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Following a prenatal diagnosis of a life-limiting condition, the decision to carry a pregnancy to term is often accompanied by a range of questions and emotions. The way the diagnosis, pregnancy continuation and pregnancy termination options, and a plan of care are communicated has the power to sway a patient’s decisions and their ability to navigate and grieve their circumstances. In cases of prenatal diagnoses, it is important that both the providers and the patients take into account the emotions, principles, and needs that influence choice. This clear, comprehensive communication of information allows patients to make informed choices at each step of the process.
An informed choice is one that is made intentionally, in keeping with the decision-maker’s philosophy of life, with a full understanding of the options and outcomes, and without outside influence informing that decision. Every patient should have the opportunity and ability to make informed choices from the moment of diagnosis, throughout the entirety of the pregnancy, during labor and delivery, and throughout the transition into life after loss. Informed choice shapes the parents’ experiences, and ultimately, their grieving process.
In order to ensure that all parents are supported and equipped, it is important to know that there are four cornerstones of fully informed choices: non-directive presentation of options, a full understanding of options and outcomes, access to comprehensive and reliable resources, and philosophy of life.
“An informed choice is one that is made intentionally, in keeping with the decision-maker’s philosophy of life, with full understanding of the options and outcomes, and without outside influence informing that decision.”
NON-DIRECTIVE PRESENTATION OF OPTIONS
For parents, the moments that follow the news that their unborn baby has a life-limiting diagnosis are overwhelming, devastating, and incredibly vulnerable. Life, as they know it and were preparing for, has dramatically changed, and it will take time for them to fully process and come to terms with the news they have received. The importance of the conversations that immediately follow the delivery of the diagnosis should not be underestimated, as the words spoken and the tone of the conversation really does have the power to shape this experience for parents. The impact is far-reaching and long-lasting.
When it comes to presenting options, the best approach is a comprehensive and non-directive one. Parents have the right to know every option that is available to them, and they have the right to feel supported in their choice. A non-directive presentation of options entails both clear, compassionate communication and an intentional effort to reduce outside influence based on preference or bias. When parents know that their provider and network of support genuinely care about them and their experiences and are there to support them in their choice, they are better able to hear, process, and understand their circumstances and the information presented to them. This support- especially when given at each step of the process- dramatically reduces the parents’ anxiety, depression, and other mental health aspects while also increasing their ability to cope with all they are navigating.
Ultimately, any decision following the news that an unborn child has a life-limiting condition is entirely up to the parents of that child. While that is a gift because it allows parents to navigate this experience in ways that they can come to terms with, it is also a tremendous amount of pressure and a complicated and complex emotional position to be in. A non-directive presentation of options validates the unique challenges and heartbreak experienced by the parents while also supporting their needs, rights, and decisions at each step of the process.
FULL UNDERSTANDING OF OPTIONS AND OUTCOMES
When presenting options to parents, it is important that the parents have a comprehensive understanding of each option and the outcomes they can expect. A choice cannot be considered fully informed if the decision-maker does not have a full picture of what that choice really entails. The full picture includes the good, the difficult, and the acknowledgment that there will be unknowns and unpredictable elements throughout the process.
Acknowledging the realities of a choice is not a burden or scare tactic or method for promoting one option. Rather, it is about letting the parents come to understand all their options in ways that allow them to make a decision they are able to cope with as they navigate life after loss.
Pregnancy continuation has been shown to lower anxiety, depression, and other mental health complications (Cope, et al), but it is also important to note this process is emotionally nuanced and difficult in its own right. Throughout pregnancy continuation, parents can expect to experience a range of emotions, potentially feel triggered, and even navigate changes and conflicts in relationships.
Yet, these parents can also embrace and celebrate the time they have with their baby, prepare for delivery and memory-making, advocate for themselves and their baby, share their story, and create a legacy in honor of their child. Just because pregnancy continuation is not an easy process, does not mean that it is not a worthwhile experience or an option that should not be presented to parents.
Fully informed choice is not about finding the easiest option, because there is nothing easy about learning the news that a baby has a life-limiting condition. Informed choice is about ensuring that every family has the opportunity, information, tools, and support to make the right decision for their family at each step of the process.
“Fully informed choice is not about finding the easiest option, because there is nothing easy about learning the news that a baby has a life-limiting condition. Informed choice is about ensuring that every family has the opportunity, information, tools, and support to make the right decision for their family at each step of the process.”
ACCESS TO COMPREHENSIVE, RELIABLE RESOURCES
One of the most critical elements of making an informed choice is access to comprehensive, non-directive, and reliable resources. No decision can be considered fully informed if the decision-maker has not had access to resources that validate the difficulty of their experience, offer support throughout the process, and provide a full breadth and depth of information about their choice.
The value of comprehensive, non-directive, and reliable resources cannot be underestimated, and it is the reason why Carrying To Term exists and why we continue to do the work that we do. Our site provides resources to equip, inform, encourage, and support parents in the choice to continue their pregnancy without bias and in alignment with medical practice and standards. We offer a full picture of the nuances of receiving a diagnosis, choosing a pregnancy continuation, preparing for birth and death, and navigating grief and life after loss. We are here to help providers support their patients and to help parents further research their choice and gather the data and tools they need to make the most informed choice possible.
In practice, access to comprehensive, reliable resources looks like parents being provided with written copies of the information presented during diagnosis and the conversations that follow. It looks like being connected with Carrying To Term and referred to specialists like palliative care teams, clinical social workers, and licensed professional counselors. It looks like providing parents with prenatal counseling appointments with their providers to allow parents to ask questions, process the diagnosis, and take an active role in establishing a care plan. All of these resources should be provided to parents before they are ever expected to make a decision that has such a far-reaching, long-lasting, and life-altering impact.
PHILOSOPHY OF LIFE
The most personally impactful, and therefore, an important component of informed choice is philosophy of life. No choice is fully informed if that choice is at odds with the decision-maker’s morals, values, and ultimately, their overall philosophy of life.
A person’s philosophy of life has value simply because it meaningfully impacts, influences, and shapes the way that person lives in this world, navigates their circumstances, and copes with the difficult realities of their life. In cases of life-limiting prenatal diagnoses, a parent’s philosophy of life can include their spiritual beliefs, their emotional well-being, their physical health, and their social support. Each of those elements has value and is a valid consideration when making a decision of this magnitude.
When a parent’s choice feels aligned with their values and life, parents navigate their experience with less anxiety and depression, and ultimately, they transition into life after loss with less complicated grief. Studies have shown that pregnancy continuation allows parents the time to experience, plan for, and begin to grieve their baby, and this process equips them to be better able to integrate their experience and loss into their lives through healthy coping strategies, robust support systems, self-advocacy, and less regret.
The ultimate goal of informed choice is not to remove all the emotions from an emotional experience. The goal is to take circumstances that are broken, devastating, and complicated, and make that experience the least devastating, isolating, and overwhelming as possible. Receiving the news that an unborn child has a life-limiting diagnosis and will die is never going to be an easy or good experience. But it does not have to be as hard of an experience as it has been for many and still is for some. When we collectively support informed choice, we are supporting parents. When a parent’s options are presented in a non-directive manner that fully encapsulates all elements of that choice, those parents are empowered to advocate for themselves, their baby, and their family. When parents are provided with comprehensive and reliable resources, they feel supported and encouraged to make the right decision for their family. When a parent’s philosophy of life is considered and valued, parents are better able to make informed choices, navigate their circumstances, and cope with their experiences. Informed choice is critical, life-altering, and impactful.