Introduction
Pediatric palliative care (PPC) aims to provide the best possible quality of life for children with life-limiting or life-threatening diseases and their families, according to their values and preferences (World Health Organization 1998). Beyond medical symptom management, this also includes support for families making difficult decisions incorporating clinical factors as well as cultural and spiritual conventions (Dreesens et al. Reference Dreesens, Veul and Westermann2019; Streuli et al. Reference Streuli, Widger and Medeiros2019). The literature describes access to PPC services, suggesting significant variation in end-of-life (EOL) care based not only on diverse medical conditions and health system factors (American Academy of Pediatrics 2013; Ananth et al. Reference Ananth, Melvin and Feudtner2015; Curlin et al. Reference Curlin, Chin and Sellergren2006; Feudtner et al. Reference Feudtner, DiGiuseppe and Neff2003, Reference Feudtner, Kang and Hexem2011; Gibson-Smith et al. Reference Gibson-Smith, Jarvis and Fraser2020; Hoell et al. Reference Hoell, Weber and Warfsmann2019; Wiener et al. Reference Wiener, McConnell and Latella2013) but also on local cultural norms (Håkanson et al. Reference Håkanson, Öhlén and Kreicbergs2017; Ntantana et al. Reference Ntantana, Matamis and Savvidou2017). Most of the available data on PPC and EOL care comes from North American and Western European centers; there is a paucity of data regarding care of dying children from non-majority cultures and religions (Curlin et al. Reference Curlin, Chin and Sellergren2006; Håkanson et al. Reference Håkanson, Öhlén and Kreicbergs2017; Ntantana et al. Reference Ntantana, Matamis and Savvidou2017; Wiener et al. Reference Wiener, McConnell and Latella2013).
In Israel, approximately 1000 children die every year (Israel Central Bureau of Statistics 2017). Unique medical and legal norms partially based on Jewish religious law (halacha), as well as patients’ and clinicians’ religious identity, influence clinicians’ input and families’ decision-making around EOL care (Soudry et al. Reference Soudry, Sprung and Levin2003).
Most residents of Israel are of either Jewish (75%) or Arab Muslim (18%) ethnicity, and a significant proportion defines themselves as religious: 92% of Muslims and 55% of Jews, among whom approximately one-quarter identify as haredi (ultra-Orthodox, typically more strictly observant) (Israel Central Bureau of Statistics 2018; Weiss Reference Weiss2022). In Jerusalem specifically, the Jewish population is more religious overall (approximately two-thirds identify as religious, of whom half identify as haredi) (Yaniv et al. Reference Yaniv, Haddad and Assaf-Shapira2022). While there is significant diversity among different groups of religious and haredi Jews, their approach to EOL care is similar as it is based on established principles in halacha (Kaye Reference Kaye2009).
In this paper, we describe the medical and psychosocial EOL care of pediatric patients who were treated at the Wilf Children’s Hospital at Shaare Zedek Medical Center (SZMC) in Jerusalem, a large tertiary-care hospital serving approximately one million residents of the greater Jerusalem area. PPC is a relatively new field in Israel, where availability of PPC services is limited (Bentur et al. Reference Bentur, Laron and Azoulay2015; Golan et al. Reference Golan, Bierlorai and Grebler2008; Laronne et al. Reference Laronne, Granek and Wiener2021a, Reference Laronne, Granek and Wiener2021b; Shaulov et al. Reference Shaulov, Baddarni and Cherny2019; Silbermann et al. Reference Silbermann, Arnaout, Sayed, Knapp, Fowler-Kerry and Madden2012). A multidisciplinary PPC team established at SZMC in 2018 operates in inpatient, outpatient, and home hospice settings. The PPC team includes 2 senior physicians (a pediatric oncologist and a pediatric intensivist with palliative care training), 2 nurses with oncology and palliative care training, 2 social workers, allied health professionals, a psychologist, and child-life specialists. Children with life-threatening or life-limiting conditions and medical or psychosocial complexity are referred from inpatient and outpatient services. The PPC team is presented as assisting children with complex or life-limiting conditions and their families, with symptom management, decision-making, and psychosocial support.
We conducted this study to better characterize EOL care of children who died in the past 5 years at SZMC, comparing those followed by the PPC team and those not followed and comparing between groups based on religious affiliation.
Methods
We conducted a retrospective chart review of electronic medical records for all pediatric patients (aged 0 to 18 years) who died while admitted to inpatient units at SZMC, as well as those who died in home hospice while followed by the PPC team, during the period between January 1, 2017, and December 31, 2021. We excluded patients who died in the neonatal intensive care unit (NICU) and those who died before 1 month of age; this is because the Israeli law guiding care of terminally ill patients (Steinberg and Sprung Reference Steinberg and Sprung2007) explicitly does not discuss EOL care of neonates, and the SZMC NICU has a separate team (physicians, nurses, social worker, and psychologist) who support dying patients and their families. We also excluded patients who died during an admission that lasted under 24 hours, as there was insufficient time for PPC team involvement (except for those who were in home hospice followed by the PPC team and were brought to hospital near the time of death, who remained in the study).
We collected data on the following variables for each patient: demographics (age, sex, ethnic and religious affiliation, area of residence, and living arrangement – home or long-care facility); medical history (primary diagnosis, medical devices, and number of medications at home prior to final hospitalization); advance directives prior to final admission (specifically Do Not Intubate and Do Not Resuscitate orders); whether the patient was followed by the PPC team in hospital and/or in home hospice; clinical information concerning the final admission (diagnosis on admission, length of stay in hospital and in the pediatric intensive care unit (PICU), medical and pharmacological interventions, and invasive procedures); and clinical outcomes documented at EOL (during the final 48 hours) including location of death (in hospital or home hospice), whether EOL discussions or visits by psychosocial staff were documented, and whether certain procedures were performed (inotropic medication or mechanical ventilation, pain scoring, and enteral feeding). Patients’ families’ ethnic and religious identity were determined using information available in the medical record and coded as “unspecified” in the few cases where such determination was not possible. Of note, we classified all Muslim Arabs as religious since the vast majority identify as such (Israel Central Bureau of Statistics 2018; Weiss Reference Weiss2022).
We used descriptive statistics alone to evaluate patient characteristics and compare patients who died with PPC team follow-up versus those without and by religious and cultural identification (due to small cohort size limiting statistical power and thus the meaningfulness of findings of statistical significance).
Results
We identified a total of 78 cases meeting the criteria for this study (Figure 1). Demographics (age at death, gender, ethnic and religious affiliation, and place of residence) are described in Table 1. The most common categories of primary diagnosis were oncologic diseases (23%) and chromosomal or multisystem genetic disorders (18%) (Table 2). Among patients included in the study, 36 (46%) were followed by the PPC team, of whom 19 (53%) were followed in hospital and 17 (47%) in home hospice (Table 3).
Inclusion of cases in the study.
Demographic characteristics of patients included in the study
Clinical characteristics of pediatric EOL patients prior to final admission
a Device dependence includes noninvasive respiratory support, tracheostomy, gastrostomy, nephrostomy, ventriculo-peritoneal shunt, or central venous line.
Care during final admission prior to death
a Any of CT, MRI, radiologist-performed ultrasound, or fluoroscopy.
b Any of gastrostomy, arterial line, central line, umbilical line, or drain insertion.
On final admission prior to death, a larger percentage of patients followed by the PPC team had advanced care directives than those not followed by the team. During the final admission, patients followed by the PPC team underwent comparatively fewer diagnostic exams, invasive procedures, and resuscitative measures; received more sedatives and analgesics; received more psychosocial support (hospital-provided psychologists, spiritual care, or complementary-alternative medicine); spent fewer days in PICU; and fewer died in PICU (Tables 3 and 4).
Patient characteristics and care at the time of death
a Any of psychologist, social worker, or educational staff.
Ethnic and religious affiliation
Three-quarters of patients were identified as religious Jewish or Muslim (Table 5). Similar proportions of religious Jews, secular Jews, and Arab Muslims were provided care by the PPC team (46%, 50%, and 50%, accordingly) and had advance directives documented on admission (27%, 33%, and 27%, accordingly). There were differences in medical treatment, communication, and psychosocial support given to each group (detailed in Table 5). Of note, overall fewer religious Jewish patients had an EOL conversation documented in the chart in the final 48 hours of life (33%) compared to secular Jewish (50%) or Muslim (46%) patients.
Care during final admission prior to death, by religious affiliation
a Any of CT, MRI, radiologist-performed ultrasound, or fluoroscopy.
b Any of gastrostomy, arterial line, central line, umbilical line, or drain insertion.
c Any of psychologist, social worker, or educational staff.
Discussion
We summarize our experience in the care of pediatric patients at the EOL in a medical center with a majority religious Jewish and Muslim population. Most literature on EOL care and preferences of families, particularly in pediatric patients, originate from North America and Europe. While patients’ cultural and religious norms are understood to affect patients’ and medical teams’ approaches to EOL care (Curlin et al. Reference Curlin, Chin and Sellergren2006; Ntantana et al. Reference Ntantana, Matamis and Savvidou2017; Soudry et al. Reference Soudry, Sprung and Levin2003; Wenger and Carmel Reference Wenger and Carmel2004; Wiener et al. Reference Wiener, McConnell and Latella2013), our patients have limited representation in the literature; few studies describe perception of EOL treatment for Muslim (Chakraborty et al. Reference Chakraborty, El-Jawahri and Litzow2017; Choudry et al. Reference Choudry, Latif and Warburton2018; Dabar et al. Reference Dabar, Akl and Sader2021; Eltaybani et al. Reference Eltaybani, Igarashi and Yamamoto-Mitani2020; Gustafson and Lazenby Reference Gustafson and Lazenby2019; Leong et al. Reference Leong, Olnick and Akmal2016; Muishout et al. Reference Muishout, van Laarhoven and Wiegers2018) or religious Jewish (Baeke et al. Reference Baeke, Wils and Broeckaert2011; Blinderman Reference Blinderman2007; Choudry et al. Reference Choudry, Latif and Warburton2018; Kinzbrunner Reference Kinzbrunner2004; Loike et al. Reference Loike, Gillick and Mayer2010) patients and families.
Religious Jews follow proscribed laws (halacha) that govern all aspects of life, including its end; in general, all measures are to be taken to preserve health and find cure to a disease, and it is forbidden to hasten death (Baeke et al. Reference Baeke, Wils and Broeckaert2011; Choudry et al. Reference Choudry, Latif and Warburton2018; Kaye Reference Kaye2009). On the other hand, most Jewish traditions permit alleviation of pain and suffering, even if this may inadvertently shorten the life of a person who is dying anyway (Choudry et al. Reference Choudry, Latif and Warburton2018; Kaye Reference Kaye2009). Religious Jews will most often look to a posek (learned scholar acting as decisor) to provide or assist in decision-making in keeping with halacha (Leshem Reference Leshem2009).
In Islam, there are multiple schools of thought with no singular formal guidance on EOL care (Choudry et al. Reference Choudry, Latif and Warburton2018; Muishout et al. Reference Muishout, van Laarhoven and Wiegers2018). The general belief appears to be that death should not be hastened but that physicians may be in the best position to decide when life-saving therapy should be initiated; it is also believed that if death is inevitable, unnecessary interventions should be avoided (Chakraborty et al. Reference Chakraborty, El-Jawahri and Litzow2017). There are varying beliefs on whether suffering is redemptive (Gustafson and Lazenby Reference Gustafson and Lazenby2019) or should be relieved if possible (Leong et al. Reference Leong, Olnick and Akmal2016).
Nuanced religious norms make EOL decision-making and care for Jewish and Muslim patients a craft that requires delicate conversations that account for families’ beliefs; their dependence on their rabbi, imam, or other religious leader for guidance; and their wishes for their child to not suffer while also keeping with religious tradition. The existing palliative care literature paints Jewish and Muslim traditions on EOL care in broad strokes, leaving open questions into particulars about withholding treatment, giving terminal sedation, and providing psychosocial and spiritual support.
Our cohort is similar in general demographic makeup to the population of Jerusalem (Israel Central Bureau of Statistics 2018; Yaniv et al. Reference Yaniv, Haddad and Assaf-Shapira2022). Our results reflect some of the known beneficial effects of palliative care in a unique cultural context that may constrain some aspects of EOL care. Similar rates of patients were treated by the PPC team across cultural and religious backgrounds; patients followed by the PPC team had better symptom management, more psychological and spiritual support, more advanced care directives, and a supportive framework that facilitated being at home at the time of death if the patient and their family preferred so.
We observed that religious Jewish and Muslim families engaged less in formal EOL counseling and less withholding of invasive care at EOL. However, they were no less likely to seek out and benefit from a palliative framework to maximize their quality of life, in keeping with the mission of palliative medicine to give care according to the patient’s values and wishes. Notably, we saw a greater difference in invasive interventions at the EOL between patients with PPC team follow-up versus those without, than between religious and cultural groups.
Limitations
Although demographically similar, our relatively small cohort may not necessarily reflect the broader population in Jerusalem and in Israel. Small cohort size hindered our ability to meaningfully evaluate the statistical significance of differences or associations between groups. As a retrospective chart review relying on documentation, our data may exclude undocumented but potentially meaningful interactions around EOL, as well as any description of patients’ and families’ experiences, which are essential to understanding how their cultural and spiritual background influences EOL care and decision-making processes.
Our study is novel in its description of EOL care for pediatric patients from Jewish and Muslim families, since most of the existing literature comes from North American and European countries where these are minority groups. Our findings can benefit palliative care teams who may not be as familiar with these patients’ traditions and values. Although EOL care may look different for religious Muslim or Jewish patients (specifically with respect to withdrawal or limitation of life-sustaining therapies), our findings show that these populations are no less likely to utilize PPC services for providing symptom relief, as well as emotional and spiritual support. Palliative care teams could work closely with religious leaders to better adapt EOL care to these patients’ cultural and religious values. More studies are required to understand the decision-making processes around EOL care for both patients and medical staff with respect to Jewish and Muslim cultural and religious contexts.
Conflicts of interest
All authors declare that they have no competing interests.
Ethical approval
This study was approved by the SZMC institutional review board (0259-20-SZMC).
