Working in the emergency department (ED) is always challenging, but caring for children with life-limiting conditions adds an extra layer of complexity and emotion. In this podcast, Dr Timothy Warlow, a consultant in Paediatric Palliative Medicine at University Hospitals Southampton & Naomi House & Jacksplace Hospices, shares some top tips for how we can best care for these children and their families if they come to the ED.
This post accompanies the podcast “Paediatric Palliative Care in the ED.” It was recorded live at the Hope Church in Winchester as part of the PREMIER conference. We are grateful to the organizing team for hosting us and allowing us to use the audio. The PIER and PREMIER websites are full of amazing resources for anyone working in Paediatric Emergency Medicine, and we highly recommend them.
Listening Time – 14:52
Palliative care is a term that can often feel daunting, even for seasoned professionals. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” This definition, while comprehensive, can feel overwhelming, particularly in the high-pressure environment of an ED.
The key takeaway is that palliative care is an active approach. It’s not about withdrawing care but about increasing support and intervention at critical moments. Palliative care services often get involved right from the diagnosis of a life-limiting condition, which might be present from birth or develop as a stable condition deteriorates. For instance, a child with cerebral palsy who begins to suffer from repeated chest infections or gut failure may transition from stable to needing palliative care. Our primary role is to enhance the quality of life for both the child and their family—ensuring they make the most of every day.
The Misconceptions of Paediatric Palliative Care
When I talk to people outside of medicine about my role, the reaction is almost always one of sadness. They assume that working in pediatric palliative care must be incredibly depressing. While there are undeniably tough moments, the reality is far more nuanced. Yes, we deal with significant challenges, but there is also joy, laughter, and the same dedication to paediatrics that you’ll find in any other area of care.
The number of children with life-limiting conditions is on the rise. Recent data shows that from 2012 to 2017, the prevalence of these conditions increased from 27 to 67 per 10,000 children. In Hampshire alone, there are currently around 3,000 children living with life-limiting conditions, a number expected to rise to nearly 4,000 by the end of this decade—a 27% increase in a relatively short time.
The Implications for Emergency Departments
This increase in the number of children with life-limiting conditions presents significant challenges for EDs. Not only are there more children with these conditions, but they are also presenting with increased medical complexity. Many are technology-dependent, requiring high levels of care, often in their homes with 24/7 nursing support. When these children present to the ED, maintaining their usual care level can be challenging, let alone considering escalation.
Compounding these challenges is the evolving landscape of parental expectations. Parents today are more informed and have higher expectations for the care their children receive. Meanwhile, community services have struggled to recover post-COVID, particularly in terms of nursing numbers, leaving gaps in support that EDs are increasingly expected to fill. Despite these challenges, we still lack 24/7 specialist palliative care advice, which can leave ED staff feeling isolated when making critical decisions.
The Role of Palliative Care in the ED
So, how can palliative care support you in the ED? One of our primary goals is to work closely with integrated care boards to commission 24/7 palliative care services. We are also focusing heavily on education and training across the region, equipping healthcare professionals with the tools they need to have difficult conversations with families before they reach the emergency department.
One of the most significant recent developments in this area is the introduction of a new version of the advanced care plan (ACP). This standardized form, known as RESPECT (Recommended Summary Plan for Emergency Care and Treatment), now includes an antenatal version for babies diagnosed with life-limiting conditions in utero. This allows for a more seamless transition into palliative care post-birth and ensures that ED staff have the most up-to-date information when these children present to your department.
Top Tips for Managing Children with Life-Limiting Conditions in the ED
Given the unique challenges presented by these patients, Tim shared some practical tips for managing children with life-limiting conditions in the ED. These tips were developed in collaboration with a family of a child with cerebral palsy who was nearing the end of life at a hospice.
1. Recognise the Child with a Life-Limiting Condition
Identifying a child with a life-limiting condition isn’t always straightforward. There are over 400 recognised life-limiting conditions and many more that remain undiagnosed. When assessing a child, ask yourself: “Would I be surprised if this baby, child, or young person died before reaching adulthood?” If the answer is no, it’s worth considering whether this child has palliative care needs.
2. Listen to the Family
While listening is a core skill in medicine, it’s particularly crucial when caring for these children. Families often have an intimate knowledge of their child’s baseline health—information that might not fit the standard medical narrative but is vital for providing appropriate care. For instance, some children may have a baseline body temperature of 33.5°C or a resting heart rate of 32-35 bpm. These figures would be alarming for most patients, but for these children, they are normal.
Moreover, the medications these children are on might seem unconventional or puzzling, reflecting years of trial and error. When these families present to the ED, it’s often for reasons beyond immediate medical needs. They may be seeking reassurance or require a break from the exhausting routine of caring for a medically complex child.
3. Build Rapid Rapport
Building rapport quickly is essential with this patient population. These children can be stable one moment and critically ill the next, so you may need to dive into deep conversations with families much sooner than with other patients. Acknowledge the child’s presence, even if they are non-verbal, before engaging with the parents. Summarize and clarify the reasons for their visit, as there may be multiple factors at play.
One of the most effective ways to build rapport is through acknowledgement. If a child is in PICU and has just been admitted before transitioning to a hospice for end-of-life care, recognizing the gravity of the situation can go a long way in establishing trust. These families have been through a lot, and your acknowledgement of their reality can be incredibly validating.
4. Understand the Child Beyond Their Illness
Families often worry that healthcare professionals only see their child when they are unwell and may make assumptions about their quality of life based on these interactions. Take the time to ask about what the child is like when they are well. Look at photos, and review their “All About Me” documents. This will help you make more informed decisions and reassure the family that you see their child as more than just a patient.
5. Read the Advanced Care Plan
If an advanced care plan is available, take the time to read it before engaging in discussions with the family. These plans are often the result of long and difficult conversations, and the last thing a family wants is to go through it all again. Checking that the plan is up-to-date and reflecting the family’s current wishes will also help build credibility and trust.
Finding the most current version of the ACP can be challenging. Families, SCAS (South Central Ambulance Service), or your local ambulance service will often have the latest version, so don’t hesitate to ask them.
6. Be Aware of Unconscious Prejudice
The word “palliative” can sometimes create a barrier to appropriate care. It’s easy to fall into the trap of thinking that because a child is receiving palliative care, they shouldn’t undergo further investigation or treatment. Additionally, it’s human nature to project our own values onto a situation—thinking, “I wouldn’t want that life for my child,” and letting that influence our decisions.
When faced with these situations, take a step back and consider whether your decision is based on the child’s disability or diagnosis, or on the benefits and harms of a particular intervention at that moment. Remember, our job is to ensure that these children receive the care they need, not to make judgments about the quality of their lives.
7. Be Honest About Possible Outcomes
Families of children with life-limiting conditions have often thought long and hard about what the future might hold. They appreciate honesty, even when it’s difficult. Explain your rationale for treatment decisions, including the benefits, risks, and likelihood of success. Families want to know that you are making decisions based on the best interests of their child, not on assumptions about their quality of life.
8. Avoid Common Pitfalls in Communication
Certain phrases can be particularly distressing for families. For example, referring to the withdrawal of life-sustaining treatment as “stopping treatment” can be misinterpreted as giving up. It’s crucial to be clear that palliative care often involves intensifying care in different ways, even as we shift the focus away from curative treatment.
Families often fear abandonment when curative options are exhausted, so it’s essential to communicate that you will continue to support them and their child, even when the focus of care changes.
9. Don’t Be Afraid to Be Yourself
Caring for children with life-limiting conditions is emotionally taxing, but it’s okay to show your humanity. Families appreciate when healthcare professionals are authentic and present in the moment with them. It’s okay to be sad, and it’s okay to find moments of levity when appropriate. Remember to seek support for yourself as well—caring for these children can take an emotional toll.
10. When All Else Fails, Just Be There
Sometimes, despite your best efforts, things will not go as planned. In these moments, the most important thing you can do is simply be there for the family. Your presence can provide immense comfort, even when there is nothing more you can do for the child medically. Being there for the family in their most challenging moments is often the most valuable thing you can offer.
Conclusion
Caring for children with life-limiting conditions in the emergency department is undoubtedly challenging, but it is also incredibly rewarding. By recognizing the unique needs of these patients and their families, listening deeply, building rapid rapport, and being aware of our own biases, we can provide compassionate, effective care. Remember, it’s not just about what you do for the child medically, but about how you support the family emotionally and psychologically.
In the end, the most important thing is to be present. Whether you’re having a difficult conversation about end-of-life care or simply sitting with a family as they process what’s happening, your presence can make all the difference. Thank you for your dedication to these children and their families. Your work in the ED is vital, and the care you provide has a profound impact on the lives of those you serve.
Podcast Transcription
I’m a consultant in Children’s Palliative Care at Southampton and Naomi House in Jackson’s place. I cover the whole of Wessex, Homes, Hospices, wherever the child is. And I’m here to talk to you a little bit about how we look after these children in the emergency department.
This is the definition of palliative care. It’s quite wordy and quite long. And I think that’s what many people struggle with, is knowing what is palliative care. And I think the key points from this are that it’s an active approach. Often the care increases at a time when palliative care is mentioned, not decreases. And palliative care services get involved from the point of diagnosis of a life-limiting condition. So that’s either a condition that’s palliative from the start, or a situation where a stable condition is seen to be deteriorating in a child. For example, cerebral palsy and the child gets repeated chest infections or gut failure. And our main role is to enhance quality of life. So to get the best out of each day for that child and family.
Every time I speak to anyone outside of medicine about my role, if they don’t cry immediately, they often tell me how sad it must be and how awful each day must be working in the specialty. Sometimes I say, yeah, keep the sympathy coming. But actually, we have a lot of fun. And our role is to have fun as well as do paediatrics, the same as for you guys.
Why the focus on children’s palliative care? The numbers of children with life-limiting conditions are increasing over recent years. You’ll probably see that in your emergency department. From 2021 to 2017, the prevalence has increased from 27 to 67 per 10,000. And taking those numbers forward for Hampshire, we can see that around 3,000 children in Hampshire have life-limiting conditions at the moment. But that’s likely to increase to nearly 4,000 by the end of this decade. That’s an increase of 27% in that short time.
So what are the implications for ED? As well as the increased number of children with life-limiting conditions, we’re also seeing increased medical complexity. More children are technology-dependent. I’ve got a number of children in the community at the moment who’ve got high dependency level care in their homes with 24/7 nursing. So they come to the emergency department, and even being able to maintain that, let alone think about escalation, is a real challenge.
This has all occurred at a time where parental expectation has changed. Alongside that, post-COVID, community services have really struggled to recover, particularly community nursing numbers. And at the moment, we’re still not in a position where we have 24/7 specialist palliative care advice.
What does that mean for you guys? Well, there’s not a lot of literature on life-limiting conditions attending ED. But what we can see in terms of admissions to PICU is that those with life-limiting conditions make up 58% of PICU admissions and 72% of PICU bed days. And that was in 2018 based on a study across the UK.
So how can palliative care help you? What is it we’re trying to do to make things better? So we’re working really hard with the integrated care boards to achieve commissions 24/7 palliative care. We’re doing a lot of training in education across the region on how to talk to families about difficult things before they get to the emergency department. We’re working on a commissioned palliative care service across the region and also things like a digital platform to be able to share advanced care plans. So actually, when a child comes into the ED, you’re not having to fumble around trying to find where an advanced care plan might be to talk about those discussions.
One of the biggest changes we’ve seen recently is a new version of the advanced care plan. And this is a standard form now with respect and an antenatal version with respect. So babies in the community with life-limiting conditions will have an antenatal version. And we’ve got a number of children with Edwards and Patel’s in the area as an example.
So one of the things I was asked to do is to give some top tips on how to manage a child in the emergency department. So these are my top tips. And I did this in conjunction with a family of a child with cerebral palsy who was a couple of days away from the end of life at the hospice. So we kind of worked on it together.
The first thing would be to recognize the child with a life-limiting condition. And this is really difficult. People have tried to list all the life-limiting conditions. There’s over 400 that people have worked out and a load of conditions that are undiagnosed. So the question to ask yourself is to step back and think, would I be surprised if this baby, child, or young person died before reaching adulthood? And if the answer is no, then it may be this child’s got some palliative care needs.
Second of all, listen to the family. And I don’t mean that in the same sense as you all do so well already. I’ve got children that I look after whose body temperature normally is 33.5, whose resting heart rate is 32 to 35, and who sometimes breathe and sometimes don’t breathe. But they’ve managed to do that for a lot of years. These children write their own story and they’re completely on their own. And parents and carers know them inside out. So listen to them even if it doesn’t make sense. Also, the medications they’re on are often a combination of trials of this and that over multiple years. And again, it may not make a huge amount of sense in some ways. And it might not help you to find out medically what’s going on in that moment. But these families might attend ED, as you know, for lots of more reasons than just medical ones.
Number three is to build rapid rapport. Now, why do you need to do this particularly with this group? The fact is that this population of children can be fine one minute and then really not fine the next. And you don’t know what sort of depth of conversation you’re going to have to have 20 minutes from now. So it’s worth often going deep and going deep quickly with these families. And they’re used to it. They’re used to difficult conversations. One of the really important things for families is that we speak to the child who’s nonverbal before the parents. Take time to summarize and clarify what’s going on, why they’ve actually attended the unit, because often there’s so many different reasons.
Acknowledgement is one of the tools that I find most effective for going deep with the family really quickly. If I’ve got a child in PICU, and I’ve only just met them within an hour, and they’ve got to go to the hospice for end of life, really acknowledging how difficult this situation is right now is a huge win in terms of gaining trust and really helping the family to relax and develop that sense of trust.
Take time to ask what the child is like when they’re well. So often families worry that we only see their children when they’re sick, and we judge their quality of life on the basis of what they’re like in the hospital. So take time to have a look at some photos. Have a look at their “All About Me” documents that are designed to help you guys make the best decisions for their child when you see them in the emergency department. If possible, try and accommodate the sensory environmental needs as best you can, but I appreciate that’s a challenge.
Number four is to read the advanced care plan if it’s present and confirm with the family. These families don’t want to go over the whole story again, and if they’ve written it and gone through it, have a look at that first and check that it’s up to date. That will again win you credibility in the discussions. One of the challenges is finding the advanced care plan and making sure that when you’ve got it, it’s up to date, and that is a challenge. Parents and families are the best port of call. Also, SCAS or the ambulance service where you are will have the latest version.
Beware of unconscious prejudice. Sometimes the word “palliative” can be a barrier for children receiving investigations or treatment that might be the right thing to do. And also, sometimes we can look at a child and think to ourselves, there’s no way that I would want that life. And that can sometimes find its way unconsciously into us thinking that we shouldn’t escalate for this child when it might be the right thing to do. Sometimes “I wouldn’t want this life” can make us feel like this isn’t a life worth living. The child’s quality of life must be poor, and therefore we shouldn’t escalate. So just have that in the back of your mind.
The way I try and think about it is to take a step back and think, am I making this decision based on this child’s disability or diagnosis, or on the benefits and harms of this intervention at this particular time? Be honest about the possible outcomes, even if it’s hard. The families will have already had those thoughts ahead of you. Explain your rationale for such decisions. We sometimes think it’s not going to be right to escalate for this child, and that’s completely valid, but take time to explain why. Explain the benefits, the harms or risks, the magnitude of those, and the likelihood of those. And families really value that because they come into A&E thinking, these people are going to judge the value of my child’s life based on their disability. So our job is to disprove that hypothesis.
Avoid these phrases. These are the top phrases families really struggle with. The care that we might withdraw is life-sustaining treatment, not treatment itself. Often, as I’ve said, treatment gets more intense as palliative care becomes involved. And these are some of the phrases families really struggle with. They’re worried that when there’s no cure, people are going to abandon them
, and they’re going to feel alone. And that can sometimes drive them to make decisions that are perhaps not in the best interest of their child.
Don’t be afraid to be yourself. Take time, collect yourself before you go in and see them, and try and be truly present with them. They will notice. They will have seen hundreds of doctors in emergency departments before. It’s okay to be sad; it’s okay to laugh, but it’s important to get some support. And lastly, when all else fails, if this is a situation that’s going totally wrong in front of you, just be there. That’s the most important thing. Be there, and actually your presence with them is far more important than what you can do or choose to do for their child.
Thank you very much.
The Speaker
Dr Timothy Warlow is a consultant in Paediatric Palliative Medicine at University Hospitals Southampton & Naomi House & Jacksplace Hospices.
He is the clinical lead for the Wessex Children’s & Young Adults’ Palliative Care Network and represents children and young adults at Hampshire Isle of Wight End of Life Board.
His research and clinical interest is complex symptom clusters in children with severe neurological impairment taking a leading role in the development of national guidance in this field. He is a keen mountain biker and guitarist.
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