Exploratory study on end-of-life issues: Barriers to palliative care and advance directives

Abstract

Background. In the United States, as in most developed countries, death is rarely unexpected. It usually occurs in older persons with chronic progressive illnesses that often are complicated by infections or exacerbations. Many patients with terminal illnesses choose palliative care to relieve symptoms, improve the quality of their lives, and strive for a peaceful death. Professionals who serve dying patients need to recognize the importance of advance directives as part of a patient’s decision to forgo curative treatment for palliative care. Objectives. SOLACE™ (Supporters of Life-Affirming Care at End of Life) is a coalition of interdisciplinary professionals in the northern Virginia community dedicated to improving end-of-life care. The objectives of the SOLACE survey were to identify and describe: 1) professionals’ perceptions about barriers related to hospice and palliative care, 2) professionals’ opinions about barriers related to dying at home, 3) professionals’ perceptions about barriers related to advance directives, and 4) relationships between professionals and their perceived barriers to advance directives and hospice and palliative care. Methods. From several consultations with hospice experts, a survey questionnaire was developed to solicit responses from professionals on palliative care, dying at home, and advance directives. Measures that assessed obstacles to palliative care were modified from previous studies to yield composite barrier scores. From a sample of a variety of participants at a national conference on palliative care (n = 200), 101 subjects returned questionnaires (51 percent) yielding 100 usable completed forms from attendees who demonstrated an interest in palliative care and, in some cases, a high level of personal or professional experience. Survey results were analyzed on respondents’ perceptions concerning barriers related to advance directives and the delivery of palliative care. Results. Of the 13 obstacle statements, results show that respondents rated the top three barriers as 1) physician reluctance to make referrals (mean = 4.23), 2) physician lack of familiarity with availability and suitability of hospice (mean = 3.93), and 3) association of hospice with death (mean = 3.93). There was a statistically significant difference in scores for respondents from hospitals and respondents from hospices on their assessment of barriers for the association of hospice with death (t = -2.09, p < .05) and the lack of information about the severity of or irreversibility of the patient’s illness (t = -2.78, p < .01).