Hospital or Home? Where Should Children Die and How Do We Make That a Reality?

Johnston, Emily E.; Martinez, Isaac; Currie, Erin; Brock, Katharine E.; Wolfe, Joanne

doi:10.1016/j.jpainsymman.2019.12.370

Cited by 41 publications

(54 citation statements)

References 65 publications

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“…In the outpatient setting, clinicians can help families plan for a poorer health state and provide anticipatory guidance before the situation worsens. Talking about a family's wishes for when their child is sicker and planning for the EOL make the desired plan of care more likely [43,44]. In this study, a shift in the setting of care was observed with more patients spending additional days at home in the last 90 days of life, a common preference of children and families reported in other studies [43].…”

Section: Discussionsupporting

confidence: 53%

“…Given the different accrual time for the groups, this may have differentially affected the post-PPO group. While other studies suggest a preference for death at home, it is uncertain whether days spent in the hospital aligned with patient and family preferences, as the location of EOL care and death preference was not reliably documented in the medical record [43,44]. Finally, this study did not measure the potential challenges inherent in a solo-provider PPO clinic including need for additional interdisciplinary staff, the required non-billable or care-coordination time, or the impact of providing support to PO providers when caring for patients with serious illness.…”

Section: Discussionmentioning

confidence: 98%

“…Talking about a family's wishes for when their child is sicker and planning for the EOL make the desired plan of care more likely [43,44]. In this study, a shift in the setting of care was observed with more patients spending additional days at home in the last 90 days of life, a common preference of children and families reported in other studies [43]. Additionally, being in the post-PPO cohort and early PPC consultation were important factors in achieving a home death.…”

Section: Discussionmentioning

confidence: 99%

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Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer

Brock

Allen

Falk

et al. 2020

Support Care Cancer

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Background Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. Methods Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. Results A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both preand post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). Conclusion A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.

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Section: Discussionsupporting

confidence: 53%

Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

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Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer

Brock

Allen

Falk

et al. 2020

Support Care Cancer

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“…31,43,44 Between 65% and 94% of responding AYA oncology patients preferred to stay in their own home if they were dying. 18,[45][46][47] Most parents and clinicians also ranked home as their first choice for EOL care and death, with estimates ranging from 70% to 89%. [46][47][48][49][50] Ease of home death varies based on local resources such as PC and hospice, and the emotional and logistical challenges imposed onto families.…”

Section: Location Of End-of-life Carementioning

confidence: 99%

“…52 Although 88% of pediatric oncology AYAs had never heard of hospice services, hospice remains the model for high-quality home death in the United States. 18 Home death can be complicated by lack of access to pediatric hospice services, 45,[53][54][55] or family revocation of hospice services. [56][57][58] For many patients and families, being given the choice to plan is just as important as the location itself.…”

Section: Location Of End-of-life Carementioning

confidence: 99%

Palliative care considerations and practices for adolescents and young adults with cancer

Upshaw

Roche

Gleditsch

et al. 2020

Pediatric Blood & Cancer

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The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with lifethreatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement. K E Y W O R D S adolescent and young adult, end-of-life care, palliative care, pediatric oncology, support care 1 INTRODUCTION While much medical advancements have occurred in pediatric oncology, challenges in functioning, quality of life, and living with a poor prognosis contribute to symptom burden and suffering within this population. 1 Interdisciplinary palliative care (PC) teams aim to provide specialized care to patients with serious illness, and help their families to improve symptom control, ease suffering, and attend to associated psychological challenges. 2-7 When caring for adolescents and young adults (AYAs) with cancer diagnoses, there are unique considerations given their stage of psychosocial development. In this study, AYA is defined as ages 12-24 years, 8 per the World Health Organization (WHO) definition. While the upper age range of AYAs can be defined as up to 39 years, 9 the intended audience of this study paper is pediatric

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Urgent Appeal From Hospice Nurses for Pediatric Palliative Care Training and Community

Brock

2021

JAMA Netw Open

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Porter et al 1 add valuable insights about the challenge that families and medical teams face when trying to find experienced pediatric hospice care professionals to care for children nearing the end of life. Forty-one southeastern US hospice nurses, with varying levels of comfort in pediatric care, participated in semistructured interviews. Most reported overwhelming discomfort in caring for children with serious illness, citing an immediate need for "any and all" pediatric content and training, access to pediatric palliative care (PPC) experts for immediate questions, and formation of a pediatric hospice nurse community to bolster resilience. 1 During a time when families are stressed and looking for guidance, hospice nurses report feeling uncomfortable, unprepared, and sometimes unwilling to care for children, describing the lack of education, training, knowledge, tools, and resources they have that would benefit the patient and family. Facets of pediatric care that nurses report difficulty with include communicating with the ill Open Access: This is an open access article distributed under the terms of the CC-BY License.

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Hospital or Home? Where Should Children Die and How Do We Make That a Reality?

Cited by 41 publications

References 65 publications

Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer

Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer

Palliative care considerations and practices for adolescents and young adults with cancer

Urgent Appeal From Hospice Nurses for Pediatric Palliative Care Training and Community

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