In the practice of providing prenatal care, we understand that you will occasionally find yourself in the extremely difficult position of delivering devastating news to families.
As a medical professional, this can be an emotional experience for you, and we want to help support you in caring well for these patients. To do that, we want to provide you with patient perspective along with tangible aspects of care to consider incorporating into your practice.
Pregnancy, whether uncomplicated, high risk, or resulting in a loss, is an emotional experience. There is an underlying sense of worry or fear for most women during pregnancy, but those feelings are magnified in cases of a terminal prenatal diagnosis. From the moment of diagnosis, these families begin to grieve. They grieve the loss of a future, their dreams and expectations, and parts of who they were before.
The loss experienced at diagnosis is compounded by the losses experienced along each step of the carrying to term journey. Every first is a last. Every opportunity to make memories is a reminder of all the memories that will never be made. Continuing a pregnancy despite a terminal prenatal diagnosis is a mess of grief, anticipating the loss to come, making memories, and fighting for moments of joy.
As the doctor providing care for these families, it is important to consider their emotional well-being at each prenatal appointment. The quality of prenatal care received can have far-reaching and long-lasting effects on the mental health and the bereavement process for these parents. There are a few practical areas of prenatal care to review when it comes to carrying to term families: communication, consistency, and special considerations.
How you communicate with these parents is the most important aspect of their prenatal care. It’s so important in fact that we have a whole post dedicated to communicating with parents in their grief post diagnosis, anticipatory grief, and bereavement period following loss. You can find that post here.
When communicating with bereaved parents, it is important to take a “people first” approach. They are more than a patient facing a terminal diagnosis for their baby or babies. They are parents struggling to understand why this happened, why they can’t fix it, and what it means for their future. They are people who’ve likely had no experience with the realities or statistics of bad outcomes in pregnancies. They are people who only care that this is happening to them and their baby, not that this happens to other people.
Dr. Shannon Abikhaled, an obstetrician-gynecologist, explains that her role as a doctor is to support the decision of the parents. She understands that for her patients, the news of a terminal diagnosis is about more than just understanding what the diagnosis means. These are parents who are living and wrestling with the physical, emotional, and spiritual heartbreak of knowing that their baby will not live. Therefore, when you enter an appointment with these families, remember that they are grieving parents first and foremost. To learn more about how Dr. Abikhaled cares for her patients facing a terminal prenatal diagnosis, click here.
When you explain their options, it is important to do so without judgment. Offer options and next steps without being directive. Use plain language with limited medical jargon, unless asked. This allows for families to consider their choices without feeling pressured, judged, or overwhelmed by terms they aren’t familiar with. Simply put, parents need to feel heard, supported, and as though they have a clear understanding of what is happening.
Parents experience high levels of anxiety and depression following a terminal prenatal diagnosis, and an Australian study on congenital anomalies found that these levels lowered following prenatal counseling. The study reported that families prefer prenatal counseling to come from a knowledgeable and empathetic medical professional who will be involved in the duration of care.
As the doctor providing prenatal care, these families will likely be looking to you for prenatal counseling in the form of talking through the diagnosis, next steps, and what they will experience, in addition to being given tangible resources like handouts, charts, and referrals to organizations like Carrying To Term. Therefore, it is incredibly important that you are aware of how you are communicating with them.
Patients facing a terminal prenatal diagnosis desire consistency during their prenatal care. Since care provided during a terminal pregnancy can take a multidisciplinary approach, parents may opt to form a care team of doctors, specialists, doulas, and chaplains. As members of a family’s care team, it is critical that the information coming from each of you is consistent. Parents will already be overwhelmed by information without having to sort through dissenting opinions and inconsistent recommendations. Regularly check in with your colleagues and work together to provide high quality support and care.
A care conference between the parents and every member of the care team is a critical practice in supporting these families. This is a time to discuss the family’s birth plan, understand their wishes for pregnancy, delivery, and the precious time they will have with their baby. This conference allows you, as the medical professionals, to plan and coordinate care according to the needs and preferences of the parents.
Additionally, it is important to ensure that everyone in your office involved in the care is informed. From front desk staff to nurses to doctors, everyone should be up to date and aware of the status of care as relevant to their role. For a bereaved parent, it can be incredibly overwhelming and painful to have to retell the diagnosis, the most recent care received, and any other information that can be found in their chart to new front desk staff, nurses, and doctors.
We understand and acknowledge how busy doctors and nurses can be. We know it can be difficult to remember or be on top of every detail for every patient, but taking a moment to review the chart or check in with other members of the care team before entering a consultation or appointment with these families is critical. This act of mindfulness and support has a major effect on the parents’ emotional well-being. Don’t underestimate the impact this can have. Parents want to feel supported and like their baby matters to you personally. You can provide that feeling by being well versed on the details of their case.
A way to ensure consistency and familiarity with the details of the case is continuity of care. If your practice has patients see multiple doctors, nurses, or midwives throughout their prenatal care, strongly consider having the same one or two professionals provide care to a patient facing a terminal prenatal diagnosis. This fosters a sense of security and support. If your practice has several ultrasound technicians, consider adopting this same continuity of care.
Every doctor, nurse, midwife, and ultrasound technician should have the opportunity to care for families facing a terminal prenatal diagnosis so this is not to suggest that the same few professionals should care for all of these cases. We are merely recommending that each family should get consistency and familiarity in their individual care.
In addition to communication and consistency, there are some other special considerations to review.
As parents facing the loss of their baby or babies, it can be emotionally overwhelming and painful to sit in a waiting room with pregnant women, newborns, and other children. Strongly consider allowing families facing a terminal prenatal diagnosis to wait in a private waiting room or directly in an exam room following check-in. This might seem like a small consideration, but don’t underestimate the power this act of awareness and care can have on bereaved parents.
When ultrasounds are conducted, consider allotting for extra time. In some cases, ultrasounds are the only time that the parents will get to see their baby or babies alive and moving. Allow for extra time so that these parents can engage with their baby and make memories. Additionally, consider providing extra sonogram photos or videos to take home as keepsakes. Ask the parents if they’d like sonograms of the baby’s profile, hands, feet, or any other feature.
When scheduling appointments or consultations with families carrying to term, block off longer time for them. This extra time allows for more in-depth prenatal counseling, discussion, questions, and planning. Every family may not need the extra time, but the act of making it available to them communicates that they are a priority and will be supported.
This is by no means an exhaustive list, but these small considerations have a big impact. The quality of prenatal medical and emotional care received affects how informed, prepared, and supported parents feel. This sense of support can lessen the judgment, isolation, and anxiety parents experience throughout the pregnancy and as they transition into life after loss. As a medical professional providing prenatal care to these families, you have the opportunity to make small changes with tremendous impact.
Providing this level of care to families facing a terminal prenatal diagnosis can take a toll on you. This work requires a level of empathy, compassion, and dedication that is self-sacrificing. We acknowledge the sacrifices you make for families facing loss, and we want to continue to support you as you support your patients. In order to care well for these families, we believe that doctors and other professionals must be supported. To learn more about caring well for yourself while supporting patients, please read our post on self-care for medical professionals found here. Thank you for the work you do.