Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics

Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital death). Methods Using a provincial childhood cancer registry, we assembled a retrospective cohort of Ontario children with cancer who died between 2000 and 2012 and received care through pediatric institutions with an SPPC team. Patients were linked to population-based administrative data capturing inpatient, outpatient, and emergency visits. Children were classified as having SPPC, general palliative care, or no palliative care on the basis of SPPC clinical databases, physician billing codes, or inpatient diagnosis codes. Results Of the 572 children, 166 (29%) received care from an SPPC team for at least 30 days before death, and 100 (17.5%) received general palliative care. SPPC involvement was significantly less likely for children with hematologic cancers (OR, 0.3; 95% CI, 0.3 to 0.4), living in the lowest income areas (OR, 0.4; 95% CI, 0.2 to 0.8), and living further from the treatment center (OR, 0.5; 95% CI, 0.4 to 0.5). SPPC was associated with a five-fold decrease in odds of intensive care unit admission (OR, 0.2; 95% CI, 0.1 to 0.4), whereas general palliative care had no impact. Similar associations were seen with all secondary indicators. Conclusion When available, SPPC, but not general palliative care, is associated with lower intensity care at the end of life for children with cancer. However, access remains uneven. These results provide the strongest evidence to date supporting the creation of SPPC teams.

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Impact of a pediatric palliative care team on resident education in end of life care

Progress in Palliative Care ◽

10.1080/09699260.2021.1871578 ◽

2021 ◽

pp. 1-6

Author(s):

Brian Pennarola ◽

Rebecca E. MacDonell-Yilmaz ◽

Philippa Sprinz ◽

Thomas Renaud

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Resident Education ◽

Palliative Care Team ◽

Care Team ◽

Pediatric Palliative Care ◽

Life Care

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Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home‐based end‐of‐life care

Pediatric Blood & Cancer ◽

10.1002/pbc.28921 ◽

2021 ◽

Vol 68 (4) ◽

Cited By ~ 1

Author(s):

Meaghann S. Weaver ◽

Valerie K. Shostrom ◽

Marie L. Neumann ◽

Jacob E. Robinson ◽

Pamela S. Hinds

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Pediatric Palliative Care ◽

Rural Children ◽

Life Care ◽

Children With Cancer ◽

Home Based

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Cultural and religious considerations in pediatric palliative care

Palliative & Supportive Care ◽

10.1017/s1478951511001027 ◽

2012 ◽

Vol 11 (1) ◽

pp. 47-67 ◽

Cited By ~ 90

Author(s):

Lori Wiener ◽

Denice Grady McConnell ◽

Lauren Latella ◽

Erica Ludi

Keyword(s):

Health Care ◽

Palliative Care ◽

End Of Life ◽

Pediatric Oncology ◽

End Of Life Care ◽

Death And Dying ◽

Care Quality ◽

Pediatric Palliative Care ◽

Life Care ◽

Improvement Project

AbstractObjective:A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.Method:Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine.Results:Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.Significance of results:The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.

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Trends in Pediatric Palliative Care Research (TPPCR) 2021; Issue #9: Commentary on Rapoport & Gupta

10.31219/osf.io/a9cd3 ◽

2021 ◽

Author(s):

Katherine Ketchum ◽

- TPPCR

Keyword(s):

Palliative Care ◽

Children And Adolescents ◽

End Of Life ◽

End Of Life Care ◽

Pediatric Palliative Care ◽

Life Care ◽

Care Research

This TPPCR commentary discusses the 2021 paper by Rapoport & Gupta, “Children and adolescents with hematologic cancers deserve better end-of-life care” published in Cancer.

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Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

Innovation in Aging ◽

10.1093/geroni/igaa057.2711 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 752-752

Author(s):

Joan Carpenter ◽

Winifred Scott ◽

Mary Ersek ◽

Cari Levy ◽

Jennifer Cohen ◽

...

Keyword(s):

Palliative Care ◽

Logistic Regression ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Multivariate Logistic Regression ◽

Comfort Care ◽

Lower Odds ◽

Medicare Data ◽

Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

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Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211010722 ◽

2021 ◽

pp. 104990912110107

Author(s):

Kate L. M. Hinrichs ◽

Cindy B. Woolverton ◽

Jordana L. Meyerson

Keyword(s):

Mental Illness ◽

Palliative Care ◽

End Of Life ◽

Serious Mental Illness ◽

End Of Life Care ◽

Psychosocial Support ◽

Life Care ◽

Case Examples ◽

Increased Risk ◽

Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

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