babies. 

    You may want to ask specifically about past experiences the funeral home staff has had supporting families through perinatal loss. In my experience, almost every funeral home I’ve worked with has been compassionate and tender, but some have been more informed about perinatal loss than others. 

    Step 5: record what resources are available so you know and can communicate them to families as needed. 

    ***

    I know that this type of resource-gathering is new for a lot of folks. I hope this guide makes it a bit less intimidating. Let me know how it goes!

    -Abby

    5 reasons why every doula should strengthen their bereavement support skills

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    Not every doula should become a bereavement doula.

    But you should strengthen your bereavement support skills anyway.

    Here are five reasons why:

    1. You’re going to support families through bereavement, whether you want to or not. If you do this work long enough, you are going to encounter miscarriage, stillbirth, or infant loss. For some of us, it’s at our first birth. For others, it’s our one hundredth birth. But perinatal loss is the reality that many families face, so as a doula, it’s only a matter of time before you will face it as well.
    2. If you’re going to provide bereavement support, it’s important to do it well. We can do a lot of damage when we guess or pretend we know things. That’s true in any support role; it may be especially true when we support someone through grief.
    3. Families who have experienced a loss previously may be looking for a doula – and you can demonstrate your commitment to them and other loss families through your grief-informed practice. Families expecting after a loss may specifically seek someone who has an idea of what they’ve gone through – and is ready and willing to help them with the emotions, difficulties, and joys of a rainbow pregnancy.
    4. You’re most ready to support a family through a loss or after a loss if you’ve prepared for it. That means that ideally we all strengthen our bereavement skills BEFORE we need them. Level up your grief defaults by taking a Basics of Bereavement Support class, or a Caring for Clients through Loss class, BEFORE you need to have already taken it. (These are accredited for continuing education hours through DONA International, so they can also help you prepare for recertification.)
    5. Bereavement support skills apply in any situation of loss, not just the loss of a little one. If someone has a kind of birth they didn’t want, or loses a loved one or coworker during pregnancy, or experiences a life change they weren’t expecting, your bereavement support skills will be immediately applicable and helpful.

    Don’t delay on strengthening your instincts and expanding your toolkit. Join us in one of our HCBD Haven Certified Bereavement Doula trainings, or sign up for free tips through our newsletter, today.

    Talking about loss on social media

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    As a birthworker, you know that social media is an important part of reaching folks and letting them know what you’re about. But you also know that creating content is a long and tiring process, especially when the content matter is sensitive.

    Grief and loss are some of the hardest topics to talk about, especially in spaces such as social media. But, if you want to demonstrate your support of loss families, grief and loss *need* to show up somewhere on your grid or in your feed.

    I’ve made two sets of templates to help you post about these difficult but necessary topics. The 2024 Social Media Template includes 34 posts for specific days, weeks, and months throughout the year (all of which can be simply updated with new dates and used again for future years). The October Social Media Template includes 31 posts, one for each day of October (Pregnancy and Infant Loss Awareness Month).

    2024 Social Media Template
    October Social Media Template

    What does it mean to be grief-informed?

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    “Grief-informed” is a term I use to capture two key elements of
    someone’s approach toward other people.

    (1) This person anticipates that every person in her or his care may have a history of grief and loss.

    (2) This person chooses to speak and act in a way that reflects that possibility of grief and loss.

    It can also be applied to an organization’s or group’s approach.

    Being grief-informed may require a dramatic overhaul for many of us, as society has taught us to ignore, hide, or shy away from conversations about death (especially the death of a child and prenatal death). And at Haven Bereavement Doulas, we are committed to working together to continue that dramatic overhaul, for ourselves and for our communities.

    To cite this page, please reference:

    Jorgensen, Abigail. “What does it mean to be grief-informed?”. Bereavement Doulas (blog). January 12, 2024.

    Mentorship opportunities

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    You’re not in this alone.

    Whether you’re working toward an HCBD Haven Certified Bereavement Doula certification or not, our team is here to support you.

    Looking for support with a bereavement case right now?

    Let’s chat. This free, 15-minute consultation is designed to get you connected to the info and resources you need.

    Considering taking your bereavement work to the next level?

    Book a mentorship call with Dr. Jorgensen, or four calls, and we’ll work through your specific challenges together.