Int J Palliat Nurs. 2015 Jun 2;21(6):287-91. doi: 10.12968/ijpn.2015.21.6.287.

We are not alone: international learning for professionals caring for children requiring palliative care.

Price J1, Quinn K2, McNeilly P3, Heywood M4.

Abstract

BACKGROUND:

Educational opportunities for professionals working with children requiring palliative care are central to future development within the specialty across countries. International educational initiatives involving a range of professionals are important for learning with and from others working within the field.

AIM:

To explore the experiences and value to students from participating in an international online discussion forum.

METHOD:

This article examines one such initiative; the use of an international asynchronous discussion forum with students in Melbourne, Australia and Belfast, UK who work with children and families. The innovation is examined and student perspectives of the forum's value are presented.

RESULTS:

Students endorsed the value of the forum, identifying three main areas of learning: differences across locations within countries, respecting different views and being open, and need for continued learning within children's palliative care. The overarching theme 'we are not alone' supported the idea that participation in the international discussion forum enabled students to see a broader perspective. Ideas for future developments of similar forums are also explored.

KEYWORDS:

Asynchronous discussion forum; Children's palliative care; Continuing education; International; Interprofessional

http://www.nursingtimes.net/nursing-practice/specialisms/end-of-life-and-palliative-care/palliative-care-in-nursing-homes-linked-to-managers-knowledge/5083564.article


http://www.nursingtimes.net/nursing-practice/specialisms/end-of-life-and-palliative-care/palliative-care-in-nursing-homes-linked-to-managers-knowledge/5083564.article

J Pain Symptom Manage. 2014 Jan;47(1):77-89. 

Concepts and definitions for "actively dying," "end of life," "terminally ill," "terminal care," and "transition ofcare": a systematic review.

Hui D1, Nooruddin Z2, Didwaniya N2, Dev R2, De La Cruz M2, Kim SH3, Kwon JH4, Hutchins R5, Liem C5, Bruera E2.

Abstract

CONTEXT:

The terms "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care" are commonly used but rarely and inconsistently defined.

OBJECTIVES:

We conducted a systematic review to examine the concepts and definitions for these terms.

METHODS:

We searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code.

RESULTS:

One of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as "hours or days of survival." We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously.

CONCLUSION:

We identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions.

Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

KEYWORDS:

Actively dying; end of life; systematic review; terminal care; terminally ill; terminology; transition of care

Support Care Cancer. 2013 Mar;21(3):659-85.

Concepts and definitions for "supportive care," "best supportive care," "palliative care," and "hospice care" in the published literature, dictionaries, and textbooks.

Hui D1, De La Cruz M, Mori M, Parsons HA, Kwon JH, Torres-Vigil I, Kim SH, Dev R, Hutchins R, Liem C, Kang DH, Bruera E.

Abstract

PURPOSE:

Commonly used terms such as "supportive care," "best supportive care," "palliative care," and "hospice care" were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms.

METHODS:

We searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched.

RESULTS:

Nine of 32 "SC/BSC," 25 of 182 "PC," and 12 of 42 "HC" articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. "SC" focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, "HC" focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both "PC" and "SC/BSC" were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for "SC/BSC," "PC," and "HC," respectively. "SC/BSC" was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings.

CONCLUSION:

We identified defining concepts for "SC/BSC," "PC," and "HC" and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions.

Ann Oncol. 2015 Apr 28. 

Implementation of supportive care and best supportive care interventions in clinical trials enrolling patients with cancer†.

Lee RT1, Ramchandran K2, Sanft T3, Von Roenn J4.

Author information

Abstract

BACKGROUND:

With the growing and evolving role of palliative care in oncology, we examined how supportive care (SC) and best supportive care(BSC) are implemented in clinical trials when used as a comparison treatment arm.

METHODS:

We conducted a systematic review of the literature for clinical trials published between 1980 and 2012 in which systemic anticancer therapy was compared with an SC-only arm and compared SC implementation with World Health Organization (WHO) published guidelines.

RESULTS:

Our search identified 189 articles, 73 of which met our inclusion criteria with the following cancer types: 29 lung, 7 colorectal, 6 pancreatic, 5 gastric and 26 others. Fifty-five studies (75%) provided some definition of SC, and 48 studies (66%) used the term BSC. Twenty-one of the 55 studies that provided a definition described the use of palliative therapies as being 'at the discretion of the treating physician' without standardization. Only two studies provided SC that incorporated routine physical, psychological and social assessments including rapid referral to SC specialists. SC interventions most commonly included analgesics (47%) and radiotherapy (44%). Trials using the term BSC versus SC were more likely to include blood transfusions (P = 0.002) and antibiotics (P = 0.033), but less likely to include steroids (P = 0.05) and palliativespecialists (P = 0.047).

CONCLUSIONS:

The implementation of SC in clinical trials in this systematic review is highly variable. The vast majority of the studies did not meet the WHO guidelines on SC because palliative care therapies were not recommended or integrated into care. Future clinical trials utilizing a SC intervention arm should define these interventions in a standardized approach that meets current guidelines such as the WHO recommendations.

© The Author 2015. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

KEYWORDS:

best supportive care; cancer clinical trials; palliative care; supportive care