BY BLYTH LORD

Today, I presented Courageous Parents Network at Compassionate Care Rounds at Massachusetts General Hospital for Children. The Rounds are a product of the Jordan S. Ruboy Fund for Compassionate Care, endowed in memory of Jordan Ruboy, MD, a pediatrician associated with the hospital for more than 50 years. The fund was established with a gift from Ruboy’s spouse, Richard Milstein, Esq., to provide education in compassionate care through a series of lectures for MGH clinicians who strive to continue Ruboy’s work by providing high-quality care for pediatric patients. The fund also aims to help and support patients, their caregivers and family members. I was fortunate to meet Richard Milstein today and he made a point of noting that Dr. Ruboy’s impact on families was such that they were now reaching out to him, Richard – the husband – as a way to connect with their beloved pediatrician. Such is the impact of a beloved doctor of children.

This talk was the 5^th such presentation we have done in the past 3 months. We have presented CPN to residents at Boston Children’s Hospital, residents at UMass Memorial Hospital in Worcester, pediatric providers of all disciplines at Pediatric Rounds at Eastern Maine Medical Center, and Medical students at Tufts. In these talks, we describe our origins, our mission, our goals, our programming. And then we show some of the CPN parent videos. And this is when it all comes most alive.

During these interactive parts of the presentation, there are three groups of people in the room: the providers in the audience, the bereaved parents from CPN showing CPN, and the parents in the videos sharing their stories. It is a powerful combination. And here is what I find to be the most important thing we are learning — perhaps you will find it obvious but I think it bears repeating because it is actually quite profound: each of these 3 groups of people share ONE GOAL—to improve the experience of seriously ill children and also their families.

Certainly Courageous Parents Network is all about helping parents – that is our very mission: to empower parents caring for children with serious illness.

The parents IN the videos have agreed to share their story precisely because they hope their own lived experience—including all the messy bits—can help families following. Parents want to help other parents: It gives additional meaning to their child’s life and their parental role.

And last but not least, the pediatric providers who work tirelessly every day, often engaging in very very challenging and heartbreaking conversations with sick children and their parents, do what they do because they love and respect and are committed to children and parents. This includes doctors, nurses, social workers, child-life specialists, chaplains. As one of the pediatricians said afterwards, “You only go into Pediatrics if you love children and families.” (not the least because almost every other medical specialty is more lucrative.) The work is difficult and the truth is that medical school doesn’t really prepare doctors for the communication skills and emotional intelligence (including empathy) they need to do this work well.

The work is also exhausting. And the health care system is just as flawed from where they sit as it is from where parents sit. Just because people in the hospital are IN the system doesn’t mean they like the system. Too little time is too little time for everyone. One doctor today told me what a gift it was when a patient called on the cell on his day off to ask his advice about whether they could take their daughter on a plane trip for a special family event. He loved that the parent wanted his advice and he gladly gave his free time to have the conversation. It was the type of interaction that brought him into Pediatrics in the first place.

I emphasize this point not because of how much I admire pediatric doctors, nurses, social workers, chaplains and child-life specialists. Which I do. Tremendously. I emphasize it because it gives me limitless hope, hope that will keep me and CPN going. Sometimes parents experience a disconnect with their child’s care team. Sometimes that disconnect is simply inconvenient, a short term obstacle to be overcome or circumnavigated. And sometimes that disconnect triggers a rupture that wrecks lasting havoc. I know of parent-doctor interactions that make my toes curl they are so upsetting, many of them related to the bad delivery of bad news.  It is tempting and so very understandable to remain angry and put up a wall. Me, Parent – You, Doctor, System.

But in fact, rather than walls, I hope we can see the space we actually share. In this shared space, we have one goal: to take the best care possible of this child.

Fortunately, the number of positive stories far outnumber the negative stories and they inspire every day. And now, going forward, when I hear a bad story of disconnect between all the grown-ups, I intend to remember this shared space as True North — the starting point to which we can return again and again to reset and begin anew to work together to give the children the best life possible.