HopeHealth has been growing its pediatric hospice and supportive care service lines in recent years to address a range of unmet needs among seriously ill children and their families.
The nonprofit health system serves Rhode Island and southeastern Massachusetts. HopeHealth provides home care, hospice, palliative and dementia care, as well as caregiver and grief support services.
HopeHealth partners with the LifeSpan Health System’s Cancer Institute and Accountable Care Organization (ACO), as well as Rhode Island Hospital, The Miriam Hospital, Newport Hospital, Coastal Medical, Brown Medicine, South County Hospital and Sturdy Memorial Hospital. HopeHealth is also a hospice and palliative medicine teaching affiliate for The Warren Alpert Medical School of Brown University.
The health system in 2021 began providing inpatient and community-based pediatric palliative and hospice care to infants, children and young adults.
Hospice News recently sat down with pediatrician Dr. Rebecca MacDonell-Yilmaz, medical director of HopeHealth’s pediatric supportive services. MacDonell-Yilmaz played an important role in helping to establish these services to seriously ill patients and families in need of increased support both in the hospital and home settings.
What led you to the space of pediatric hospice and supportive medicine?
I’m a pediatrician. I am the one attending physician on HopeHealth’s inpatient pediatric palliative care team. I am also a supervisor for the adult inpatient palliative care teams at two hospitals, at Rhode Island Hospital and the Miriam Hospital, which are the main teaching sites of Brown Medical School.
My residency training is in pediatrics, and I am board certified in hospice and palliative medicine and in pediatric hematology oncology. When I finished my training, I took a role with HopeHealth, because I had done my palliative and hospice fellowship through them.
At the time, their greatest need was inpatient adult palliative care, so I started doing that. Pretty quickly, it became clear that it would be really beneficial to have a pediatric specific home hospice team.
As a pediatrician, I started overseeing the care of the few pediatric patients that we had on our home hospice teams. But at that point, they were assigned to whatever team they fell into geographically. That meant people were being expected to care for them who might not have the expertise or the desire and comfort to care for pediatric patients.
How did HopeHealth’s pediatric palliative and hospice services begin? What was your role in the process and how did you determine a need for these services?
I started advocating pretty early on that I thought it would be really beneficial to form a separate, dedicated team of nurses, physicians, social workers and chaplains to take part in this care. My first year of employment here I spent collecting data on mortality in young people in the regions that we covered, looking at our historical numbers and how many pediatric patients we had on service and imagining what it could look like to really offer a child- and adolescent-geared service at home.
I developed a proposal and presented it to our senior leadership and to our board of directors, who very happily agreed that this was absolutely in keeping with our mission and something that really made sense for us to offer, because there was this need out there not being filled.
Our team officially began towards the end of 2021 heading into 2022. We had a couple people from each discipline interested in doing this and formed a separate interdisciplinary group that met weekly.
At first we only had maybe two or three patients to talk about each week, but it was still important to have that separate meeting time to come together as a group. We gradually grew over time and more people became interested and wanted to join us. We developed in-person training sessions and ran a monthly education lecture series.
How have you shaped your pediatric hospice and palliative care delivery model? What do these programs look like, and what services are provided?
Early on we established a workflow of whenever a pediatric patient is admitted, we try to have the same registered nurse case manager follow the patient to minimize the revolving door of faces for a child and family. That has also been a really huge source of support for the staff caring for these patients.
We’ve since added more nurses and assigned backup nurses for each patient to have someone more familiar with the patient and who has developed a relationship with them. We have chaplains, hospice aides, social work support and a robust grief support program of counselors that specialize in the loss of a child.
Some of our newer services include child life specialists who help with developmentally appropriate processing and legacy and memorabilia for the family. We are in the process of adding a massage therapist who specializes in pediatric end-of-life care.
We do inpatient palliative care consults to assess symptom management needs in the setting of life-limiting illnesses. We explore the goals of care and emotional support and processing for pediatric patients facing terminal illnesses and their families. We see kids in hospitals, medical wards in the intensive care units (ICUs) and emergency rooms. We also partner with outpatient settings such as hematology and oncology clinics.
We get to know a lot of these families over time, and sometimes it becomes appropriate to transition them to hospice. Being able to have our foot in both of those inpatient and outpatient spheres really makes that transition smoother for patients and families, because we’ve become a known entity and not as scary.
It also crosses over in the opposite direction in that children are receiving concurrent care, can still be hospitalized and receive hospice. That continuity and familiarity makes it easier to explore options when their situation changes, it really rounds out the ways we can support seriously ill children in this area.
We’ve also grown by having more dedicated education on pediatric patients and offering pearls for people who might not have experience. That has evolved into a program we’ve named the Small Steps Lecture Series, a monthly online lecture series of different topics in pediatric hospice. We feature parts of this series in our onboarding and training so that when somebody new joins the organization and is interested in pediatric care, we have training and exercises to ensure they have the right education.
How have you seen demand evolve for pediatric hospice and palliative care?
Part of the demand was factored by mortality rates among local hospitals in Massachusetts and Rhode Island. Not every child who dies in a hospital is appropriate for hospice care, so it was factoring out deaths unrelated to illness.
The numbers were pretty striking. The unfortunate truth is that there were definitely children who could benefit from hospice support if it were available, but most were dying in the hospital.
Before we started this team HopeHealth was caring for about 10–12 pediatric patients per year. Once we developed more infrastructure and educated more pediatric providers around us, that grew.
It was especially important in local hospitals to educate them about concurrent care and that kids can get hospice without completely giving up other therapies. Our census in Fiscal Year 2022 grew, I believe we admitted 26 children and adolescents to our service, and we’re on a similar trajectory for last year’s results.
We continue to grow and grow and partner with local organizations. Unfortunately, the need is there. It isn’t that so many children are dying, it’s that many of them didn’t even have an option to be at home or receive certain services in other settings.
Now we’ve partnered with child life specialists, massage therapists and other organizations to really flesh out our services in a way that’s really meaningfully different, pediatric focused and developmentally appropriate.
We have partnered with a neonatology unit in a separate hospital who does a really beautiful job with perinatal and prenatal palliative care. We sometimes work together when their neonatologist has a patient whose family wants to bring them home for the end of life. It’s still in the works of becoming a more formal partnership in the geographic region, but we are hopeful that we might potentially be able to partner with them for inpatient palliative care as well.
What do you think is important for providers to understand when looking to launch or expand their pediatric palliative and hospice services?
It’s about having strong institutional support and buy-in. This really needs to be well-thought out, and it goes best when you’re coming from a group that is already seeing it as a commitment to the mission of care.
It’s also seeing what other pediatric hospice and palliative programs are doing around the country as you try to build and learn from them as far as what barriers they find. A big thing is that it’s so different in terms of the amount of time, energy and care that pediatric hospice patients often require. It’s not always that they are more medically complex, but sometimes that can be a heavier lift. These families also generally need more support.
So when you’re thinking about staffing, it’s about having pediatric nurses with lower patient volumes on average than their colleagues, because we know they are probably going to need more visits than adults. It’s also harder grief to process at a visceral level, because a child dying is the most unnatural thing – it’s not supposed to happen. You have to have patience when measuring efficiency and costs, because it’s not going to be about making money.
We’ve also gotten a clearer picture of understanding that insurance does and does not cover in hospice and what concurrent care covers. Just knowing that quagmire of payment to wade through has helped figure out what care makes the most sense and helps have a very clear set of guidelines to know what sets pediatric hospice apart from adults.
It takes advocating that difference across your whole organization, and even having overnight triage teams in the hospital understand when pediatric patients are appropriate for hospice. It’s focusing on the different approaches and also being on the same page from a regulatory perspective. It takes time, continued conversations, education and support to lead you through this process.
