SCCM Resource Library-Including the Child's Voice in Pediatric End-of-Life Care

Video Transcription

So, thank you for the introduction. My talk is about including the child's voice in pediatric end-of-life care.  And the reason I'm talking to you guys about this is that this is a rare occasion. Unfortunately, most children in the pediatric ICU who were dealing with end-of-life issues  are often incapacitated, either neurologically devastated or incapacitated by sedation and intubation meds.  And so, although it's rare, it does occur that you have a child who's able to participate in decision-making.  And so, what I hope to spend some time on is talking about some of the skills that you need to use to be able to include their voice. I have a couple of disclosures.  I am a board member for Vital Talk, which is a nonprofit organization that teaches communication skills to clinicians.  I'm also an employee of the federal government working for the National Institutes of Health. I'm hoping to use a case to discuss how to include the child's voice.  And so, this case in particular is JK. He is a 13-year-old boy with metastatic osteosarcoma of the right femur extending from the hip to the knee.  And two days prior to his ICU admission, he had a large bleed from a vessel within the tumor that triggered a massive transfusion protocol at our institution, which really  means that he got like liters upon liters of blood products, but was able to be stabilized, and he remains cognitively intact.  After stabilizing the bleed with a compression dressing, the oncologist offered palliative amputation as the only option, which the family declined.  We had talked to the orthopedic surgeon. We've talked to interventional radiologists. There was a lot of communication around other options and found that palliative radiation  was not actually a valuable option for this child, nor was ablation with the IR. And so, given that amputation was not going to solve the underlying problem, the family  declined that therapy for palliative care. And so, the ICU team was then asked to meet with the family to discuss next steps.  And so, in the family conference, the attendance was the mother, the father decided to stay  back at the bedside with his 13-year-old son, the patient, the patient's three older siblings  who are all adults, and then we had physicians from the oncology, palliative care, and ICU team, as well as the oncology social work presence.  And during the family conference, it was revealed that the child is unaware of the diagnosis, and the family requests that the medical team refrain from discussing end-of-life care  in his presence. And so, the questions I have for you are, you know, what is your obligation as the ICU provider to this patient to disclose the diagnosis?  And how do you balance the parent's wishes with the wishes of the child when we don't even know what the wishes of the child are?  And lastly, what skills can you use to communicate with the child in the ICU, especially around end-of-life care?  And so, to answer the first question, what is your obligation to the patient to disclose the diagnosis, we'll go through the literature.  And the literature is very clear about the need for informed consent for research. So, if we're enrolling this child in a clinical trial, since he is above the age of 12, informed  consent is necessary rather than just assent. But when it comes to treatment, is consent necessary? Well, in most states, age 18 is the age of majority.  Therefore, consent must be obtained from the patient's parent or legal guardian. Now, that being said, in pediatrics, children old enough, and we consider children seven  years or older as old enough, to understand the medical discussions are sometimes asked to give consent for care.  Children can also dissent, which means they don't agree to participate, but assent is not required by law.  That being said, many institutions require children who are developmentally and cognitively able to participate in decision-making.  And so, knowing that we're not obligated to have this conversation with the family, but as a medical team, we think it's probably important for the kid to be part of the discussion,  how do you balance the patient's wishes with the parent's? And so, what do children know about end-of-life care?  I'll take a step back, is that it has been theorized that all children move through discrete  stages of sophisticated thinking, and even young children can possess adult-like cognitive  skills that allow them to actively participate in medical and meaningful medical decisions. We also know that children of any age can experience this development in cognition and  meaningfully evaluate environments, relationships, and circumstances to find what they see as the value in their quality of life.  But at the heart, it's that children who are dying often know they're dying. Their body is changing. Their breathing is a little bit more labored.  They may notice different senses, as their sense of smell may be a little bit elevated, or they have pain.  And because children are doing the same thing that we as adults are doing, which is trying  to protect their parents and their loved ones, they often don't disclose some of these symptoms. And you may ask, well, what do they want to know?  Well, most children will defer to their parents as their arbiters, as the ones who have their best interests at heart in making decisions for them.  But some children will prefer to not be actively involved in the decision-making, but they  do still desire and value receiving information, voicing their preferences, and choosing how treatments are administered to them.  They want to play a role, even if it isn't the primary role of making decisions. And so for us, it was really important to get at the why, right?  Why did the family want to keep this information from their child? What does the child know already, and how can we make it safe for the family and the child to have a discussion?  And so we went back to the case, and we asked those questions. The first questions we asked was, you know, tell me a little bit more about what your  fears are around, you know, JK knowing what's going on with him, about knowing his disease. What are you most worried about?  And they revealed that what they were most worried about was his anxiety, and that he doesn't want to know, and that he is living a, you know, with a horrible disease, but he's  living a good life. He's laughing, he's playing, he's happy, he's interacting with his siblings. They just thought that ignorance was bliss.  And then they also shared with some more probing two scenarios that led them to this decision.  The first was that when doctors were in the room once and talking to JK about his diagnosis  or talking to him about his disease, he got really anxious and started having palpitations and actually went into SVT.  And so they took that as a sign as knowledge for him is harmful to his disease and to his state.  And the second situation they brought up was that once when they were in the ambulance on their way to the hospital, the EMT driver had mentioned the word cancer, and he had  immediate anxiety, palpitations, he started having chest pain, so he was having what seemed like a panic attack. And they are fearful of us even bringing up the word cancer again.  And so for us, that told us that, boy, this is really hard, and we can put our hands over our eyes as much as we want, but we really need to start talking about it.  It also told us that, you know, this is going to be a hard discussion and involve us really thinking about the fact that there's going to be emotions that well up and how do we  respond. We respond with empathy. And then we have to be supportive. And we were very clear to this family that we're going to support them in a very different  intentional way about revealing these diagnoses that didn't happen in their prior experiences. And so we then shifted to talk about why it's important to include their child.  And the first is that parents' preferences for their child's end-of-life care may differ from what the child wants. And this was a perfect example.  You know, the family had said, we don't want to go back home. We prefer to die in the hospital because that catastrophic bleed that happened at home was scary for us.  And I asked, well, what does J.K. want? Where would he want to die? And the family said they didn't know.  And that to me said we need to have a conversation if we really truly want to honor his wishes.  The second is that Children with Chronicles often have given thought to legacy building and they may even have ideas that we as adults cannot even imagine.  They may want to write letters to their favorite crush that you may not even know about. Or they may want to write letters to their siblings or make music, make mixtapes.  There's just lots of things that we haven't thought about. They might want to give away their stamp collection, that just understanding what's important to  them helps us to prioritize and make the final days meaningful. And then we can, you know, honor their final wishes and prioritize them, such as maybe  a Make-A-Wish Foundation and others.  And so the last thing that I'll bring up is that, you know, you have to ask yourself, what skills do we use to communicate end-of-life care with children?  Now, after we had gotten the family to a place where they were willing to at least consider talking about it, we said, listen, we will not let you walk this alone.  You'll be doing it with our child life therapist and with our psychologists and our psychiatrists.  And some of the tools that we use in pediatrics are journaling. We often will have the kids read books.  And then there's art therapy, where we might ask them to draw pictures of how they're feeling or about what they're worried about or what their concerns are, what brings them joy,  what makes them happy, what does a good day look like for them.  And then we also will use music therapy to help them prioritize their feelings.  And that can be helpful for families to understand what's really important to them.  There are some other tools I'm going to mention, too.  One is, the website is down at the bottom, theconversationproject.org. It is a conversation starter guide that really has step-by-step instructions on  how, as a caregiver, you can talk to your child about their serious illness. And we often will do this in the presence of a psychologist so you're not walking this path alone.  The second tool is Voicing My Choices, website also at the bottom.  It's fivewishes.org.  And it creates these five wishes by asking questions that are developmentally appropriate for children.  And these questions help us understand what's really important to them. And we can then turn the Voicing My Choices document into an advanced care planning document.  And so, what I hope I did in this really brief time was to talk about how important it is to include the child's voice to provide holistic, patient-centered, end-of-life care.  It's also important to unpack a family's motivations behind their decisions to not disclose information to their child.  Often, they're motivated by the same thing, which is they want to protect their loved ones. And so, our job is to help them see how that anxiety that they might, that child might be  having is actually fear of the unknown.  And the last is that I hope I shared with you a couple of resources that you can use in the future to help navigate this complex process should you need to in the future.  And with that, I'll say I'll stop there. And I hope we have some time for questions. But thank you.

Video Summary

This talk discusses the importance of including the child's voice in pediatric end-of-life care. It highlights the challenges of communication when a child is aware of their diagnosis but their parents don't want them to know. The talk emphasizes the need for informed consent from children and explores how children can play a role in decision-making even if they don't make the final decisions. It also provides suggestions on how to communicate with children about end-of-life care using tools such as journaling, art therapy, and music therapy. The talk concludes by recommending resources for caregivers to navigate this complex process.

Asset Subtitle

Ethics End of Life, Patient and Family Support, Pediatrics, 2022

Asset Caption

This session will cover challenging cases of primary palliative care in the ICU and best practices for integration with palliative medicine. Speakers will review causes of conflict and moral distress among the ICU team, family surrogates, and other medical consultants. The session will also cover communication strategies for optimizing family-centered meetings to discuss goals of care and minimize conflict, along with the differences and similarities in providing palliative care for adult versus pediatric populations through case-based presentation (diagnosis, treatment, and communication). Active small group workshops on communication skills for discussing goals of care, empathy, and conflict resolution will allow skills practice for clinicians.

Meta Tag

Content Type Presentation

Knowledge Area Ethics End of Life

Knowledge Area Patient and Family Support

Knowledge Area Pediatrics

Knowledge Level Advanced

Membership Level Select

Tag Ethics and End of Life

Tag Communication

Tag Pediatrics

Year 2022

Keywords

child's voice

pediatric end-of-life care

communication challenges

informed consent

decision-making

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