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ACCORDING TO A SYSTEMATIC REVIEW OF PRENATAL COUNSELING FOR CONGENITAL ANOMALIES, PARENTS WHO RECEIVE PRENATAL COUNSELING FROM A KNOWLEDGEABLE MEDICAL PROFESSIONAL FOLLOWING A PRENATAL DIAGNOSIS EXHIBIT LESS ANXIETY, INCREASED RECALL OF THE DIAGNOSIS, AND A BETTER UNDERSTANDING OF THE PROGNOSIS.
It is both common and normal for parents to experience high levels of stress and anxiety following a prenatal diagnosis of a life-limiting condition. The heightened levels of emotional and psychological distress that occur during diagnosis inhibit the parents’ ability to fully hear, process, and understand the information being presented about their child, the diagnosis, and the prognosis. Parents often leave the diagnosis appointment overwhelmed, confused, and anxious about the information presented, the unknown aspects of the future, and the anticipatory grief they are experiencing.
The primary purpose of prenatal counseling is to educate and equip parents to make informed decisions in the months ahead. Additionally, doctors can foster a supportive environment and build rapport with their patients by providing this time and space for these parents to process, ask questions, and learn everything they need to in order to navigate the diagnosis and pregnancy continuation. When they are provided with education and support, parents are better able to cope with the diagnosis, walk through decision-making, and prepare for delivery and life after the death of their baby.
Prenatal counseling is an important part of the care you provide to your patients who receive a life-limiting prenatal diagnosis. Your patients will look to you, the knowledgeable medical professional, for detailed information, answers to their questions, and support throughout pregnancy continuation. As you offer support to your patient, there are a few tenets of prenatal counseling to keep in mind. Patients respond best to prenatal counseling that is offered immediately and on an on-going basis. During prenatal counseling, patients want clear, plain language, a non-directive approach, and empathy from their care providers. Patients prefer that their prenatal counseling takes a multidisciplinary approach and that the in-person counseling is supplemented with tangible information and support resources to take home.
“Patients respond best to prenatal counseling that is offered immediately and on an on-going basis. During prenatal counseling, patients want clear, plain language, a non-directive approach, and empathy from their care providers. Patients prefer that their prenatal counseling takes a multidisciplinary approach and that the in-person counseling is supplemented with tangible information and support resources to take home.”
IMMEDIATE AND ON-GOING
Following the news of the diagnosis, parents will have many questions as they process the information they were given, navigate the waiting, and begin to make decisions. Carrying To Term recommends that medical providers schedule a prenatal counseling appointment with their patients as soon as possible following the diagnosis. Doctors should let their patients know that a follow-up appointment will be scheduled to provide patients the time and space to talk with their medical providers about the diagnosis, the prognosis, and any questions the parents may have.
In preparation for the initial prenatal counseling appointment, parents should be encouraged to read any information or materials presented to them at diagnosis, think through and create a list of questions, and begin to consider who their care team will be throughout pregnancy continuation.
By providing your patients with time to process and prepare before the follow-up appointment, you are ensuring that these parents can make the most of their prenatal counseling appointment. They will have had the time to process through some of the range of emotions they will experience following diagnosis. They will have had time to research, gather their thoughts, and create a list of questions. They will have had time to consider their needs, beliefs, and wants regarding their pregnancy continuation experience. This brief period of time equips parents to play an active role in their care and offers them the supportive and comforting knowledge that they will have a dedicated time and space to process with the knowledgeable medical professional who delivered the diagnosis.
Following the initial diagnosis and prenatal counseling appointment, patients should be provided with on-going prenatal counseling in the form of dedicated time at each appointment to ask questions, process information, and get insight from their providers about decisions moving forward. The pregnancy continuation process comes with many decisions, unknown aspects, and new information and questions at each step of the process. When medical professionals offer parents on-going prenatal counseling, parents continue to exhibit less anxiety and stress as well as an increased sense of agency and ability to take an active role in their care.
On-going prenatal counseling also serves to foster an environment of support, curate trust, and build rapport between provider and patient. All of which helps parents feel emotionally supported as well as physically cared for throughout pregnancy continuation, labor, delivery, and the postpartum period.
CLEAR, PLAIN LANGUAGE
Parents who have recently received a prenatal diagnosis of a life-limiting condition have an overwhelming amount of information to process, while also navigating the complex nature of anticipatory grief. The emotionally charged and psychologically distressing nature of such a diagnosis makes it very difficult for parents to fully comprehend and process what is being explained to them about their baby and their future. It is critical that medical providers communicate important information regarding diagnosis, prognosis, decisions, expectations, and next steps in clear, plain, easy to understand language.
While medical terminology is important and should absolutely be provided to the parents, be sure to communicate the same information without medical jargon. This helps parents contextualize and understand the medical information in a way that makes sense to them and is easy to comprehend. When using plain language, it is important to avoid euphemisms or terminology that could inadvertently lessen the severity of the diagnosis and prognosis, thereby providing false hope to the parents. For example, when using the terminology “life-limiting diagnosis,” it is important that parents understand that there is a difference between a life-limiting diagnosis that will result in the death of their child and a life-limiting diagnosis that means a child will have a life that is limited physically, mentally, or developmentally.
It may seem empathetic, sensitive, or comforting to avoid words such as “death” or “terminal,” but it is important that providers inform their patients of the nature of the diagnosis, the realities of the prognosis, and what these parents can expect moving forward, bad outcomes and all. There is no good way to lessen the impact and devastation of a life-limiting diagnosis and the subsequent death of a baby. There is no avoiding the realities of such a diagnosis and result, so it is important that parents are fully informed through the use of clear, direct, and plain language that allows them to understand, process, and begin to cope with their new reality.
It is also important that parents be informed of all aspects of the diagnosis. As the medical professional, use your discretion about the method, manner, and timing in which you present all the information, but ultimately, parents exhibit less anxiety and stress when they have all the facts and information necessary to make informed decisions. This is where a multidisciplinary approach to prenatal counseling can be incredibly beneficial to parents.
When communicating with patients, it is helpful when all members of the patient’s care team use consistent language that provides clarity and aligns with the patient’s preferred terminology. If a patient refers to their baby by name, gender, or simply the term “baby,” it is important that the providers mirror that language, as it builds trust and rapport between patient and the providers on their care team.
Throughout on-going prenatal counseling, you will be presenting your patient with a lot of information, answers to their questions, and their options moving forward. To help your patients process and recall all of this information, Carrying To Term encourages you to:
- Suggest that your patients take notes
- Provide written notes to your patients regarding important medical terminology, such as the diagnosis, tests, or care plan options
- Repeat key medical terminology, such as the diagnosis, to your patients several times
- Summarize the information you provided to your patients at the end of each appointment
- Ask your patients to restate key points back to you to aid in their recall and processing
“It may seem empathetic, sensitive, or comforting to avoid words such as “death” or “terminal,” but it is important that providers inform their patients of the nature of the diagnosis, the realities of the prognosis, and what these parents can expect moving forward, bad outcomes and all. There is no good way to lessen the impact and devastation of a life-limiting diagnosis and the subsequent death of a baby.”
Patients who are presented with their options following diagnosis and throughout pregnancy continuation in a non-directive manner exhibit less anxiety, stress, and self-doubt when it comes to decision-making. Your patients are under a tremendous amount of stress and pressure to make sure they understand the information given to them, process it quickly, and then make the decisions that are best for their family while also providing the most amount of time to make memories with their baby.
As the experts and the professionals offering immediate and on-going prenatal counseling following diagnosis, it is imperative that you present these parents with their options and all relevant information in a non-directive and unbiased way.
As both a professional with experience in this area and a person with your own beliefs, we acknowledge that you may have opinions on how you would handle a life-limiting prenatal diagnosis or how you think your patient should navigate this experience based on the diagnosis they have received. While your expertise and your opinions often serve as support and insight for your patients, it is very important that you set aside your beliefs, opinions, and directive advice when presenting information following a diagnosis and during prenatal counseling.
Parents who have just received such devastating news are left scrambling to piece together what they have learned, what options are available to them, and what feels like the best options for their family. In these moments, parents will look to you for advice, support, and guidance, and they need to feel heard, informed, equipped, and supported to make the decisions that feel right to them based on their beliefs, needs, and desires.
So, when presenting options following diagnosis and throughout pregnancy continuation, present all of their options in clear, plain, and easy to understand language without recommending one choice over another.
To help your patients consider all of their options and feel prepared to discuss them with you, Carrying To Term provides an interactive and comprehensive birth planning tool that walks parents through the decisions necessary regarding support, labor and delivery, after birth care for mother and baby, lactation, funeral home preparations, neonatal donation, keepsakes, and the emotional and logistical aspects of carrying a pregnancy despite a life-limiting diagnosis.
This tool is designed to facilitate a supportive and open working relationship between provider and patient to ensure that patients feel informed and heard and that providers feel as though their patients understand their options and are receiving the best possible care for mother and baby. To read more about the importance of a birth plan and how you can support your patients, read our post found here. To explore our birth plan tool and offer it as a resource to your patient, please click here.
“So, when presenting options following diagnosis and throughout pregnancy continuation, present all of their options in clear, plain, and easy to understand language without recommending one choice over another.”
Parents will experience a range of emotions following diagnosis and throughout pregnancy continuation. These emotions can be unexpected, and at times, unsettling to parents navigating such a difficult process. As the medical professionals walking alongside these parents, you will be interacting with them frequently, and each interaction is an opportunity to meet your patient and their significant other with empathy.
Empathy is the capacity to understand and share the feelings of another person within that person’s frame of reference and experience. As a medical professional, empathy is the foundation for building trust and rapport with your patients as well as humanizing such a clinical and difficult experience.
Your empathy, compassion, and presence in prenatal counseling and throughout the complicated decision-making process reassures your patient that you are on their team and will advocate for them, their decisions, and their time as a family. At each appointment, check-in with your patient and their family about their emotional well-being, how they are coping, and whether or not they have support around them. When you acknowledge their feelings and encourage them to create and lean on a network of support, parents feel seen and heard, and they know that you care about what is happening to them.
When you deliver information well- using clear, plain, and non-directive language- you are putting your empathy into practice by supporting your patient. When you actively listen to what the parents share with you about their beliefs, needs, or desires for this experience, you are showing them that you take their position seriously and that you want to understand their perspective. To show your patient that you heard what they shared and that you are utilizing that insight and information as you create their care plan, briefly summarize what the parents have shared with you. This simple act enhances their trust in you and builds rapport throughout the process.
As medical professionals, we acknowledge that you have been taught to keep a professional distance when navigating hard circumstances with your patient. While we support and understand that training, you are also human, and it is okay to express that you are sad or experiencing an emotional reaction to what is happening to your patient and their family. Your human experience and reaction to something so personal and life-changing for your patient is a beautiful display of empathy and entering into this experience with your patient. It lets them know that they are not alone and that the emotions they are experiencing are normal, understandable, and to be expected. It also tells the patient that you are invested in their care because their story and their baby has affected you personally.
Empathy is not about what you communicate; it is about how you communicate. It is about the environment you create for your patient as you help them navigate this experience. Empathy fosters an environment of support, trust, and open communication, which is what parents need to process, understand, and utilize the information you provide to make the best decisions for their family.
“Empathy is not about what you communicate; it is about how you communicate. It is about the environment you create for your patient as you help them navigate this experience. Empathy fosters an environment of support, trust, and open communication, which is what parents need to process, understand, and utilize the information you provide to make the best decisions for their family.”
Parents exhibit less anxiety and stress when they are presented with information and counseled on all aspects of their baby’s diagnosis and prognosis. A multidisciplinary approach to prenatal counseling provides parents with different types of counseling which can help further ease their anxiety.
For families whose baby has a diagnosis that affects multiple parts of their body, prenatal counseling with the relevant specialists can help parents further understand the realities of each aspect of the diagnosis. These specialized counseling appointments help parents understand the full picture of what is happening to their baby, what this means for labor, delivery, and the time they will have with their baby, and it helps them process the information that will inform their decisions at every step of the process.
Carrying to term families may have a care team comprised of their obstetrician, a perinatologist, a perinatal social worker, perinatal hospice and palliative specialists, a pediatrician, and potentially specialists like a cardiologist as well as a neonatologist, doula, psychologist, chaplain, and/or pediatric geneticist. With so many experts providing exceptional and comprehensive care to these families, a care conference organized by the family’s care coordinator and/or perinatal social worker can be an incredibly beneficial time for parents to ask questions and receive prenatal counseling from their team as a whole. Encourage your patient to understand who is on the care team and what role they play, and offer your patient the ability to request and participate in a care conference. To help your patient understand their care team and the role of each specialist, please provide them with our guide to gathering a care team found here.
In addition to the prenatal counseling provided by the most active specialists on a parent’s care team, many parents benefit from counseling offered by pediatric geneticists or genetic counselors. This type of counseling can help answer questions about the origins and inheritance patterns of their baby’s condition. Geneticists can help educate parents about the condition, the future for their family, and any medical research involving their child’s diagnosis. This information serves to further inform parents, equip them with information, and help them make educated decisions about their baby and their family’s future.
TANGIBLE INFORMATION AND SUPPORT RESOURCES
Parents value in-person prenatal counseling highly and view it to be the most important and useful resource following diagnosis and throughout pregnancy continuation. However, parents do find written information, web-based and visual resources, and information about support services to be helpful and useful as well.
The information you provide to your patient at diagnosis and throughout prenatal counseling is critical for parents as they process, understand, and cope with their baby’s diagnosis. Providing your patient with your notes and encouraging them to take their own notes during appointments is helpful and useful to parents. Additionally, patients respond well when their medical providers equip them with reliable resources and websites to help them process and learn about the diagnosis, their options, and the resources available to them.
Carrying To Term offers online resources and tools to help your patients feel equipped, informed, supported, and connected following diagnosis and throughout pregnancy continuation. Our website (carryingtoterm.org) offers the following resources to you and your patients:
- Interactive birth planning tool
- A list of questions to ask
- Videos to help parents understand the carrying to term journey
- A guide to gathering a care team
- Information on neonatal donation
- Scientific, evidence-based studies
- Personal stories
- Comprehensive articles
- And an interactive diagnosis glossary
While our resources are predominately online, we also offer brochures, so that medical professionals can offer a tangible, visual look at the resources, tools, and support available to them and their patients on our website. For more information about our brochures, please read our post found here. To request a free bundle of brochures for use in your office, please contact us here.
In addition to written information and reliable online resources, patients find it helpful and supportive when their care team provides them with information about the local support resources available to them. Local support resources can take the form of individual or couples counseling with a licensed professional counselor or licensed clinical social worker with experience in women’s reproductive health. It can also look like support groups, diagnosis-specific parent’s groups, local organizations who offer bereavement support or peer-to-peer support, and in-hospital support like nurse navigators, social workers, and chaplains.
“Patients respond well when their medical providers equip them with reliable resources and websites to help them process and learn about the diagnosis, their options, and the resources available to them. Carrying To Term offers online resources and tools to help your patients feel equipped, informed, supported, and connected following diagnosis and throughout pregnancy continuation.”
Prenatal counseling is an important, valuable, and helpful resource for parents navigating a prenatal diagnosis of a life-limiting condition and the impending death of their baby. Prenatal counseling with the knowledgeable medical professionals providing on-going care educates parents and equips them to make informed decisions following diagnosis and throughout pregnancy continuation.
Following diagnosis, offer your patient an initial prenatal counseling appointment as soon as possible, and make a point to set aside time at each future appointment for on-going prenatal counseling. As you provide prenatal counseling, present information to your patient in clear, plain language as well as utilize a non-directive and empathetic approach. Create opportunities and encourage your patient to seek out prenatal counseling with their entire multidisciplinary care team whether individually or in a care conference setting. Finally, provide your patient with tangible resources like reliable websites, written or visual information, and the local support services available to parents.
Marokakis, Sarah, et al. “Prenatal Counselling for Congenital Anomalies: A Systematic Review.” Prenatal Diagnosis, vol. 36, no. 7, Mar. 2016, pp. 662–671., doi:10.1002/pd.4836.