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

7034 Background: The impacts of advance care planning (ACP) on end-of-life (EOL) outcomes in allogeneic hematopoietic stem cell transplant (allo HCT) recipients are not well known. ACP includes advance directive (AD) completion, and palliative care (PC) consultation. Using these two components, we aimed to explore the current state of ACP and its impact on EOL outcomes in allo HCT recipients to provide the groundwork for future prospective studies. Methods: We performed a retrospective study of deceased adult patients who underwent allo HCT between December 2015-December 2019. We summarized patient characteristics, the rate of AD completion, PC consultation, and location of end-of-life (EOL). Univariate and multivariate analyses were performed to evaluate patient characteristics that may be associated with AD completion, PC consultation and assess the impact of these two factors on location of EOL. Results: See Table for summary of patient characteristics. Of the 125 patients included, we found that 66% (n = 82) completed ADs. All patients with ADs completed them prior to undergoing transplant and never modified them. The majority of patients (84%) with an AD expressed the desire to avoid life-sustaining treatment in the event of terminal illness or irreversible coma. PC was consulted for 46% (n = 58) of patients within 6 months prior to time of death (TOD). Regarding location of EOL, 30% of all patients died in the hospital (non-ICU), 20% in the ICU, 38% at home with hospice, and 10% in a hospice facility. Patients with ADs appeared more likely to die outside of the hospital compared to those without (53% vs. 44%, p = 0.4506). By multivariate analysis, there were no significant patient characteristics associated with the presence of an AD or PC consultation. After adjusting for age and comorbidity index, we found that patients with an AD were significantly more likely to die outside of the ICU (OR 3.0, 95% CI 1.2-7.5, p = 0.02), an effect that was further amplified in patients who both had an AD and received PC consultation at any point (n = 30, p = 0.0077). Conclusions: Our findings highlight the importance of ACP for EOL outcomes in the allo HCT population. While the rate of AD completion in our study population is higher than that of prior studies, future prospective studies aimed to improve the rate of ACP are needed.[Table: see text]

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Are families the barrier? Evaluating attitudes toward early integration of palliative care in pediatric hematopoietic stem cell transplant.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.112 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 112-112

Author(s):

Deena R. Levine ◽

Justin N. Baker

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Stem Cell ◽

Hematopoietic Stem Cell ◽

Hematopoietic Stem Cell Transplant ◽

Stem Cell Transplant ◽

Cell Transplant ◽

Hematopoietic Stem ◽

Early Integration

112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. This study aimed to evaluate perceived symptom burden and patient and parent attitudes toward early PC integration in pediatric HSCT. Methods: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged 10-17, time from HSCT > 1 month and < 1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: Interim analysis of the first 34 participants revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 96%, loss of appetite 88%, diarrhea 88%, pain 83%, depression 79%, anxiety 75%, and constipation 42%. 90% of patients and 71% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (60/46%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 4% parents). Conclusions: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.

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