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 E...

Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life

“…(18–21) Recent studies, using parent report after patient death, have shown that pediatric patients who undergo HCT are more likely to “suffer highly” from their last therapy and die in the ICU, with less opportunity for EOL care planning. (20, 21) Additionally, pediatric oncology patients who underwent HCT had a shorter time interval between completion of a do not resuscitate (DNR) order and death, were enrolled less often in hospice, and were less likely to die at home as compared to pediatric oncology patients who did not undergo HCT as a part of their treatment. (22)…”

“…Additionally, we explored differences in EOL features of AYA HCT patients based on their cause of death, regardless of location of death. This descriptive study builds upon very limited literature characterizing the demographic and EOL characteristics of AYA patients who have undergone allogeneic HCT,(20, 22) and to our knowledge it is the first study to assess the physical and psychological symptoms of this uniquely vulnerable patient population during the last month of life.…”

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…86 Finally, among children receiving HCT at a third centre, 97% of families who received specialty PPC discussed the prognosis of the child compared with 83% of families who did not receive PPC. 87 These discussions occurred earlier with PPC than without PPC (8 days vs 2 days before the death of the child), and children were less likely to receive intense end-of-life interventions such as intubation or cardiopulmonary resuscitation.…”

“…Investigators of three studies 85–87 considered specialty PPC as a separate intervention, and compared children’s end-of-life experiences with or without it. First, among 114 children who died at a children’s hospital (not all from cancer), inpatient PPC consultation was associated with higher frequencies of pain assessment and management, increased use of integrative medicine, fewer diagnostic or invasive procedures in the last 48 h of life, and more orders to limit resuscitation than those who did not receive inpatient PPC consultation.…”

The Affordable Care Act and End-of-Life Care for Patients With Cancer

“…22–24 However, results from several studies suggest that early palliative care consultations improve the detection of untreated symptoms, enhance communication and documentation of advance care planning, and increase the likelihood of hospice enrollment and avoidance of in-hospital deaths. 25–29 …”