Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi Arabia

Abstract

Background: Advances in medicine have altered the progression of several pediatric disorders. However, this progress also comes with medical, economic, and ethical challenges, which can negatively affect children's quality of life. Objective: This study examines the quality of care of children with malignant and non-malignant conditions at the end of life. Design: A two-year cohort retrospective analysis was conducted. Setting/Subjects: The study included all children who died between December 1, 2021, and December 1, 2023, in a tertiary center in Saudi Arabia. Measurements: Data included. information on children’s demographics, medical history, EOL care, and healthcare services utilization. Results: A total of 302 deaths were analyzed, 42% of infants. The most frequent conditions were cardiac diseases (30.1%) and malignancy (20.9%). Two-thirds had a Do-Not-Attempt-Resuscitation (DNAR) (66.6%), with most officialized in the Intensive Care Unit (ICU). Two-thirds had no advanced directives (66.9%). A majority of children died in the ICU (64.6%), with a significant number receiving intensive care until the very end of life. The Palliative Care Team was involved in only 27.9% of cases, with a median of 47 days between referral and death. Conclusion: These findings highlight the paucity of advanced care planning, delays in goals of care discussion at the end of life, and suboptimal use of specialized palliative care resources early in the disease trajectory. These gaps impact children’s symptom burden, family psychological distress, and unattained children and families’ last wishes.

Keywords

do-not-attempt-resuscitation pediatrics advanced directives end-of-life care palliative care critical care

Key Message

Scarcely advanced care planning, delays in discussing goals of care, poor involvement of children and parents in decision-making, and suboptimal use of palliative care resources contribute to more aggressive care at the end of life and continue to affect children’s and families’ well-being.

Advances in medicine have significantly altered the progression of several pediatric disorders.¹ With the discovery of new therapies, children with conditions traditionally associated with poor outcomes can now hope for prolongation of life or even a cure.² Hematopoietic stem cell transplantation and immunotherapy in hematology-oncology have increased survival.³ Genetic disorders, such as Trisomy 13 or 18, used to be considered ‘lethal’, and unilateral Do-Not-Attempt-Resuscitation (DNAR) was considered justifiable.⁴ However, some of these children now live for years with intensive medical treatments.⁴ However, this progress also comes with medical, economic, and ethical challenges, which can negatively affect children’s quality of life. These new therapeutic modalities are growing faster than our understanding of their implications. We witness delays in discussions on advanced directives. An increase in intensive interventions at the end of life (EOL) is seen, including more use of critical care resources.¹ Examples of interventions usually considered aggressive are cardiopulmonary resuscitation, intubation, critical care admissions, and chemotherapy in the last weeks of life. The decision to provide these may stem from physicians’ values or be initiated by parents or other healthcare providers.⁴ Unfortunately, it continues to be a trend despite evidence that it does little to improve the quality of life and does not result in better outcomes.^5,6 Moreover, it has been shown to affect family members and subject them to higher psychological distress.⁷

In Pediatrics, decision-making processes are complex. Children should participate by expressing their assent or dissent. However, in most settings, the child’s legal representative, physicians, and the State decisions usually overrule the child’s wishes.⁸ Instead, decisions are approached by acting in the child’s best interest, weighing the benefits against the anticipated burdens of interventions.⁴ This approach is not exempt from ambiguities. Who should decide what is best for a child? What is considered a benefit? What is an acceptable tradeoff? There is a need for a balance where we engage in shared decision-making to establish goal-concordant care that provides a quality of life to the child while respecting the child’s and their parents’ values.

In Saudi Arabia, a fatwa (legal decision) was released in 1988, serving as a ground for the DNAR policies.⁹ Three physicians must agree that the condition is terminal; the family’s input is encouraged but not legally required.⁹ Some 30 years later, inconsistencies regarding the understanding, process, and implementation remain.⁹ Advanced care planning and goals of care discussions are still not well integrated; the focus remains on a dichotomy between a full resuscitation status and a Do-Not-Attempt-Resuscitation (DNAR) status. Moreover, parents are often excluded from decisions. In a study exploring medical practices in a pediatric ICU, 60% of physicians reported signing a DNAR before informing parents.¹⁰ The practice raises ethical issues, especially in the cases of children with non-curative progressive/non-progressive conditions where death might be years ahead, and new treatments could become available. Parents might also have different views on what constitutes a good quality of life for their children.

There is a paucity of research examining end-of-life (EOL) care across pediatric settings, age, and diagnoses, even less in the Middle East. Existing studies have focused on EOL in the Emergency Room¹¹ and Intensive Care Unit (ICU).^10,12 This study examined the EOL quality of care in pediatrics in a large tertiary care center in Saudi Arabia.

Methods

Design and Setting

A descriptive retrospective study was conducted in a 1200-bed tertiary care center that combines adult and pediatric care in Riyadh, Saudi Arabia. The pediatric care resources include a Children’s Cancer Center, a Heart Center, four Intensive Care Units, a Level-III Neonatal Intensive Care Unit, and a distinct Emergency room. This center does not typically care for trauma patients. The center has two specialized Palliative Care (PC) Teams. Firstly, a nurse-led Pediatric Palliative Care Team (PPCT) is run by two clinical nurse specialists and two specialized medical consultants. Secondly, a physician-led adult palliative care team (APCT), supported by two specialized nurses, delivers care to patients over the age of 14 years. Both provide inpatient consultations, outpatient follow-up, and home visits. Regarding distinctions, the Pediatric service provides bereavement counseling, and the Adult service has 15 dedicated beds for complex EOL care. The pediatric ICU also has a medical consultant with specialized training in PC.

Participants

All children, from birth to 18 years, who died between December 1, 2021, and December 1, 2023, were included. As in most Gulf countries, adult healthcare teams care for children between 14 and 18 years old. There were no exclusion criteria.

Data Sources

Data was retrieved from medical records, including demographics, medical history, EOL care, and healthcare services utilization information up to three months before death. Demographic information includes age, sex, and residence. Medical history comprises diagnosis, comorbidities, and transplant history. EOL care information includes resuscitation status, advanced care planning, surgical interventions, invasive medical devices, symptom burden, and aggressive care in the last 48 hours. Healthcare services utilization includes the frequency and reasons for emergency visits, hospitalization(s), ICU admission(s), and the involvement of PC and Mental Health teams.

In this study, advanced care planning refers to the agreement between the treating team and the child’s legal guardians on priorities and goals of care if the child’s condition deteriorates. It refers to future directives regarding initiating, limiting, withholding, or withdrawing elements of care such as disease-modifying treatments, nutrition support, ventilation support, monitoring activities, and the child’s and guardians’ wishes regarding the best place of care. Compared to other countries, there is no formal legal document for this specific purpose yet. These directives are recorded in the physician’s progress notes.

Ethical considerations

This study received ethical clearance from the Institutional Review Board on January 2, 2024 (Reference #2231467). A waiver for informed consent was granted.

Statistical Analysis

Data was analyzed using STATA version 18 (StataCorp LLC, College Station, TX, USA). Descriptive statistics were used to present the cohort, using means/standard deviations and median/interquartile ranges for continuous variables and counts/percentages for categorical variables. Using the Chi-square test, a univariate analysis was done to investigate factors associated with a DNAR order and those related to advanced care planning. Multivariable logistic regression was carried out to explore these associations further, utilizing a stepwise elimination with a threshold for elimination set at 0.1.

Results

Demographics

A total of 302 deaths were recorded. The median age was one year, 95% CI [0,8]: 17.2% neonates (<28 days) (n = 52), 42% infants (birth to 1 year) (n = 127), 22.5% 1 to 5 year(s) (n = 68), and 35.4% above 5 years (n = 107). Males accounted for 57.9% (n = 175), females for 41.7% (n = 126), and one child had an undetermined/ambiguous sex.

Medical History

Cardiac diseases were the most frequent condition (n = 91; 30.1%), followed by malignancy (n = 63; 20.9%) and genetic disorders (n = 46; 15.2%). About half had chronic comorbidities (n = 140; 46.4%), the most common being seizures (n = 42; 13.9%) and global developmental delay (n = 28; 9.3%). The malignancy subgroup comprised 54% solid tumor (n = 34), 25.4% hematological malignancy (n = 16), and 20.6% primary brain cancer (n = 13). In the last three months, over a third of the whole sample (N = 302) had surgery (n = 113; 37.4%), with curative intent in 60.7% of cases (n = 68) (Table 1).

Table 1.

Medical, Surgical, and Transplant History.

	%	n
Main diagnosis
Cardiac	30.1	91
Malignancy	20.9	63
Solid tumor	54	34
Blood cancer	25.4	16
Primary brain tumor	20.6	13
Metastases	60.3	38
Relapse	36.5	23
Genetic	15.2	46
Immunological	8.6	26
Neurological	6	18
Pulmonary	3	9
Previously healthy (medically free)	2.3	7
Liver diseases	2	6
Kidney diseases	0.7	2
Hematological (non-malignant)	1.3	4
Other disease	7.9	24
Unknown	2	6
Chronic comorbidities
Seizure disorders	13.9	42
Global developmental delay	9.3	28
Gastro-esophageal reflux	3.3	10
Other comorbidities	40.1	121
No or minor comorbidities	53.6	162
Surgical intervention (last 3 months)	37.4	113
Goal of surgery
Curative	60.7	68
Diagnostic	6.3	7
Palliative to facilitate care (eg, gastrostomy)	17.9	20
Palliative for symptom relief (eg, shunt)	15.2	17
Transplant history
Solid organ transplant^a	4.0	12
Period between transplant and death (n = 12)	Mdn = 203 [IQR: 20-635]
Bone marrow transplant (BMT)	12.6	38
Period between BMT and death (n = 38)	Mdn = 122 [IQR: 47-195]

Note. N = 302. KSA = Kingdom of Saudi Arabia.

^aOrgan transplanted: liver = 6; heart = 4; lung = 1; kidney = 1.

End-of-Life Care

Half (n = 167; 52.3%) underwent invasive medical interventions in the last two weeks. The most common was a central line insertion (n = 120; 39.7%) and intubation (n = 67; 22.2%). (Figure 1). Of children with malignancy, 19% had received chemotherapy, including what is considered palliative chemotherapy, during this period. In the last 48 hours, the majority (n = 240; 79.5%) were subjected to intensive interventions: 64.6% ICU stay (n = 195), 57% intubated (n = 172), 45.7% on inotropes (n = 138), 28.1% had CPR performed (n = 85), and 21.5% with total parenteral nutrition (n = 65) (Figure 1). Additionally, 82.1% (n = 248) were receiving intravenous antibiotics. The most frequent symptoms were shortness of breath (n = 92; 30.5%), pain (n = 43; 14.3%), agitation (n = 29; 9.6%), seizures (n = 19; 6.3%), and nausea/vomiting (n = 14; 4.6%). For symptomatic relief, 70.9% (n = 214) had an order of opioids and 53% (n = 160) of sedatives. Interestingly, 63.2% (n = 139) were deeply sedated in an ICU setting at the time of death. Therefore, the majority died in the ICU (n = 225; 74.5%).

DNAR and Advanced Directives

Two-thirds had a DNAR (n = 201; 66.6%), signed with a median of 3 days, 95% CI [1-15] before their death. Most DNARs were officialized in an ICU (n = 151; 81.2%); only 2.2% (n = 4) were discussed in the Outpatient setting (Table 2). A multivariate analysis showed factors positively associated with a DNAR: a PPCT referral (OR: 7, P = .007), immunological disorder (OR: 6.6, P = .024), having advanced directives (OR: 8.7, P < .001), an ICU admission in the last three months (OR: 7.6, P = .008), and death in the ICU (OR: 5.7, P = .021). The following factors were negatively associated: cardiac diseases (OR: 0.3, P = .001), hematological malignancy (OR: 0.1, P = .035), and intensive treatments in the last 48 hours (OR: 0.003, P < .001) (Table 3) (Supplemental file 1).

Table 2.

DNAR, Palliative Care Services, and Referrals.

	%	n
DNAR	66.6	201
Period between DNAR and death (days) (n = 201)	Mdn = 3	[IQR: 1-15]
Setting where DNAR was officialized
ICU	81.2	151
Inpatient ward	15.6	29
Outpatient	2.2	4
Emergency	1.1	2
Palliative care services referral (pediatrics or adult)	27.9	84
Period between referral and death (n = 84)	Mdn = 47	[IQR: 8-160]
Pediatric palliative care team	20.9	63
Physician referral	42.9	27
Nurse referral	22.2	14
Pediatric palliative care team self-screening	34.9	22
Adult palliative CareTeam^a	7.0	21

Note. N = 302. DNAR = do-not-attempt-resuscitation; ICU = intensive care. Referrals are from physicians only and are for patients over 14 years old.

Table 3.

Multivariate Analysis of Factors Associated With a DNAR Order.

Parameters	OR [95% CI]	p
Male sex	1.9 [0.94, 3.77]	0.075
Aggressive treatments (in the last 48 hours)	0.003 [0.0002, 0.05]	<0.001*
Malignancy	10.9 [0.9, 133.26]	0.061
Pediatric palliative care team referral	7 [1.69, 28.91]	0.007*
Genetic diagnosis	3 [0.91, 9.63]	0.072
Immunological diagnosis	6.6 [1.28, 34.21]	0.024*
Cardiac disease diagnosis	0.3 [0.12, 0.57]	0.001*
Death in the ICU	5.7 [1.3, 25.29]	0.021*
Blood cancer	0.1 [0.01, 0.82]	0.035*
ICU admission (in the last 3 months)	7.6 [1.68, 34.18]	0.008*
Presence of advanced directives	8.7 [3.7, 20.41]	<0.001*
Chemotherapy (in the last 2 weeks)	0.1 [0.01, 1.11]	0.061

Note. N = 302. OR = odds ratio; CI = confidence interval; ICU = intensive care unit; DNAR = do-not-attempt-resuscitation. P-values were reported from a multivariable analysis, utilizing stepwise elimination with a threshold for elimination set at 0.1.

*Significance level P < .05.

Two-thirds of children (n = 202; 66.9%) had no advanced care planning. For those who had, the most common were instructions regarding withholding, withdrawing, or limiting disease-modifying treatments (n = 68; 22.5%) or other medical treatments (eg, blood transfusions) (n = 30; 15.6%) (Figure 2). A multivariate analysis showed that children with advanced directives were older (OR: 1.1, P = .031), likely to have a non-curative progressive condition (OR: 2.6, P = .026), had more referrals to the PPCT (OR: 2.1 P = .012) and ICU admissions in the last 3 months (OR: 2, P = .041). However, the association with an ICU death was not significant (P = .068) (Table 4) (Supplemental file 2).

Table 4.

Multivariate Analysis of Factors Associated With Advanced Directives.

Parameters	OR [95% CI]	p
Non-curative progressive conditions	2.6 [1.12, 5.93]	0.026*
Age (in years)	1.1 [1.004, 1.10]	0.031*
ICU admission (in the last 3 months)	2.0 [1.03, 4.00]	0.041*
Pediatric palliative care team referral	2.1 [1.18, 3.88]	0.012*

Note. N = 302. OR = odds ratio; CI = Confidence interval; ICU = Intensive Care Unit. P-values were reported from a multivariable analysis, utilizing stepwise elimination with a threshold for elimination set at 0.1.

*Significance level P < .05.

Differences Between Cardiac, Malignant, and Genetic Conditions

Children with cardiac conditions underwent the most intensive care. The majority died in the ICU (92.3%; n = 84), 74.7% (n = 68) were intubated at the time of death, and CPR was performed for almost half (45.1%; n = 41). DNAR was present in 38.5% (n = 35) and signed with a median of two days before death. Three-quarters had no advanced directives. Children with genetic disorders, with the majority presenting severe neurological impairments and medical complexity at baseline, had slightly less intensive care at the EOL but still overwhelmingly died in the ICU (80.4%; n = 37) with 41.3% (n = 19) intubated. A significant number had a DNAR, though signed with a median of three days before their death. Despite their non-curative conditions and for many progressive, only 37% had advanced directives (n = 17). Children with malignancy had slightly better results regarding EOL care quality. Only 39.7% (n = 25) died in the ICU, with a third intubated, half (48.9%; n = 23) had a DNAR that was signed with a median of 13.5 days before their death, and about 40% had some advanced directives (Table 5).

Table 5.

Comparison of End-Of-Life of Cardiac, Malignant, and Genetic Conditions.

	Cardiac n = 91		Malignancy n = 63		Genetic^a n = 46
	%	n	%	n	%	n
Death in the ICU	92.3	84	39.7	25	80.4	37
DNAR	38.5	35	85.7	54	87	40
DNAR signed in ICU	97.7	34	48.9	23	84.6	33
Between DNAR and death (days)	Mdn = 2 [0,4]		Mdn = 13.5 [1,47]		Mdn = 3 [1,16]
Advanced directives	25.3	23	39.7	25	37	17
Surgery (last 3 months)	59.3	54	36.5	23	28.3	13
Curative intent	90.7	-	30.4	-	38.5	-
Intubated (last 2 weeks)	35.2	32	12.7	8	17.4	8
Intensive interventions (last 48 h)
ICU Stay	84.6	77	36.5	23	60.9	28
Intubated	74.7	68	31.7	20	41.3	19
Inotropes	64.8	59	22.2	14	37	17
CPR	45.1	41	14.3	9	10.9	5
TPN	31.9	29	6.3	4	15.2	7
Enteral feeding	11	10	11.1	7	19.6	9
Dialysis	9.9	4	4.8	3	13	6
No interventions	4.4	4	49.2	31	32.6	15

Note. ICU = intensive care unit; DNAR = do-not-attempt-resuscitation; CPR = cardiopulmonary resuscitation.

^aThis comprises a wide array of conditions but often with a typical presentation of severe neurological impairment, global developmental delay, poor baseline functional status, and enteral feeding.

Specialized Palliative Care Team Involvement

Based on their diagnosis, 94% (n = 284) met the criteria to receive palliative care services. Out of these, 73.2% (n = 208) had a life-threatening condition for which treatment is possible but may fail (Figure 3). However, a referral was made for only 27.9% (n = 84), with a median of 47 days 95% CI [8160] before death. Sixty-three eligible children under 14 years were referred to the PPCT (20.9%), and a third of these referrals were from self-screening children upon admission. Only 7% (n = 21) of eligible adolescents (14 to 18 years) were referred to the PC Adult Team (Table 4).

Healthcare Service Utilization

In the last three months, half (n = 147; 48.3%) had visited the Emergency once, and 23.8% twice (n = 71). Visits were most commonly for respiratory symptoms (n = 72; 49%), fever (n = 55; 34.7%), or gastrointestinal symptoms (n = 36; 24.5%). Two-thirds (n = 179; 67%) were hospitalized once, and 18% (n = 48) twice. Most had been in the ICU at least once during their last three months (n = 241; 79.8%) (Supplemental Table 3).

Discussion

This study aimed to assess children’s and adolescents’ quality of care at the EOL. Cardiovascular, oncological, and genetic conditions were preponderant causes of death, aligning with recent studies reporting how the majority of children living with a life-limiting condition have congenital anomalies or neurological disorders.¹³ Infant deaths represented almost half, also aligning with the usual overrepresentation of this age group globally. Overall, we witness how care, across ages and diagnoses, tends to focus on curative goals until the EOL, and aggressive interventions are frequent. Two-thirds had no advanced care planning. Advanced care planning implies assessing the family’s understanding, hopes, wishes, and values, discussing prognosis and future expectations, exploring options, weighing their benefits vs burden, and offering recommendations.¹⁴ These discussions should occur outside of a clinical or emotional crisis and be offered to all children with a potentially life-limiting condition.¹⁴ More invasive care is provided due to the lack of advanced directives.

About half of the children had a medical device inserted in the last two weeks, and 80% received at least one form of intensive care in the previous 48 hours of life. However, some of these interventions may serve to provide comfort care. For example, a central line may limit anxiety-provoking needlestick procedures and enable efficient medication administration for symptom relief. Pursuing enteral feeding may alleviate a hunger sensation in some children or address parents’ psychological distress. However, nutritional goals at the EOL should be discussed with parents, and the plan should be adjusted to the actual needs so as not to cause adverse effects. Initiating enteral or artificial feeding in the last days of life is seldom indicated. One-fifth underwent an intubation in the previous two weeks, and 57% died while intubated. An explanation may lie in the overall improvement of survival rates for many conditions and parental and healthcare providers’ views that stopping curative treatments is a failure.

Additionally, as a result of the absence of advanced care planning, ICU Teams often receive children amid acute deterioration without clear guidance from Primary Teams on how far to escalate care. In the moment’s urgency, there is seldom time to build a relationship with parents for these crucial discussions. Also, parents may struggle to make difficult emotional decisions during a crisis. As a result, ICU teams often have to proceed initially with an escalation of care. Then, once an intervention such as intubation is in place, withdrawing it is challenging, usually borderline impossible. Establishing advanced directives beforehand helps ensure goal-concordant interventions and enhances satisfaction with care.¹⁵ It provides teams with guidance in these crises.

In our study, children with cardiac conditions underwent the most intensive care, with the majority dying in the ICU, intubated, and CPR performed for almost half. Children with genetic disorders had slightly less aggressive care but still overwhelmingly passed in the ICU, with a significant proportion intubated. Children with malignancy had slightly better EOL care quality results; about 40% had some advanced directives and were more frequently referred to the PPCT. The different illness trajectory patterns can partly explain these findings. Pediatric patients typically experience one of these trajectories: (1) a sudden death, (2) a steady decline (eg, inoperable brain tumor), (3) fluctuating decline (eg, cystic fibrosis), and (4) constant medical fragility (eg, severe neurologic impairment with a predisposition to severe complications).¹⁶ It is easier to recognize EOL in malignancy than in more fluctuating cardiac congenital diseases or slowly declining neurological conditions. There is also a positive bias towards providing PC services to oncology patients instead of patients with other conditions. Parents of children with non-oncological diseases often report more significant unmet needs.¹⁷

Interestingly, almost two-thirds of children were deeply sedated in the ICU at the time of death. In a study led in Spain on children receiving PPCT services, among whom 189 died, 31.7% of children were sedated in the last week, and up to 50.6% in the last 24 hours.¹⁶ However, when analyzing the presence of sedation in the last 24 hours concerning the location of death, 62.9% of those who died in the hospital were sedated, compared to 33.3% at home.¹⁷ The involvement of a PPCT complements the care provided by the primary team.¹⁴ The American Academy of Pediatrics recommends that specialty PPCT “should be consulted for advanced clinical treatments and complicated decision making and for social and spiritual needs beyond what the primary care team can provide”.¹⁸ Family preferences for place of death are more likely to be met for children who have an extended follow-up by the PPCT.¹⁷ In our study, a referral was made in less than a third of cases and for only 7% of adolescents. Several factors may explain this finding, from a lack of awareness of available services, a reluctance to involve another team for concerns over interference, poor knowledge of triggers for optimal timing of a referral, and worry that parents might lose hope. In most hospital settings in KSA, the cutoff age for children is 14 years. Patients from 14 to 18 years old do not experience their illness in the same way as older adults. They have not reached maturity: physical, emotional, social, or cognitive. Our studies found that they received even less support than their younger counterparts.

The quality of care in this study was assessed using some of the most frequent quality indicators (QIs) cited, such as the presence of PC referrals, advanced directives, and invasive interventions at the EOL. Healthcare service utilization and hospital deaths are also considered significant measures.¹⁹ However, these QIs have been designed for adults. Children present a wide array of unique disease presentations. Their disease trajectory tends to be more extended.²⁰ They require age-specific symptom management.¹⁹ Their psychological needs must be addressed developmentally.²¹ Children’s psychosocial experience also tends to be more intricate as it must consider a vast network that includes parents, young siblings, grandparents, and even school-age friends. Parents must engage in repeated complex decision-making processes, and children should be involved to an extent that fits their development. In addition, due to the current lack of PPCT and poor logistic capabilities in many regions (eg, access to medication and home care services), peaceful death at home remains challenging to achieve in many cases. With these differences in mind, QIs for EOL care in children must be better defined. These QIs should also reflect that each center has various patient populations, volumes, acuity, funding, resources, and access to specialized resources.²² For example, in terms of distinction with adult EOL care, a child’s death in a hospital may not necessarily indicate deficient care. Although current data suggest that adults favor receiving EOL care at home, data in pediatrics are less conclusive.¹⁹ Many families opt for the child to be hospitalized for various reasons. Children’s complex needs cannot always be met at home, and there is also the potential of young siblings witnessing the death.¹⁹ If higher ICU admission rates might be acceptable in pediatrics, these highly technological environments must be adjusted at the EOL. Measures that include 1:1 nursing for dying children, private rooms, and open visiting hours should be implemented.¹⁹ In addition, staff shall be trained to provide symptom management, communicate about the goals of care, and guide the family on what to expect as death approaches.

The overall results of our study reflect a strong need to attend to the quality of life of children at the end of life and involve parents in shared decision-making toward goal-concordant care. Similar gaps in children’s care were documented about 20 years ago in countries where pediatric palliative care is now increasingly implemented. Feudtner et al²³ (2002) (USA), in a retrospective study looking into the deaths of 13,892 children and adolescents (birth to 24 years) during three specific years (1991, 1994, 1997), reported back then a high proportion of mechanically ventilated patients and issues to limit and withdraw care representing significant challenges to implement palliative care. Carter et al²⁴ (2004) (USA), in a one-year retrospective analysis of all deaths, reported that the majority of children were dying in the ICU (87%). In most Middle Eastern countries, Pediatric Palliative Care as a discipline did not exist 15 years ago.^25,26 Today, specialized resources remain limited.

Limitations

The retrospective single-center nature of the study limits its generalizability. Another limit lies in the reliance on information available in medical charts. In addition, quality indicators (QIs) assessing care’s psychosocial, spiritual, and cultural aspects were notably absent, and critical components to determine the quality of care may have been overlooked. The strengths of this study lie in the vast array of disease types and trajectories analyzed.

Conclusion

Care, across ages and diagnoses, tends to focus on curative goals until the EOL, and what are considered intensive interventions are frequent. Despite the lack of clear QIs of EOL care in children, we witness the effect of the absence of advanced directives on the intensity of the care. Conversations with children and families should occur ahead of time, outside of a crisis, optimally with the medical team that knows the child best. These discussions are not about telling parents the plan but about finding what is essential for them at this stage and suggesting interventions that consider these preferences. When available, a PPCT should be involved early in the disease trajectory to complement the care and offer a continuity of care from diagnosis to bereavement. Even when early involvement of a PPCT team has not occurred, involvement during EOL care can add value for children, families, and the extended care team.

Supplemental Material

Supplemental Material - Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi Arabia

Supplemental Material for Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi Arabia by Kim Sadler, Lama Altarifi, Steven Callaghan, Saadiya Khan, Khaled AlGhamdi, Tareq Mohammed Alayed, Raghad Alhuthil, Abdulrahman Amer Alshehri, Maryam A. Altassan, Musab Aldhari, Haifaa Hamzah Hussain, and Mohammed Baragaa in American Journal of Hospice and Palliative Medicine®.

Footnotes

Author Contributions

KS: Study design, Data collection, analysis and interpretation, Manuscript redaction, coordination of research team. L.T.: Data collection, Data analysis and interpretation, manuscript redaction. SC: Study design, Data collection, Data interpretation, Manuscript review. K.G.: Data collection, Manuscript redaction and review. S.K.: Data collection, Manuscript review. T.A.: Study design, Data interpretation, Manuscript review. M.A.: Data collection, Manuscript review. R.A.: Data analysis, Data interpretation, Manuscript Review. A.S.: Data collection, Manuscript review. M.T: Data collection, Manuscript review. H.H.: Data collection, Manuscript review. M.B.: Data collection, Manuscript review.

Declaration of Conflicting Interests

The author(s) declare no potential conflicts of interest regarding the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical Statement

ORCID iD

Kim Sadler

Supplemental Material

Supplemental material for this article is available online.

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