Readability of state-sponsored advance directive forms in the United States: a cross sectional study

BACKGROUND: State governments provide preprinted advance directive forms to the general public. However, many adults in the United States (US) lack the skills necessary to read and comprehend health care-related materials. In this study, we sought to determine the readability of state government-sponsored advance directive forms. METHODS: A cross sectional study design was used. The readability of advance directive forms available online from all 50 US states and the District of Columbia was determined using 6 validated readability scales. RESULTS: Overall, 62 advance directive forms were obtained. For 47 states, forms were available by way of government-sponsored Web sites. The average (SD) readability (with the Flesch-Kincaid score) of all forms was grade level 11.9 (2.6). Similar results were obtained with the other readability scales. No form had a readability score at the 5th grade level or lower, the level recommended by the National Work Group on Literacy and Health. The readability of the forms exceeded this level by an average of 6.9 grade levels (95% confidence interval, 6.3-7.6;

Ethical capital: ‘What’s a poor man got to leave?’

For those of little or no means, leaving one's mark through financial assets, social connections, and human investment is difficult. Using secondary analysis of transcripts from face-to-face interviews with 33 terminally-ill patients from an outpatient clinic at a public hospital serving the disadvantaged in the southern United States, we examine the legacy participants wish to leave behind. As part of this process, participants assess life circumstances to try and generate a legacy allowing them to remain personally relevant to loved ones after death. For the low-SES terminally ill persons in this study, the desire to leave a material legacy and the means to do so are not congruous. In the absence of economic resources to bequeath loved ones, participants describe their desire to leave loved ones some form of ethical currency to facilitate interactions with others and protect them against social marginalisation. We call this concept ethical capital. We then argue ethical capital is a way for disadvantaged people to find dignity and to affirm their lives