As the public and clinicians learn more about the benefits of hospice and palliative care, demand is rising to serve patients outside of the senior population that tends to receive the most hospice care. This includes pediatric patients.
Florida hospice care provider Trustbridge has seen the number of pediatric patients it serves increase four-to-six fold from about five to 20 to 30 annually. Trustbridge Associate Medical Director Katherine Brazzale, M.D., indicates that similar growth is occurring nationwide.
Current data on pediatric hospice utilization are scarce; nevertheless providers are recognizing that many seriously ill children as well as adults have a need to receive palliative or hospice care in their homes.
Brazzale sat down with Hospice News to discuss pediatrics at Trustbridge and how such services are poised for industry-wide growth.
Would you begin by describing Trustbridge’s pediatric hospice program, how it’s structured and how it’s grown?
Trustbridge has been around for a long time. It was originally Hospice of Palm Beach County. There’s not an overflow of pediatric hospice cases, because thankfully terminal disease in children is rare. However, when we do get a pediatric hospice case it’s always particularly emotionally draining. It’s a very specialized area, because of the need for specialist knowledge regarding medication dosing, for specialized equipment, and for assistance with family dynamics. The care is pretty unique for those people younger than 18.
Many years ago when hospice was originally starting up, there was a very small group of people that would take care of any pediatric patient, but it was kind of ad hoc. There was no specific program as such. The organization has undergone a lot of evolution, and since then we’ve grown tremendously. We’re divided into teams by area. That also makes caring for this subspecialty of patients very difficult, because we’re all spread quite far apart. So we then evolved to kind of have one physician who would oversee pediatrics, if other doctors were uncomfortable. Not everybody is comfortable dealing with pediatric cases.
A lot of people have an internal medicine background, which of course means they haven’t done pediatrics in a long time. I took over a few years ago, and became the associate medical director of pediatrics.What we’ve done since then is develop course work and training program to help nurses become more comfortable with certain procedures. We even have some simulators for practice accessing ports, swaddling and things like that. We’ve now got a bigger base of staff to choose from when we get a pediatric case.
I’ve also developed more contacts with physicians who are grateful to know that their very sick children can be cared for at home. I think that’s the key. Many of these terminally ill children have been in hospital so much that any semblance of a normal life at home has been smashed. So if they really have a limited amount of time left, I feel our emphasis is really to get the child back home to get the siblings and both parental units in the home to prepare.
No two cases are the same, because we’re dealing with newborns to 18-year-olds, but I do see many similar problems. There is the lack of normality for the family and the financial stress and the emotional stress on the parents, on the marriage, on the whole family system. It’s catastrophic.
Do you think that there’s been industry-wide rise in demand for pediatric hospice care?
I think there’s certainly a recognition that that there needs to be a better transition for those families who are pursuing aggressive care for their child, when they reach the end of the road, It’s a terrible thing to suddenly be told, “That’s it; you’ve got to go home.” There’s got to be a better way of transitioning.
There is certainly a nationwide growing recognition that palliative care and advance directives and patient goals conversations need to happen sooner rather than later. It’s more of a smoother transition to receiving palliative care, because maybe there are some elements of that that have been introduced earlier.
There’s more recognition that palliative care and hospice is more important for children. Nobody ever wants to say those two words, “hospice” and “children,” in the same sentence, but there is more recognition of the difference it can make to those families.
How do you market the pediatric program and educate referral partners about the care that you provide?
I think one of my hardest things whenever I get a referral, some of the doctors call me and we’ll discuss the case. I’ll say whether it sounds like we can help or whether we can’t and what I’m wary about doing.
As always, with hospice, particularly with children. I’m always very wary of people thinking that we do euthanasia or something ridiculous like that. People are so afraid. They also mistake going to hospice as meaning that we’ll do nothing. That’s not the case at all. We can’t cure you, but that doesn’t mean we’re going to do nothing.
However, I’m aware that my role is not to care for a chronically ill child with special needs. I’ve had a couple of those cases referred to me, and I have to make the delineation as to whether this child is terminal or is this a child with chronic illness. I have to delineate whether, by signing up for hospice, those special needs may be ignored or maybe we can’t provide for them.
Thankfully, we have concurrent care, which means a lot of additional resources and support are available to terminally ill children. One of my questions to the referral source is always: Is this child really terminal? What’s the prognosis? What is the parents’ view of the child’s prognosis? What are the goals? We have to explore that very thoroughly before getting involved in these families’ lives.
It’s a lot of education, a lot of support and a lot of emotional support. There’s a lot more we do for the children because each one is so unique. But I need to make sure before we accept your child that it’s within our scope. I always want a doctor-to-doctor conversation before accepting a child into hospice.
Regarding concurrent care, what kind of complications do hospices have to navigate in terms of certification, determining eligibility and the claims and billing process?
Thankfully with Trustbridge I have to worry about that a little bit, but I’m able to hand that off to somebody else. Usually, I tend to ask the billing people to check that Medicaid is covering both. If I have a child who’s getting some sophisticated physical therapy that we’re not going to cover out of the hospice stipend, is Medicaid still willing to pay for that concurrently? And I really have had very little push back.
There is one case where the patient is definitely terminal, but her case is so extremely rare that we just don’t know how or when it’s going to happen. We did have a lot of pushback from Medicaid. The local authorities were looking at why she’s still here, whether she really is terminal, and whether they would pay her to continue to be in hospice. But once they saw her and had a look through the chart, the push back stopped.
So with concurrent care, we’ve had very little pushback on the children I’ve cared for, getting their needs met while still on hospice, even if those needs are a little unusual. It’s just a question of making sure everybody gets paid and making sure that if we submit a bill, it’s not going to get kicked back.
Pediatric hospice has to be very difficult emotionally for clinicians, particularly, when they’re also operating under the strain of a pandemic. How can organizations support those staff to help promote resiliency?
When I started out doing a program, my emphasis was on trying to get more nurses who were comfortable with caring for pediatrics. I want the nurses, if they’re feeling overwhelmed, to be able to give the case to their colleague for a week or two while they reset.
There’s no wonderful answer. I think every time we care for a child and that child dies, a little piece of you goes with them. That’s entirely normal. It takes us all a little while to heal. As I say to the staff, this is a terrible situation for the family, our being involved might make it a tiny bit less terrible. So we support each other.
There is a relatively small group within the company who care for the pediatric cases. It’s really just a question of reaching out to each other looking out for each other. I keep an eye on how many visits the patient is needing and who is doing those visits. Sometimes emotions run high, and we’ve all got our own baggage. I had one nurse who had actually lost her own daughter who tried to help with a pediatric case and it was much too much. There’ll be some difficult moments for sure, created by everybody trying to do the right thing.
I’ve matured with the program. I’ve got better at seeing signs of burnout or signs of emotional stress in my nurses and knowing when to stop and stay we’ve got to give you a break.