Discussing Terminal Diagnoses in Children

Dr. Scott Borinstein, MD/PhD is a Pediatric Hematology-Oncology physician at the Children’s Hospital of Vanderbilt University Medical Center. Through interviewing and spending time with him in his clinic, it is evident Dr. Borinstein has (over time) crafted his art and skill of seemingly insurmountable conversations with young patients and their families. Through his specialty, he is in a unique position to develop in-depth, lengthy relationships with patients and their families through the course of cancer treatments. Rather than one long, drawn out conversation about death and dying, he notes the progression of multiple conversations towards a terminal diagnosis talk occur in small pieces as disease proceeds despite treatment. As a resident or medical student, you may not necessarily have the privilege of as established of relationships as Dr. Borinstein with his patients, so he’s offered advice on the most important components of his terminal diagnosis discussions.

Trust and Vulnerability

The first step when entering the room of any patient is establishing trust, especially when discussing a terminal diagnosis in a child. Dr. Borinstein was careful in describing what happens when he first enters the room – first assessing family dynamics and emotion, but most importantly looking for a chair, stool, couch, or even the ground in order to be just below the level of the patient and the family. Not to the point of looking up to them, but enough to show he is exposed and in a vulnerable position as body language is equally as important as the words used. This may sound like common sense, but towering above a family with your back closest to the door may be a defense mechanism for you, but will ensure your words fall on deaf ears.

Confidence and Honesty

Do not say “you COULD” or “you MAY” when discussing prognosis – this is especially important in terminal cancer diagnosis. Dr. Borinstein describes that a lot of Oncologists are afraid to tell patients that they are going to die of cancer because maybe they will have a remarkable response to some salvage chemotherapy, another operation, more radiation, or a radical clinical trial. Families will hang on to the “could” or “may”, which leaves the door open and they will ignore the big picture, often at the expense of meaningful conversations in the time left with their child.

Delivering the News

When explaining to your patient, a child, what is happening and what will happen, Dr. Borinstein is succinct in his process,

I get down on their level, look them in the eyes, and tell them the truth. They need to be open to the conversation, as do the parents. The parents need to be comfortable with this discussion first (at least in young kids under 15 or so they know what I am going to say). I keep it simple and very, very honest. Usually, they know me pretty well and hopefully we have developed trust before we have this discussion.

Remember, your role in this discussion is to give families concrete information in a simple form they can understand with as much compassion and empathy as possible. Yes, you will comfort them, offer support, and answer questions, but also don’t disregard the tremendous help Child Life and Social Workers can be with resources for parents, patients, and their families.

At a later time, when the family has had time to process the weight of their child’s terminal diagnosis and prognosis, Dr. Borinstein addresses a POST form with families. He says how in these circumstances of advancing disease with a terminal diagnosis that aggressive therapies and full-code are not an option he presents to families due to the trauma to the patient and family, and instead focuses on a transition of goals of care from curative to comfort and symptom management.

Before you enter the room to share these vulnerable and often devastating moments with families, Dr. Borinstein encourages you to

BE PRESENT. Be Honest. Get down on their level. Use small words. Be concrete – don’t hide behind medical jargon. Show your heart and feelings. Tell them you are sorry. Tell them this isn’t fair. Don’t run out after talking. Take long pauses in the conversation (30 seconds, one minute, sometimes longer) to allow the family to talk, if they want to. Speak from the heart, but with the conviction of a professional.

May your words be kind, gestures gentle, and compassion at the peak of your emotional capacity as a human when talking with families in these moments.