The nation’s supply of pediatric palliative care professionals pales in comparison to the demand for these services, according to Dr. Colin O’Reilly, vice president and chief medical officer at Children’s Specialized Hospital (CSH).
The New-Jersey based hospital is part of the RWJBarnabas Health system and serves roughly 200,000 pediatric palliative care patients across its service region. In addition to adult and pediatric palliative care, the health system also offers hospice, among other services.
Children’s Specialized Hospital in 2015 launched its Pediatric Palliative Care Anchor Training Program, which includes interdisciplinary education pathways for professionals to expand their expertise and skills in serious illness care for children and families.
The program recently saw its second cohort of graduates, which included clinicians, social workers and chaplains who completed the year-long training program that focuses on a peer-based training approach in pediatric palliative care delivery.
Palliative Care News recently sat down with O’Reilly to discuss the driving forces behind the pediatric palliative care training program, and how educational and peer support components can have reverberating impacts on recruitment and retention of this workforce.
What led to the start of your Pediatric Palliative Care Anchor Training Program?
We started back in 2015 with the actual conception of this program. We recognized that there was a lot of power in the numbers. What we’ve seen throughout the nation is that we just don’t have the number of specialists to provide this care to the vast need that currently exists. That was the problem that we decided that we needed to tackle.
At that time, there were less than five pediatric palliative care certified physicians in the whole state of New Jersey. It was really not enough to meet the demand of the several hundred thousand children who have special care needs.
Within our RWJBarnabas Health system, there were four pediatric acute care facilities and then also Children’s Specialized Hospital. What we really wanted to do was initiate the conversation with our system partners at that time.
We hosted a roundtable discussion with leaders of these four pediatric centers and our goal at first was really just to look at what types of services that we had in this space and what already existed. If we were to put together a catalog of services for a family in need, what would we be able to tell them that we have to offer currently? Our goal was to build upon that.
We recognized that we were in a really unique position because we had a great deal of services. They just weren’t organized under the umbrella of pediatric palliative care yet.
We aimed to combine it all into a system-based care delivery model collaborative. While we were collaborating and talking about the current services that were offered, we decided to set something up to be able to train individuals so that we could meet the demand that currently existed within our patient population.
How has your program taken shape since that first discussion?
We developed this educational program for all members of the pediatric multidisciplinary team. This program is available to any employee of the health system. We train social workers, child life and recreation therapists, chaplains, nurse practitioners and physicians.
A unique element is that to apply to this program, you have to submit a business proposal for a performance improvement project related to the advancement of palliative care at your home site or location. That was one way we saw of creating the building blocks of knowledge for the participants in the program: to be able to address a specific issue that they were dealing with and solve that problem. In doing, we brought together all of these individuals interested in the subject matter of pediatric palliative care.
The program runs over the course of a year, with participants that get together for two days at the beginning for on-site education related to palliative care.
Then, they start working on their project for the next several months at their home site. We meet with them and provide mentorship to make sure that we’re addressing any challenges and support that they need. At the end of the year, the whole group gathers for education sessions and to review all of their completed performance improvement initiatives.
Our first cohort graduated in 2020 with a total of 47 employees trained and certified in pediatric palliative care throughout the health system. That group completed about 15 projects all aimed at improving quality of life, symptom management, and providing patient- and family-centered care.
The second cohort graduated this June, and we trained 42 individuals with the same amount of completed projects. We’re about to open up applications for a third cohort and continue to grow this network of pediatric palliative champions.
What have been some of the program’s impacts thus far?
We’ve able to really tap into one another’s expertise. We’re having bedside palliative care delivered by those who have gone through this training project. When they need a higher level of expertise to solve an issue, they can tap into those mentors in the program who help coordinate a solution.
It’s really getting that homegrown knowledge base related to the subject matter that has started to create a little spark. More people are hearing about the Pediatric Palliative Anchor Training Program and want to participate. It’s educating people in a way of them having affect change positively at their home care site, and then having them come back and help others in the program. It’s building that broader knowledge among individuals who are providing care to kids and families across this health system.
It’s been incredibly successful for us.
What are key educational elements to include in a pediatric palliative care training program as far as building up a sustainable workforce to meet demand? How does the training differ from adult training programs?
Taking a family-centered approach is somewhat unique to pediatrics, and that needs to be infused in every thing that we teach about this type of palliative care.
When you have a child with a life-limiting or life-altering disease, it’s not just the patient who is affected. It impacts the entire family dynamic with parents, siblings and others in that unit. The family needs in pediatric palliative populations are not quite equivocal in the adult world. That is incredibly important to emphasize in training.
It takes compassion and being able to put yourself into the shoes of any member of that family and understand where their frustrations and their pain points may be. What are their concerns for their child going forward? What are the child’s hopes and dreams? It’s really defining those goals of care differently, and explaining and experiencing that pediatric palliative care perspective that our trainees need to really grasp to be able to serve these populations well. What are those different types of developmental stages that can be afforded an opportunity to a sick child
It’s also recognizing that there is an emotional toll that caring for sick children can carry. It’s really making sure that training participants have a platform to share their experiences, recognize those stressors and receive the support they need to be able to have longevity in this field and really be the most impactful care provider that they can be.
Pediatric palliative care workers have higher rates of burnout and if you don’t recognize that and build support systems for that among your staff, then you aren’t setting up for long-term retention of this workforce.
What are the most significant challenges and opportunities in developing pediatric palliative care programs? How can providers navigate these to improve staff recruitment and retention, along with patient reach?
There’s a million different ways to do this and to set up programs. One of the greatest things to know is to just reach out to others in the pediatric palliative care field. We have all come across challenges and obstacles around getting a program up and running. And every single [program leader] that I’ve come across has been very open and willing to share their expertise and how they have solved problems.
Also, having bedside clinicians and team members work together to address specific issues that they had in their individual care units is key. A training program that addresses multiple areas of needs at the same time is one that improves quality of care for patients and also creates a more nurturing environment for those who are practicing this level of care.
There really isn’t a recipe or a cookbook for developing a training program. It depends on your environment, your community needs and knowing the support that you already have. You can then tailor your approach to what is going to best fit the needs of the patients at that time.
It’s about being as innovative as possible with a constant direction of trying to make health care better for these kids. I don’t think that you can go wrong if you always have advancing health care for children with chronic disease at your forefront. If that’s your focus, you’re always going to be successful.
