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Melanie Cole (Host): Palliative care, the term, is often misunderstood and when it comes to discussing palliative care with the parents of an ill child; those parents can push back, thinking that the clinician is really giving up on their child. This is a very tenuous situation for clinicians when they are suggesting this type of treatment. My guest today is Dr. Joan Rosenbaum. She’s the Director of the Pediatric Palliative Care Team at St. Louis Children’s Hospital. Dr. Rosenbaum, let’s first start with kind of a working definition of palliative care, why it’s so commonly misunderstood and while you are doing that, will you explain the difference between pediatric and adult palliative care? Is there a difference?

Joan Rosenbaum, MD (Guest): There is absolutely a difference. And that is why there is so much concern when the word palliative care is mentioned in pediatrics. Our team is known as the Pediatric Advanced Care Team or PACT for short at St. Louis Children’s Hospital. There are numerous advanced care teams around the country and the reason for calling our team an Advanced Care Team instead of a palliative care team; is that parents often confuse palliative care with their knowledge of end of life care that adults receive.

And so, there is some misunderstanding about palliative care and hospice. The two are not synonymous and palliative care in pediatrics really represents a holistic family-centered approach to care of children who have complex, potentially life-shortening diseases. The goal of palliative care in pediatrics is to help a child live as well as they can for as long as they can even while facing often difficult and stormy medical courses.

It is more common than not for children who receive palliative care at Children’s Hospital to be receiving concurrent aggressive cure oriented care. They float in and out of the hospital and one of our jobs is to provide continuity throughout those admissions and to advocate for that child and family.

Host: So, this really based on need not prognosis. The prognosis doesn’t really have that much to do with the need for this type of care, yes? So, that’s why it’s best to bring the team in early?

Dr. Rosenbaum: We absolutely prefer to be brought in early. It is true that many of the children we care for will die from their disease long before the normal lifespan that we would hope any person to have. The reason why palliative care is so important and why early introduction of palliative care is recommended; is that we form a bond with the family and the child. We are able to understand their values, and their hopes, their goals, their worries and fears and understand that every family is different.

So, we may have two children with the exact same diagnosis and based on parental views of what they think is in the best interest of their child; they may follow two totally separate clinical courses. So, we are not in the business of telling families what to do, but to find out what’s important to them and help them achieve those goals for their child.

Host: Speak a little bit about St. Louis Children’s Hospital’s approach to palliative care. Speak about PACT, if you would, just a little bit more. Who are the members and what are their qualifications?

Dr. Rosenbaum: Thank you for that question. St. Louis Children’s Hospital has been an outstanding supporter of palliative care from the inception of the team in 2011. Palliative care is what I like to call the quintessential interdisciplinary team. Specifically at our hospital, our team is made up of physicians, nurse practitioners, and a social worker. We then have the privilege of taking advantage of other disciplines that contribute to the care of medically complex children which would include child life, psychology, chaplaincy, therapy services, and a variety of other teams. But the core of our team is the physician, social worker and nurse practitioner.

We all have received some sort although varying degrees of training in palliative care which have included special training in pain and symptom management, which have included Palliative Care in Education and Practice offered by Harvard Medical School, which have included fellowship training for some and two of our physicians are board-certified in Hospice and Palliative Medicine. So, we’ve all also had extensive hands-on care of patients with complex diseases because our team came together from very different backgrounds.

Host: Can you describe a situation in which PACT was called on? What impact did this service have on the affected patient and family? Tell us how they reacted to it.

Dr. Rosenbaum: We receive lots of different reactions to our services. Part of that depends on how the primary team presents our service to the family and we actually serve children throughout their lives and throughout the course of their disease. So, we may meet parents who are expecting a baby who has a complex congenital heart lesion or a congenital abnormality that is going to need an extended stay in the NICU or we may meet a child who is very sick in the intensive care unit and may actually be at the end of their life. And so, the way in which families perceive that is really where and when we are meeting them.

I just did a consult yesterday that I’ll share with you which was a family who is expecting a child with something called a skeletal dysplasia where their child has been found to have numerous fractures in the womb, has already had genetic testing and has a genetic diagnosis of a particular skeletal dysplasia confirmed. It is not thought to be a lethal condition. But it is a condition that will be associated with multiple hospital admissions, need for chronic pain management and need for interdisciplinary team management.

So, we had a chance to talk about first of all, what their understanding of the disease was. What their hopes for their child would be. What they were most worried about. Some of the things that supported them in their world whether they had a supportive family or special people they could go to, whether they had a faith community that was important to them and ways that we could key into as time went on if the parents were struggling with the care of such a complex child.

The last thing that was unique to the conversation because it was an antenatal meeting, was to talk about delivery room management and some of the what ifs if their child was very sick in the delivery room. Things that you would never want to have to talk about or think about for your own child; but things that we’ve learned if we can bring them to the table ahead of time instead of when the family is in crisis; the parents are able to make a much more thoughtful decision and also begin to grieve the loss of the fact that they will not have a child without medical problems.

Host: What an incredible field that you are in Dr. Rosenbaum. You have to have a certain passion. You have to have a certain way of dealing with people to do what you do every day and wow, it’s incredible. And I can hear it in your voice. Tell us how the pediatrician or the patient and family can request a member of PACT. Who initiates this request and how does that process start?

Dr. Rosenbaum: The process can start from anybody. We have a website on the St. Louis Children’s Hospital website where parents can get more information about Pediatric Palliative Care and the PACT team. If a child is in the hospital, the consultations usually come from the primary team that is taking care of the child. So, if it’s a neurology patient, the neurologist may initiate a consult just by placing an order in the chart. If the child is in the pediatric intensive care unit, the same thing. They just talk to the family ahead of time, explain a little bit about what we do and our role in their child’s care.

If it’s a primary pediatrician, they can email us or call our office directly to schedule an outpatient appointment. And we see a significant number of children in the outpatient setting. That’s typically a very nice way to see a family because the child is generally doing well at the time and there’s less worry about an immediate and acute illness than when we meet families in the hospital setting.

Host: Dr. Rosenbaum as we wrap up, please tell referring physicians and other providers what you would want them to know about PACT and it’s mission and communicating with families when it comes to pediatric palliative care, how they can start that conversation with their patients.

Dr. Rosenbaum: That’s a great question. I think that pediatric palliative care should be considered for any child who has a complex or potentially life limiting disease. The earlier that we are involved in the course of a disease; the better. Because as I stated earlier, it’s all about building a relationship over time just as would be true for a pediatrician as they follow their children from infancy to adulthood.

Palliative care is not about dying. It’s about living and living as well as you can. It’s about holding onto hope and adjusting your hopes as the disease progresses over time. And ultimately, if the child does die due to the disease process that they have endured; it’s about bereavement and moving forward and healing in the face of unimaginable sadness.

And so, we provide support at each of those stages of the life journey of a child. And we are passionate about it. We think that every child should have the opportunity to live as well as they can.

Host: Thank you so much for being with us today Dr. Rosenbaum and sharing PACT with us, explaining pediatric palliative care. It’s such an important part of all of the care when a child is ill. I just cannot even believe how some parents get through it, but with people like you; that’s how they do it. So, thank you again, for being with us. To consult with a specialist or to learn more about services offered at St. Louis Children’s Hospital, please call Children’s Direct Physician Access Line at 1-800-678-HELP. That’s 1-800-678-4357. You’re listening to Radio Rounds with St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital, you can go to www.stlouischildrens.org, that’s www.stlouischildrens.org. This is Melanie Cole. Thanks for tuning in.