Lack of consistency in palliative care language can serve as barriers when designing, delivering, and accessing high-quality palliative care services.
Objective:
To develop a consensus-driven and evidence-based palliative care glossary for the Health Standards Organization Palliative Care Services National Standard of Canada (CAN/HSO 13001:2020).
Design:
Content analysis of the Palliative Care Services standard was used to refine a list of terms. Environmental scan and rapid review were used for identification of concepts and definitions. Two meetings of consultation based on the modified Delphi approach took place among a working committee consisting of 12 health care providers, administrators, academics, and patient/family representatives.
Results:
Palliative approach to care, quality of life, pain and symptom management, caregivers, palliative care, life-limiting illness, and serious illness were defined by modification/adoption of existing definitions.
Conclusion:
A glossary of key palliative care terms was developed and included in the HSO Palliative Care Services standard, which will facilitate communication using consistent language across care settings.
Get full access to this article
View all access options for this article.
References
1.
TemelJS, GreerJA, MuzikanskyA, et al.: Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med, 2010; 363:733–742.
2.
ZimmermannC, SwamiN, KrzyzanowskaM, et al.: Early palliative care for patients with advanced cancer: A clusterrandomised controlled trial. Lancet, 2014; 383:1721–1730.
3.
MayP, NormandC, CasselJB, et al.: Economics of palliative care for hospitalized adults with serious illness: A meta-analysis. JAMA Intern Med, 2018; 178:820–829.
4.
HudsonP, TrauerT, KellyB, et al.: Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial. Psycho-Oncology, 2015; 24:19–24.
5.
PastranaT, JungerS, OstgatheC, et al.: A matter of definition—Key elements identified in a discourse analysis of definitions of palliative care. Palliat Med, 2008; 22:222–232.
GrantMS, BackAL, DettmarNS: Public perceptions of advance care planning, palliative care, and hospice: A scoping review. J Palliat Med, 2021; 24:46–52.
11.
Canadian Hospice Palliative Care Association: The Way Forward National Framework: A roadmap for the integrated palliative approach to care. The Way Forward initiative, 2014: www.hpcintegration.ca/resources/the-national-framework.aspx. (Last accessed October30, 2019).
WilburnA, VanderpoolRC, KnightJR: Environmental scanning as a public health tool: Kentucky's human papillomavirus vaccination project. Prev Chronic Dis, 2016; 13:E109.
ChengBT, WangmoT, HauserJM: Patterns of palliative care beliefs among adults in the United States: Analysis of a national cancer database. J Pain Symptom Manage, 2019; 58:1056–1067.
23.
ZambranoSC, CentenoC, LarkinPJ, EychmüllerS: Using the term “palliative care”: International survey of how palliative care researchers and academics perceive the term “palliative care.”. J Palliat Med, 2020; 23:184–191.
24.
WaggonerJ, CarlineJD, DurningSJ: Is there a consensus on consensus methodology? Descriptions and recommendations for future consensus research. Acad Med, 2016; 91:663–668.
CohenSR, SawatzkyR, RussellLB, et al.: Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-Revised. Palliat Med, 2017; 31:120–129.
27.
JüngerS, PayneSA, BrineJ, et al.: Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med, 2017; 31:684–706.
