MEDICAL PROFESSIONALS, YOU PLAY ONE OF THE MOST PIVOTAL ROLES THROUGHOUT THE CARRYING TO TERM PROCESS FOR PARENTS WHO RECEIVE A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION. NOT ONLY WILL YOU BE THE ONE TO DELIVER THE NEWS OF THE DIAGNOSIS, YOU ARE THERE TO HELP PARENTS UNDERSTAND THEIR OPTIONS. YOU THEN SERVE AS A CARE PROVIDER AND SUPPORTER THROUGHOUT THE PREGNANCY, LABOR, DELIVERY, AND EVEN THE BEREAVEMENT PERIOD THAT FOLLOWS. YOU ARE CRUCIAL TO THIS PROCESS, AND YOU HAVE THE POWER TO SHAPE THIS EXPERIENCE FOR PARENTS.
As the experts and care providers, parents look to you for knowledge, medical care, and support. The language you use to communicate the diagnosis shapes how heard, supported, and validated a parent feels. The language you use when presenting options informs parents of their rights and choice. The language you use throughout appointments tells parents that they are either welcome or unwelcome to share insight, ask questions, and navigate this experience as a part of their own care team. The language you use about their experience and emotions changes how a parent grieves and processes. Your language contributes to the creation of meaningful and trustworthy relationships between you and your patient.
As medical professionals, you are problem-solvers. You have the ability to take a problem and find solutions. You can think creatively, utilizing your foundation of knowledge, to provide the best, individualized care for your patients. When faced with situations that do not have solutions, like cases of life-liming prenatal diagnoses, you may feel uncomfortable with the unknown and emotional complexity. It may feel disconcerting to navigate these situations with parents because you know you cannot give parents want they want: a cure that guarantees them their baby.
The truth is, these parents do not need you to fix these circumstances. They know that you cannot fix what has happened to their child. They know that you cannot provide them with the life they were expecting. They know that their choice to continue this pregnancy despite the diagnosis is not an easy choice and that it will come with many unknowns, hurdles, and emotional complications. They are neither looking for you to fix this nor are they looking for you to make this easy. Rather, parents want you to acknowledge that, while this is not any easy experience, it is one they willingly embrace because the time they will have is worth it to their family. Your patients need you to support their choice, validate their emotions, and walk alongside them throughout the process.
While you cannot fix the diagnosis or make pregnancy continuation easy, you do have the power to make this process less isolating, less confusing, and less overwhelming for parents. Your language- what and how you communicate- is your most powerful tool for supporting your patient. The power and influence of your communication should not be underestimated. You really do have the tremendous ability to shape how your patient navigates and feels about their experience, and ultimately, how they grieve after the death of their baby.
Medical professionals, there are three types of communication that matter as you navigate supporting parents who receive a prenatal diagnosis of a life-limiting condition and choose pregnancy continuation: intrapersonal communication, interpersonal communication with colleagues, and interpersonal communication with patients.
“Medical professionals, there are three types of communication that matter as you navigate supporting parents who receive a prenatal diagnosis of a life-limiting condition and choose pregnancy continuation: intrapersonal communication, interpersonal communication with colleagues, and interpersonal communication with patients.”
Intrapersonal communication is one’s internal use of language or thought. Intrapersonal communication is how you communicate with yourself about the world around you. Your internal dialogue- about yourself and your patient- shapes the way you communicate and engage with your patient. When you engage in interpersonal communication- or communication between two or more people- your inner self is involved. Your thoughts and feelings shape perception and expectation which in turn shapes how and what you communicate in conversation with other people.
Your beliefs about how or what you should be communicating can interfere with your communication with your patient when you use it as a criticism of yourself. Try changing the story you tell yourself. If you feel uncomfortable about navigating this experience with parents, use this opportunity to shift your thoughts, feelings, and language. Communicating your uncertainty, your emotional response to the diagnosis and experience, and even your difficulty knowing exactly what to say to your patient can be a powerful tool for connection.
Be transparent with your patient because patients benefit from knowing how you feel, how you are affected, and even what you do not know. You are not a perfect person or communicator, and your patients are not expecting you to be. They simply want to know that you are invested and making an effort, and your transparency can actually be a foundation for a trusting and supportive provider-patient relationship.
Encourage parents by letting them know that you are invested in their experience and that you care. When parents know that you care, they will be better able to hear the information you present to them. Transparency breeds connection and trust.
In the same way that your intrapersonal communication about yourself influences interpersonal communication with your patient, your internal dialogue about the patients themselves influences how you engage and interact with them. When a parent makes a choice that you did not expect them to or one you would not have chosen yourself, your internal dialogue may influence your level of empathy or support for that choice. You are entitled to your opinion, but be careful not to let that opinion influence how you communicate and interact with your patient.
In the same way that learning to communicate more effectively with patients is important, learning to communicate with oneself and understanding how that communication affects interpersonal communication is important to good patient care. Your thoughts, beliefs, and inner dialogue can be as important as the words you actually speak to your patient. Thoughts inform the way we speak, and the words we speak inform how we think.
INTERPERSONAL COMMUNICATION WITH COLLEAGUES
In addition to your internal thoughts and feelings, your interpersonal communication with your colleagues affects the experience and care received by parents facing a prenatal diagnosis of a life-limiting condition. The language you use with your colleagues absolutely informs the language you use with your patients. How and what you communicate to your colleagues has the power to change how you think, perceive, and experience your patients. How and what you communicate to your colleagues has the power to change how your colleagues think, perceive, and experience your patients. How and what you communicate to your colleagues has the power to change how parents feel supported, heard, and included in their care.
The way a patient’s social history, medical history, or any other relevant information is presented tells a story. It informs the listener about more than just the patient. It tells the listener how you feel and think about the patient, their history, and their current experience. It tells the listener what information you have deemed important or irrelevant. The language you use with your colleagues has the power to shape every interaction and encounter these parents have throughout their pregnancy.
As a provider on a collaborative and multidisciplinary care team, you will be providing and receiving information relative to your patient’s care. All people have an innate level of bias based on their perceptions, beliefs, and experiences. The challenge in communicating with others is learning to be intentional about checking bias and assessing when someone else is presenting information with bias. When you are presenting information about your patient to a colleague who has not yet met your patient, your language really does matter. How and what you communicate has the power to change how your colleague perceives your patient, how they engage with your patient, and how they think about your patient and the plan of care for that patient.
In the same way that it is important to communicate clearly, compassionately, and respectfully with your patient, it is important that you communicate about your patient to your colleagues clearly, compassionately, and respectfully. It is important that you present comprehensive information, taking care not to omit or inadvertently leave out information that could be crucial to the emotional and logistical care a patient would receive from your colleague.
One simple act that could dramatically change how your patient feels cared for and supported by their care team is to ask your patient if there is anything that they want you to be sure you convey to your colleagues when making a referral or working collaboratively with the other medical professionals providing them care. By making a point to ask this question, you are showing your patient that you care about their insight and emotional well-being, that you are working to ensure that every provider is informed and on the same page, and that you understand the importance of both communication between patient and provider and communication between provider and provider.
“While you cannot fix the diagnosis or make pregnancy continuation easy, you do have the power to make this process less isolating, less confusing, and less overwhelming for parents. Your language- what and how you communicate- is your most powerful tool for supporting your patient.”
INTERPERSONAL COMMUNICATION WITH PATIENTS
As medical professionals, you know that good communication is critical to good patient care. You need patients to communicate with you so that you can provide the best possible care, and you need to be able to communicate a care plan to patients in a way that creates trust and encourages patient compliance. Good communication is the foundation to a functioning, trustworthy, and supportive patient-provider relationship.
In cases where your patient receives a prenatal diagnosis of a life-limiting condition, your language- how and what you communicate- matters immensely because it truly does shape the experience for these parents. Whether you are the one to deliver the diagnosis, provide prenatal care, offer care as a specialist, or provide care during the delivery and postpartum period, your words, compassion, and support contribute to how a parent understands their circumstance, identifies their role and rights throughout the process, and navigates the emotionally complex aspects of pregnancy continuation.
Simply put, your words, which are influenced by your thoughts, feelings, and communication with your colleagues, coupled with your patient’s own thoughts, feelings, and perceptions make up the patient’s personal narrative. This is the story they tell themselves and others about their experience.
A parent who experienced compassion as the diagnosis was delivered, support as they made their decision, and felt heard as they navigated the pregnancy and time with their baby will have a very different personal narrative than the parent who felt a lack of compassion, support, or connection with their medical provider. Each experience a parent has with their care team continues to shape that personal narrative, and ultimately, how that parent grieves.
This process is not easy or without emotional complexity and pain. However, parents often experience a heightened sense of difficulty and a range of emotions when they do not feel supported by their care team. You are a major player in one of the worst and most complicated experiences in a person’s life. What you do and say truly does have an impact because your opinion, thoughts, feelings, and experiences throughout this process matter to the patients who look to you for wisdom, support, and guidance.
Parents fear not being heard and supported, and as result, not receiving the care they need. You have the ability to lift that burden from parents by communicating transparently, clearly, compassionately, and respectfully. Engage with your patients in a real and meaningful way that instills trust and lets the parents see that care and are affected by what is happening to them.
When parents feel supported and cared for from the moment of diagnosis, they engage with their care team with more confidence and the ability to advocate for themselves by expressing their needs. When parents feel supported, heard, and cared for throughout prenatal care, they feel less anxiety and fear going into labor and delivery. When parents feel supported, heard, and cared for throughout labor and delivery, they enter into the bereavement period comfortable with allowing others to support and care for them. You are setting the precedent for how a parent who has chosen pregnancy continuation should be treated. You are showing these parents that their emotions and experiences are valid and impactful, and as a result, they are better able to navigate the complexities of this experience.
Many parents who lose a child experience disenfranchised grief, or grief that is not acknowledged or supported. Losing a child is an isolating experience, and the pain of having a grief of this magnitude not acknowledged is excruciating. Many people underestimate the impact that the death of a child, especially a baby who has a life-limiting diagnosis, has on a parent.
As the medical professional, you are often the first person to model validation, acknowledgement, and support to these parents. In many ways, you are modeling for them what they can expect from other medical professionals and their network of support. In these moments with your patient, you have the power, through your language, to build these parents up and assure them that their experience and their emotions matter, or you have the power to magnify their grief by contributing to the disenfranchisement of their grief.
While this may feel like a weighty responsibility, it really is a privilege and a gift to be able to do the work you do and enter in to these experiences with your patients. Please never underestimate the powerful impact you have in the lives of your patient. Your language and communication go a long way toward improving a devastating and difficult situation. You can never fully improve the circumstances or take away the pain, but you can change how a parent grieves by communicating clearly, compassionately, and transparently with your patient. It really does matter, and it really is a gift that parents will not forget.