![]() Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.Īlthough pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers n = 429). It is split into three sections: initial assessment and care, ongoing care, and care after death. To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.Ĭross-sectional, stratified random national survey conducted in March-August 1999. Empirical evidence defining such factors, however, is lacking. All rights reserved.A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Palliative care specialists should have adequate knowledge of promising care strategies for alleviating patient-perceived burden.Ĭopyright (c) 2010 U.S. Attitudes towards terminally ill patients were assessed using a widely recognised research tool, the Frommelt Attitudes Toward Care of the Dying Scale, Form B (FATCOD, Form B), 20 which is an adapted version of the original FATCOD 21 specifically developed for use among students in a variety of programmes of study. Family members recommended a variety of care strategies to alleviate patient-perceived burden. Many terminally ill cancer patients suffer from a self-perceived burden. The family members recommended the following as particularly effective care strategies: "Eliminate pain and other symptoms that restrict patient activity (53%) " "Quickly dispose of urine and stools so that they are out of sight (52%) " and "Support patients' efforts to care for themselves (45%)." A factor analysis showed that the expert-recommended care strategies could be categorized into seven different components. In their responses, 25% of the bereaved family members reported that the patient had experienced a mild self-perceived burden, whereas 25% reported that the patient had experienced a moderate to severe self-perceived burden. The perceived usefulness of care was assessed using a 27-item questionnaire developed by a focus group of palliative experts and a systematic review.Ī total of 429 responses (64%) received from a member of each of 666 bereaved families was analyzed. ![]() The Good Death Inventory was used to evaluate patients' self-perceived burden based on the proxy ratings of family members. The subjects were bereaved family members of patients who had died in certified palliative care units throughout Japan. The objectives of this present study were 1) to investigate the prevalence of self-perceived burden among terminally ill cancer patients based on a survey of family members, 2) to assess the level of family perceived usefulness of expert-recommended care strategies, and 3) to categorize the care strategies. Terminally ill cancer patients often experience a self-perceived burden that affects their quality of life however, no standard care strategy for coping with this form of suffering has ever been established.
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