Taking Kids on Your Adult Palliative Care Program…


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Taking Kids on Your Adult Palliative Care Program…
You know more than you think!

Presented by [Jody Chrastek, RN, DNP, CHPN] (53-minute Webinar) [06-20-2013]

Janelle Shearer: Welcome to this webinar, this is Janelle Shearer from Stratis Health and I’d like to welcome everyone today. This webinar is one that Stratis Health conducts for the now 24 rural communities that have participated with us on palliative care efforts.
You should have received an email with the presentation handouts and we’ll send those same folks a link to an online evaluation and certificate of participation, which you can forward and share with others in your organization who participated. Also, we’ll take questions and answers after the presentation, so please feel free to ask at that time or use the chat option if you’d like and our speaker will watch that as she presents.
Our presenter today is Jody Chrastek, Coordinator of Children’s Institute for Pain and Palliative Care. She’s the clinical nurse leader for home based palliative care program of the pain medicine, palliative care and integrative medicine department of children’s hospitals and clinics of Minnesota.

She was born and brought up in India and trained as a nurse in Scotland. She has worked as a midwife and hospice nurse in the UK, India and U.S. with children and adults. Jody is also adjunct faculty member of the Globe University in the nursing department with interests in international education and mentoring. Jody is a board member of hospice and palliative nurses association and the Minnesota Network of Hospice and Palliative Care.

Her doctorate in nursing practice focused on pediatric palliative care education. She has published and presented nationally and internationally on pediatric hospice and palliative care and we’re grateful and thrilled to have you with us today, Jody, so let me turn it over to you.
Jody Chrastek: Thank you. I’m excited and as I look at the names here I know many of you, so it’ll be like family here. I’m happy to present this to you and so glad that I get a chance to talk to the communities here.
The first slide, we don’t do peeds do we? That’s often what we hear, we have to take a peeds patient what are we going to do? So during this time we are going to look at pediatrics to help you establish that you have a lot of what kids need. Before we get started I want to say thanks to all the families who have allowed us to share their stories and pictures, because that’s what our work is about, is our patients.
Many of us deal with high impact low frequency events. These are situations that can challenge us, but we meet the challenge as it comes with the skills and gifts we have and I’m thinking of other low frequency high impact things, maybe technical 3:22, sometimes for people having a PCA, a patient controlled IV, continuous dilaudid or one of those things, which are things in hospice we’re like I don’t do that very often.
The good news with peeds is that although it’s high impact and often low frequency, it does mean that you can use the skillsets that you have and I’m convinced that hospice people have the abilities and skills because we are trained to stand with families in pain, who are angry because of what’s happening to them, all of those things and it’s the hospice team that’s skilled to do that.

I know when we’ve worked with other hospices sometimes in different places they’ll say isn’t somebody else doing that? Isn’t pediatric homecare doing that? It’s really the hospice staff and team that have that knowledge and ability to stand with family and do a fantastic job. But of course, this isn’t something you can do alone.

When we were training as part of an appropriation from the Federal government I called a hospice out of state, because this would never happen in Minnesota, and invited them to our free seminar. They said I don’t think children die in our county. I said oh my I’d like to live in that county where no children die. Others would say no we’ll just deal with it when it comes.
There is an education and some learning that needs to happen and certainly your entire team has to do it. As we had our education seminars in 2005, I remember a nurse from a rural hospice, we were in a small group and her eyes filled with tears and she said I’m the only nurse that will take peeds and when we have a peeds patient I can’t go away, I’m on call 24/7. She was burned out.
We need to make sure our entire team is on board and supported as we do education and that they have appropriate support. I think 5:50 and those kinds of trainings are fantastic, but it’s the same thing you can’t just say okay two days of training and, you’re good off you go. That access to the 24/hour telephone line for consultation is so helpful. I still do hospice calls and for those who have you know what it’s like when it’s 2:00 in the morning and you’ve done everything you can think of and the patient is still in pain or uncomfortable and you wonder who to call.
Particularly with peeds we’ve had hospice nurses who need to call someone, it’s the weekend and 2:00 in the morning, and again wonder what to do. So having both the education support, the whole team support and access to a help line can make a huge difference to the staff.

So a fun way to look at hospice home care for children, to see the benefits, for the family to be at home and I have an example I want to share, all of us for kids or anyone, the biggest comfort that we can give them is to take them home. We all feel that way. I remember taking care of a dying baby at home and then I had to leave and we had a regular homecare nurse check on them because we only had one hospice nurse in the early days. She came and checked and later when I checked in with the family they said she wasn’t a hospice nurse was she? She never said anything.

Even though she did her job appropriately, she didn’t have that personality and demeanor that hospice and palliative staff have and that’s what the family needs. They need your passion and skills and quite literally it’s a lifetime of difference for them, even if the child’s home for 13 hours and two days and you say that was a lot of work for that short period, but for that child that’s their life circle no matter how small, it’s complete. That makes a huge difference for a family.
I want to introduce you to Kim Loverage. Kim was the mother of two children and in the slide you can see the family photo and she’s very happy to have me share this story. Mac was born with 8:23 and a very severe heart defect. They decided to take him home. He had been in an ICU for like three weeks prior to going home and when they got home, Eric her husband said, this is the first time it feels like my baby because in ICU there are nurses and people coming and going all the time.

They said our baby and they could be a family. You can’t be a family no matter how good the hospital tries when you’re in a hospital situation, so being able to take Mac home made a huge difference and brought some comfort to the child, who was more comfortable without all the beeps and buzzes of the hospital but also for the siblings.

So children and family need your expertise at home. People may say I don’t think there are that many kids in Minnesota because we haven’t seen that many. Is there really a need? When we extrapolate from data and they say there are about 12 kids per 10k that have palliative care needs, when we look in Minnesota when we were doing work with the legislature about it and through the Minnesota Pediatric Palliative Care Coalition, which is an open group if anyone wants to join. Let me know.

It helps support hospices providing and palliative care providing services. We looked at it in Minnesota and thought probably 1200 kids need this service per year. There are about 250 deaths of children a year in Minnesota that could benefit from palliative care. That’s not insignificant and is certainly much less than adults thankfully, but there’s still a need.
It was interesting when we worked with the Department of Human Services to look at what the needs are in Minnesota, so you extrapolate your data from whatever but what does that mean. They looked at two of the groups at about half the kids and they found that there were 1200 to 1500, so we’re expecting there’s actually a bigger need for palliative care than we had originally thought.
So really as we look at what expertise they need, we need to use what we have, tailor it to the child and family and then build on that. My goal then is to empower people who look at situations differently. So in looking at the slide you might see an elderly woman with a scarf on and you’re seeing her from the front at an angle, but if you look again you’ll see a young woman that you’re looking at from the back.
Situations are very much, what do we see and gather from the situation? In pediatrics our role as hospice workers is to listen and advocate. You know as an adult when you get your patients home they often tell you things that they never really disclosed in the hospital and that’s they’re on their own turf, comfortable and they tell you things that you can listen to, support them and advocate for better care.

That’s what Kim tells us in this one about how nice it was to have a hospice nurse come. She said we took Mac home to die, but I’ve never seen a death. My grandparents are still alive and she tells us, I’ve never seen a death I don’t know what it looks like. I’ve see it on TV and we all know what death on TV looks like. It’s either highly traumatic with blood spewing everywhere or beautiful and you don’t have to do anything, the person relaxes and the person still looks as beautiful as they did when they were alive and healthy.

From Kim’s point of view, she said it was so reassuring to know that this person coming in has seen someone die and knows what to do, has seen the process and can guide us through that. That’s what hospice has to offer is people who have walked this path with other families.
Spiritually there are similarities and we do need to be aware of them and I’m not saying it’s the same, so let’s look at some of those. Certainly there are similarities, families facing the death of a loved one and all of us have dealt with complicated matters in families. Children really shouldn’t die and usually the case is that we die before our children, so just the death of a child in itself is more intense most often but we’ve all been with families 14:20… faded audio.
And certainly we have families where with adults a lot of extended families are involved and needing support. Older people who are dying with bigger families that we need to support, as many as we can.

In smaller communities, it’s often a case where the entire community is involved with that. This is something that hospice workers are used to doing and we know how as hospice and palliative care workers in the community, you know how to do pain management. I’m guessing if we could have more of a conference here and I said what’s your most common management you use and you’d have morphine, lorazepam, atropine would all be high on the list. That’s the same for kids and hospice workers are fantastic at knowing how to use those medications.

Certainly the dosages are different and the way it’s worked out is different, but the whole piece of explaining it to the family, supporting them, of saying we’re not going to worry about addiction, the same things that our families and adults are worried about, our family and kids are wondering if morphine will make them stop breathing, all those same kinds of things. As hospice workers for adults we have those conversations all the times.

So there are similarities and of course there are some differences and this is where the education has been. How do you assess pain on a baby who can’t rate the pain zero to ten? I would say that we assess it as we do on non-verbal adults, people who aren’t able to tell us what their pain level is. There are ways to learn about pain in non-verbal children and what’s age appropriate. Our two year olds are going to be very different in the way we treat and talk with them than our 18 year olds, although those of us who have had 18 year olds, sometimes think they too act like two year olds.
When we’re taking care of pediatric patients, we obviously need to be careful about their development age which is another piece we can learn about. What does a four year old understand about death? What about a 12 year old? How much should they be involved in that? So there are some learning things that happen.
We have much younger families. Most of our families in adult programs don’t have young children at home, although sometimes grandparents do take care of young kids and sometimes our adult patients in communities like what you work with, tend to be settled. We do have homeless in some cases, but most are settled and they have their community about them, whether it’s a church or a lodge, but many of our young families don’t have that support or retirement so they’re still working and trying to deal with growing and developing their family while losing a person in the family.

So there are also some psychosocial attributes of course that are different. I don’t mean to say this is just like adults it’s not, but the skills you have are what the families need in the community. Often too we’ll find increased providers, so our physicians tend to be involved, so often when kids go home they have an oncology diagnosis or a neurodegenerative diagnosis, often the providers are more involved. Kids are cute and everybody likes them and wants to be involved.

That provider coordination communication can at times be more complex in our adult hospice. We work with two or three physicians maybe, the oncologist, a family physician. Whereas, with our kids generally we have quite a few doctors like a 19:07, dermatologist, renal, etc. Not all but the are coordination can be a bit trickier with kids and of course conditions and diseases vary a lot.
Again, these are things that all of you I’m confident have skills with and I’ve seen adult hospice take on kids and do a fantastic job and are proud of themselves when they do. Nobody can do it better than the people in the community with support and education. It’s a matter of building on what you know.
So as we look at our differences that should inspire us to deepen our knowledge and abilities. There are lots of opportunities, websites and books that serves us and for anyone who’s interested I’m more than happy to share or speak further with that if you haven’t recognized already this is a passion of mine.

Really, building on what we know is important and as we go through, remember and remind our staff that they’ve all cared for complex patients in the past and have been successful, and with help and support you can do it for peeds. In adult hospice we provide symptom management excellently and psychosocial support and we should do the same thing with pediatric palliative care.

Let’s look at the definition for pediatric palliative care and you can read it on the slide. It’s an active and total approach. All those four domains, physical, emotional, social and spiritual focuses on enhancing the quality of life and we talk about that in adult hospice a lot. Hospice really is about living your life and that’s what pediatric palliative care and hospice is supposed to do.

How can we help a child live fully? Sometimes for kids this means going to school until the week before they die. Sometimes it means not going to radiation but going to a water park. It really is what is quality of life for this family and there’s nobody better to talk about quality of life, balance, burdens and benefits than our hospice community, because this is what we do.

So pediatric palliative care should start at diagnosis of the life limiting disease. It includes our team, which you’re all familiar with. Three things it does:

  1. Aggressive pain and symptom management

  2. Holistic care for the child

  3. Improved linkage and coordination among life and care

When you look at those three things I don’t think you would say oh, hospice doesn’t do any of that for our family, because we do.

Now I had mentioned four major groups in pediatric palliative care and I want to talk about them because often people think that must be kids who aren’t cured from cancer. Let’s take a few minutes to explain about who these kids are.
There’s an informative group in England called Together For Short Lives. They have wonderful information for families and that’s at TogetherForShortLives.org.uk.

  • Group 1- conditions where curative treatment is possible but may fail.

We’re talking about progressive cancer. We have a wonderful cure rate for pediatric cancers now. About 80-85% is great, so like 4 out of 5 kids are cured. They come in and get great treatment and they go on to have wonderful lives. There is still that one, so what are we going to do for that one child whose brain tumor is in the brain stem where we can’t operate and radiation only helps slightly. How can we help the child to integrate and live as fully as possible?

I have a story. In the slide, the small girl in the pink is our patient. She has an IV running of Fentanyl and Propofol, which it’s even amazing that she’s still able to function with that. Kids can take an amazing amount of medication and still function. Most kids are not that complicated where we have Propofol running at home, which is an anesthetic agent. Most of our kids are on either G2 medication or oral meds.

One of the groups we care for in this area, probably 1/3 of our kids have cancer and the rest fall within the other three groups.

  • Group 2- are children with neurodegenerative diseases

Things like something called SMA (spinal muscular atrophy), which is like Lou Gehrigs Disease, one of those awful diseases where your muscles get weak and the earlier it’s diagnosed the worse it is for the child. Sometimes babies get it and they just shut down.

With children we often do a lot more intervention than we ever would with adults or would commonly see in adults and so sometimes this gets to be not, if we’re going to put a trach in and put her on a vent or between hospice and palliative care, how does this work? So there’s that line between hospice and palliative care which isn’t as firm as it is in adults.

  • Group 3- are children with progressive conditions in which treatment is palliative after diagnosis.

This one slide is Kim, her husband and Mac, who were able to take Mac up to the North Shore and have a wonderful time with the family to build those memories before Mac died. Mac was born with 26:31 13 so he has three chromosomes on his 13th gene pool and it’s in every cell of his body there’s nothing you can do to fix that. As soon as he was diagnosed he became palliative.

There are many things we can do to make life better, to make their quality of life more wonderful while they’re here.

  • Group 4- are children with a severe non-progressive disability, but makes them vulnerable.

Examples of this are babies who have severe birth defects where they’re born but something happens to interrupt the blood flow to the brain so the brain is then neurologically devastated. Often a feeding tube will be put in, a trach, a vent and a lot of support will be given to the family but the actual original diagnosis was severe birth asphyxia or loss of oxygenation to the brain. That doesn’t change how the child is so extremely vulnerable.

Sometimes we see near drowning in this situation where a two-year old falls in a pool and they revive them, bring them in, insert a G tube and they’re breathing on their own but there’s nothing there. In these cases the family wants to take them home, but they are prone to infection, to other situations that can be life threatening. How aggressive families want to be, this again is where hospice can play an important role where families have said to me, I just want to take my baby home. We’ve been fighting this for years we just want to take them home and love them.
Hospice workers are good in these instances in helping families. How do we look at measures and support or help them through this time. This is a skill that the families need and you all have.
I want to tell a story about Jack. In the next slide Jack is sitting in his car seat with mom and the new baby sister. Jack and the family has given us permission to share their story. Jack was born with something called amniotic band syndrome. Around the baby is that sack, there’s amnion and chorion, the two layers that make up that sack and sometimes abnormally they separate and the inner lining, the amnion gets in the way of the developing fetus and if you look at Jack you can see a little on the left of his face it’s more affected than the other side.
The amnion basically cut across Jack in that area and then affected his arm as well and prior to his birth they didn’t believe he would survive birth. He did survive and they wanted a complete hospice plan of care. We were on board totally with it and they were feeding him with a special nipple because of his severe cleft pallet. Then he seemed hungry but tired easily, so they thought to put an NG down, so they did. He actually did well with that for a number of weeks and then his head started swelling from hydrocephalus and because babies skulls aren’t fixed if the baby gets this the head keeps expanding and becomes a care issue.

You can see Jacks head in this is quite large. Then as they looked at comfort cares for Jack it only made sense to put a shunt in to help drain his enlarging head because if you don’t do that then literally they have a 36” circumference so they did that and when they did the surgery they thought it best to put a G tube in and Jack was on our hospice program after that.

He was doing so well we thought he wasn’t close to death anymore and then he went under our palliative care program. He actually did so well and his family had another baby so we thought it best to discharge him because they were doing fine. This baby that came to us to die is actually still alive. That was 11 years ago. Kids are so unpredictable.
So sometimes babies and children will come into your hospice program and you need to be careful if it’s still an appropriate thing to do. With kids, all the way to the end of life we are promoting development as much as they can have and we’re supporting their dying process, so it’s a parallel type of track. It’s something that’s a little different, but again when we look at quality of life, hospice workers are just fantastic in being able to do that.
Jack now has a little sister and is with us still. He isn’t on our program anymore and he has lots of needs but they’re managing very well. So kids trajectory can be very different from what we expect. We all know kids can change rapidly where they’ll be fine in the morning and by nighttime they’re throwing up and having a fever and the next morning again they’re fine. Kids change and often actually do much better than we expect or give them credit for.
So as hospice staff we need to follow and help the family as they go through this up and down.

In the next slide is a diagram where you see treat-treat-treat; hospice and all of you have a function. Many of us have had patients where they treat-treat-treat, no more chemo you’re in hospice. We’ve also all had patients, if you look at the bottom that have had this rollercoaster. I think of adult COPD patients, CHF patients who get very close to death and then we do our due diligence, put in our palliative care and visits and then they get better. In the same way children often get very close to death and people think they’re dying and then they do better.

So again as hospice workers we have learned to be flexible and that flexibility is very important in dealing with children. For parents as well. I remember a mother saying to us one time, her daughter at 23 was moving to a group home, she said when Rachel was young at 3, at that time I had been told seven times in her life that she wouldn’t make it through the night. We called in the family and yet she lived. We see that in adults too but kids can really out do it.
Rollercoaster is difficult for families and can be difficult for hospice workers as well. We talk about and look at the interdisciplinary teams which you’re all familiar with doctors, nurses, social workers, chaplains and volunteers, but with children we often add a child-life worker, which is a worker focused on the child’s development, daycare and school, etc. Here at Children’s we have the luxury of being able to have a child-life person.

In the community I’m guessing you probably don’t; however, there may be 35:20 program, which provides that. It’s a federally run program that provides support for the child and learning how to support the siblings. Their young brother is dying so how do you support that? Again, social workers, chaplains and nurses can learn about how we best support the whole family going through this. They should have a person who’s focused on the child’s development and the siblings and social workers do a fantastic job.

Again, adult hospice social workers may need more training and support which is what our social workers can provide. They can give ideas, resources and again we’re asking the whole team to grow in capacity. We’ve seen teams do it and they do a fantastic job. It’s exciting to see teams who are able to do that. Certainly there are boundary issues and we know like adults do, sometimes boundary issues get blurred, but children really touch our hearts, so we need to be careful about that power differential between medical practitioners and family members.

A lot of times with peeds the parents make more choices in the treatment options than in adult cases. It may be just 25-30 year olds which see medicine differently than our 70 year olds who, whatever the doctor says I’ll do. There is that power differential that we see in pediatrics with family and how we work best with that to embrace the family, to support them and empower them, but not having them feel like the choice is all theirs.
We had a family with a little girl who had an awful disease where her organs grew and her bones didn’t, so the internal organs were basically trapped inside her. She wasn’t in our area, she was in another area but I got very close to Beth. She was taken to a local hospital where they vented her and she was in a lot of pain that wasn’t well controlled and the mom told me this story after.
She said finally I said just let take her off the vent so I can hold her and I want her to be comfortable. Four months later the mom wrote me an email and said I’m struggling so much because I have to live the rest of my life knowing I chose when my daughter was going to die. We can’t put that burden on families, so we need to allow choice but also not as much as we can, help support them so they don’t feel like it’s their choice whether their child lives or not.
So our situation, because kids are so special and they get very close to us, we’re a little at risk for enmeshment and I think of the young nurse I told you about in the beginning and how she said I’m the only one on our team that will take kids. Then it’s really easy to get enmeshed and we’ve all seen that in our practice.

Some families and providers or nurses or whatever can get a little too close, so we have to be careful with children to have a few people involved, so it’s not just oh the only person I’ll talk to is Suzie because she’s the only one that understands. We’ve seen this develop too but in kids it’s such a tender situation we just need to be aware of that and that it’s up to the professionals.

Often families and I’m sure you’ve all heard this, oh you’re my hospice worker you’re just like one of the family you don’t need to knock. We’re close and we’re there for them, but we aren’t family. It’s important to our staff to support them. We learned this the hard way in the beginning when we were starting, one of our nurses the baby was dying and the family said couldn’t you just be on call for us, you really understand us so well. It’s a compliment that people think you’re that special, but we need to write that professional boundary.
This nurse said I’ll have my pager on I’m sure it will be fine. Call me if there’s anything it’s no problem at all, happy to help. Unfortunately, that weekend the nurse had a wedding and it’s hard for a pager to work well with a fancy dress, it was with her in her bag but they called and a child died. The family paged her repeatedly and they didn’t get the help they needed as quickly as they should have. Eventually they called the number and someone was sent out there, but sometimes what we think is kindness isn’t the best.
That isn’t up to the nurse themselves it’s up to the professional so we maintain those boundaries. You can say this sounds great, but bottom line, how do we pay for it and what is this current care act.

In 2010, with healthcare reform which we all know about came in, but one thing that came into being right away was the Concurrent Care Act and I put this on a slide so you could see what section of the law and this is in a letter from CMS and if you’re interested I’m happy to send it to you. Basically it says that children can receive curative treatment and the hospice Medicaid benefit as well as getting curative therapy if needed.

This used to always be the thing in hospice that if you’re coming onto hospice we have curative chemo and I know it varies from place to place, but generally people would say you stop that curative treatment. With the Concurrent Care Act for Children you can continue both of those treatments side by side. How it works is that the hospice benefit covers everything that’s related to the terminal disease that’s needed for comfort and the curative therapy is chemo or extended hours the child may already have, that comes from a different pocket of money.

Right now states are still working it out state-by-state. I’m part of a group looking at that but Minnesota has been good. They do it on a case by case basis. We haven’t had a lot of kids on hospice. Mostly people don’t like that H word and we see that in our adults too. Don’t mention to my husband he’s on hospice. However, we have had a situation which we’ll put in the Minnesota Network Newsletter in the near future that talks about a hospice in Minnesota that walked through it and that it worked very well.
It’s case by case, so identify those kids and collaborate well with the health maintenance organization or whoever it is and good communications and being very careful with that in regards to, who’s paying for that radiation or what and being careful with our resources.
So again I just want to include this slide here, remember you’ve cared for complex patients in the past and you’ve been successful and with help and support you can do it again for kids. In adult hospice we provide holistic symptom management and in pediatrics we do the same. As we move forward always remember if we keep the focus on the child.
I have a slide here at the end. This is Josh, one of our hospice patients who’s enjoying life. That’s what it’s about. I want to leave a few minutes for any discussion or questions or anything I didn’t cover that you would like to. Let’s open it up.
Janelle Shearer: I have a couple questions so I’ll start.
In one of the earlier slides you had an access to a 24/7 telephone number for consult, tell us more about that.
How does that work?

Is there a fee?

How would a local rural community get in touch with that?

Jody Chrastek: This is our 24/hour hospice and palliative care line. There are nurses on call for that. There is no fee currently. It’s part of Children’s Outreach to the community. When you call this number out of ours you would get one of our palliative care hospice nurses who could help you with that. If you’re in a position that you need to speak with a physician or a physician to physician contact or social worker that would be within office hours, so we would take your name/number and have them get in touch with you the following morning.
We can’t prescribe, because I’ve never seen the child you may be calling about, but I can say a child in our practice with that diagnosis, this is what we would do and what’s standard practice. We are the outer ring of support and education, whereas the local hospice provider would be the main people to contact.

Janelle Shearer: Thank you.
I was also wondering…
How do you differentiate between when a child is appropriate for hospice versus palliative care?
Are there guidelines you go by?
Jody Chrastek: On the Medicaid hospice benefit they would be the same guidelines that we use for adults. Or if there’s not the Karnofsky scale there are scales being developed for kids and I don’t know if they’re accepted yet by Medicaid because they’re still being developed, but often for us we look at would we be surprised if this child died or would the physician be surprised?
The other big aspect of it is goals of care, which is what our program works on. What are the parents goal of care? Maybe they just want to take them home, love them and never want them back in the hospital again. Clear comfort is my main goal and then they would be hospice if the family is open to that. It’s the H word that gets in the way with folks.

Sometimes with concurrent care families will say I want to take them home but I want to try that last experimental therapy or those bone marrow transplants for my child’s neurodegenerative disease, but I want to be able to have hospice backup as well. It’s an interesting time now where they can do both and hospice doesn’t have to pay for them.

Janelle Shearer: We have a couple questions in the chat.
The medication dosing is different between adults and peeds, is there a resource or a guide to help dose?
Are there good tools for pediatric standing orders?
Jody Chrastek: Great questions. You’re right, children are dosed milligram per kilogram. So then of course we have to have an accurate weight on the kids, which again in adults we don’t do very often.
There’s a wonderful book by Linda Wrede-Seaman called Pediatric Pain and Symptom Management Algorithms for Palliative Care which gives milligrams per kilograms. It’s a beautiful algorithm on the most common symptoms, which you won’t be surprised, same as adults pain, constipation, anxiety all of those. It’s $25 and is a pocket book that you can get on Amazon or at HPNA.org.
There’s a companion book that goes with it about taking kids on adult hospice programs. Sometimes just to have this algorithm book and it’s companion book and you’ve never done peeds before you wouldn’t know what to start with and this is a good guide/reference. It’s also a great resource for performance scales for pain tools or other assessment tools.

We don’t use standing orders for pediatrics, because they’re all so different. If we had standing orders for a two month old or 18 year old, so we don’t use standing orders at all for pediatrics for anything. Also, our pediatric physicians are much more invested so they look at standing orders as a scam because they want to know if you’re going to put a catheter in or if there’s a bed sore.

We do use step orders. When we have kids who we’re expecting pain crisis where standing orders would normally come in handy to quickly step up medications, so we’ll do step one so many milligrams of morphine, etc. so we use that criteria. If they’ve had four breakthrough doses within 24 hours go to step two, which is up 50%. So we have step orders which allows some flexibility.

Thank you
Janelle Shearer: Great. Thank you Jody, we appreciate your information and the great resources you provided. Thank you also to those who joined us, you will receive an email evaluation and certificate.
The next meeting will be Thursday, September 19 on the topic of Symptom Management, part 1 and part 2 will be January 28.
Have a great rest of your day.
Jody Chrastek: Thank you for the opportunity.

This material was prepared by Stratis Health, the Quality Improvement Organization for Minnesota, under a contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the US Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy.

Stratis Health | 952–854-3306 | www.stratishealth.org Page


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