2024 Fetal Care Center Frontiers in Fetal Neurology Day 1 - Dr. DonnaMaria Cortezzo

Um, next up, our final speaker of today is Doctor Donna Maria Cortezo. She is, um, A neonatologist who we had the pleasure of working with here at Cincinnati Children's for several years before she recently moved to Connecticut Children's. She also has a co-appointment in the Division of Pain and Palliative Care there. Thanks, Doctor Cortezo. Thank you for inviting me to be really part of this wonderful multidisciplinary webinar today. Um, I will be giving a very brief introduction on the role of palliative care in fetal counseling. I have nothing to disclose. Today, I really hope to talk about what neonatal perinatal palliative care is, explain the importance of neonatal perinatal palliative care for families with, who are facing a complex or uncertain fetal diagnosis, and really talk about navigating goals of care for a fetus or a neonatal. This quote from Brian Carter really I think gets at the heart of what neonatal perinatal palliative care is. It really has grown out of the field of hospice and palliative medicine with the goal of caring for and supporting families with a concerning life-limiting or life-threatening fetal or neonatal diagnosis. I think it's important for us as providers to remember that when such a diagnosis is made, that pregnancy and the birth narrative has really been broken for that family. The goal is in the midst of this to offer comprehensive interdisciplinary care during the remainder of the pregnancy and afterwards, help parents really begin to process the information, consider the potential care paths, and really find ways in the midst of all that to parent their baby. For each family, this care is really unique and is continued irrespective of the disease trajectory, treatments options that are chosen by the family, or the transition and care settings. Many only associate palliative care with hospice. While it's an important component of the care we provide, it's a small portion of that comprehensive total care. My goal is not to get a DNR or convince the family to pursue a comfort measures approach to care. My goal is really to provide total care and supports the entire family. The care team can assist in communication, support families in complex medical decision making. Promote value-driven medical decisions and ensure that there's continuity in care, irrespective, sorry, I think there's issues with my camera. Is that better? Recognizing that the family is experiencing loss at the time of diagnosis, bereavement and grief support are offered early from really the beginning through the entire illness course and after death. At any one point, there is really a balance between curing, healing, and bereavement. The focus is always on quality of life and comfort irrespective of those medical management goals. In addition to helping the family understand. The diagnosis and medical management, we provide opportunities for birth planning and memory making. Again, end of life care is one component of that total care. Why are we discussing this today? As providers, our goal is typically to save lives, and many of our patients have what families and providers would consider good outcomes. While this is true, each year in the United States, there are over 1 million fetal deaths, 26,000 stillbirths, and 19,000 neonatal deaths. 100,000 individuals have a pregnancy complicated by a fetus with severe abnormalities or a complex diagnosis. And 20-40% of them continue the pregnancy. Providers who care for pregnant individuals or neonates will be tasked with caring for a patient with a concerning, life-limiting, life-threatening, or complex chronic diagnosis multiple times throughout their career. Which diagnoses are we talking about? I really like to think of it as diagnoses or situations where the chance of survival without significant morbidity that could impact quality of life is low. This slide is not meant to be an exhaustive list of diagnoses. It's quite broad and includes the peri-viable patient, multiple genetic diagnoses, and serious diagnoses involving various organ systems. For many of these diagnoses, there's a range of prognosis, treatment options, and care paths for the families to consider. Depicted on this slide, advances in prenatal screening and diagnostic technologies have really allowed for the earlier and more frequent identification of these diagnoses. Fetal echo or MRI can really help to characterize anatomic differences. Expanded genetic testing, as we heard, may allow for greater prognostic information. With this really, an increased number of families are seeking support, anticipatory guidance, and counseling after a complex fetal diagnosis is made. While learning this diagnosis early allows families time to make informed decisions and plan for the remainder of their pregnancy, birth, and neonatal care, it can also lead to more options and uncertainty as to the prognosis and really the most appropriate care plan for that family. This again is in the context of the family processing this information while they're grieving. For families continuing the pregnancy, it's not unusual for them to really describe a duality in their parental experience. They're preparing to welcome a new life while simultaneously grieving the loss of the baby they were expecting. The involvement of the palliative care team or the paradigms of palliative care really allows for opportunities to explore goals of care and plan for comprehensive value-driven medical care. It's important for us to remember that many fetal anomalies are not identified until the 18 to 22 week anatomy scan, and about 25% are not identified until the third trimester. In the midst of grieving, the family also often has a limited window to gather more information about what the anomaly means for their pregnancy and make decisions about abortion, fetal interventions when appropriate, or the care path that really best aligns with their views. Mapped out on the slide, there are multiple, they're meeting multiple sub-specialists in green to discuss the prognosis and care paths in blue at a time when they really need to have trust in their care team. The obstetrician who they may have developed a strong relationship with may or may not continue to follow them during the remainder of this pregnancy. When the family continues the pregnancy, there will be multiple visits with different providers in various hospital systems. If they elect for comfort measures, it's important that everyone is aware of their goals and what that care will look like. When the family elects for invasive interventions, we will be providing care for medically complex patients when we engage in ongoing conversations about the goals of care in purple and the treatment paths as they may shift over time. With the multiple complications, challenges, and invasive interventions, there'll be many decision points. Really having a consistent care team, the palliative care team who over time really gets to know the family and their journey, facilitates trust, open conversations, and a mutual understanding as they are navigating these complex decisions. When counseling a family, the goal is not simply to deliver information or direct decisions and care. The intent is really to engage in a dialogue that promotes autonomy and informed decision making. The focus should be on the patient, their values, their goals, their unique journey. Knowing this will make it easier for us to provide information that the patient can derive meaning from and make truly informed decisions with. What we're really talking about is a shared decision-making approach to care. It's our job as providers to engage in a partnership to better understand how in the context of their specific situation and goals or values, the medical information is important. Based on that, we can arrive at decisions about the most appropriate care plan that builds trust, minimizes burden, promotes the best patient outcomes, and incorporates parental preferences. Parents rely on providers to really encourage them to express their hopes, fears, and goals in the midst of the uncertainty that may exist. Only then can providers and parents collaborate to make decisions and plans balancing autonomy and parental authority with medical recommendations and prognosis. I think it's important to remember when navigating goals of care, there are many factors that influence the decisions that are made. These factors include personal attributes such as age, medical history, gestation at diagnosis, the context of the pregnancy, if it was planned or they had a long journey to become pregnant, past experiences with the medical field, and socioeconomic status. Personal views, including religious beliefs, cultural values, tolerance of uncertainty, views of quality of life, and beliefs about the various care options play a significant role. There's also the information itself and how it's conveyed to families, the severity of the anomalies, the expected prognosis, the treatment options available, and the influences of family and friends. And then there are the structural influences, including whether an individual has access to all the options for various reasons. As providers, we need to remember that decisions are made based on multiple important factors beyond the medical facts or information that we're conveying to the families during um our meetings. While it's not the sole factor, provider prognostication contributes significantly to parental decisions and goals of care. Prognosticating, especially before birth, is challenging. In reality, there's usually a spectrum of outcomes. Providers, though, tend to Sorry. Providers though tend to use terms such as lethal and perpetrate the diagnosis for various um diagnoses as grim instead of really articulating the spectrum. Families, however, really want to know that spectrum of possible outcomes and how those different types of care paths can impact them. Hearing the range allows them to understand what might be possible and really to prepare. Quality of life is a very personal determination and our view should not impact how we convey the information. Instead, we should really take time to understand what a family views as an acceptable quality of life and discuss the likelihood of their child achieving that. Families do not want personal opinions or bias to impact the information they are receiving. If they are told that their baby will die immediately and they read about babies living, or if they opt for interventions and the prognosis is very different than they were told, they can become confused and at times angry. It can really damage the therapeutic relationship and leave them feeling guilty for the decisions they made. We're really unsure of how to make the best decisions moving forward. A key component to the shared decision-making process in navigating goals of care is birth planning. A perinatal palliative care birth plan, the culmination of the birth planning process, is the document created to communicate the family's wishes with the multidisciplinary medical team. It expands beyond preferences for logistics surrounding delivery to include value-driven requests to care. In addition, it gives families a sense of control during a challenging time and an opportunity to really honor their child's life. The therapeutic value is tremendous. It gives them a rare opportunity to actively parent and advocate for the care they desire. Birth planning grants families a platform to voice their experiences and requests to all providers involved in any aspect of the obstetric and neonatal care. The content of the birth plan helps to frame and guide conversations. Important components are listed on the slide. They include information for the care team, wishes for labor and delivery, wishes for the medical care of the baby, wishes for memory making and support, and plans for if the baby survives or dies. This is a time for us as a team to get creative and help the family, irrespective of their medical goals, explore ways to celebrate their baby and the time they have with them. It includes details such as desires for resuscitation, location of care, key sakes, and when appropriate, family-centered neonatal and end of life care. The medical information helps the team understand what the family has been told to expect as far as diagnosis, prognosis, morbidity, mortality, and anticipated medical challenges. It's important for us to expand on any uncertainty and things that are important to the family if the goals are either conflicting or cannot be met. With this plan, the obstetricians, nurses, pediatricians, neonatologists really know the goals prior to delivery and can help to discuss a plan that will achieve as many of those goals as possible. Palliative care has an important role in fetal counseling. mapped out on this table, it allows for continual support, consistency, and counseling throughout all phases in care. The continuity allows for seamless transitions in care and really a unique opportunity to walk the journey with the family. Immediately after diagnosis, as I mentioned several times, families are grieving. They often need time to process the information and may need more information before making decisions. As the pregnancy continues, they are beginning to incorporate the medical information into their decision-making framework. Our job is to ensure all providers are aware of the information, where they are in their journey, and their goals so that seamless care can be provided. It's also important that we help families understand what the medical information means in the context of their views and values. Remember that when it comes to a fetus or baby, parents may not have thought about quality of life or advanced care planning for themselves, let alone their baby. It's also important that we help them celebrate moments during the pregnancy and make beautiful memories. Often, even after delivery, families need more information to determine the most appropriate care path for their baby. We should provide them with clear information and support shared decision-making approach to care. This includes facilitating comprehensive conversations, engaging and navigating how the medical information is important in the context of the decisions that need to be made, or reshaping expectations for the future and understanding how they are making decisions. The palliative care team is a consistent presence and can help to anticipate decision points, ensure the family has the information they need, and really to help team members and families realize that goals may evolve and change over time. We support families from the time of diagnosis through the remainder of pregnancy, neonatal course, and beyond. When a family is faced with a pregnancy with a complex or potentially life-living diagnosis, perinatal palliative care providers really are tasked with supporting the family and helping them navigate goals of care often in the face of uncertainty. This can be incredibly challenging, fraught with emotions, and incredibly rewarding. When we really invest ourselves in the journey with the family, we can support them through a difficult time and ensure that the entire care team knows their wishes. By taking time to really learn about them, how they make decisions, and what is important to them, the team will be prepared to help them navigate those medical decisions. Our job is to better understand irrespective of our personal opinions, their views of quality of life, and to help them develop a plan that supports those wishes and views. The difficult decisions that are being made, the care that is being provided, and the experience the family has impacts not only their time with their baby, but the time afterwards. We really have the ability to allow parents to parent, make beautiful memories during some of the most difficult times. It's a true honor and privilege that they let us end during such sacred moments and to be part of their journey. Thank you.