Project Hope: Survey of South Florida Residents Knowledge and Opinions on End-of-Life Issues

The survey instrument included questions about demographics (constructed by the researchers), including the participants' age, gender, ethnicity, relationship status, education level, income, and whether they had a religious affiliation. Also included were items about steps participants may have taken to plan for their health care in the event they were unable to make personal health care decisions, such as whether they had a living well or durable power of attorney for health care, and whether they had knowledge of the existence of these documents prior to taking the survey. Participants were also asked where/from whom they first learned about hospice and where they got most of their knowledge about hospice. Hospice. This scale contained 24 statements about knowledge and opinions on hospice care. Hospice was defined as a program that provides care to people with illnesses that cannot be cured when they are at the end of their lives. Participants were asked to report their feelings from 1 (strongly disagree) to 5 (strongly agree) about each statement. Items included (a) ''Hospice care means giving up,'' (b) ''Hospice care means you get no treatment,'' (c) ''Hospice care can be provided in a patient's home if the patient or family wishes it,'' and (d) ''Those who believe in God do not need hospice.'' More favorable attitudes toward hospice are evidenced in higher scores. End of life care. Seven Likert-type items were used to ask participants about their thoughts and feelings related to the kind of medical care they would want if they had a disease, like cancer, that could not be cured. When answering these questions, participants were asked to consider a hypothetical situation in which they had a terminal disease and not consider their current state of health. This scale is composed of 7 items and uses a 5-point Likert-type response ranging from 1 (strongly disagree) to 5 (strongly agree). Participants were asked items such as

(a) ''If I had a disease (like cancer) that the doctors could not cure, I would want to live as long as possible even if I had to be on life support or a breathingmachine,'' and (b) ''If I had a disease (like cancer) that could not be cured, decreasing pain would be more important to me than living as long as possible.'' Higher scores indicate higher levels of advanced planning for EOL care. Communication about death and dying. Death and dying communication was measured using 9 items rated on a 5-point Likert format, with responses ranging from 1 (strongly disagree) to 5 (strongly agree). Examples of items include

1. ''I feel comfortable talking about death in general,''
2. ''Dying is a normal part of life,'' and (c) ''Death should be avoided at all costs.'' Higher scores indicate greater comfort with communicating about death and dying. Through convenience sampling strategies, a total of 625 individuals were approached; 610 were eligible, and 361 participants returned the survey. Thirty questionnaires were dropped because less than two thirds of the scale items were completed), resulting in a sample size of 331. Due to low numbers in some demographic categories, educational level was collapsed into 3 categories (ie, high school/some college, associate/ bachelors degree, and graduate degree) and annual income was collapsed into ''less than US$25 000, $25 000 to US$49 999, and US$50 000 or more. Ethnicity was categorized as non-Hispanic white, black, Hispanic, and other/mixed race. Relationship status was dichotomized into ''have a partner'' and ''do not have a partner.''