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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:
- Aggressive pain and symptom management
- Holistic care for the child
- 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.