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How pediatricians can refer patients to Make-A-Wish

Article

The Make-A-Wish program is not just for children with terminal illnesses, and pediatric HCPs play an important role in the process. Here's what you should know.

Transcript (edited for clarity)

Lois Levine
Michael Dominick, thank you so much for joining us today. You are the Vice President of Marketing, Marketing and Communications for Make-A-Wish New Jersey. Is that correct?

Michael Dominick
Yes. It's great to be here. Thank you so much, Lois,

LL
Thank you. So like I said, we are going to go through the process in terms of educating pediatric health care providers and how they could possibly collaborate with Make-A-Wish. But even though you work for the New Jersey program, the credentials and referral process is pretty much the same across the United States. Is that correct?

MD
It is, it’s is a consistent program no matter where you're referring a child to us so that every eligible child can get a wish.

LL
Okay, wonderful. So why don't we begin with a discussion of exactly what qualifies for a wish the medical criteria?

MD
Sure, so our medical criteria is very, I say simple, but straightforward. And we do that on purpose to make sure that people know exactly who it is in the population that we serve. Our mission is simple, we create life changing wishes for children with critical illnesses. And how we define that eligible critical illness is that a child must be between the ages of two and a half and 18 years of age at the time of the referral. So after two and a half years of age, and prior to your 18th birthday is when the referral should be placed, and diagnosed with what we call a critical illness which we define as a progressive, degenerative or malignant condition that is put the child's life in jeopardy at that time. And the third level of criteria is that you have not had a wish granted by another wish granting organization.

LL
Okay, let's move to the roles of medical team. The majority of referrals obviously come from the medical community. And pediatricians obviously wouldn't be the only player in a team of doctors dealing with a child with a critical illness. So maybe you could talk a little bit about what part they play and how that whole team interacts?

MD
Absolutely. And to your point, the majority of our referrals do come from the medical community. And what that says to us is that what we're doing is more than a nice thing, that it is playing a role in that child's medical journey, that the wish is having a positive impact because otherwise, these people of science would not rely on referring children into our program, if they didn't see the positive impact that it provided. So referrals come to us from the medical community, and that can be doctors, nurses, child life specialists, social workers, anybody who's working with that child, after receiving that life threatening critical diagnosis.

To your point though, pediatricians can play a key role in this because oftentimes, when things start to go wrong, and before that diagnosis is even confirmed, usually you're working with your pediatrician and going back and forth, often, many, many visits, trying to figure out what's wrong with the child. Once that child is then sent off to a specialist for further tests. And unfortunately, you know, the Bloodwork comes back, that MRI or whatever the test was that resulted in that devastating news for that family that their child has been diagnosed with a critical illness. The pediatrician was there at the very beginning of that journey. And they can play a role in referring that child to us once the medical condition is confirmed. The process with the wishes moving forward and after the fact, we will work directly with the specialists on the medical team that have made the diagnosis because they'll need to confirm things on the diagnosis verification. Pediatricians are right there at the beginning and they are a face that the family is comfortable with; they are these families who are thrown into a mix and a world that they never thought they'd be in, never wanted to be in. And they're learning medical terminology. They're dealing with new schedules and treatment protocols. And we rely so heavily on our medical communities in the hospitals, but we do see a great value in the pediatrician in being that support system. And maybe perhaps even being that initial referral that gets the ball rolling here because we've learned that this is a journey: it is not just the wishes. It's finding out that you're eligible for a wish, it's using that time to explore what that wish might be. It's using that as a distraction from the difficult process ahead of you. And so we encourage pediatricians to get involved and communicate with their patients, should they receive that devastating diagnosis.

LL
You made a great point about the pediatrician s, that they are the safe, consistent face in a team of new, [faces], they're sort ofthe home team. They're part of the family team. So that sense of security is probably making the families feel a lot better. So that involvement obviously is important share the overall referral process. So then tell us exactly what happens.

MD
Sure. So the referral process is pretty straightforward. And we try to make sure that we understand that we are entering the lives of these families that have had their lives turned upside down. First off, I'd like to explain that it is not just medical professionals can refer a child, the majority do come from them. However, the child himself can refer, the parents can refer any family member with a close understanding of the child's medical diagnosis can refer. So oftentimes, we will even see a family referral come through, but it was usually at the encouragement of a medical professional or a pediatrician. So I wanted to clarify that the families can refer. But we do rely on the medical team to carry the understanding of what it is that we do.

But the process is that a child is referred, you can do it by making a phone call to your local chapter, in this case, New Jersey or you can go online and we have a website that's used for all chapters across the country, wish.org, it asks for some basic information on the child, their age, their medical diagnosis, and that goes into our review system. And we have a Medical Advisory Council. We have medical advisors at the local chapter level, we have medical advisors on a national council as well. And every referral is treated on a case-by-case basis, we do have medical criteria, obviously, that qualifies or disqualifies. But we don't host medical professionals on staff full time. These are volunteers in the medical community that volunteered their time to review these referrals and deem in their medical opinion, yes, this will qualify or no, this will not. And if it does not why. Sometimes it goes back for further review looking for okay, this specific medical condition, in and of itself doesn't deem the child in a life threatening state. But is there a secondary condition that might place that initial condition now at a higher risk, and therefore they would qualify? So we rely on the medical teams, both locally and across the country to review those referrals.

Once the child's referral is deemed eligible, then they are entered into the system, they will work with their local chapter, they are contacted by our staff, they are identified with volunteers that will work directly with the family. And that's where the fun begins. And they get to meet with the volunteers and discern what that wish may be.

In New Jersey, they come visit us in this beautiful wishing place, our castle, the Samuel & Josephine Plumeri Wishing Place, to inspire them to help them think outside the box, to help them get beyond their current circumstances to help rejuvenate that innocence of childhood that has been ripped away with the diagnosis. And once the wish is identified, then we work closely with the family on when it's safe to do that. When would they like to do that experience? And we work with the medical team closely again, the illness is verified by the medical team. Yes, this is confirmed that child has this illness. And yes, I confirm that it is a life threatening condition that qualifies them for wish. And then there is the wish clearance later on when the wish has been identified. We then go back to their medical team and say you had confirmed that this young man or this young lady has this illness. This is a wish they've chosen to do in your medical opinion. Can you confidently say that we can safely do this with them, given their circumstances?

LL
Simple process. So explain if you can a little bit more of the pediatric role in determining which safety?

MD
So great question. And I think it reflects greatly on what we just touched upon, and is that we don't hire medical staff here. We do rely on the medical community, we rely specifically on the medical team that's treating that child. They know this child's diagnosis, they know this child's protocols and treatment plans. And they know not only is something safe for them, but more importantly when it will be safe. Some children do it right in the thick of their treatment. And that's when they need it, they need that boost. And of course if that's when we get the wish granted, we will then rely on the medical team to tell us whether it's safe to do that or not. And whether they'll have the most enhancing life changing experience as well. So that's where the pediatric role really comes into play, as we have come to learn over 40 plus years in granting wishes. Here in New Jersey, we're in our 40th year. As a national and global organization, we've heard the life changing impact of a wish from these children and their families. But the reason we know that we've continued to reach more children is because we know we've got the medical community by our side, that they understand what it is we do, the impact that it has, and most importantly, help guide us on when it is most safe to do so for that child so that the experience is the best it can be and that they are at their utmost safety during it.

LL
So it sounds like there's several different practitioners Make-A-Wish deals withs. That's that point where the wish has been granted, you might be talking to the specialists on safety as well as going back to the family pediatrician. Is that right?

MD
Absolutely. Anybody that has a working knowledge of that child's diagnosis and what's best for that family, their information is key and vital and welcomed. It is a team, you're right, it's never necessarily one person: you tend to see one leader of the pack, that kind of runs point on each referral, because every child is different. Every treatment protocol is different, and our relationships at different facilities are different. I don't want to say that they're not all great, but you know that you tend to have champions, and we appreciate those champions. But we welcome that, that medical knowledge from whoever it is that's working closely with the child because we want to make sure that the experience is top notch.

LL
Yeah, and one thing that you cleared up for me a while ago that I did not know is that a child does not need to have an absolute fatal illness to be part of the program. Is that correct?

MD
That's correct. And I appreciate you bringing that up, too. This is another key role that we ask those that have a chance to review this in the pediatric field. That's another great role that they can play for us is helping us discern some of those misconceptions. We are not simply an organization that grants wishes. That is not our mission statement. Our mission statement is for children with critical illnesses, meaning a life threatening condition. Science and medicine have come a long way in 43 years, and many of these medical conditions while life threatening in nature, the treatment protocols in place, many of these children go on to lead strong, healthy lives. And we believe that some of the referrals we may not receive, you know why we are not reaching 100% incidence rating here in New Jersey or in any of our chapters territories, a piece of that could very well be and most likely is due to a misunderstanding of the population that we serve. There are families out there, perhaps there are medical professionals out there, who believe we are strictly for terminal diagnosis, only, then they're not referring children that would otherwise qualify for a wish but in their opinion, do not. So helping us break that myth is a great way for us to reach more children. And that is that is our goal. We've got our mission to create life changing wishes for children who have critical illnesses. And then we have our vision, and that's to reach every eligible child. And as close as we continue to get, we're not there yet. And we know the key players to helping us continue to close that gap is in the medical community.

LL
Wonderful. Well, this, I think was a great education for our pediatric audience and it did help dispel some of the myths. Michael, thank you so much for joining us. I really appreciate it.

MD
Thank you for the opportunity.

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