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Nurses, your role in caring for families facing a prenatal diagnosis of a life-limiting condition is profound. Families, just like doctors and other medical professionals, turn to you for information, support, and validation.
How you provide care and communicate with these families has a long-lasting and far-reaching impact. When parents feel supported, heard, and understood by their team of medical professionals, it changes the way families find peace in their experience of carrying to term, grief, and loss.
As nurses, you spend so much time with your patients, and as a result, you form deep connections that change your patients and the way you provide care. Every nurse has stories of families that changed his or her experience of nursing, and many families can say the same about the nurses who cared for them. Carrying-to-term families interact with nurses in the offices of their obstetrician, perinatologist, palliative care doctor, or geneticist. They are cared for by nurses in labor and delivery, and they may even have experiences with nurses in the emergency room or neonatal or pediatric intensive care units.
Carrying To Term believes in the value of your work and the important role you play in the lives of the families we serve. You are deeply ingrained in the journey these families face, and as an organization, we want to come alongside you as we enter into the hardest experiences these parents will face. We champion you as advocates and compassionate people, and we encourage you to advocate and have compassion for yourselves, your fellow nurses, and your patients.
ADVOCACY
As nurses, you are advocates. You have been trained to advocate for your patients’ needs, rights, and wishes. You have learned to speak up in conversations with doctors and other medical professionals. You have learned every detail of your patients’ cases and even many details of their personal lives. You are often the liaison, mediator, and even translator between doctor and patient.
Yet, you are not just an advocate for your patients. You also are an advocate for yourself and your fellow nurses. We encourage you to speak up when you see gaps in care and fight for what you believe is needed to better serve the grieving parents you care for. Communicate with the doctors and hospital systems you work with about the resources you and your patients need. We encourage you to take part in the bereavement program in your hospital or work to implement one if it does not already exist. We encourage you to advocate for training among your fellow nurses, ensuring that the responsibility of caring for bereaved families isn’t solely shouldered by one or two nurses within your department. Advocate for your own needs, professionally and personally, by communicating them with your co-workers, superiors, and hospital systems.
“The way you provide care and how you communicate with these families has long-lasting and far-reaching impact. When parents feel supported, heard, and understood by their team of medical professionals, it changes the way families find peace in their experience of carrying to term, grief, and loss.”
When you advocate for your own emotional health, you are paving the way for parents to feel supported, heard, and understood in their grief. You advocate for your patient’s own emotional well-being when you let down the guard of professional distance. There is nothing wrong with expressing emotion in front of your patient when you are not doing so to make the situation about you or your own experiences. More than anything, parents want humanity and validation from the professionals caring for them. It can be incredibly painful and disconcerting when your nurses seem entirely unaffected by what is happening to you and your child.
When you let your patient know how sorry you are for what is happening to them, you give them permission to express their devastation. You are validating parents when they need it the most. Never underestimate the power your permission and your emotions can have in the lives of those you care for. We can imagine that not every nurse expresses his or her emotions in the same way. There is no expectation that you sit with your patient and cry. If that happens, that is good, right, and valid. Yet, if you are more the stoic, silent type, that is good, right, and valid, too. Just communicate that with your patients so that they do not mistake your silence for indifference. Your emotions have a place in patient care and professional interactions. Advocate for yourself, your patients, and your co-workers by communicating your needs, fighting for change, and supporting your fellow nurses.
COMPASSION
We can imagine that you have been a source of comfort for your patients countless times. You have listened as they shared their fears and grief. You have patiently answered their many and sometimes repeated questions, withholding judgment or expectation. You have helped them prepare for their carrying-to-term journey, and you have advocated for their wishes and birth plan. You have been in the room when men and women became parents only to hand their baby over to you with agony. You have had the difficult task of walking grieving parents through discharge instructions and aftercare, knowing that you were sending them home to unbearable sorrow and silence. You might have even had the impossible task of holding a parent’s hand as they withdrew life-support in the neonatal or pediatric intensive care units.
You left yourself at the door and entered into all of these experiences with the sole focus of providing support, comfort, and guidance to your patients. For that, we are grateful.
Sarah Garvey, a mother who lost triplets Bridget, Vivian and Liam shares this;
“Some of the most profound experiences I had during my pregnancy, delivery, and loss were with nurses. I will never forget the way a nurse, who was a complete stranger, held me as I received spinal anesthesia before emergency surgery.
I vividly remember the relief that flooded my body when I saw that same nurse’s face when I went into preterm labor with my triplets. Seeing her there on the worst day of my life brought me some comfort because I knew she cared and would grieve with me. After saying goodbye to my babies, that same nurse came to give me a hug and just cry with me. She handed me a letter that I still have to this day.
As I watched her leave my hospital room with tears in her eyes, I could not help but wonder how she would care for herself after such an emotionally difficult day. I thought of the nurses who cared for me and my babies so well during my delivery. I thought of the nurse who had the impossible job of gently taking three precious babies away from their wailing mother, knowing she would never place them back in my arms.
These men and women showed such compassion to me, and I did not have the words to express how much compassion I had for them and how much compassion I hoped they would have for themselves. Today, years later, I have the words.
“The work that you do is sometimes impossible. You enter in without hesitation and offer compassion and guidance to devastated parents. It is valid and reasonable when, not if, that work takes a toll on your emotions. I encourage you to show yourself the same compassion you provide to your patients.”
The work that you do is sometimes impossible. You enter without hesitation and offer compassion and guidance to devastated parents. It is valid and reasonable when, not if, that work takes a toll on your emotions. We encourage you to show yourself the same compassion you provide to your patients. Self-care is not weakness. It is important to take the time to feel your emotions and process through what you experienced.
Hold compassion for yourself when you cannot find words that feel perfect or capable of comforting grieving parents. Embrace compassion for yourself when holding a precious baby who has passed away. It feels heavy and devastating. Seek compassion for your fellow nurses when you see them step out of a patient room and fall apart in the hallway. Practice compassion when your fellow nurses need to debrief, process, or simply sit in silence with you.
The work you do is vital and life-changing for families facing a prenatal diagnosis of a life-limiting condition. These families need nurses like you, so please take the time to care well for yourselves. You cannot educate, support, or care well for families if you burn out. You matter to these families, and you matter to us at Carrying To Term. We see you, and we want to care well for you.
Nurses, thank you for entering without hesitation. Thank you for the work that you do.