End-of-Life Care Patterns Associated with Pediatric Palliative Care Among Children Who Underwent Hematopoietic Stem Cell Transplant

Abstract

Background

Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions although with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown.

Objective

To evaluate whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive

Methods

Medical records of children who underwent SCT at Boston Children’s Hospital/Dana-Farber Cancer Institute for any indication from September 2004-December 2012 and did not survive were reviewed. Child demographic and clinical characteristics and PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC group) were compared with those who did not (non-PPC group).

Results

Children who received PPC consultation (n=37) did not differ from the non-PPC group (n=110) with respect to demographic or clinical characteristics, except they were more likely to have undergone unrelated allogeneic SCT (PPC=68%, non-PPC=39%, p=0.02) or to have died from treatment-related toxicity (PPC=76%, non-PPC=54%, p=0.03). PPC consultation occurred at a median of 0.7 (interquartile range [IQR] 0.4–4.2) months before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non-pain symptom management (70%).

Prognosis discussions (i.e., the likelihood of survival) occurred more commonly in the PPC group (PPC=97%, non-PPC=83%, p=0.04), as did resuscitation status discussions (PPC=88%, non-PPC=58%, p=0.002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 (IQR 4–26) days prior to death compared to 2 (IQR 1–13) days in the non-PPC group and for resuscitation status a median of 7 (IQR 3–18) days compared to 2 (IQR 1–5) in the non-PPC group (p<0.001 for both of the timing of prognosis and resuscitation status discussions). The PPC group was also was more likely to have resuscitation status documented, (PPC=97%, non-PPC=68%, p=0.002).

With respect to patterns of care, compared to non-PPC, the PPC group was as likely to die in a medicalized setting (i.e. the hospital) (PPC=84%, non-PPC=77%, p=0.06) or have hospice (PPC=22%, non-PPC=18%, p=0.6). However, among children who died in the hospital, those who received PPC were more likely to die outside the ICU (PPC=80%, non-PPC=58%, p=0.03). In addition, the PPC group was less likely to receive intervention-focused care such as intubation in the 24 hours prior to death (PPC=42%, non-PPC=66%, p=0.02) or cardiopulmonary resuscitation (CPR) (PPC=3%, non-PPC=20%, p=0.03) at EOL. Children who received PPC for at least a month were more likely to receive hospice (PPC=41%, non-PPC=5%, p=0.01).

Conclusion

Children who underwent SCT and do not survive were likely to die in a medicalized setting, irrespective of PPC. However, PPC was associated with less intervention-focused care and greater opportunity for EOL communication and advance preparation. In the intense, cure-oriented SCT setting, PPC may facilitate advance care planning in this high-risk population.

Introduction

SCT offers the possibility of cure for children with high-risk malignancies and other life-threatening conditions. This potential for cure, however, involves intensive and demanding therapy that can result in physical and psychological distress for the child.^1–4 Families of children who undergo SCT may also suffer,^5–8 especially when the child dies from treatment complications or their underlying condition.^9–11

Given the medical and psychological intensity of SCT it is offered in the context of curative intent. Thus for children who undergo SCT but do not survive, this strong focus on cure, combined with the uncertainty in predicting any one individual’s course, may result in greater use of intensive disease-directed therapy even at the end of life.⁹ There is often little opportunity for discussion about the child’s prognosis or advance preparation for the child’s death.⁹ Under such circumstances, parents of children who die after SCT are less prepared and have worse psychological outcomes than bereaved parents of children with cancer who did not undergo SCT.^10,11

PPC strives to prevent or ease distress and maximize quality of life for children with life-threatening conditions as well as their families throughout the trajectory of the child’s illness.¹² It also supports delineation of goals of care and promotes medical care that is aligned with these goals, whether the goal is cure or otherwise. To meet these aims, PPC teams seek to foster clear and timely communication, while supporting decision-making and preparation for potential outcomes, whatever they may be.¹²

While PPC need not be reserved for EOL, it is associated with improved EOL outcomes for children with advanced cancer. For example, access to PPC is associated with more frequent and earlier discussions about hospice and resuscitation status,^13–15 greater parent preparation and less child suffering at EOL.¹³ It is also associated with less utilization of intensive care at end of life, with fewer deaths occurring in the ICU.^13,16,17

SCT, however, has distinctive features, including a strong focus on cure, use of intensive therapy with high risk for treatment-related toxicity and unpredictable complications. In such a setting the relationship between PPC and EOL outcomes may be different. In an analysis of a large administrative hospital dataset, Keele and colleagues found that as a group, hospitalized children with diseases of the respiratory, nervous, and lymphatic/hematopoietic system who received PPC had fewer invasive interventions at EOL.¹⁷ Beyond this study, the role of PPC in the care of children who undergo SCT and do not survive is unexplored. To address this we sought to evaluate the EOL outcomes of children who underwent SCT at our institution and did not survive, comparing those who received PPC with those who did not.

Methods

Study Population

This was a retrospective chart review of all children who underwent SCT at Boston Children’s Hospital/Dana-Farber Cancer Institute for any indication between September 2004 and December 2012 and did not survive. Children were included irrespective of cause of death. The Dana-Farber Cancer Institute Institutional Review Board approved the study and waived the requirement for informed consent.

Data Collection

Demographic and clinical (e.g. diagnosis, transplant type) characteristics were abstracted from the medical record (which transitioned from paper charts to an electronic medical record during the initial years of the review period). Recorded diagnoses were categorized as follows: Hematologic malignancy: acute lymphoblastic leukemia, acute myelogenous leukemia, chronic myelogenous leukemia, juvenile myelomonocytic leukemia, non-Hodgkin lymphoma; Solid/brain tumor: neuroblastoma, brain tumor; Non-malignancy: aplastic anemia, Schwachmann-Diamond Syndrome, thalassemia, immunodeficiency syndrome, metabolic condition, hematophagocytic lymphohistiocytosis. Characteristics of death (e.g., timing, cause and location) as well as EOL care (e.g., hospice use, whether resuscitation was documented or was attempted) were also recorded. In addition, charts were reviewed in detail to determine whether key discussions (regarding prognosis [i.e., the likelihood of survival] or resuscitation status) occurred and the timing of discussions. For children who received PPC, the consultation was documented on a consult note template that included a section for an assessment and recommendations for the following topics: “goals of care,” decision-making/advance care planning,” “symptom management” and “support for the child and family, including psychosocial and spiritual support, home services, and quality of life.” Features of the consultation (e.g., reason for and timing of consultation) and follow-up care from the PPC team (e.g., number of visits) were also abstracted from the medical record. Abstracted data were entered via a REDCap interface. Accuracy of data was confirmed by a second abstraction performed by the principal investigator (CKU). Data summary tables were also reviewed to ensure full integrity of the data.

Statistical Analysis

Statistical analyses were performed using the SAS statistical package version 9.3 (SAS Institute, Inc., Cary, NC). Demographic and clinical characteristics of the study sample and characteristics of the PPC consultations that occurred were summarized with descriptive statistics. Patterns of EOL care for children who received PPC (PPC group) were compared with those who did not receive PPC (non-PPC) utilizing Fisher’s exact test or Wilcoxon rank sum test for categorical or continuous variables, respectively. To assess potential impact of PPC duration on EOL outcomes, analyses were repeated within the PPC group, comparing those who received PPC < one month with those who received it ≥ one month. Statistical tests were two-sided and considered statistically significant for p <0.05.

Results

Study Sample

A total of 147 patients underwent HSCT between September 2004 and December 2012 and subsequently died. One quarter of them (n=37) received PPC consultation. Table 1 presents the demographic, clinical and EOL characteristics of the entire sample as well as the PPC and non-PPC groups. The groups were similar though the PPC group had more children who underwent allogeneic unrelated donor transplant than the non-PPC group. In addition, deaths in the PPC group were more likely to involve treatment-related toxicity (PCC=76%, non-PCC=54%, p=0.03) as opposed to relapse.

Table 1.

Study sample characteristics (N=147)

	Total (N=147)*	Non-PPC (N=110)**	PPC (N=37)***	P value
Demographic and Clinical Characteristics
Age at SCT (median years [IQR])	10.3 (4.7–15.4)	9.4 (4.6–15.4)	12.5 (7.3–16.2)	0.1
Time from diagnosis to SCT (median months [IQR])	8.6 (5.2–35.1)	7.6 (4.5–35.1)	9.6 (6.1–33.5)	0.1
Female sex, n (%)	71 (48%)	51 (46%)	20 (54%)	0.5
White race, n (%)	109 (74%)	79 (72%)	30 (81%)	0.4
Non-Hispanic,† n (%)	97 (87%)	67 (88%)	30 (86%)	0.8
Diagnosis, n (%)				0.1
Hematologic malignancy	96 (65%)	68 (62%)	28 (76%)
Solid/brain tumor	22 (15%)	20 (18%)	2 (5%)
Non-malignancy	29 (20%)	22 (20%)	7 (19%)
Transplant type, n (%)				0.02
Autologous	26 (18%)	24 (22%)	2 (5%)
Allogeneic: matched related	33 (22%)	26 (24%)	7 (19%)
Allogeneic: all other	68 (46%)	43 (39%)	25 (68%)
Cord blood	20 (14%)	17 (15%)	3 (8%)
End-of-Life Characteristics
Age at death (median years [IQR])	10.7 (5.7–16.1)	10.2 (5.3–16.0)	13.5 (7.8–17.2)	0.1
Duration of survival after diagnosis (median months [IQR])	21.6 (11.3–50.3)	21.8 (10.9–48.6)	20.3 (12.1–54.8)	0.5
Duration of survival after SCT (median months [IQR])	6.9 (2.7–14.8)	6.8 (2.8–15.5)	7.8 (2.7–12.2)	1.0
Cause of death,†† n (%)				0.03
Relapse	59 (40%)	50 (46%)	9 (24%)
Treatment-related toxicity/both	87 (60%)	59 (54%)	28 (76%)

^*Denominator=147 in this column unless stated otherwise

^**Denominator=110 in this column unless stated otherwise

^***Denominator=37 in this column unless stated otherwise

^†For ethnicity, data were available for n=76 non-PPC and n=35 PPC

^††For cause of death, data were available for n=109 non-PPC and n=37 PPC

Abbreviations: PPC=pediatric palliative care; SCT=stem cell transplantation; IQR=interquartile range

For both groups, most children died after a prolonged illness course (for PPC, a median of 21.8 (IQR 10.9–48.6) months after diagnosis, for non-PPC, 20.3 [IQR 12.1–54.8] months) and several months after SCT (for PPC a median of 7.8 [IQR 2.7–12.2] months after SCT, for non-PPC, a median of 6.8 [IQR 2.8–15.5] months.

PPC Consultation Characteristics

Among the 110 children who died, 37 received PPC. Rates of PPC consultation increased over the study period, from 5 consultations over the first three years to 17 consultations over the last 3 years. Consultations occurred a median of 0.7 (IQR 0.4–4.2) months prior to death (Table 2). Among all consults, ten (27%) occurred prior to the day of stem cell infusion (day 0). These pre-SCT consults took place a median of 6.5 (IQR 5–16) days before day 0. Neither duration of survival after diagnosis nor duration of survival after SCT were associated with PPC consultation.

Table 2.

Characteristics of Initial Pediatric Palliative Care Consultations (N=37)

Child age at PPC consultation (median years [IQR])	12.9 (7.7–16.7)
Time from diagnosis to PPC consultation (median months [IQR])	18.3 (10.4–35.3)
Issues discussed, n (%)
Goals of care/decision-making	34 (92%)
Psychosocial support	31 (84%)
Pain management	26 (70%)
Non-pain symptom management	24 (65%)
Coordination of care/home care	22 (59%)
Child/family QOL	8 (22%)
Advance care planning	8 (22%)
Decision to proceed with SCT	3 (8%)
Time from PPC consultation to death (median months [IQR])	0.7 (0.4–4.2)

Abbreviations: PPC=pediatric palliative care; SCT=stem cell transplantation; IQR=interquartile range; QOL=quality of life

During the initial consultation meeting, goals of care/decision-making and psychosocial support were discussed in the vast majority of cases (92% and 84%, respectively). Pain management and non-pain symptom management were also frequently discussed (65% and 70%, respectively). During three of the ten consults that occurred before day 0, the family’s decision to pursue SCT, and their perspectives on the relative risks and benefits of SCT, were explored. Although the families had already made the decision to move forward with transplant they did discuss their goals underlying their decision and their hopes and fears about what might lie ahead.

Over the course of 3 months following the initial consult, the PPC team visited 25 of the 37 children in the PPC group on an inpatient basis, with a median of 8 (IQR 5–18) visits. Outpatient visits occurred much less frequently. In fact, only 4 children had an outpatient PPC visit (range 1–5 visits) in the 3 months following the initial PPC consultation. There were ten children who did not have a follow-up visit (either inpatient or outpatient) after the initial PPC consultation. These children died shortly (usually within days) after the first PPC consultation.

End-of-Life Care and Pediatric Palliative Care Consultation

Communication at End of Life

For the vast majority of children in the PPC group, discussions regarding prognosis (i.e., the likelihood of survival) were held and such discussions occurred more commonly than in the non-PPC group (PPC=97%, non-PPC=83%, p=0.04) (Table 3). These discussions also occurred earlier in the PPC group (median=8 days before death [IQR 4–26], than in the non-PPC group (median=2 [IQR, 1–13] days, p<0.001).

Table 3.

End-of-Life Care by Pediatric Palliative Care Consultation

	All (N=147)*	Non-PPC (N=110)**	PPC (N=37)***	P value
Prognosis discussion
Documented discussion, n (%)	96 (87%) (N=110)	62 (83%) (N=75)	34 (97%) (N=35)	0.04
Timing of discussion (median days before death [IQR])	4 (1–18) (N=96)	2 (1–13) (N=75)	8 (4–26) (N=35)	<0.001
Resuscitation status discussion
Documented discussion, n (%)	71 (68%) (N=105)	41 (58%) (N=71)	30 (88%) (N=34)	0.002
Timing of discussion (median days before death [IQR])	3.5 (1–13) (N=70)	2 (1–5) (N=71)	7 (3–18) (N=34)	<0.001
End-of-Life Care Characteristics
Order documenting resuscitation status, n (%)	56 (80%) (N=70)	27 (68%) (N=40)	29 (97%) (N=30)	0.002
CPR attempted, n (%)	15 (14%) (N=104)	14 (20%) (N=71)	1 (3%) (N=33)	0.03
Intubated in last 24 hours of life, n (%)	66 (58%) (N=113)	51 (66%) (N=77)	15 (42%) (N=36)	0.02
Hospital deaths that occurred in ICU	71 (58%) (N=123)	53 (80%) (N=66)	18 (58%) (N=31)	0.03
Death at home (versus hospital), n (%)	71 (73%) (N=97)	20 (23%) (N=86)	6 (16%) (N=37)	0.5
Location of death, n (%)				0.06
Home	26 (21%)	20 (23%)	6 (16%)
Hospital (non-ICU)	26 (21%)	13 (15%)	13 (35%)
ICU	71 (58%) (N=123)	53 (62%) (N=86)	18 (49%) (N=37)
Hospice involved, n (%)	20 (19%) (N=105)	12 (18%) (N=68)	8 (22%) (N=37)	0.6

^*Denominator=147 in this column unless stated otherwise

^**Denominator=110 in this column unless stated otherwise

^***Denominator=37 in this column unless stated otherwise

Abbreviations: PPC=pediatric palliative care; IQR =interquartile range; ICU=intensive care unit; CPR=cardiopulmonary resuscitation

Similarly, discussions regarding resuscitation status were more common in the PPC group (PPC=88%, non-PPC=58%, p=0.002) and also occurred earlier (PPC median=7 days before death [IQR 3–18], non-PPC median=2 [IQR 1–5] days prior death, p<0.001). Documentation of resuscitation status was also more common in the PPC group (PPC=97%, non-PPC=68%, p=0.002).

Patterns of End-of-Life Care

Most children received highly medicalized (e.g. hospital-based) care at end of life (Table 3). Home deaths and hospice involvement were relatively rare for both groups. PPC consultation was not associated with less medicalized care such as death at home (versus hospital) or hospice involvement.

While children who received PPC did not receive less medicalized care, they did receive less intervention focused care (e.g. in the ICU, receiving treatments aimed at extending life) at EOL. Among children who died in the hospital (a medicalized setting), those who received PPC were less likely to die in the ICU (PPC=58%, non-PPC=80%, p=0.03). The PPC group was less likely to be intubated in the 24 hours prior to death (PPC=42%, non-PPC=66%, p=0.02). Only 3% of the children in the PPC group underwent CPR compared to 20% in the non-PPC group (p=0.03).

Duration of Pediatric Palliative Care

With respect to PPC duration, we compared those who received PPC for < one-month to those who received PPC for ≥ one-month. Children who received PPC for at least a month were more likely to receive hospice (Table 4). There was a trend towards fewer hospital (versus home) deaths in those who received PPC ≥ one month. No other statistically significant differences were detected between the PPC < one-month and PPC ≥ one-month groups.

Table 4.

Patterns of End-of-Life Care by Duration of Pediatric Palliative Care (n=37)

	All (N=37)*	PPC <1 month (N=20)**	PPC ≥1 month (N=17)***	P value
Documented prognosis discussion, n (%)	34 (97%) (N=35)	19 (100%) (N=19)	15 (94%) (N=16)	0.5
Documented resuscitation status discussion, n (%)	30 (88%) (N=34)	17 (89%) (N=19)	13 (87%) (N=15)	1.0
Order documenting resuscitation status, n (%)	29 (97%) (N=30)	16 (94%) (N=17)	13 (100%) (N=13)	1.0
CPR attempted, n (%)	1 (3%) (N=33)	1 (5%)	0 (0%) (N=13)	1.0
Intubated in last 24 hours of life, n (%)	15 (42%) (N=36)	9 (45%)	6 (38%) (N=16)	0.9
Location of death, n (%)				0.1
Home	6 (16%)	1 (5%)	5 (29%)
Hospital (non-ICU)	13 (35%)	9 (45%)	4 (24%)
ICU	18 (49%)	10 (50%)	8 (47%)
ICU deaths (among all hospital deaths), n (%)	18 (58%) (N=31)	10 (53%) (N=19)	8 (67%) (N=12)	0.5
Death at home (versus hospital), n (%)	6 (16%)	1 (5%)	5 (29%)	0.08
Hospice involved, n (%)	8 (22%)	1 (5%)	7 (41%)	0.01

^*Denominator=37 in this column unless stated otherwise

^**Denominator=20 in this column unless stated otherwise

^***Denominator=17 in this column unless stated otherwise

Abbreviations: PPC=pediatric palliative care; CPR=cardiopulmonary resuscitation; ICU=intensive care unit

Discussion

In this study we present the first report of the potential impact of palliative care on EOL care patterns in the SCT population, through a comparison of children who did and did not receive palliative care. We found that children who underwent SCT and did not survive were very likely to die in a medicalized setting (e.g. in the hospital, not at home, without hospice involvement). Our findings are consistent with those of other studies,^9,18 and likely reflect a strong focus on curative/restorative care that prevails in SCT even during the EOL period.⁹ It may also in part reflect pediatric practice more broadly. Goals of cure/life-extension and high use of curative/restorative treatments at EOL are not unique to the SCT setting, and have been demonstrated in other pediatric oncology, transplant and palliative care populations.^{19,20,21,22,23–25} These considerations may explain why PPC consultation was not associated with less medicalized (i.e. home-based, with hospice) care in this population.

We did, however, find that PPC consultation was associated with a decrease in intervention-focused medical care such as intubation or CPR at end of life, and among children who died in the hospital, fewer deaths in the ICU. At the same time, PPC was not associated with decreased duration of survival. There has historically been concern that palliative care involvement might shorten survival. We found no evidence of this. Some studies in adults with advanced cancer have actually demonstrated prolonged survival with palliative care involvement.^26–28 Whether palliative care is associated with improved survival in the SCT setting remains to be seen.

Interestingly, the PPC group had more children who died of treatment-related toxicity. In the setting of treatment-related toxicity, continuation of intensive life-prolonging treatment is often spurred by the greater uncertainty inherent in non-relapse deaths and fueled by a particularly strong desire to reverse problems due to the treatment itself.²⁹ In light of these dynamics, the possibility that PPC might still be associated with decreased intensity of care in the non-relapse EOL setting is particularly noteworthy.

Why might PPC be associated with a decrease in intervention-focused care at EOL but not medicalized care (e.g. hospital-based) in this population? There are several possible explanations. First, it may be that even if goals of care have shifted to favor less intervention-focused care, other factors may still lead to more medicalized care at EOL for this particular population. For example, intensive medical management for symptom control (e.g. transfusions, intensive nursing care) might preclude care at home, especially if it is far from the transplant center. Blended goals in which some treatments (e.g. antibiotics) are pursued even while intensive interventions (e.g. intubation) are not might contribute to hospital-based care. Second, many children who undergo SCT (and their families) develop strong connections with hospital staff over the course of prolonged hospitalization, and may choose to remain in this familiar setting where they find reassurance and comfort. Third, PPC may be associated with less medicalized care at EOL if PPC is involved early enough to make an impact. The fact that there was increased hospice involvement and a trend towards more home deaths among children who received PPC for ≥ one month compared with those who received it < one month supports this notion that if given sufficient time PPC may influence care. In this sense earlier PPC would benefit families by providing more opportunity to explore possible types of care and to determine which is most consistent with their goals of care.

The differences in both the incidence and timing of prognosis and resuscitation status discussions between the PPC and non-PPC groups are also striking. A key element of PPC is the promotion of communication to support prognostic understanding, articulation of goals of care and elicitation of patient/family priorities and preferences. Although it cannot be proven by this retrospective study, more frequent and earlier discussions may account for the differences in EOL care that were observed in the PPC group. In the advanced cancer population, earlier physician and parent recognition is associated with a stronger emphasis on treatment aimed at reducing suffering³⁰ and in the HSCT population, less child suffering.⁹

Even in the PPC group, however, discussions occurred just days before the child’s death. While reasons for delayed discussions in the seriously ill pediatric population have been identified³¹ additional research is needed to elucidate specific factors extant in this particular population. Strategies to support communication with parents are essential as parents highly value communication and information from clinicians and desire more of it.^8,32,33 Furthermore it permits parents to prepare for their child’s EOL, a key factor in decreasing parent distress and optimizing their long-term bereavement outcomes.^34–36 This may be especially important in the SCT population, in which bereaved parents are at particularly high risk for long-term psychological morbidity.^10,11

An important role of PPC consultation is to provide an opportunity for patients/families to discuss their priorities and goals and the decisions they potentially face. In optimal situations this foundation is laid in advance of subsequent conversations about issues such as advance care planning and resuscitation status. Our finding that the majority of initial PPC consultations addressed goals of care and decision-making and far fewer addressed advance care planning is consistent with this strategy, highlighting the fact that PPC teams can be most helpful to families when consulted early. We unexpectedly found that child/family QOL was addressed relatively infrequently. This may reflect the nature of SCT, in which pursuit of QOL is typically deferred in pursuit of cure. Given that PPC teams typically pay close attention to child/family QOL, this issue might have carried more weight in follow up discussions.

Another important finding is that death from treatment-related toxicity was associated with PPC consultation. Several possible explanations for this association exist, including a need for additional support for parents navigating a particularly unpredictable course, or making high stakes decisions. Parents may also experience significant distress due to an adverse outcome from the transplant to which they committed their child, and perhaps even a sense of culpability for the potential outcome.⁸ PPC may be called to support a family for any of these reasons.

This study has several strengths, most notably the design. First, only those who actually received PPC were compared with those who did not, as opposed to comparing groups with and without access to PPC (but might not have received it). Second, the group of interest (PPC group) was not compared to a historical control, thereby circumventing the issue of whether differences observed in the PPC group could have been attributed to a shifting baseline, such as a change in SCT culture or practice.

We also acknowledge the study’s limitations. First, referral bias cannot be excluded. It is possible that families who received PPC were somehow different from those who did not, although we did not detect meaningful differences between the two groups. In addition, the data are derived from a single center, potentially limiting the generalizability of the findings. However, most childhood SCT care is delivered at large referral centers across which care may be similar, and our findings may thus be generalizable to these settings. In addition, the results are retrospective in nature, limited to data contained in the medical record and subject to documentation practices. Documentation of resuscitation status discussions is particularly likely to accurately reflect what occurred as they often resulted in a resuscitation order and the physician placing the order would have been required to document the discussion that transpired. The size of the sample may have also been insufficient to detect some clinically important differences between the PPC and non-PPC groups or children with longer versus shorter duration of PPC involvement. Further studies to prospectively study PPC in the SCT setting and to better understand the perspectives of SCT clinicians, patients and families are indeed needed.

In this study population, the PPC team addressed a range of issues that are highly salient to the entire SCT population irrespective of prognosis, including symptom management, psychosocial support and delineation of goals of care. Despite the especially high relevance of these issues to children who did not survive and their families, only a quarter of them received PPC. Other studies have similarly shown that patients with hematologic malignancies or those undergoing SCT are either less likely to receive PPC or receive it later.^14,15

Strategies to implement and evaluate earlier, routine PPC in the broader SCT population are vital to the care of this high-risk population and may improve access to timely PPC services consultation rates mentioned above. We found that the vast majority of PPC visits occurred in the inpatient setting, and for some children likely occurred too close to death for ongoing contact with PPC to occur. PPC in the outpatient setting, while the child is relatively well, may allow for earlier PPC, and potentially greater impact on EOL outcomes. PPC consultation might be offered as a part of routine care, either to those with the highest anticipated needs, or to all SCT families. Our institution now routinely offers PPC consultation prior to SCT, as do a few others.³⁷ Such an approach with earlier and more routine would be in line with the World Health Organization³⁸ and the American Academy of Pediatrics guidelines, which recommend that palliative care be offered when a child is diagnosed with a life-threatening condition and continued throughout the illness course, irrespective of treatment intent or outcome.³⁹ The American Society of Clinical Oncology similarly recommends early palliative care concurrent with standard oncology care.⁴⁰

PPC may play an important role in EOL outcomes by mitigating distress and supporting communication and preparation if death is inevitable. However, none of these endeavors are inherently incompatible with pursuit of the possibility of cure afforded by SCT. In fact, routine PPC delivered concurrently with SCT may well enhance care, helping children and families to live as well as possible in the midst of the intense, uncertain and high-stakes setting of transplant.

Highlights.

1. Whether PPC consultation is associated with EOL care patterns post-SCT is unknown.

2. PPC was associated with less intervention-focused care (e.g. CPR, death in ICU).

3. PPC was not associated with less medicalized care (e.g. home death, with hospice).

4. Longer duration of PPC involvement may be associated with less medicalized care.

List of Abbreviations

SCT

hematopoietic stem cell transplant/transplantation

PPC

pediatric palliative care

EOL

end-of -life

IQR

interquartile range

CPR

cardiopulmonary resuscitation

QOL

quality of life