Transitioning From Curative to Palliative Care Goals in Pediatrics: Common Pitfalls and Clinical Pearls

Abstract

If recent medical advances have positively impacted children’s lives, access to this new knowledge and technology raises ethical questions. Medical progress has also contributed to prolonging suffering in those afflicted with life-limiting conditions. Despite the growing tension between the need to discuss end-of-life issues, particularly advanced directives, and the widespread discomfort in engaging in such discussions, the question of death remains frequently evaded. The transition from curative to palliative goals is fraught with misunderstandings and moral distress. This transition of care is complex, and there is limited knowledge about the best approach to proceed. However, when not done effectively, the process carries risks of trauma for patients, families, and healthcare providers. In this article, common pitfalls during the care transition from curative to palliative goals are identified and deconstructed in light of the most recent evidence-based references in the field, along with the input of pediatric palliative care experts, to guide healthcare providers in addressing these challenges. Effective communication models exist and should be taught and utilized. Understanding how children perceive illness and death can guide the delicate task of including them in care planning. Shifting the goals of care from curative to palliative is not giving up on hope. It is about establishing a shared-decision approach to goal-concordant care that considers the non-curative nature of the illness and ensures that children receive compassionate and personalized care. Lastly, healthcare providers must engage in self-monitoring to remain present while delivering care in such a unique and emotionally challenging context.

Keywords

pediatrics palliative care communication goals of care do-not-attempt-resuscitation bad news advanced directives

Over the past century, improvements in living conditions and significant advances in biomedical science have expanded the frontiers of life. While these advances have positively impacted children’s lives, access to new knowledge and technology raises ethical questions. Medical progress has also contributed to prolonging suffering for those with life-limiting conditions. For example, we see an increased use of Intensive Care Unit (ICU) resources at the end of life (EOL),¹ which often comes at the expense of quality of life.^2,3 Despite the growing tension between the need to discuss EOL issues, particularly advanced directives, and the widespread discomfort in engaging in such discussions, the question of death is frequently evaded. Even in situations involving advanced diseases with dismal prognoses, we may find ourselves entertaining fantasies about “this child” who might survive… As if through this series of deaths, often seen as a defeat—especially when caring for children—we need to keep hope that life sustainment can sometimes prevail. Some families opt to pursue life extension at all costs (eg, clinical trials, alternative medicine), while others advocate for the right to end a life they now consider futile. Healthcare providers also frequently avoid confronting death, oscillating between medical activism and nihilism. The avoidance or delay in planning for the EOL is influenced by various factors, including individual, family, and societal considerations.^4-6 The negative consequences are numerous and significant: increased psychological distress for everyone involved, medical treatments that may not align with the patient’s and family’s wishes, and the use of burdensome and costly resources of limited benefit.^4,7-10 Patients and families often suffer psychological trauma from hospitalizations in ICU settings at the EOL, experiencing anxiety, depression, and even posttraumatic stress disorder.¹¹ Aggressive care also tends to complicate the grieving process.¹¹

The transition from curative to palliative goals of care (GOC) is fraught with misunderstandings and moral distress surrounding ethical issues, such as the distinction between withholding and withdrawing treatments, the balance between paternalistic and shared decision-making approaches, and legal considerations regarding best-interest decisions.¹² This transition is complex, and there is limited knowledge about the best approach to proceed. However, if not handled properly, the process carries risks of trauma for patients, families,¹³ and healthcare providers.

Drawing on the latest evidence and insights from pediatric palliative care experts, this article aims to identify common pitfalls that can hinder a smooth transition from curative to palliative care goals, while providing practical guidance to clinicians to ease the process (Table 1).

Table 1.

Common Pitfalls and Clinical Pearls During Care Transition

Common pitfalls
1. Waiting until a critical event to discuss palliative care goals: The task does not become easier over time
2. Focusing on do-not-attempt-resuscitation orders rather than goals of care
3. Making unilateral medical decisions: Parents hold their own values
4. Leaving children out: It is their lives, and they should have a say
5. Disengaging when parents insist on “doing everything’: Work it out with them

Clinical pearls
1. Establish a strong therapeutic alliance from the beginning: Every interaction matters
2. Utilize a communication model to deliver bad news rather than a hit-and-run approach
3. Navigate the delicate space between hope and reality
4. Involve the team to balance perspectives and support one another
5. Monitor yourself: Your subjectivity can compromise the care

Common Pitfalls

Waiting Until a Critical Event to Discuss Palliative Care Goals: The Task Does not Become Easier Over Time

The optimal time to discuss goals of care (GOC) is when the patient’s clinical condition is relatively stable and the patient and/or their family have been informed about the illness and its implications.¹⁴ Delaying these discussions until a critical event can overwhelm patients and families, hindering their engagement in meaningful conversations. The added pressure may lead to rushed decisions that families might later regret.¹⁵ Unfortunately, research suggests these conversations are often delayed. For example, in a recent 2-year retrospective study of pediatric deaths in a tertiary care center in Saudi Arabia (N = 302), two-thirds had a DNAR signed with a median of 3 days before their death, 95% CI [1-15 days], and most of these were signed in the ICU (n = 151, 81.2%), with only 2.2% (n = 4) discussed in the outpatient setting.¹⁶ Two-thirds of children had no advance directives, despite most having a predictable disease trajectory.¹⁶ Sharing difficult news does not become easier over time; it may become more complex as the situation evolves. However, a proactive approach fosters trust, enhances clarity and understanding, and enables patients and their families to articulate their values and preferences, ensuring that the care provided aligns with their wishes. Early GOC conversations facilitate planning, improve the quality of care, enhance family satisfaction, and reduce potentially inappropriate life-sustaining therapies.¹⁷ These measures ensure that children receive compassionate, individualized care throughout their journey, reinforcing the importance of dignity and respect at the EOL.

Focusing on Do-Not-Attempt-Resuscitation Orders Rather Than Goals of Care

Worldwide, recognizing the limitations of medical therapeutic approaches for patients with advanced conditions is essential for healthcare policies and a requirement for several accreditation bodies.¹⁸ These policies emphasize the limited value of aggressive interventions at the end of life and the challenges in planning care that centers on defining resuscitation status using various terms, including Code Status, Do Not Resuscitate (DNR), Do Not Attempt Resuscitation (DNAR), or No Code.¹⁹ Despite the high rate of hospital deaths among patients with DNAR, inconsistencies in how DNARs are implemented, understood, decided upon, and communicated—along with their implications for the clinical management of children—have resulted in subpar care. Several issues arise from using a simple dichotomous approach (Full code vs DNAR): it tends to focus negatively on what not to do instead of exploring alternatives, narrows the focus to resuscitation rather than establishing care goals through detailed system-by-system physiological assessments, overlooks patients’ and families’ hopes and values, and creates a one-way process prone to misinterpretation and misunderstanding among all involved (see Table 2).²⁰ These issues highlight the need to shift from traditional DNAR policies to a more personalized, patient-centered approach that promotes shared decision-making—considering children’s and families’ values and wishes, the ideal care setting, overarching care goals, and detailed system-by-system goals of care (see Table 3).

Making Unilateral Medical Decisions: Parents Hold Their Own Values

Over the past 15 years, unilateral DNAR orders, in which physicians determine the code status without consulting the patient or their legal representative, have become increasingly common,²¹ particularly in certain regions. However, debates persist concerning their acceptability.²² On the one hand, there is greater consensus when these orders apply to situations where survival seems unrealistic and a burden of treatments with no foreseeable benefits are anticipated (eg, advanced malignancies or neonates with extreme prematurity).²² Asking parents to approve a DNAR may impose unnecessary burdens on them. On the other hand, unilateral DNAR orders based on quality-of-life assessment remain questionable, particularly in cases involving children with non-curative conditions.²³ Clinicians might view future resuscitation efforts as futile, judging that if the child survives, they would endure an unacceptable quality of life. Conversely, parents may have a different perspective. The risk of arbitrariness cannot be overlooked.²² Unilateral DNARs appear to be most common in contexts where physicians face immediate, life-threatening decisions (eg, Intensive Care Unit or Emergency Room settings),²⁴ have limited time for discussion with families, or are dealing with high illness severity. We mentioned earlier how goals of care discussions are often delayed until a critical event, such as an ICU admission. In this context, we can better understand the high number of unilateral DNARs.

Some of the contributing factors to these unilateral decisions are the clinical prognosis and perceived futility of intervention.²⁵ However, we must consider that medical futility is a moving target, as demonstrated by attempts to save newborns under 23 weeks, which were once regarded as futile until recently.^24,26 The notion of preventing suffering as the sole rationale for unilateral DNAR should also be avoided, as it can be invoked to support both sides of the argument.^24,26 Furthermore, emerging evidence following the COVID-19 pandemic suggests that unilateral DNAR may disproportionately affect underserved communities and foster distrust toward the healthcare system.^25,27 In summary, caution must be exercised when making unilateral medical decisions, such as DNAR orders and stopping treatments. The benefits of shared decision-making have been well documented, including increased family satisfaction, improved therapeutic outcomes, and enhanced quality of life.^26,28

Leaving Children out: It is Their Lives, and they Should Have a Say

A child’s transition from curative to palliative GOC is among the most emotionally charged moments in pediatric care. There is no single correct answer to whether we should disclose diagnosis and prognosis information to children. Often, parents face a difficult choice. If they tell the child about their condition, will it serve as an anchor or open the floodgates? Fear of emotional harm and a lack of knowledge among parents and healthcare professionals (HCPs) on how best to support and communicate with the child fuel this ethical dilemma, which is not limited to any one culture.^27,30,28,29 The literature highlights that truth-telling should be adapted to support an individualized approach for children and their families, respecting their preferences.^29,31 In clinical practice, general ethical principles often guide this decision, such as the belief that children, as care recipients, have a right to be informed. However, applying these principles to real-life situations can be challenging, as healthcare providers and parents may have conflicting views regarding the relevance and interpretation of specific principles. Gillam (2022) suggests focusing on the child’s overall welfare to decide whether truth-telling should occur.^30,32 Instead of asking whether to disclose the truth, we should consider whether truth-telling would support or hinder the child’s best interests. While early disclosure might cause anxiety in some children, especially those who are highly anxious, honest information can help others build trust, foster clear communication, and increase their participation in care decisions. This process requires a multidisciplinary assessment and communication strategies tailored to each child’s and family’s specific needs.^31,33 Child Life Specialists are well-placed to assist the treatment team in assessing the child’s need for involvement and in communicating effectively, taking into account their developmental stage. Most children are capable of guiding their care preferences. For instance, despite parental consent, children as young as 7 years must give their assent before participating in a clinical trial. This underscores the moral and ethical responsibility to involve children in decisions that directly affect them. However, their level of involvement can be negotiated with their parents. Some children may participate in deciding to stop palliative chemotherapy that causes many side effects. In contrast, others may express preferences about where they want to receive care when curative treatments are no longer an option (eg, home). When parents remain protective of the information shared with the child about their diagnosis and prognosis, the child’s input should still be considered for assessing symptoms and implementing interventions to alleviate them.

In summary, involving children in medical discussions requires excellent communication skills, a strong partnership with parents, a good understanding of cultural and regional variations in child autonomy and rights, an awareness of how these can be effectively incorporated, and a thorough understanding of developmentally appropriate communication strategies. Table 2 illustrates how children’s knowledge of disease and death evolves at different developmental stages and their implications.^32-34 In contrast, Table 4 and Table 3 provide insight into the key aspects of the proposed supportive approach for engaging in discussion.

Table 2.

Children’s Developmental Stage and Understanding Death

Age group	Characteristics
0–2 years	▪ Experiences the world through sensorial information
0–2 years	▪ Death is perceived as a separation or an abandonment
3–6 years	▪ Imagination and magical thinking are present
	▪ Has a tendency to egocentricity
	▪ Death is seen as reversible
	▪ Death may be seen as a punishment
	▪ May believe thoughts can cause death
7–12 years	▪ Develops concrete thinking
	▪ Poor abstract reasoning
	▪ Continues to have an egocentric orientation
	▪ Starts to recognize that death is permanent and can occur to them
	▪ Curious about details of the Afterlife
	▪ Has basic biological concepts about the dying process
12–18 years	▪ Explores his/her self-identity and embrace new concepts
	▪ Develops abstract thinking and advanced logical skills (e.g., complex analogies, deduction)
	▪ Understands that death is final and universal, but may have a personal sense of invulnerability
	▪ Forms explanations about death based on biological, natural, and spiritual concepts

Note. References: Two World Cancer Collaboration (2025); Paediatric Palliative Care Australia and New Zealand (2023); Cancer Council Australia (2018).

Table 3.

Approach to the Sick Child and Child Sibling Based on Developmental Age

Age	Sick child	Sibling
Infant (0–2 years)	▪ Provide comfort through touch and a soothing voice.	▪ Allow them to be nearby and interact through touch.
Infant (0–2 years)	▪ Maintain routines and involve caregivers in care.	▪ Support parents to include siblings in family bonding.
Toddler (2–3 years)	▪ Use simple words.	▪ Reinforce understanding using play and repetition.
	▪ Provide reassurance through physical closeness and play.	▪ Allow visits and provide attention to siblings’ routine and care.
	▪ Maintain daily routines.
Preschool (3–5 years)	▪ Answer questions honestly in simple terms. Use storybooks.	▪ Explain using play-based tools.
Preschool (3–5 years)	▪ Prepare for changes using visual tools.	▪ Allow involvement in simple tasks.
School age (6–12 years)	▪ Include in care decisions when appropriate.	▪ Use concrete and factual explanations.
	▪ Encourage expression through drawing and talking.	▪ Avoid euphemisms that may confuse or frighten.
	▪ Reassure with clear, concrete information.	▪ Let them ask questions and prepare them for death realistically.
Adolescent (13–18 years)	▪ Be honest and allow them to participate in decision-making.	▪ Involve them in care planning when appropriate.
	▪ Address their fears about body changes and death.	▪ Offer psychosocial support, space to grieve, and peer support.
	▪ Offer a private space and peer support.

Disengaging When Parents Insist on “Doing Everything’: Work it out With Them

Even at the end of life, parents may voice a request such as, “Do not give up on my child! I want everything to be done.” A common mistake is repeatedly stating facts about the medical condition, survival statistics, and the healthcare team’s views on the futility of interventions at this stage. Parents’ reactions are complex and may stem from limited understanding of treatment boundaries, intense emotions that hinder their ability to process information, an unwillingness to face the possibility of death, inconsistencies in the information provided by healthcare team members, differing views on what they consider futile and harmful experiences, and a lack of trust in the healthcare system.

The following six steps can serve as a guide for addressing a challenging request to do everything at the EOL (Figure 1). Firstly, assess both parents’ preferences regarding the receipt of information. Secondly, consider their understanding: “You have been given much information; what is your understanding of your child’s condition and the efficacy of curative treatments now?” Sometimes, we wrongly assume that previous discussions were clear. At this point, gently rectify misconceptions. Thirdly, examine the request itself, which rarely means doing everything (Figure 1). Everything could range from providing strict comfort care to extending life at all costs.^35,37 Fourthly, assess parents’ priorities: “Given what you have learned about your child’s condition, what is the most important to you?”.^36,38 This also encourages parents to formulate what they consider a treatment success (observable outcomes) and how much suffering in their child they will accept in exchange for a chance to attain that outcome. Next, suggest a treatment philosophy (overall goal of care): “Given what we know about your child’s condition and what I have learned about your priorities, it seems that you would prefer the following balance of burdens and benefits. Is that correct?” Fifthly, recommend interventions that align with this agreed-upon philosophy. It is a common pitfall to ask parents whether to initiate various medical interventions. It is the responsibility of the medical team, which holds the expertise, to select interventions that achieve the GOC.^36,38 To prevent a sense of abandonment often experienced during the transition of care, more time should be spent explaining planned interventions rather than listing those that will be withheld or withdrawn. Sixthly, if the request to do everything persists, seek a compromise. A time-limited trial for an intervention might be a helpful strategy. However, observable outcomes should be predetermined with time to reassess the relevance of the intervention. If resistance persists, negotiating around the care limit setting is unlikely to be productive and may even feel abusive. However, clinicians must still exercise their clinical judgment. For example, deciding to stop cardiopulmonary resuscitation (CPR) after one cycle could be acceptable. This differs from running a “show code” or a “slow code,” as the CPR would be performed.^35,37 Lastly, Child Protection Services or the Court may be involved when the request would cause suffering without providing therapeutic benefits.

Clinical Pearls

Establish a Strong Therapeutic Alliance From the Beginning: Every Interaction Matters

For healthcare providers to build a therapeutic relationship that has a lasting impact on children and their families, a multifaceted approach is essential. This involves focusing on establishing trust and open communication from the very first interaction with families. It is crucial to be fully present during initial consultations and to provide clear, accurate information about the child’s condition and treatment options. Unfortunately, due to the physician workload and the hierarchy of training programs, families often encounter various healthcare professionals, which can lead to different perceptions and an incomplete understanding of the disease process.^37,40,38,39 Additionally, effective communication is not just about giving clear explanations. Healthcare providers who lack sufficient training in communication tend to focus on information exchange, overlooking the emotional responses of the child and family⁴¹(Childers et al., 2023). We frequently see clinicians dismissing families who express less common beliefs or coping mechanisms.⁴¹ By listening to both what is said and unsaid, communication with these families can become more empathetic, helping us move beyond dismissing them as unreasonable.⁴¹

Another essential aspect involves understanding each child’s and family’s needs within the context of their family dynamics, developmental stage, and previous medical experiences. When appropriate, children should be involved in decisions about their care, respecting their autonomy and preferences.^42,39 Valuing the family’s cultural and spiritual beliefs when possible, while ensuring a coordinated medical approach, is beneficial. All patients and families should have a safe space to discuss their emotional and psychosocial challenges with mental healthcare professionals without fear of judgment. By implementing such holistic strategies, we should aim to build stronger therapeutic relationships with families during their challenging times.^43,40

Utilize a Communication Model to Deliver Bad News rather than a Hit-and-run Approach

Bad news is “any information which adversely and seriously affects an individual’s view of his or her future”.^44,41 Sharing life-altering information with children and families has been extensively studied, and several frameworks exist.^45,42 While these may serve as guiding tools, no protocol or standardized framework applies uniformly across all contexts. Parents often report that the timing of these discussions is too late in their child’s illness trajectory, and sometimes they never take place.^46,43 Communication should respect the family’s faith, culture, values, and wishes. Delivering bad news can impact the relationship between the family and the healthcare team, including how parents perceive palliative care.^47,44 A systematic review found that patients and their families feel supported when they receive open and honest information from dedicated healthcare providers who tailor it to their coping abilities, using clear and understandable language with empathy, respecting caregivers, and creating space for positive coping strategies.^48,45 While it might seem that breaking bad news entails ‘giving’ information, the therapeutic goal is to gather information about the family’s understanding, provide emotional support, and create a shared care plan with the child’s best interests at the center.^49,46 The SPIKES and ARCHES^50,47 frameworks are examples of communication tools that can be easily integrated (see Tables 4 and 5).

Table 4.

ARCHES Framework to Address a Request of Non-disclosure to the Child

	Steps	Description	Sample phrases
A	Acknowledge the request	• Validate the family’s concerns and emotions underlying non-disclosure requests	• “I understand this is coming from a place of love and wanting to protect your child.”
A	Acknowledge the request	• Explore to understand the motivation to protect the child	• “I can see how difficult this is and why you might want to shield them from this information.”
R	Build the relationship	• Explore the family’s values and individual characteristics of the child to help build trust (mutual understanding is key to cooperation)	• “When you ask us not to tell her her diagnosis, what is on your mind?”
			• “Are there particular things that you are worried about?”
			• “What is she like as a person? What things do you feel are most important to her?”
			• “What questions has your child been asking about their illness?”
C	Find common ground	• Identify shared goals and values with the family	• “We can appreciate from what you have said that she is an anxious child. Your priorities are for her to be as comfortable as possible and not to be put in mental distress. These are goals that we share with you.”
C	Find common ground	• Identify shared goals and values with the family	• “In your family/culture, how are serious matters typically discussed with children?”
H	Honor the family’s preference and outline the harm of non-disclosure of information	• Share evidence-based information about how honest, developmentally appropriate communication benefits children	• “Research suggests children often cope better when given honest, age-appropriate information.”
		• Explain the potential harms of non-disclosure	• “Children typically create explanations for what they observe, which can be more frightening than the truth.”
		• Explain the potential harms of non-disclosure	• “When we are open with children in ways they can understand, it often builds trust and reduces anxiety.”
E	Provide emotional support and respond to concerns	• Create space for the family to express fears and concerns	• “This must be incredibly painful for you to think about. Can you tell me more about what worries you most?”
		• Support the family through their emotional journey while maintaining focus on the child’s needs	• “Many parents feel overwhelmed by having these conversations. What emotions come up for you?”
			• “It is natural to want to protect your child from distress. What specifically concerns you about them knowing.”
S	Devise a supportive solution	• Develop a collaborative, individualized approach to disclosure that respects parental concerns while meeting the child’s needs	• “What if we start with explaining the symptoms and treatments without using the specific diagnosis yet?”
		• Create a staged plan that can evolve and adapt over time	• “Could we work together to find words that feel comfortable for you to use with your child?”
		• Create a staged plan that can evolve and adapt over time	• “Let us develop a plan that allows for gradual disclosure as your child asks more questions.”

Table 5.

SPIKES Framework for Difficult Conversations/Breaking Bad News

	Steps	Description	Sample phrases
S	Setting	• Review the plan ahead of the meeting	• “Would you like anyone else to join us for this conversation?”
		• Ensure proper timing, privacy of location, freedom from distractions, and the presence of decision-makers or caregivers
		• Pay attention to body language
P	Perception	• Use open-ended questions to elicit the patient’s or family’s perception of the situation and medical diagnosis	• “What have you been told about your child’s medical condition so far?”
P	Perception		• “What is your understanding of the reasons we did the panel of tests?”
I	Invitation	• Determine how much information the family wants and at what pace they prefer to receive it	• “How would you like me to give the information?”
		• Consider the child’s developmental stage when deciding what to share directly with them	• “Would you prefer that I explain things to both of you together, or would you like me to talk with you first and then with the child?”
			• “Do you want to know all the details, or would you prefer the main points?”
K	Knowledge	• Provide medical knowledge in a manner sensitive to educational level, culture, ethnicity, religion, and values	• “I am going to explain what we found in the tests. Stop me anytime you have questions.”
		• Ascertain understanding	• “Let me draw a simple picture to show what is happening inside the body.”
		• Avoid medical jargon and euphemisms, and use visual aids when helpful
E	Explore/Empathize	• Respond with empathy and active listening, and provide the necessary time, space, and resources for emotional responses	• “Many families feel overwhelmed when they hear this information. How are you feeling right now?”
E	Explore/Empathize		• “It looks like you might have some questions or feelings about what I just shared. Would you like to talk about that?”
S	Strategy/Summary	• Summarize decisions, allow time for questions, and schedule follow-up	• “Let me write down the key points we discussed today.”
		• Provide written materials when appropriate	• “Our team will be with you through every step. Here is how you can reach us anytime.”
		• Ensure continuity of care and support

Additionally, it is helpful to employ direct strategies, such as adapting communication to specific situations, allowing for silence, echoing children’s questions, providing information gradually, and offering honest answers to direct queries.^51,48 Diagnostic non-disclosure to children, or collusion, is a common request in several cultures within pediatric practice. It is well documented that collusion not only affects trust and the therapeutic relationship with the child but also negatively impacts the caregivers and the medical team.^50,52,53,49

Navigate the Delicate Space Between Hope and Reality

Hope is a vital human resource for families of seriously ill children. Parents may hope for a cure, meaning more time or miracles, often clinging to these as emotional anchors. However, clinicians may misinterpret hope as a form of denial.^52,54,55,51 This disconnect can hinder transitions to comfort-focused care, as families may mistakenly believe that accepting palliative care requires surrendering all hope. When this disconnect is not met with empathy, families may withdraw and turn to alternative treatments aligned with their beliefs. Alternative medicine is widespread among seriously ill children, often driven by love, desperation, or spiritual conviction.^56,53 For example, in the Middle East, practices like herbal mixtures or camel urine may seem benign but can harm immunocompromised children.^57,54 Dismissing these outright risks of alienation. Instead, respectful dialogue can transform hope from a divisive force into a shared foundation for safe and collaborative care. Another approach would be to explore with the family what would be the most important thing if this miracle did not happen. Palliative care’s role is not to dismantle hope but to protect it by holding hope and realism in balance. Families can hope for miracles while preparing for the worst. Both look to the future, but adequate care starts with the present: What does the child need now? When families feel their hopes are honored, they are more likely to stay engaged and collaborative.^38,36 For example, when camel urine is proposed as treatment based on prophetic tradition, the goal is not to disprove the belief but to preserve trust and protect the child. For many families, healing comes from God; camel urine is simply a vessel of that hope. Rather than challenging this, clinicians can reframe the discussion: “Even if there is healing potential, the way it is collected today may carry microbes that could harm your child.” This keeps the conversation focused on safety, not faith. Involving a spiritual care provider supports the family’s values while ensuring that medical decisions remain grounded and safe. Though this example is specific, the principle applies broadly: belief-driven requests—whether cultural, spiritual, or personal—are best addressed through respect, dialogue, and shared safety. When handled this way, the family stays at the table—engaged, respected, and aligned.

Involving the Team to Balance Perspectives and Support one Another

Care coordination is crucial for ensuring seamless transitions of care across various life stages and effective disease management. Interdisciplinary clinical practice involves a team of professionals.^58,55 Typically, the highest burden of care falls on the shoulders of patients and/or their families. Hence, their empowerment should be part of every care pathway. Every effort should be made to provide all necessary information, involve the child and/or family in everyday decision-making, education, self-management support, and ensure they have access to emotional and psychological support.^59,56 Due to the varied, multisystemic, and complex nature of children’s needs, they sometimes require highly specialized services and complex care that spans multiple levels of the healthcare system and, in some cases, even provincial and/or international borders. Thus, organizing services for such multifaceted clinical scenarios and patients can be a challenging task. Healthcare teams should ensure that children and their families are at the center of care services planning, and clinical teams should respond to their non-medical needs with a united approach.

Monitor Yourself: Your Subjectivity can Compromise the Care

Clinicians often invest themselves in their profession based on an ideal of benevolence, but sometimes, the inability to cure presents a painful reality. Despite the crucial importance of initiating the transition to palliative care, engaging in this process confronts clinicians with the limits of medicine.¹ It may invoke disappointment, loss, and sadness.¹ Powerlessness in the face of death touches the clinician’s identity at its most sensitive point. Despite all knowledge, goodness, and willingness, the course of life cannot be altered. The impact of clinicians’ emotional reactions on care remains unspoken. When addressed, this subjectivity is often portrayed as likely to lead to poor decisions.^60,57 When facing suffering, it is almost instinctive to want to act to regain control and feel that our presence has meaning. This often translates into concrete actions. Who has not offered a glass of water to someone crying? This eagerness may have consequences for the care provided to children at the EOL. The clinician may perform actions that do not provide relief but create the illusion of not being idle (eg, prescribing treatments without clear benefits). Conversely, a clinician may become disengaged. Over time, repeated experiences of loss can accumulate negative emotions, leading to feelings of isolation and even exhaustion, which can further impair care. Working as part of a team is beneficial, as members can “dilute” the emotional impact felt by an individual clinician. Furthermore, the workplace should create space and time for sharing experiences and foster an organizational culture where discussing difficulties is not “frowned upon.” Much of the clinician’s work with families involves helping them redefine their concept of hope. The clinician must also reevaluate their hope. If curing was the initial goal, they must learn to let go and cease trying to control the inevitable. The language used when caring for patients at the end of life must be revisited. Using expressions such as “withdrawing care” or “giving up” reinforces the clinicians’ experience of powerlessness. Using an alternative terminology, such as “redirecting the goals towards comfort care” and “doing as much as possible to ensure quality of life,” is more empowering and also, more importantly, closer to the truth. Rather than escaping into action, clinicians can enhance the quality of their presence. De M’Uzan (1977), a psychoanalyst who worked with patients in the terminal stage, wrote: “The importance of this elementary contact can never be fully measured, even if it is limited to two hands holding each other when the verbal exchange has become impossible” [free translation] (p. 194).^61,58

Conclusion

Despite all efforts and advances in biomedical science, some children will not survive their predicament. Transitioning from curative to palliative care goals is an uncomfortable yet unavoidable experience for children, families, and healthcare providers. The first step is to acknowledge this reality. Despite our discomfort, we as healthcare providers must not shy away from essential discussions about planning end-of-life care. Effective communication models exist and should be taught and utilized. Understanding how children perceive illness and death at their developmental stage can guide the delicate task of including them in these conversations and care planning. Shifting the GOC from curative to palliative is not simply a matter of doing everything or doing nothing, nor does it mean giving up hope. It is about establishing a shared-decision approach to goal-concordant care that considers the non-curative nature of the illness and ensures that children receive compassionate and tailored care. Lastly, healthcare providers must engage in regular self-monitoring of their practice and well-being to remain present and effective while delivering care in such a unique and emotionally challenging context.

Supplemental Material

Supplemental Material - Transitioning From Curative to Palliative Care Goals in Pediatrics: Common Pitfalls and Clinical Pearls

Supplemental Material for Transitioning From Curative to Palliative Care Goals in Pediatrics: Common Pitfalls and Clinical Pearls by Kim Sadler, Saadiya Khan, Amrita Sarpal, Khaled AlGhamdi, Qutaibah Alotaibi, Spandana Rayala, Wejdan Alghamdi in American Journal of Hospice and Palliative Medicine®

Footnotes

Acknowledgments

The authors acknowledge Steven Callaghan for his thoughtful review of the final manuscript.

ORCID iDs

Kim Sadler

Qutaibah Alotaibi

Spandana Rayala

Consent for Publication

The authors grant consent for publication.

Authors contributions

All listed authors contributed to the writing section of this manuscript. The lead author also wrote the introduction and conclusion, as well as formatting the final manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental Material

Supplemental material for this article is available online.

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