It’s hard for doctors and nurses to find the right words when expectant parents are going through a pregnancy loss. Here’s the kind of support patients need and deserve.
Photo: iStock/ake1150sb
The doctor held the ultrasound transducer on Jenna Hewson’s belly on a busy Saturday morning in the labor and delivery unit at a Calgary hospital. Hewson was 25 weeks pregnant, and she’d come in, alone, after feeling a decrease in the baby’s fetal movements. Her partner had stayed home to watch their older child.
“The doctor just said, matter-of-factly, ‘I don’t see it. That happens sometimes,’” recalls Hewson.
“Don’t see what?” she asked.
Nobody answered, and finally a nurse, who was also in the room, said, “The heartbeat.” Hewson had to conclude for herself that her unborn daughter, Rose, had died, and she was about to have to deliver a stillborn baby. She was sent home with induction medicine and instructions to return the next day to deliver the baby.
“I actually didn’t see a doctor again until I had been in labour for almost 10 hours,” she says. “When I did finally see a doctor, he was thorough in his explanation of what it would be like to deliver a stillborn baby and the complications that could arise. That was, of course, helpful, but he was very clinical and referred to my daughter as a fetus,” says Hewson.
Not all doctors are this cold and routine about the loss of a baby. Some are excellent at empathizing, and feel each loss personally themselves. In fact, OBs, midwives, and other prenatal specialists do receive specific training, as do all doctors, on counselling patients when they deliver bad news. But some expectant parents find out the hard way that not all providers are sympathetic and clear when communicating a miscarriage or infant loss. Many have been stung by callous remarks or felt dismissed by their doctors during what may be one of the most vulnerable and helpless experiences of their lives.
A doctor’s words and actions can be the difference between a healthy grieving process, and long-term trauma that lingers—some parents struggle to enjoy future pregnancies, and others are more hesitant to trust or confide in doctors in general, going forward. A stoic or efficient bedside manner can come across as heartless, which then sears into a patient’s memory as they’re grieving.
How to deliver bad news
For Peace Nwegbo-Banks, an OB/GYN in Pearland, Texas, communicating with patients about loss is a big part of what she does. “So many women have told me of awful prior experiences, and I believe them,” she says. “There is definitely room for improvement.” She says empathy and body language matter. She sits eye-level with the patient, because standing up or hovering in the doorway, as if you’re about to leave, comes across as superior or distant, when these situations require connection and support.
She has a standard script she usually follows: “I’m so sorry, Ms. ___, I have to deliver some very unfortunate news to you, and I’m so sorry to have to do this. But your baby is no longer alive. Your baby’s heart is no longer pumping. I have confirmed this with my colleague here, and I am so sorry.” Then she shows the parent the ultrasound screen to confirm the baby’s heart has stopped beating.
She says it’s very important to be clear about the potential reason for the loss. She is also quick to ask the patient if there’s someone they can call to come be with them. She then gives them the room to grieve. “I provide Kleenex and hold their hand as they process the news. Patients that are OK with hugs, I readily hug. I also cry with them. Every time.”
Choosing the right words when there are no words
There can be a considerable discrepancy between doctors and healthcare professionals who try to make room for grief and pain, and those who try to skim over it. Word choice really matters.
When Louise Gleeson, a mom in Oakville, Ont., experienced a miscarriage during her first pregnancy, there was a big difference between the way her midwife spoke to her about what to expect and the tone her family physician took at a later follow-up visit.
“When I started bleeding, it was terrifying, but I felt like my midwife was there to guide me and I really appreciated that,” she says. But at a different appointment, with her family doctor, Gleeson used the word “baby” to refer to her pregnancy, and the doctor’s response startled her.
“She turned around and lifted her hand like she was telling me to stop. And she looked at me and said, ‘The first step you need to take is to stop calling it your baby. You’re never going to move on if you keep using words like that. It was a blob of tissue—you didn’t lose anything. Your body got rid of something that it wasn’t supposed to have.’” Gleeson says she felt humiliated, ashamed, and stupid, with psychological after-effects that lasted through her subsequent pregnancies.
“I think doctors need to incorporate this into their sensitivity training,” says Gleeson, who’s now a mom to four living children. “The pregnant person gets to use whatever language they want to describe it, and they get to speak about that pregnancy in whatever format or form feels right and good for them.”
Jackie Thomas, an OB/GYN with a special interest in early pregnancy loss and miscarriage at Mount Sinai Hospital in Toronto, agrees. “100 percent—it is always called a baby. I’ve taught medical students that—‘Stop calling that baby a fetus.’ No woman thinks of it as their fetus—it’s their baby from the minute they know they are pregnant. I feel strongly about that,” she says.
Other outdated terminology is being eradicated as well, such as the politically-loaded connotations that come with using the official medical term for a miscarriage, “spontaneous abortion.”
Nwegbo-Banks says that the right word choice can help the parents know exactly what is happening. “It’s really important to let the patient know that the fetus is no longer living, so that they can properly acknowledge what has happened,” she says. She uses a variety of terms (no longer living, deceased, dead, expired), which can be jarring, but honest language is important. “Trying to sugarcoat the diagnosis is not helpful,” she says. “When this horrible situation occurs, patients do not need to be confused.”
Both Nwegbo-Banks and Thomas try to emphasize that typically, a miscarriage isn’t the patient’s fault, and there was nothing they did to cause it. Thomas says she repeats this many times— “it wasn’t your fault”—in hopes that the message sinks in.
Having a miscarriage in the ER
Bedside manner can also really depend on your location: an emergency-room miscarriage or loss can be a really different experience than finding out during an ultrasound or regular checkup with your usual OB or midwife. Because many miscarriages happen in the first trimester, you may not even have your own OB/GYN to call yet. And if it’s during a night or weekend, you may end up at a ER instead of a doctor or midwives’ office.
When Gleeson visited the ER for her miscarriage, she was bleeding heavily, but since it wasn’t deemed a life-threatening emergency, she was asked to sit in the waiting room, which can make pregnant people feel de-prioritized or ignored. She eventually miscarried alone, in the ER bathroom, while still waiting to be seen by a doctor. Then, when Gleeson’s partner arrived at the hospital, and the ER doctor saw him consoling her, she says the doctor suddenly seemed to view her differently.
“He actually said, ‘Oh, I’m sorry. I had no idea this was a wanted pregnancy,’” she remembers. She now thinks that the doctor had previously assumed—possibly based on her youthful appearance, and the fact that she was initially there alone—that she hadn’t wanted the baby. The doctor’s inappropriate comment, discriminatory assumptions and lack of sensitivity has stuck with her for years.
“Early Pregnancy Loss in the Emergency Department,” a 2017 report by the Ontario Provincial Council for Maternal and Child Health, was written in order to improve the experiences of people who seek help for miscarriages in the ER. The report, which Thomas co-wrote, acknowledges that this is an area for improvement and recommends several principles of care, including: acknowledging patients’ feelings and encouraging them to share them; listening openly, with intent, and being empathetic; being honest and realistic, but providing reassurance where appropriate; and validating the loss and legitimizing grief.
It also includes specific recommendations about giving the parents a chance to see and hold the baby’s body if possible, and encouraging parents to honour their child by naming them, planting a tree, or suggesting other ideas.
The future of compassionate miscarriage care
Because this can be such an emotional, fragile time for patients, and because the medical system is not really set up to support those experiencing loss, some advocates are working to build a different model. Thomas, who serves as the quality improvement and patient safety lead for the obstetrics and gynecology department at Mount Sinai, also runs a clinic at her hospital specifically for early pregnancy care. Patients are admitted to her clinic if they are having first-trimester complications such as bleeding, miscarriage, or ectopic pregnancies. (Sometimes they are referred there for follow-up from the ER.) With this model, patients are moved directly to their follow-up appointment with their doctor, instead of that excruciating wait, still wondering what the ultrasound tech was seeing or thinking.
If you are receiving care that feels disconnected or too cold and clinical during a loss, or at any other prenatal appointment, Thomas says it’s actually best to speak up directly, and in the moment, to your provider, who has been professionally trained to use clear communication and be empathetic.
Typically, she says, “patients don’t say anything, or they keep it to themselves.” Later, they may vent to friends, or write a review on a website like RateMDs.com, but the best thing would be to speak up right there and then, if you can. She suggests the following: “I feel you aren’t interested in my situation, and I feel you don’t care.”
About 90 percent of the time, Thomas says, doctors do care—in fact, they care a lot—but they’re stressed and overworked. “Sometimes I have 25 things on my mind. Maybe I delivered a baby right before that, who I can’t get out of my head.” Thomas says that if you have the emotional strength to do so, it’s perfectly OK to say to your doctor, “You’re hurting my feelings right now.”
You can also ask for water or juice, some privacy, more information to better understand why the loss happened or what the next steps will be, and more time to process with your partner if you’re feeling rushed or ushered out of the room.
Finally, Thomas hopes pregnant parents will stop following the old adage that they should wait until 12 weeks to share their pregnancy news with family, as it only isolates them from support if they do experience loss. As she says, your baby is your baby as soon as you’re pregnant, regardless of the outcome.
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