Minnesota funds pediatric end-of-life care at one of only three children's hospice homes in the country

TIM NELSON: And no family should have to plan for the end of a child's life, but it happens and it's heartbreaking. Families in other parts of the country with a child who has a life limiting illness usually have only two choices for an end of life journey-- the hospital or home. Minnesota has one of the only children's hospices in the country.

Crescent Cove located in Brooklyn Center provides respite and end-of-life care to hundreds of children. Before it could open, it had to lobby the state legislature to create a new type of hospice license. It opened five years ago in 2018. During this year's legislative session, supporters of Crescent Cove were back at the Capitol asking the state to help cover the cost of pediatric hospice. Cathy Wurzer has more.

CATHY WURZER: Thanks, Tim. Lawmakers from both parties approved that bill, which officially goes into effect on Saturday. But the state needs to work out the details of this funding first, so the money won't be available until January 1st of 2024. Joining us right now is Crescent Cove board member Brian Osberg and Carrie Edberg, the mother of a boy who received end-of-life care at Crescent Cove. Brian and Carrie, thanks for joining us.

BRIAN OSBERG: Thank you.

CARRIE EDBERG: Thank you.

CATHY WURZER: Carrie, first of all, I'm just so sorry that you're going through the heartbreak of losing a child. It is an awful loss, and I want folks to know about your son Leo. Tell us about him.

CARRIE EDBERG: It's definitely something I wouldn't want any parent to go through. Losing a child is just unbelievable pain. Leo passed away at the age of eight. He ended up getting abused at three months. And so he sustained life injuries from that abuse. I adopted him when he was three, even though he was living with me since he was two.

Towards the end of his life, his body just was tired of fighting and just couldn't keep up with everything. And I am so thankful for Crescent Cove, because I didn't know what to do at that point. But Leo was always a sweet kid. Very happy. He loved to be hugged, he loved to be in car rides, he loved to feel the wind in his hair. He loved to swing. He loved music. It's just the sweetest demeanor you could ever want in a child.

CATHY WURZER: Oh. And you mentioned Crescent Cove being there toward the end of his life. How did being at the facility help you deal with his last days?

CARRIE EDBERG: So what happened is I had already talked to Crescent Cove, and we already had plans on signing him up for hospice because we knew his body was declining. And on a Friday, I got a call from the school that Leo was seizing. And they had tried his emergency medications, and it wasn't working and he kept seizing.

And so they were like, what do you want us to do? Do you want to come get him? Do you want to go to the hospital? What do you want? And I was terrified that if I had them bring him to the hospital, that that is where he would pass. And we spent so many parts of his life already in a hospital, and it's just in a sterile environment. It's not a place you want to be when you're saying goodbye to a loved one.

So I had called Crescent Cove and said, I think Leo is going to be passing away sooner than later. And so they got everything set up for him. So on Monday morning at 8:00 AM, we were there. We were able to check in and officially put in hospice at that point. They had hospice doctors that were able to start working with his seizures, trying to control them.

We found out he wasn't absorbing his medications through his intestines, so they had to do an injection, like an SQ injection into his skin to control his seizures. So that was something that I wouldn't have been able to provide at home that they were able to do. Once he got his body calmed down, they helped to do handprints. We did footprints. They did all these memorable stuff that I was able to bring home and have as a memory. Not only for me, but for my children. Things that hospitals might not do.

CATHY WURZER: See, I'm curious here, Brian. When you hear Carrie's story and those of other parents whose children have passed away, it's something that very, very few people want to talk about. It's almost a taboo to talk about children in hospice, right? Has that made getting the story of Crescent Cove out there a little more difficult?

BRIAN OSBERG: Well, at times, yes. Crescent Cove is not that widely known. The legislation that was enacted allows us to have a stable funding source so that we can expand hospice services to children like Leo. So we provide an alternative, as Carrie said, to dine at home or in the hospital. And we think that we should be able to do more of that going forward.

CATHY WURZER: Tell me about this new law. So this is going to send state money to reimburse Crescent Cove for end-of-life care, is that right?

BRIAN OSBERG: Yes. To provide a daily rate for us to provide hospice services on a 24/7 basis and allow the hospice service provider to come in and serve the child in our facility.

CATHY WURZER: Adult hospice rules are a little bit different, right? Or adult hospice reimbursement is a little bit different. So can you explain how this is going to work?

BRIAN OSBERG: State Medicaid policy is very complex. In fact, sometimes said it's, not rocket science, it's harder than that. Unfortunately, the federal government does not pay for a facility like ours at this point. So the funds that were available through the legislation is all state money. The hospice policy under Medicaid normally is structured for people who are in a nursing home, for seniors. Not structured for children.

And so what we needed to do is get legislation through the state to allow for funding by the state. The next step is to get the federal government to participate in that funding going forward.

CATHY WURZER: So I'm wondering here, Carrie. I know you spoke in front of the House Committee in support of the funding. Bet it was difficult for you to do that. Do you see this maybe expanding across the country?

CARRIE EDBERG: It is definitely something that is greatly needed. Crescent Cove is the only third hospice home in the United States. They relied on volunteer money and donations for that. I never saw a bill. And our insurance wasn't able to be billed at that point. And there definitely needs to be these homes for children because children do pass away, unfortunately. Parents, we want to be in a setting that is comfortable. And Crescent Cove provides that, and they allow you to be with your child, to lay in bed with your child. Even when they pass, they allow you to be with that child as long as possible.

CATHY WURZER: Brian, let me go back and ask a little bit about hospice. Can children be in hospice and still receive treatment that could cure them, or is that not exactly right?

BRIAN OSBERG: Certainly hospice services does not mean that treatment discontinues completely. And sometimes it is possible that hospice services continues for a long period of time. If comfort care and palliative care is what's provided for hospice.

CATHY WURZER: And then of course, end-of-life care, if that should be needed. Does the new money come with any new requirements or any changes that you have to make?

BRIAN OSBERG: No, not necessarily. It provides, again, for a stable funding source for us. We do intend to, again, seek federal changes so that maybe the federal government can participate financially in this program. But more importantly, we're also trying to convince private insurers, including large employers, that they should cover this kind of service for their employees.

Because we think that this is something that the private sector would be interested in having as an alternative for hospice service as well. So we intend to expand the discussion here to private sector commercial insurance.

CATHY WURZER: And Carrie, because of your experience with Crescent Cove, what would you say to other parents who are trying to make the most of limited time with their kids if their kids are living with a life limiting illness?

CARRIE EDBERG: I talked to my children before Leo passed and said, would you want him to pass at home? And they didn't, because they're like, it just-- every time we go by that room or every time we walk on that floor, it's going to have lots of emotions and they're going to remember that their brother had died there. And so that's why I knew that Crescent Cove was a place for us. It was a place that provided a home-like atmosphere and the support that we needed for everyone.

But also it wasn't something that would haunt my children every day walking past Leo's stuff and knowing that he had passed there.

CATHY WURZER: So again, I'm so sorry, Carrie, about your loss, and I thank you for talking about Leo. Also, Brian Osberg, thank you for joining us, too, and telling us about this new chapter in the story of Crescent Cove.

CARRIE EDBERG: You're very welcome.

BRIAN OSBERG: Thank you.

TIM NELSON: That was MPR News host Cathy Wurzer talking with Carrie Edberg, the mother of Leo Edberg, who died at Crescent Cove in October of 2022, and Brian Osberg, a former Minnesota State Medicaid director and Crescent Cove board member.