Agency and Voice: How To Advocate well

Agency is the ability or capacity a person has to act within a given environment or set of circumstances. That ability or capacity is completely unique and personal to each individual, and every person has control over their own agency. However, it is important to recognize that a person's perception of their own agency is often determined or affected by the environment or set of circumstances they are experiencing. This is particularly true for parents facing a prenatal diagnosis of a life-limiting condition and the subsequent loss of their child.

While these parents are fundamentally free to make their own choices regarding pregnancy continuation, further testing, birth planning, and other difficult and emotional decisions, their perceived ability and capacity to make these choices are affected-and in some cases, limited- by social and institutional influences. Parent's beliefs about themselves and the world around them, as well as the beliefs they perceive the world to hold, can have drastic effects on their sense of agency. Everything from the support they receive from medical professionals, how information is presented, culture, their network of support, finances, religion, and past experiences can shape a parent's sense of agency from the moment of diagnosis, through pregnancy continuation, and the subsequent loss of their child.

Many grieving parents experience a loss of or disconnection from their own agency when strong social or institutional influences exhibit bias, give directive opinions, question their decisions, or judge their grief. When parents receive directive or biased advice, they may question the freedom and right they have to choose a different option, ask more questions, or seek second opinions. When parents' decisions are disagreed with or dismissed, they may begin to doubt their role and the validity and place their personal beliefs, desires, and decisions have in the process. When parents' feel judged for their actions or words in grief, shame and doubt set in, and agency is diminished.

When agency is diminished, parents experience a heightened sense of grief. There is already so much that is out of these parents' control from the moment of diagnosis. Their sense of agency should not be one of those things. Instead, the goal should be to ensure that parents feel confident and in control of their own agency from diagnosis, through pregnancy continuation, and following the loss of their child. When parents feel confident and in control of their agency, they trust themselves to navigate complicated and difficult decisions, they feel more fully informed and supported, they prepare and hold space for grief, and ultimately, they adapt better to life after loss. 

When parents feel supported and empowered, they experience less disenfranchised grief, or grief that is not acknowledged by society. It may sound surprising, but society often dictates rules and places expectations on grief, particularly in circumstances where the loss is perceived as less important or less severe than other losses. These rules and expectations can be devastating, because parents facing a life-limiting prenatal diagnosis may feel as though their grief is not valid since the relationship is short and death is expected. When society dictates who is or is not entitled to grief, how someone should or should not grieve, or how long grief should last, parents begin to believe they cannot express their grief or talk about the child they lost, and in turn, they feel isolated and without support. 

Navigating a life-limiting prenatal diagnosis and the subsequent loss of a baby is complicated, nuanced, and emotional, and agency is an important determining factor for how parents will cope, process, and live life after loss. Carrying To Term is here to help medical professionals, parents, and the network of support understand and advocate for agency in grief.


When parents feel confident and in control of their agency, they trust themselves to navigate complicated and difficult decisions, they feel more fully informed and supported, they prepare and hold space for grief, and ultimately, they adapt better to life after loss. When parents feel supported and empowered, they experience less disenfranchised grief, or grief that is not acknowledged by society.

Medical Professionals

As medical professionals, you are often looked at as paragons of medical authority and expertise. When you deliver the news to a parent that their precious unborn baby has a life-limiting diagnosis and will die, you are the expert in the room. As their world comes crashing down around them, these parents will look to you for answers, insight into decisions, and hope. You are a major character in the worst moments a family's life, and that role comes with tremendous responsibility.

These parents will likely not remember exactly what you said to them, but they will remember how you made them feel. Were you compassionate and understanding of the devastation this diagnosis causes? Did you give them permission to ask questions and process? Did you present their options without bias or direction? Did you empower them by inviting them into the process and making them an active part of the care team?

The sense of agency that parents possess throughout the carrying to term journey begins to develop at the moment of diagnosis. Parents who experience less compassion, support, permission, and inclusion feel less confident in their ability to make the right decision for their family. They feel less informed and more overwhelmed following the diagnosis. This experience changes how confident parents feel in their care team, how prepared they feel for future appointments, and how capable they feel to navigate loss and grief.

Every encounter parents have with medical professionals throughout the pregnancy, during labor and delivery, after their child is born, and then in life after loss either positively or negatively affects their sense of agency. So, medical professionals, a level of self-awareness is critical when caring for these families. How you speak- the language you use- matters. It is important to mirror the language that a family uses. If they refer to their child as "baby," by gender pronouns, or by name, avoid referring to the child as a "fetus" and make a point to use "baby," correct gender pronouns, or the child's name. Use clear, plain language in addition to medical jargon when explaining the diagnosis, next steps, necessary procedures, prognosis, or other relevant information.  

Sensitive and adaptive communication conveys to the parents that you are listening, that you care, and that you want them to feel fully informed and empowered in their decisions regarding their child. This alone has tremendous impact, so be aware of how you communicate with parents facing a life-limiting prenatal diagnosis and the subsequent death of their baby. 


Every encounter parents have with medical professionals throughout the pregnancy, during labor and delivery, after their child is born, and then in life after loss either positively or negatively affects their sense of agency. So, medical professionals, a level of self-awareness is critical when caring for these families.

You can also bolster parents' sense of agency by intentionally inviting parents to engage actively with their care team. Encourage parents to ask questions and share their insights. Welcoming parent questions, even when you know you might not know all the answers, goes a long way towards building trust. Parents do not expect you to know everything; they simply want to know that you are willing to research and learn what you do not know. When you are honest with parents in the moments when you do not know the answer, you are creating a relationship built on truth and vulnerability.

When you invite parents to share their insights, you validate that they have value as a member of their own care team. A pregnant woman knows her pregnancy, her body, and her baby best, and her significant other can provide valuable information about her needs- physical, social, and emotional. Pregnant women's significant others are also valuable assets to medical professionals, because they can help hear and process the information given to them by you. These significant others play important support roles throughout pregnancy, during labor and delivery, and in life after loss, so include them in the care process. 

Your permission has incredible power in the lives of your patients, and you can use your power of permission to build up parents' sense of agency. When you give parents permission to advocate for their child and for their own physical and emotional needs through a birth plan, you are clearly communicating that you care, support, and respect the decisions and preferences these parents may have. You are validating that this is a precious and limited time in their lives, and you are showing them that you are willing to help them make memories and fit a lifetime of parenting into a painfully short amount of time. 

Medical professionals, you play a significant role in your patients lives, and your influence on their sense of agency is by far the most impactful in a carrying to term experience. Foster that agency by prioritizing compassion, clear and sensitive language, inclusion, trust, and permission. 

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Parents

Parents, you are your own best advocate. While your sense of agency can be influenced or diminished by interactions with medical professionals, members of your network of support, or the world around you, you are ultimately responsible for your own self-advocacy.

Mothers, you are the one to whom everything is happening. Your physical self is at the very center of each step of this process. You know your body, your pregnancy, and your child better than anyone ever could. Trust your instincts. Know who you are, what you need, and advocate accordingly. You do not need anyone to do this for you, because you are perfectly capable, even in the broken realities of this experience, to do this. So, whether or not you have a significant other or a network of support to help, you can advocate for yourself by feeling informed, making decisions that are right for you and your child, and asking for what you need at each step of the way. 

Advocacy and agency are on-going processes, affected at each point in the experience. Every appointment, consultation, and conversation is an opportunity to advocate and bolster your sense of agency. Be informed. Speak up. Ask questions. Remember that this is not an all or nothing process. If you did not advocate how you had hoped at one appointment or in conversation with your network of support, that is okay. Process, evaluate, and use what you learned from that experience to shape your interactions next time. Pregnancy continuation and facing the loss of your child to a prenatal diagnosis of a life-limiting condition is hard, so be gentle with yourself and let go of expectations of navigating this perfectly. 

Parents, remember that you are important parts of your care team. You bring valuable information, insight, and education to the table. Your experiences teach and shape your medical professionals and your network of support. Your story, your experience, and your emotions matter, because they shape how people understand loss, grief, resiliency, self-advocacy, and agency. 

Parents, if you are navigating pregnancy continuation with a significant other, it is equally as important that you advocate for them as it is you do so for yourselves. As the parents, your two experiences are the most similar, and you share a deep, indescribable love for your child. Support one another by advocating for each other's needs, preferences, and decisions. Navigate each step of the process together. Engage, ask questions, be informed, and communicate together. You are a team. 

Parents, you can bolster your own sense of agency by connecting with other parents who have navigated a similar path. Agency cannot grow in isolation, and the support and connection that comes from hearing, "I understand" and "me too" can be very powerful in the middle of the unimaginable. It can serve as a reminder of the truth you already know: the relationship you have with your child matters, your grief is valid, and your child is wholly worthy of your love and grief. 


Every appointment, consultation, and conversation is an opportunity to advocate and bolster your sense of agency. Be informed. Speak up. Ask questions. Remember that this is not an all or nothing process. If you did not advocate how you had hoped at one appointment or in conversation with your network of support, that is okay. Process, evaluate, and use what you learned from that experience to shape your interactions next time.

Friends and Relatives

Friends and relatives, you are the foundation of a parent's network of support. While parents look to their medical professionals for knowledge and expertise, they lean on you for emotional and tangible support. As the network of support, you have been invited into something beautiful and broken. For parents facing a life-limiting prenatal diagnosis and the loss of their child, every moment of their pregnancy and the time they have with their child in their arms is precious. When their priority is maximizing the quality of that time, their ability and capacity- their agency- to navigate all of life's responsibilities is diminished. It becomes difficult to prioritize work, relationships, bills, and normal challenges when their whole focus is bonding with their child, making gut-wrenching decisions, and planning for life after loss. 

This is where your role is so important. You get to step in and facilitate that bonding and prioritizing of precious time by offering your tangible support for life's responsibilities. As you do this, move beyond statements "let me know if there is anything I can do" or "I am here for you and anything you need," and actively advocate for parents by giving them the agency to ask for and accept help. When you ask those open-ended questions or make generalized offers of support, you inadvertently put the burden on the grieving parents to clearly identify their needs.

Friends and relatives, recognize that carrying a pregnancy to term despite a life-limiting diagnosis is physically, socially, logistically, and emotionally difficult. Very few parents have the capacity to identify their needs, recognize the best person in their support network to meet those needs, and then reconcile with the idea of needing help to meet those needs. 

Friends and relatives, you are the foundation of a parent’s network of support. While parents look to their medical professionals for knowledge and expertise, they lean on you for emotional and tangible support. As the network of support, you have been invited into something beautiful and broken.

In place of open-ended questions or generalized offers of support, offer specific, tangible support like bringing a meal on a specified day, offering to provide childcare to their other children, or helping with errands. There is so much power and permission when you change the conversation from theoretical support to clear, intentional, and specific support. You have built up a parent's sense of agency, because they can discern if it is a need they have, trust that you genuinely mean your offer of support, and feel free to accept your offer. For ideas and more insight into tangibly supporting grieving parents, read our post found here.

If you are a fellow grieving parent, you have likely experienced and identified needs specific to the loss of a pregnancy or infant. Your wisdom and experience is valuable, so reach out to the parents and ask if they need help with coordinating the funeral or cremation, navigating the expenses that come with this experience, specialized support designed to help them process the complex emotions that they will encounter, or any other needs you have identified. 

In addition to providing parents with a sense of agency in regards to tangible needs and support, you have significant impact on parents' emotional agency. Outside of their significant other, you may be a parent's most trusted confidant. When a grieving parent shares their emotions or experiences with you, know that that vulnerability is a gift. Grief shaming is a common thing that parents experience. The world holds many opinions about how grief should look, how long it should take, and even who has the right to grieve at all. Unfortunately, most, if not all, grieving parents have a story of a time they felt shamed for the intensity, display, or duration of their grief following diagnosis, throughout pregnancy, or after the loss of their child.  

Friends and relatives, when a grieving parent entrusts their emotions or experiences with you, handle them care and self-awareness. Your words and how you say them have impact. How you make a parent feel in their most vulnerable moments has the power to build up or tear down their sense of emotional agency. Intentionally hold space for these hard emotions and validate the realities of their experiences. Meet these parents where they are at each step of the process without judgement or expectation. It is okay if communicating sensitively with grieving parents feels intimidating or new to you. Be gentle with yourself, acknowledge the limits of your experience and understanding, and seek insight and resources like our blog on communicating well with grieving parents, which you can find here.

Agency- the ability or capacity a person has to act within a given environment or set of circumstances- is a determining factor in how well parents cope with a life-limiting prenatal diagnosis, process pregnancy continuation, survive the loss of their child, and learn to live life after loss. Parents' sense of agency is shaped and influenced by relationships with medical professionals and their friends and relatives as well as through their own self-perceptions. 

Medical professionals, you are the first and most important player in a parents' grief journey because, as the perceived authority, you have the ability to change how parents feel about themselves, their experience, and the aftermath. Parents, you are your own best advocate because you know yourself, your significant other, and your child best. Trust your instincts, ask questions, and believe in your ability to navigate this process and all that it brings. Friends and relatives, your role is invaluable because you walk alongside parents, provide tangible support and remind them of their strengths, abilities, love, and right to grieve.