Evaluating the “Good Death” Concept from Iranian Bereaved Family

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Table 1 Some GDI Subdomain Scores SCALE SUBSCALES MEAN/SD Good Death Inventory Being respected as an individual 6.55/0.69 Not being treated as an object or a child 6.33/0.63 Being respected for one’s values 6.45/0.65 Natural death 6.36/0.52 Not being connected to medical instruments or tubes 6.15/0.57 Not receiving excessive treatment 6.24/0.47 Religious and spiritual comfort Patient felt that he or she was protected by a higher power Having family support 6.02/0.52 5.67/0.68 Patient was supported by religion 5.87/0.55 Control over the future 6.55/0.65 Knowing how long one will live 6. 50/0.54 Knowing what to expect about one’s condition in the future 6.43/0.58 Unawareness of death Dying 3.05/0.72 without awareness that one is dying 2.84/0.66 Living as usual without thinking about death 2.95/0.74 concession of the items was similar to the Japanese results, and 18 components were identified. The validity of the scale was assessed through a content validity discussion. Scholars of statistics and nursing care have reviewed the content of the scale from religious and cultural aspects of death and agreed upon a reasonable content validity. To reassess the reliability of the translated scale, alpha coefficients of internal consistency and 3-week test–retest coefficients (n � 30) of stability were computed. The alpha coefficient for GDI was 0.68. The 3-week test–retest coefficient of stability for the GDI was 0.79. Therefore, the translated scale presented an acceptable reliability. DATA COLLECTION AND ANALYSIS Accompanied by a letter including some information about the aim of the study, the questionnaires were handed out by the second author to 150 family members who were introduced by the matron of two hospitals over 2 months (May/June 2010) in southeast Iran. Some oral information about the study was also given by the third author. Participation in the study was voluntary and anonymous. We distributed 150 sets of questionnaires. In all collected data, 98% of all questions were answered. Data from the questionnaires were analyzed using the Statistical Package for Social Scientists (SPSS, Inc., Chicago, IL). A Kolmogorov-Smirnov test indicated that the data were sampled from a population with normal distribution. Descriptive statistics of the sample and measures that were computed included frequencies, means, and reliability. Cross-table Table 2 Correlation between GDI Domains and Demographic Factors SCALE SUBSCALE AGE LEVEL OF EDUCATION Good Death Inventory analysis (Spearman’s test) was used to examine relationships among demographic factors and scores on the GDI. Results Being respected as an individual r � 0.325 P � 0.001 Beauty and pride r � 0.274 P � 0.01 Good relationship with family Unawareness of death r � 0.293 P � 0.002 Iranmanesh et al r � 0.344 P � 0.000 r � 0.259 P � 0.04 r � –0.315 P � 0.003 PARTICIPANTS A descriptive analysis of the background information revealed that the participants belonged to the age group of 16–68 years, with a mean age of 33 years, and were mainly female (81%). About 68% were married, and the majority had an academic degree. Regarding personal study about death, 36.9% had read some things about death previously. FINDINGS Descriptive analysis indicated that the highest scores belonged to the domains “being respected as an individual” (mean � 6.55), “natural death” (mean � 6.36), “religious and spiritual comfort” (mean � 6.02), and “control over the future” (mean � 6.55) (Table 1). The domains and the components perceived as important by bereaved family members were (1) physical and psychological comfort, (2) dying in a favorite place, (3) maintaining hope and pleasure, (5) not being a burden to others, (6) good relationship with family, (7) physical and cognitive control, (8) environmental comfort, and (9) life completion. The domain perceived by family members as less important was “unawareness of death” (mean � 3.05). Significant differences were found between some domains of a good death and demographic characters of family members. Older participants were more likely to perceive a good death as “being respected as an individual” and “having good relationships with family members.” Among participants, those who had a higher level of education were more likely to view a good death as “being respected as an individual” and “pride and beauty.” There was a negative correlation between level of education and “unawareness of death” (Table 2). Discussion According to the factor analysis, 18 domains contributing to a good death were identified. However, the domains of the “good death” concept that were perceived as important by VOLUME 9, NUMBER 2 � MARCH/APRIL 2011 www.SupportiveOncology.net 61
Evaluating the “Good Death” Concept bereaved family members were similar to those in Japan. This finding thus indicates that these perceptions are foundational elements of a good death, regardless of ethnicity or cultural differences. The results indicated that most family members are likely to view a good death as “being respected as an individual” and having “control over the future.” According to Murata, 19 approaching death can cause a sense that life is meaningless and a loss of the patient’s well-being founded on temporality, relationships, and autonomy. Providing a good death means that dying patients are able and allowed to participate in the same human interactions that are important throughout life and appreciating patients as unique and “whole persons,” not only as “diseases” or cases. 20 It means supporting patients’ well-being through positive stimulation, for example, offering beautiful views and tasty meals. 21 A good death is also perceived by family members as “religious and spiritual comfort.” Ghavamzadeh and Bahar 14 claimed that among Iranians religious beliefs strongly and explicitly deal with the fact of death. This finding reflects the result of Tayeb et al, 11 who found that Muslims believe that death is closely linked to faith. They appreciated the importance of access to any needed spiritual or emotional support. Steinhauser et al. 20 also found that 89% of American patients and 85% of their families emphasize that a good death is “being at peace with God” and “prayer.” Participants perceived a good death as a “natural death.” Johnson et al 22 claimed that death without “machines,” “tubes,” and “lines” is considered more dignified and aesthetically pleasing. Withdrawal or withholding of treatment of the highly invasive and technological sort is conceptualized as restoring patient dignity and, to a small degree, personhood. 22 Many deaths were not considered “good” because of inherent problems within a culture of care that usually strives to prolong life and prevent death. 23 Similarly, Miyashita et al 18 reported that most Japanese view unnecessary life-prolonging treatments such as vasopressors, antibiotics, and artificial hydration as barriers to achieving a good death. The domain perceived by family members as less important was “unawareness of death.” This is consistent with Steinhauser et al’s 20 finding that 96% of American patients emphasized “knowing what to expect about one’s physical condition” achieves a good death. This is inconsistent with Tang et al’s 24 claims that in many traditional cultures (eg, most Asian countries and a few European cultures), in an effort to protect the patient from despair and a feeling of hopelessness, family caregivers often exclude patients from the process of information exchange. This is also in contrast to Miyashita et al’s 18,25 findings, where many Japanese do not want to know the seriousness of their condition. Our findings could be explained by the other results of this study. The results indicated that the majority of participants had a high level of education. The other findings showed there is a negative correlation between level of education and “unawareness of death.” Since the majority of participants were well-educated, it can be concluded that they were less likely to view a good death as “unawareness of death.” This has also been found by Montazeri et al. 26 The results showed that the family members’ age was correlated with some aspects of a good death. Miyashita et al 18 also found that the older the family member, the more positively he or she would look on the patient’s death. They claimed that death at younger ages tended to be evaluated as a bad death. This could be explained by their earlier study, where they found that age and psychosocial maturity inversely related to death anxiety. 27 Based on the results, level of education positively influenced some domains of a good death. There was a negative correlation between level of education and “unawareness of death,” with Montazeri et al 26 finding that Iranian patients with a low level of education were more likely to not know the diagnosis. Conclusion According to the results of this study, providing a good death requires professional caregivers to be sensitive and pay attention to the preferences of each unique person’s perceptions through her or his senses. This includes views, tastes, sounds, smells, and bodily contact. The ability of a dying person to see a sunset may seem petty but is important in providing high-quality care for people at the end of their lives. The same goes for the other senses. These circumstances deserve attention in all educational programs and especially in programs dealing with end-of-life care. In order to implement holistic care, caregivers must pay attention to patients’ spiritual needs. Establishing a specific palliative care unit in a hospital and meeting each patient as a unique being and part of a family could be the best way to improve the quality of end-of-life care that is missing in Iran. It requires cultural preparation and public education through the media and by well-educated staff. Since demographic variables influenced the evaluation of a good death from the bereaved family members’ perspective, public education needs different strategies. LIMITATION All data in this study were collected by use of self-report questionnaires. The dependence on self-report aspects in this study may have caused an overestimation of some of the findings due to variance, which is common in different methods. The respondents were predominantly female, which limits the generalization of the results for male respondents. Moreover, the convenience sample of Iranian bereaved family members, which is not representative of the entire Iranian population, could weaken the generalization of the findings. Further research is necessary to illuminate the concept of a good death as perceived by the general Iranian population. 62 www.SupportiveOncology.net THE JOURNAL OF SUPPORTIVE ONCOLOGY
Page 1 and 2: Editor-in-Chief Michael J. Fisch, M
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