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      A “good death”: perspectives of Muslim patients and health care providers

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          Abstract

          BACKGROUND AND OBJECTIVES:

          Twelve “good death” principles have been identified that apply to Westerners. This study aimed to review the TFHCOP good death perception to determine its validity for Muslim patients and health care providers, and to identify and describe other components of the Muslim good death perspective.

          SUBJECTS AND METHODS:

          Participants included 284 Muslims of both genders with different nationalities and careers. We used a 12-question questionnaire based on the 12 principles of the TFHCOP good death definition, followed by face-to-face interviews. We used descriptive statistics to analyze questionnaire responses. However, for new themes, we used a grounded theory approach with a “constant comparisons” method.

          RESULT:

          On average, each participant agreed on eight principles of the questionnaire. Dignity, privacy, spiritual and emotional support, access to hospice care, ability to issue advance directives, and to have time to say goodbye were the top priorities. Participants identified three main domains. The first domain was related to faith and belief. The second domain included some principles related to self-esteem and person>s image to friends and family. The third domain was related to satisfaction about family security after the death of the patient. Professional role distinctions were more pronounced than were gender or nationality differences.

          CONCLUSION:

          Several aspects of «good death,» as perceived by Western communities, are not recognized as being important by many Muslim patients and health care providers. Furthermore, our study introduced three novel components of good death in Muslim society.

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          Most cited references18

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          In search of a good death: observations of patients, families, and providers.

          Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.
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            Quality end-of-life care: patients' perspectives.

            Quality end-of-life care is increasingly recognized as an ethical obligation of health care providers, both clinicians and organizations. However, this concept has not been examined from the perspective of patients. To identify and describe elements of quality end-of-life care from the patient's perspective. Qualitative study using in-depth, open-ended, face-to-face interviews and content analysis. Toronto, Ontario. A total of 126 participants from 3 patient groups: dialysis patients (n = 48), people with human immunodeficiency virus infection (n = 40), and residents of a long-term care facility (n = 38). Participants' views on end-of-life issues. Participants identified 5 domains of quality end-of-life care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. These domains, which characterize patients' perspectives on end-of-life care, can serve as focal points for improving the quality of end-of-life care.
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              What is wrong with end-of-life care? Opinions of bereaved family members.

              To describe family perceptions of care at the end of life. In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making, and symptom relief in the last month of life, and gave suggestions to improve care. Interviews were completed with 461 family members, 80% of those contacted. They reported that 9% of decedents received CPR, 11% ventilator support, and 24% intensive care during their last month of life. Family members could not recall a discussion of treatment decisions in 23% of cases. Presence or absence of a living will did not affect the likelihood of no discussion (22% vs 24%, P = .85). Family informants desired more treatment to sustain life in 8% of deaths. They or the decedent wanted treatments doctors did not recommend in 6% of deaths but refused recommended therapies in 18% of deaths. They believed more care to relieve pain or other symptoms was indicated in 18% of deaths. Asked to make positive or negative comments about any aspect of terminal care, 91% of comments on hospice were positive. Nursing home care received the smallest proportion of positive comments (51%). Family members recommendations to improve end of life care emphasized better communication (44%), greater access to physicians' time (17%), and better pain management (10%). Bereaved family members are generally satisfied with life-sustaining treatment decisions. Their primary concerns are failures in communication and pain control. Discussions that focus on specific treatment decisions may not satisfy the real needs of dying patients and their families.
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                Author and article information

                Journal
                Ann Saudi Med
                ASM
                Annals of Saudi Medicine
                Medknow Publications (India )
                0256-4947
                0975-4466
                May-Jun 2010
                : 30
                : 3
                : 215-221
                Affiliations
                From the North West Armed Forces Hospitals, Tabuk, Saudi Arabia
                Author notes
                Correspondence: Dr. Mohamad Abdurrahman Tayeb • Hematology & Oncology Center, North West Armed Forces Hospitals, PO Box 100, Tabuk, Saudi Arabia • drtayebweb@ 123456hotmail.com
                Article
                ASM-30-215
                10.4103/0256-4947.62836
                2886872
                20427938
                d7a59430-582a-4751-9700-90a512dc0870
                © Annals of Saudi Medicine

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : December 2009
                : March 2010
                Categories
                Perspective

                Medicine
                Medicine

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