PROVIDING PROFESSIONAL CARE TO A FAMILY FACING A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION IS AN ESSENTIAL ROLE. YOU HAVE THE PRIVILEGE, YET DIFFICULT RESPONSIBILITY, OF WALKING WITH FAMILIES THROUGH THE WORST EXPERIENCES OF THEIR LIVES.
There are many aspects of this care that may feel challenging and emotionally difficult, and you may find yourself struggling to know how to communicate well with these parents at different points in their journey.
It can be difficult to know the line between professional distance and feeling personally affected, and the fact that that line may look different on a case-by-case basis does not help. Since we believe in the powerful impact of the work you do for these families, we want you to feel equipped and capable of communicating well with grieving parents.
There are not special words or a set language that you have to learn in order to communicate well. You do not have to say something profound to speak into what a family is experiencing. Sincerity speaks volumes. Simple words spoken from a sincere heart is the foundation for communicating well with grieving parents.
“You do not have to say something profound to speak into what a family is experiencing. Sincerity speaks volumes.”
Your tone is far more important than choosing the right words. Empathy, compassion, and presence speak louder than the most well-spoken, yet detached words ever could. Your patients and clients are not looking for you to know the perfect words or have all the answers, they just want to know that you are in the fight with them. They want to know that you are present in the journey and care about what is happening to them.
Grieving parents want to be seen and heard from the moment of diagnosis. Speaking from my own personal experience, when our doctors presented bad news about my pregnancy, they did not start with medical research or statistics. They laid out what was happening in clear, easy to understand language that allowed us time to process what they were saying. I asked for the specific medical terminology, but I appreciated that they spoke to us as parents and not as a case to be handled.
After delivering the news and talking through it with us, our doctors continued to reassure us that they were on our team, and that they would advocate for us. They would honor our decisions and fight for what we wanted.
At each appointment following the news, our doctors checked in on our emotional health and how we were coping. They offered a calm and comforting presence as they updated us on the status of my pregnancy. As we approached periviability, our doctors walked us through complex and emotionally challenging decisions. They always respected our wishes and supported us in our choices.
When I went into labor with my triplets before reaching viability, I watched as our doctors rallied around us. I have never been so moved by another person’s response to my trauma. I share the lasting effect that had on me because I know that, as professionals, you are trained to put your emotions aside. I acknowledge that professional distance has merit when you are explaining to a family their options, next steps, and the experiences they will face. That professional distance is meant to keep you from being directive or letting your personal preferences influence your patients.
“Speaking from personal experience, some of the most powerful moments during my labor and delivery were when our care team shared their humanity with us.”
However, it is important to know that it is okay to be human and show that you are affected. Professional distance is not meant to make you cold. It does not mean that you cannot be sad with your patient. It is okay if you find yourself deeply affected as you give your patients the news about the life-limiting condition or as you deliver your patient’s baby or babies knowing what is coming.
Speaking from personal experience, some of the most powerful moments during my labor and delivery were when our care team shared their humanity with us.They were not just doctors or nurses in those moments. They were people who were affected by what was happening to us. People who wished the outcome had been different. I watched as my doctor cried in the delivery room as she handed me my babies. My favorite nurse brought a note to me in recovery because she could not find the words to express how heartbroken she was for us. Our specialist shared wisdom learned from his own experience in a way that still comforts me years later.
These human interactions with our doctors and nurses are the very reasons why we continued our care with them during pregnancy after loss. There was a comfort and confidence in the fact that they were able to meet us in our grief and empathize with what we had been through. There was not a callous disregard for our loss or our continued grief. They met us with empathy and compassion. They did not feel as though they had the perfect words, but in those moments, their words were everything to us. Their words showed us that we were not alone. They put themselves in our shoes and offered what they would have wanted if it had been them: human interaction, tenderness, and comfort.
In those moments, it was not about the specific words. It was about the sincerity with which they were spoken. Our doctors and nurses left their personal stresses, opinions, and judgments at the door and entered into our experience. They put us first. We were grieving parents before we were patients. There were moments when we were not doctor and patient, but we were human beings feeling the effects of a heartbreaking tragedy.
Every case will not look like my experience, and that is okay. I share it with you to highlight the powerful effect your communication with grieving parents can have. Simply put, empathy, compassion, and presence are the most important aspects of communicating. Put yourself in their shoes, and approach these families in the way you would want it approached if it were you. Explain what is happening to them in clear, easy to understand language because it can be hard to process this kind of information. Remind the parents that you are there to support them, and that this experience is about them and what they want.
We acknowledge that providing this level of care to families facing prenatal diagnoses of life-limiting conditions is incredibly difficult. We know that it can take a toll on you emotionally, so we want to support you in taking care of yourself. In order to provide this level of care consistently and without feeling emotionally depleted, it is important to cultivate a practice of self-care. I have written a post about the importance and practice of self-care for you as a professional, and you can find it here.
“Put yourself in their shoes, and approach these families in the way you would want it approached if it were you.”
The work that you do is vital to the well-being of parents facing the loss of their baby or babies to a life-limiting condition. To these families, there is no more important work. How you care for them has the power to change how equipped, empowered, and supported they feel going into the process of carrying to term. Your care provides families with the support they need to plan for the birth experience they want, the quality of time they get with their baby or babies, and the transition into life after loss. Therefore, we see such value in ensuring that you feel equipped and confident in your ability to provide a high standard of care, communicate well with your patients, and take care of your own well-being.