Health literacy and palliative care

Melissa G. French

doi:10.1515/pubhef-2016-2129

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Health literacy and palliative care

Melissa G. French

Published/Copyright: March 14, 2017

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From the journal Public Health Forum Volume 25 Issue 1

Abstract

Health literacy and palliative care have been receiving more attention within health care organizations and systems in recent years. Both can offer a pathway to care that is better for patients and has the potential to be of high value. A health literate approach to palliative care provides patient-centered care that is better aligned with patient preferences and needs.

Zusammenfassung

Health Literacy und Palliativversorgung haben in den letzten Jahren innerhalb von Gesundheitsorganisationen und Gesundheitssystemen insgesamt mehr Beachtung erfahren. Beide können einen Weg zu einer Versorgung anbieten, die besser für die Patienten ist und Potential für eine hochwertige Versorgung bietet. Wendet man die Grundsätze der Health Literacy auf die Palliativversorgung an, ermöglicht das eine patientenorientierte Versorgung, die besser mit den Präferenzen und Bedürfnissen der Patienten in Einklang steht.

Keywords: health literacy; palliative care; systems attributes

Schlüsselwörter: Gesundheitskompetenz; Gesundheitssystem; Palliativpflege

Palliative care is a comprehensive approach to care for people with long-term serious illness. While palliative care is often assumed to be a part of end-of-life care it can be part of the care plan for anyone with a serious illness, regardless of prognosis, and can be offered along with curative therapies [1], [2]. Palliative care focuses on quality of life and takes into account the need for psychological and social support for patients and their caregivers [1]. The use of palliative care has been increasing steadily, if unevenly, in the United States in the past twenty years [3]. This increase reflects a growing emphasis on patient-centered care as well as evidence that delivering palliative care can decrease costs [4]. For patients and families the consequences of not receiving adequate palliative care can be devastating [5].

Providing high quality palliative care is challenging in a number of ways. The care model requires coordination between clinicians and non-clinical staff as well as families and caregivers. It relies on identifying patient values and preferences but there is evidence that many physicians lack the skill required to elicit this information [1]. In addition, studies have shown that often patients are unable to understand their prognosis or treatment options, compromising their ability to make choices about their care [6], [7], [8]. Integrating health literacy into the provision of palliative care can help to overcome these challenges.

Although health literacy is often thought of as an individual trait, there is a growing recognition of the effect of system factors [9]. Individuals carry with them their literacy and numeracy skills, as well as knowledge about their health, but health literacy is also dynamic and dependent on context. A person with high health literacy might find themselves unable to fully understand or participate in their care because of illness, stress, or simply because the system asks too much of them. Health literacy is the result of the interaction between the individual and the health care system. Thus it is important to realize that systems can also be health literate and to recognize that the demands of the system must align with the skills of the individual. A health literate system recognizes that people have difficulty understanding prognosis, provides clear decision aids to help them decide among treatment options, and trains providers to communicate clearly with their patients [10]. In the context of palliative care this is particularly important because of the demands of serious illness and the complexity of treatment regimens.

In 2012, Brach and colleagues identified the attributes of a health literate organization, that is, an organization makes it easier for people “to navigate, understand, and use information and services.” The attributes include workforce training in health literacy strategies and approaches, using health literate communication, confirming understanding, and recognizing the importance of meeting the needs of people as they are rather than expecting people to meet the expectations of the organization [11].

Embedding health literacy into the system will remove any element of chance from whether a patient, particularly one without a terminal diagnosis, receives adequate palliative care [12]. Workforce training in health literacy has been shown to improve provider awareness of health literacy and provider communication skills [13], [14]. Following communication best practices and checking for understanding in every interaction can help alleviate difficulty in understanding and reduce stigma [11]. And applying evidence-based strategies to help patients make end-of-life-decisions can reduce uncertainty and honor patient values [15], [16]. These efforts require additional workforce training and a modification of provider workflow to include health literate practices. They must happen at a system level if they are to happen at all.

Cultivating health literacy within palliative care requires educating patients and families – about prognosis, treatment, and coping with the stress of a serious illness. But it is also about reorganizing the system to meet the needs of the patients and families as they are rather than demanding more of them when they are least equipped to give it.

Correspondence: Melissa G. French, MS, Program Officer, Roundtable on Health Literacy, The National Academies of Sciences, Engineering, and Medicine, 500 Fifth St, NW, Keck 813, Washington, DC 20001

Conflicts of interest: The author is responsible for the content of this article, which does not necessarily represent the views of the National Academies of Sciences, Engineering, and Medicine. Funding: Authors state no funding involved. Conflict of interest: Authors state no conflict of interest. Ethical statement: Primary data for human nor for animals were not collected for this research work.
Conflicts of interest: Alle Autoren tragen Verantwortung für den gesamten Inhalt dieses Artikels und haben der Einreichung des Manuskripts zugestimmt. Finanzierung: Die Autoren erklären, dass sie keine finanzielle Förderung erhalten haben. Interessenkonflikt: Die Autoren erklären, dass kein wirtschaftlicher oder persönlicher Interessenkonflikt vorliegt. Ethisches Statement: Für die Forschungsarbeit wurden weder von Menschen noch von Tieren Primärdaten erhoben.

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Online erschienen: 2017-03-14

Erschienen im Druck: 2017-03-01

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Articles in the same Issue

https://doi.org/10.1515/pubhef-2016-2129

Keywords for this article

health literacy; palliative care; systems attributes

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