Special thanks to Carrying To Term for their partnership in providing this resource.
Parents, you have received the news that your unborn baby has a life-limiting diagnosis. Now, you are faced with processing new information, weighing your options, making complicated decisions, and navigating an increased amount of prenatal appointments.
You now likely require care from more providers than just your obstetrician. You may have been referred to specialists, nurse navigators, social workers, and palliative care experts. Everything you thought you knew about prenatal care and pregnancy has changed, and it is perfectly normal and valid if you feel overwhelmed by it all.
To help you navigate the process of pregnancy continuation and prenatal care, we have created this helpful guide to preparing for appointments following diagnosis.
GATHER YOUR CARE TEAM
The first step to preparing for prenatal appointments following diagnosis is to understand and gather your care team. As a result of the diagnosis, you now require care, support, and insight from more than just your obstetrician. There are many medical professionals who offer unique perspectives and models of care for parents who receive a life-limiting diagnosis and choose pregnancy continuation. Having a multidisciplinary care team is an important part of prenatal care during your pregnancy. Each provider will help you create a comprehensive and individualized care plan to ensure that you, your baby, and your family receive the best and most supportive care.
Depending on the diagnosis, you may find yourself needing support from:
- a care coordinator
- a perinatal social worker
- a perinatal hospice and palliative care group
- a pediatrician
- a perinatologist or maternal-fetal medicine specialist
- a pediatric geneticist
- a pediatric specialist like a neonatologist, cardiologist, or neurologist
- a chaplain
- a doula
- a licensed professional counselor or clinical social worker
Before meeting with your care team of providers, it is important that you understand who each provider is and what they bring to your care. For more information about the potential members of your care team, please read our guide to gathering your care team found here.
“Having a multidisciplinary care team is an important part of prenatal care during your pregnancy. Each provider will help you create a comprehensive and individualized care plan to ensure that you, your baby, and your family receive the best and most supportive care.”
SCHEDULE YOUR APPOINTMENTS WISELY
Immediately following your diagnosis, you will likely be asked or recommended to schedule a follow-up appointment to discuss the diagnosis and next steps as well as an appointment with a specialist like a perinatologist or maternal-fetal medicine specialist. These appointments are invaluable, as they provide you the opportunity to ask questions, process the diagnosis, and formulate a plan for moving forward.
While it is important to schedule these appointments as soon as possible following diagnosis, be sure to schedule these appointments in such a way that provides you and your significant other some time to process the emotional realities of receiving such a diagnosis. You may find that you need time to explore and process your emotions, review the information provided to you, do some independent research, weigh your options, and consider your decisions before your next set of appointments. You may find that having that time to process allows you to take full advantage of the time you will have with your doctors and specialists during your appointments.
As you begin to schedule your appointments, be sure not to overload yourself by scheduling too many appointments within a single day or week. While you may have to navigate availability and busy schedules, be sure you think through what is best for your own emotional and mental health. If having too many appointments in a single day or week is too much for you, try to space out the appointments in a way that provides you time to rest, decompress, process, and recover between appointments.
Alternatively, you may find that you prefer to knock out as many appointments as possible in a single day or week. That is okay, too. The important thing is to know yourself and your needs.
Additionally, if you think or know that being in a crowded doctor’s office or waiting in a waiting room with other pregnant people might be triggering for you, talk to your doctor’s offices about scheduling your appointments during the lowest volume times or when there might be the option for your wait directly in an exam room. Communicate your needs to the front desk staff and see what they can do to accommodate you. This may not always be an option, but all you can do is ask.
COMPLETE PAPERWORK AT HOME
One of the ways to cut down on the time spent in a doctor’s office waiting room and provide you with the time to process your emotions is to complete your paperwork ahead of time. Many doctor’s offices now offer the option to complete paperwork online. If that option is not available to you, many doctor’s offices will either email you the paperwork ahead of time or allow you to come by (or send someone on your behalf) and pick up the paperwork prior to your appointment.
When possible, complete your paperwork ahead of time, so that you can take your time working through potentially hard and emotionally-triggering questions like pregnancy history, prior medical or family history, or your reasons for this visit.
If you are unable to obtain and complete your paperwork in advance, and you know that pregnancy history, reasons for your visit, or any other questions will be difficult for you, consider writing or typing out your answers to those questions ahead of time. If you have a complicated pregnancy history, list out important experiences and dates in brief bullet points on a notecard or half-sheet of paper and take it with you to your appointment. You can then write “see attached” under the pregnancy history question and give your prewritten paper to the staff when you turn in your paperwork.
Completing your paperwork at home is not a necessary part of preparing for prenatal appointments. It simply affords you the opportunity to shorten your time in a doctor’s waiting room, consider and think through all the questions, and navigate any emotions that may arise while completing the paperwork for your appointment.
CREATE A LIST OF QUESTIONS AND CONCERNS
After you have scheduled your appointments and completed any paperwork in advance, it is time to prepare for the actual appointment. One of the best ways you can prepare for appointments and make the most of the time you will have with your provider is to create a list of questions and concerns that you have and want to ask or discuss with your provider.
Start by listing out every single question and concern you have, regardless of whether or not this particular provider is the right person to ask. Having a running list of questions and concerns will help you process and gather information throughout this process. Once you have your broad list of questions and concerns, start deciding which questions and concerns are best suited to your upcoming appointment. From your original list, create a list of questions and concerns specific to the doctor or provider you are about to meet with.
Once you have your provider or appointment specific list of questions and concerns, decide which 3-5 questions are the highest priority questions on your list. Do the same with your concerns. You will have limited time with your doctor, and you will likely be unable to get answers to all of your questions. By prioritizing your questions and concerns, you can ensure that you get the most pressing and important information from this appointment.
You may find that each appointment leaves you with more questions than before. That is okay and too be expected. This process can be complex and complicated, so it makes sense that you would have on-going and ever-evolving questions. Following each appointment, as new questions arise, add them to your running list of questions.
As you get questions answered, write the answers down underneath the question. As you research and find answers to your questions on your own, write those answers down underneath the questions. When you do this, you are creating a valuable resource for yourself throughout this process. This running list of questions and answers allows you to refer back to the information you have gathered, the answers you have found on your own, and the questions you still need answers to.
Knowing what questions to ask throughout this process can be challenging. When you have been given such an overwhelming and life-changing amount of information, it can be hard to know where to start, what questions you have, and even what questions you should be asking. To help you prepare for your appointments and create your own list of questions, Carrying To Term has created a list of questions which you can find here.
“You will have limited time with your doctor, and you will likely be unable to get answers to all of your questions. By prioritizing your questions and concerns, you can ensure that you get the most pressing and important information from this appointment.”
PLAN TO UPDATE YOUR PROVIDER
In addition to preparing for your appointment by creating a list of questions and concerns, be prepared to update your doctor about anything that has occurred between appointments. Your doctor will check in with you on your physical health, any concerns or changes in symptoms that you might have experienced. Your doctor will likely check in on your emotional well-being to assess how you are processing, navigating, and coping with everything that is happening. Your doctor may also ask about your social support systems and any changes that have occurred or additional support you may need.
If you have had any appointments with other doctors or specialists, tours of the hospital or neonatal intensive care unit, or any consults with a palliative care team, social workers, or nurse navigators, prepare to update your doctor on any important aspects of those appointments, tours, or consults. If the other offices have not already done so for you, plan to bring or send any relevant records from those appointments in advance to the appointment you are preparing for. This allows your doctor or care provider to ensure that they are fully informed about your care and aligned with the other members of your care team.
The best way to prepare yourself to update your doctors and providers throughout the process of pregnancy continuation is to keep a journal. Write down any symptoms, changes, concerns, notes from appointments, or any other information relevant to your pregnancy and your physical, emotional, and social health. Bring this notebook with you to appointments as a reference and a place to take additional notes.
As you have been preparing for your appointments, you have been writing down questions, concerns, and any information that you need to update your doctor on. Taking notes is an important part of this process as it helps you think through elements of your experience. These notes serve as a record of your experience and any details that arise throughout the process.
In addition to taking notes in preparation for your appointments, you should plan to take notes during your appointments. When your doctor provides answers to your questions or insight on your concerns, write down the key information. Appointments can be a whirlwind experience, complete with more overwhelming information. You likely will not remember everything said in each appointment, so having notes can be critical to remembering details and processing them later.
If you find yourself unable to listen to and engage with your doctor while also taking notes, that is okay. Prioritize listening and engaging with your doctor. Before the appointment ends, ask your doctor for a quick verbal summary of the discussion, and take notes then. If you have taken notes throughout the appointment, this is a great time to be sure your notes align with the summary of information and confirm that you have written down everything you need to remember. Before leaving your appointment, be sure to also write down any follow-up instructions your provider gives you, and ask for written copies of any instructions or orders for labs or other tests. These notes will help you remember all of your follow-up instructions and plan for any further testing, labs, or referrals that might be needed.
CONSIDER BRINGING A SUPPORT PERSON
As you think through preparing for your appointments, consider bringing a support person with you to each appointment. Your support person can be anyone you choose: your significant other, a parent, a family member, a friend, or any other member of your network of support.
Having a support person present at appointments can help you retain and process information better. Your support person serves as a second set of ears to listen to information and help you remember all that was discussed. Your support person can also help you by remembering your questions and by taking notes throughout the appointment. They can also be there for you after the appointment to help you process, fill in your notes, and offer any emotional support you may need.
Your support person can be the same person or a different person for each appointment. That is entirely up to you. You do not have to navigate these experiences and appointments alone, and there truly is benefit in having someone present with you at each appointment.
“Having a support person present at appointments can help you retain and process information better. Your support person serves as a second set of ears to listen to information and help you remember all that was discussed. Your support person can also help you by remembering your questions and by taking notes throughout the appointment. They can also be there for you after the appointment to help you process, fill in your notes, and offer any emotional support you may need.”
As you prepare for your appointments, it is important to recognize that each appointment comes with limitations. Your appointments and time with the provider are likely never going to feel like enough time or as comprehensive as you might like the information to be.
Doctors and providers face time constraints, heavy caseloads, stresses, and other commitments and responsibilities like being on call for deliveries or emergency surgeries. It is important to set your expectations and remember that your doctor is doing the best they can to provide you with the best, most supportive, and comprehensive care. Be mindful of their time by preparing in advance, being specific in your information, and recognizing limitations. While it is important to be mindful of your doctor or provider’s limitations, it is also important to advocate for yourself, your baby, and your needs at each appointment.
If you know that you will need extra time with your doctor or provider during a specific upcoming appointment, ask the front desk staff if they would be able to schedule a longer appointment time for you. If you find yourself needing more support in the form of social workers, counselors, nurse navigators, or palliative care, speak up and ask for those referrals.
If you were unable to get all your questions answered, concerns addressed, or you feel like you have more questions now than before your appointment, advocate for yourself by asking your provider if they have a patient portal through which you can communicate with them. You could also ask if the provider might be willing to provide you with an email address to send questions or concerns in between appointments. If your provider does not offer either a patient portal or an alternative way to get in contact between appointments, know that you can always call the office when concerns or pressing questions arise and speak with a nurse or other provider.
Finally, if you feel that your doctor is too busy, does not provide you with enough time to ask questions or discuss concerns, or just that you do not click well, you have the right to find a new doctor. Your care team is your care team. You get to advocate for yourself by creating a care team of providers that you feel comfortable with and supported by. Ask your primary care provider for a new referral or ask your specialist for a recommendation for a new primary care provider. Not every doctor or provider will be a good fit for you in this process. It is okay to change providers until you find the right ones.
The final part of preparing for appointments is recognizing your need for self-care. This process of preparing for appointments can be draining. The appointments themselves can be draining. When you find yourself feeling emotionally or physically drained, take some time to care for yourself.
Self-care comes in many forms and looks different for every person. You may find that you need to take a mental break from preparing for an appointment or after attending an appointment by reading, watching a movie or TV show, or listening to music. You may find that you feel physically exhausted from this process, and you need to practice physical self-care by taking a nap, enjoying a relaxing bath, or feeding your body a nourishing meal. Self-care can also look like going for a walk, reaching out to a trusted friend or family member to process, going to counseling, attending a support group, journaling, attending your faith’s church or a faith-based event or group, or taking some time to be alone. For more specific examples of emotional, physical, spiritual, and social self-care, please read our post found here.
The process of preparing for and attending so many prenatal appointments following a diagnosis of a life-limiting condition is challenging, overwhelming, and at times, exhausting. The best thing you can do for yourself is to recognize the realities of this process, honor your feelings, process new information, and navigate this experience however you need to. There are no right answers here. Only you will know what you need to do to feel prepared for each appointment. We simply recommend that you consider preparing for your appointments by gathering your care team, scheduling your appointments wisely, completing your paperwork at home, creating a list of questions and concerns, planning to update your provider, taking notes, bringing a support person, recognizing limitations, and practicing self-care.
Originally posted on: December 10, 2018