End of Life literacy. Developing a measure of capacity to seek, understand and use end-of-life health information within an aged care setting.


Written by Dr Kelly Jones, Research Fellow, Research Centre for Palliative Care, Death & Dying

Health literacy is multi-faceted and is defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services provided and is a key factor in a person’s ability to make appropriate health decisions. (1-3) The Australian Commission on Safety and Quality in Health Care separates health literacy into two components – individual health literacy and the health literacy environment. Individual health literacy is the skills, knowledge, motivation and capacity of a consumer to access, understand, appraise and apply information to make effective decisions about health and health care, and take appropriate action. The health literacy environment is the infrastructure, policies, processes, materials, people and relationships that make up the healthcare system, which affect the ways in which consumers engage with the aged care setting. (3,4)

The majority of health literacy research has focused on the health literacy of patients and has largely neglected to consider the health literacy of professionals and the environments that support it. (5) Since health professionals are expected to educate and improve patient well-being, it seems important to explore whether health professionals themselves have a strong literacy. (6)

End of Life (EOL) literacy is emerging as a new public health challenge. Poor EOL literacy is increasingly seen as an important predictor of risk for poor end-EOL-life outcomes, fewer palliative care visits, worse health status, worse EOL related quality-of-life and higher rates of unnecessary hospitalisations. (1,2,7) Strategies to reduce inequalities are challenging without simultaneous improvements in the health literacy of the public, service providers and policymakers. Such an argument can be made for EOL literacy and better EOL outcomes and is supported by community findings reported in the Palliative Care Australia Report 2018. (6)

As the population ages with more complex health conditions and rates of dementia increase, the need for improved EOL in the aged care setting is becoming increasingly critical. (9) The difficulties and barriers in navigating the complexities of the EOL care system in Australia is well documented. The Royal Commission into Aged Care Quality and Safety Interim findings highlights deficiencies across many areas of the health and aged care system, one of which is a gap in knowledge around the way the community; patients, families, care providers and organisations, navigate the many domains of the current system and models of care. Currently, there is a complete absence in the international literature on indices to measure literacy as it relates to EOL.

It seems timely that with the handing down of interim findings of the Aged Care Royal Commission that a measure to quantify an individual’s capacity to obtain, process and understand basic end of life care information and services within the context of that system is underway. The End-of-Life Literacy Management scale (ELLMs), which can be utilised by patients, families, health professionals, care workers and organisations involved in delivery of aged care services will allow the strengths and deficiencies in the aged care system and the domains of EOL literacy to be quantified. A validated ELLMs tool to systematically measure and allow monitoring of EOL literacy would greatly benefit the sector and provide evidence-based research support to understanding both the gaps and strengths in the system, training and education and models of care.

It is exciting for researchers from RePaDD be able to begin developing the ELLMS tool, in collaboration with colleagues from the Southern Adelaide Palliative Services and the University of Technology, Sydney, with the awarding of a 2020 Establishment Grant from Flinders University College of Nursing and Health Sciences.

1. Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International. 2000;15(3):259-67.
2. National Academies of Sciences E, and Medicine. Roundtable on Health Literacy. Washington (DC): National Academies Press (US); 2016.
3. Noonan K, Horsfall D, Leonard R, Rosenberg J. Developing death literacy. Progress in Palliative Care. 2016;24(1):31-5.
4. Noordman J, van Vliet L, Kaunang M, van den Muijsenbergh M, Boland G, van Dulmen S. Towards appropriate information provision for and decision-making with patients with limited health literacy in hospital-based palliative care in Western countries: a scoping review into available communication strategies and tools for healthcare providers. BMC Palliat Care. 2019;18(1):37-.
5. Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health. 2012;12(1):80.
6. Budhathoki SS, Pokharel PK, Good S, Limbu S, Bhattachan M, Osborne RH. The potential of health literacy to address the health-related UN sustainable development goal 3 (SDG3) in Nepal: a rapid review. BMC Health Services Research. 2017;17(1):237.
7. Fleming R, Bennett K, Preece T, Phillipson L. The development and testing of the dementia friendly communities environment assessment tool (DFC EAT). International Psychogeriatrics. 2017;29(2):303-11.
8. Australia PC. Palliative Care 2030 – working towards the future of quality palliative care for all. Canberra; 2018.
9. Patel P, Lyons L. Examining the Knowledge, Awareness, and Perceptions of Palliative Care in the General Public Over Time: A Scoping Literature Review. American Journal of Hospice and Palliative Medicine®.0(0):1049909119885899.

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