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Evaluating the “Good Death” Concept from Iranian Bereaved Family Members' Perspective

Original research

Evaluating the “Good Death” Concept from Iranian Bereaved Family Members' Perspective

Sedigheh Iranmanesh PhDa, Habibollah Hosseini doctoral student

, a,
and Mohammad Esmaili MSc studenta

a Razi Faculty of Nursing and Midwifery, Kerman Medical University, Kerman, Iran

Received 4 August 2010; 

accepted 1 December 2010. 

Available online 2 April 2011.

Abstract

Improving end-of-life care demands that first you define what constitutes a good death for different cultures. This study was conducted to evaluate a good death concept from the Iranian bereaved family members' perspective. A descriptive, cross-sectional study was designed using a Good Death Inventory (GDI) questionnaire to evaluate 150 bereaved family members. Data were analyzed by SPSS. Based on the results, the highest scores belonged to the domains “being respected as an individual,” “natural death,” “religious and spiritual comfort,” and “control over the future.” The domain perceived by family members as less important was “unawareness of death.” Providing a good death requires professional caregivers to be sensitive and pay attention to the preferences of each unique person's perceptions. In order to implement holistic care, caregivers must be aware of patients' spiritual needs. Establishing a specific unit in a hospital and individually treating each patient as a valued family member could be the best way to improve the quality of end-of-life care that is missing in Iran.

Article Outline

Context

Method
Design
Participants
Background Information
Instruments
Reliability and validity
Data Collection and Analysis

Results
Participants
Findings

Discussion

Conclusion
Limitation

References

A life-threatening disease such as cancer involves patients and their families. Even if people today prefer to die at home and to be cared for by their family members, they still need professional services and support.1 Improving the quality of death has become a major need for patients, their families and loved ones, as well as health-care professionals, researchers, and policy makers who organize and provide care.2 Since the 1960s, our approach to this need has been palliative care. The philosophy of end-of-life care is to alleviate suffering and to improve the quality of life of patients who are facing death. 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 Longman Dictionary of Contemporary English3 defines good death as “the calm end of life of a person without any worry or excitement.” Family members who face the death of their loved ones are key to evaluating the good death concept. Their views on death could be used by the health-care system to evaluate the quality of end-of-life care. Therefore, the concept of a “good death” as perceived by the general Iranian population could be sought by studying the views of a representative sample of bereaved family members. Health-care providers, who are aware of what constitutes a good death, have an openness and flexibility when working with dying patients to improve quality of care as well as the patient's quality of life.

From a review of different studies, the core quality of a good death varies among cultures. In a qualitative study, Griggs4 analyzed perceptions of a “good death” among community nurses in England. Nurses identified several key themes for a good death, such as: symptom control, patient choice, honesty, spirituality, interprofessional relationships, effective preparation, organization, and provision of seamless care. American researchers concluded that a good death involves respect for the individual's autonomy with open communication among family members.5 Vig and Pearlman6 also reported that “good death” has an individual meaning for Americans and does not have a consensual meaning. In Ghana, Van der Greest7 found that a good death is integrated with a peaceful death, meaning peace with others, being at peace with one's own life and soul, dying in the fullness of time, dying at home, and being surrounded by relatives. For the Japanese, Hattori et al.8 found that a good death is a multidimensional, individual experience based on personal and sociocultural domains of life that incorporate the person's past, present, and future. In Norway, Ruland and Moore9 conducted research on the theory of a peaceful end of life which has five major concepts: not being in pain, experience of comfort, experience of dignity/respect, being at peace, and closeness to significant others/persons who care. In Thailand, people commonly used “peaceful death” instead of “good death.” Kongsuwan and Locsin10 reported that Thai intensive care unit nurses perceived peaceful death as awareness of dying, creating a caring environment, and promoting end-of-life care. In Muslim society, Tayeb et al11 identified three domains related to a good death: religion and faith, self-esteem and personal image, and satisfaction about family security.

After reviewing these studies, we determined there is no universal definition of good death and it is based on sociocultural context. The subject of death and dying has a religious and sociocultural background, yet Iranian health-care providers mainly depend on Western references. Moreover, upon reviewing the literature in Iran, no published study related to defining the concept of “good death” was located. This descriptive study was thus designed to determine what constitutes a good death in the Iranian context.

Context

Iran is one of the most ancient world civilizations and part of the Middle East culture. The population is approximately 67 million, and of this 51% is less than 20 years old and 6.5% is 65 or older.12 The majority (99.4%) of the people in Iran consider themselves as religious,13 and religious beliefs strongly and explicitly deal with death.14

Iranians are familiar with death. Besides the Iran–Iraq war and natural disasters in recent years, the major causes (65%) of death among Iranians are heart disease, cancer, and accidents.15 Apart from chronic disease, accidents seem to be a significant cause of death among Iranian people. In Iran, the overall national curriculum for registered nursing education includes just a few hours of academic education about death. End-of-life care remains a new topic in the Iranian health-care system. Hospice care units, which are common in Western countries, are not available in Iran.

Most religions are represented in this country; however, Islam is the most prevalent. Sareming16 indicates that Muslims are taught that Allah gives birth and death. Allah determines the appointed term for every human. Only Allah knows when, where, and how a person will die. For a Muslim, death is the transition from the earthly form of existence to the next.17 Tayeb et al11 explained that Muslims prefer to approach death with a certainty that someone is there to prompt them with the Shahadah, reciting a chapter of the Quran, dying in a position facing Mecca, and dying in a holy place such as a mosque.

Method

Design

There was approval from the heads of hospitals prior to the collection of data. The study employed a descriptive design and was conducted in two hospitals that had oncology units in southeast Iran.

Participants

Referring to the hospitals' and patients' documents, 150 bereaved family members of patients who died within 1 year were identified. They were called by the researcher and asked to participate in this study.

Background Information

At first, a questionnaire was designed in order to obtain background information which was assumed to influence the good death concept. It included questions about gender, age, marital status, previous studies about death, and level of education.

Instruments

The good death concept was evaluated using the Good Death Inventory (GDI). The GDI was designed by Miyashita et al18 for evaluating a good death from the bereaved family members' perspective. This scale has 51 items. The items are graded from 1 to 7 (1 = strongly disagree to 7 = strongly agree). A factor analysis made by Miyashita et al18 on research made in a Japanese setting revealed that the questions could be divided into 18 domains: (1) physical and psychological comfort, (2) dying in a favorite place, (3) good relationship with medical staff, (4) maintaining hope and pleasure, (5) not being a burden to others, (6) good relationship with family, (7) physical and cognitive control, (8) environmental comfort, (9) being respected as an individual, (10) life completion, (11) natural death, (12) preparation for death, (13) role accomplishment and contributing to others, (14) unawareness of death, (15) fighting against cancer, (16) pride and beauty, (17) control over the future, and (18) religious and spiritual comfort.

For translation from English into Farsi, the standard forward–backward procedure was applied. Translation of the items and the response categories was independently performed by two professional translators, and then temporary versions were provided. Afterward they were back-translated into English, and after a careful cultural adaptation the final versions were provided. Translated questionnaires went through pilot testing. Suggestions by family members were combined into the final versions.

Reliability and validity

The translated scale was originally developed and tested in a Japanese cultural context, which is different from the research contexts, so the validity and reliability of both scales were rechecked. A factor analysis (rotated component matrix) on the results was done in order to examine the context validity of the GDI. The 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 analysis (Spearman's test) was used to examine relationships among demographic factors and scores on the GDI.

Results

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).

 

 

Table 1. Some GDI Subdomain Scores

SCALESUBSCALESMEAN/SD
Good Death InventoryBeing respected as an individual6.55/0.69
Not being treated as an object or a child6.33/0.63
Being respected for one's values6.45/0.65
Natural death6.36/0.52
Not being connected to medical instruments or tubes6.15/0.57
Not receiving excessive treatment6.24/0.47
Religious and spiritual comfort Patient felt that he or she was protected by a higher power

6.02/0.52

5.67/0.68

Having family support
Patient was supported by religion5.87/0.55
Control over the future6.55/0.65
Knowing how long one will live6. 50/0.54
Knowing what to expect about one's condition in the future6.43/0.58
Unawareness of death Dying without awareness that one is dying

3.05/0.72

2.84/0.66

Living as usual without thinking about death2.95/0.74

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).

Table 2. Correlation between GDI Domains and Demographic Factors

SCALESUBSCALEAGELEVEL OF EDUCATION
Good Death InventoryBeing respected as an individual

r = 0.325

P = 0.001

r = 0.344

P = 0.000

Beauty and pride

r = 0.274

P = 0.01

R = 0.259

P = 0.04

Good relationship with family

r = 0.293

P = 0.002

Unawareness of death

r = –0.315

P = 0.003


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 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 Bahar14 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 al22 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 al18 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's20 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's24 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] and [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 al18 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 al26 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.

 

 

References

1 I.M. Proot, H.H. Abu-Saad, H.F.J.M. Crebolder, K.A. Luker and G.A.M. Widdershoven, Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity, Scand J Caring Sci 17 (2003), pp. 113–121. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (53)

2 D.L. Patrick, R.A. Engelberg and J.R. Curtis, Evaluating the quality of dying and death, J Pain Symptom Manage 22 (2001), pp. 717–726. Article |

PDF (210 K)
| View Record in Scopus | Cited By in Scopus (96)

3 , Longman Dictionary of Contemporary English, Pearson Education, Canada (2003).

4 C.H. Griggs, Community nurses' perceptions of a good death: a qualitative exploratory study, Int J Palliat Nurs 16 (2010), pp. 140–149. View Record in Scopus | Cited By in Scopus (0)

5 J.E. Winland-Brown, Public's perceptions of a good death and assisted suicide, Issues Interdisc Care 3 (2001), pp. 137–144. View Record in Scopus | Cited By in Scopus (1)

6 E.K. Vig and R.A. Pearlman, Good and bad dying from the perspective of terminally ill men, Arch Intern Med 164 (2004), pp. 977–981. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (27)

7 S. Van der Greest, Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana, Soc Sci Med 58 (2004), pp. 899–911.

8 K. Hattori, M.A. McCubbin and D.N. Ishida, Concept analysis of good death in the Japanese community, J Nurs Scholarsh 38 (2006), pp. 165–170. View Record in Scopus | Cited By in Scopus (9)

9 C.M. Ruland and S.M. Moore, Theory construction based on standards of care: a proposed theory of the peaceful end of life, Nurs Outlook 46 (1998), pp. 169–175. Article |

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10 W. Kongsuwan and R.C. Locsin, Promoting peaceful death in the intensive care unit in Thailand, Int Nurs Rev 56 (2009), pp. 116–122. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (3)

11 M.A. Tayeb, E. Al-zamel, M.M. Fareed and H.A. Abouellail, A ”good death”: perspectives of Muslim patients and health care providers, Ann Saudi Med 30 (2010), pp. 215–221. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (1)

12 WHO www.who.Int/countries/en/#s (2008).

13 European Values Study Group and World Values Surveys Association, European and World Values Surveys, four-wave integrated data file, 1981–2004 http://www.worldvaluessurvey.org/services/index.html.

14 A. Ghavamzadeh and B. Bahar, Communication with the cancer patients in Iran, information and truth, Ann N Y Acad Sci 809 (1997), pp. 261–265. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (9)

15 Cancer Institute of Iran www.cancer-institute.ac.ir Access date is June 2010.

16 N. Sareming, Islamic teaching on death and practices toward the dying person, J Soc Sci Hum 3 (1997), pp. 75–91.

17 A. Sheikh, Death and dying: A Muslim perspective, J R Soc Med 91 (1998), pp. 138–140. View Record in Scopus | Cited By in Scopus (16)

18 M. Miyashita, T. Morita, K. Sato, K. Hirai, Y. Shima and Y. Uchitomi, Good Death Inventory: a measure for evaluating good death from the bereaved family members' perspective, J Pain Symptom Manage 35 (2008), pp. 486–498. Article |

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| View Record in Scopus | Cited By in Scopus (10)

19 H. Murata, Spiritual pain and its care in patients with terminal cancer: construction of a conceptual framework by philosophical approach, Palliat Support Care 1 (2003), pp. 15–21. View Record in Scopus | Cited By in Scopus (12)

20 K.E. Steinhauser, E.C. Clipp, M. McNeilly, N.A. Christakis, L.M. McIntyre and J.A. Tulsky, In search of a good death: observations of patients, families, and providers, Ann Intern Med 132 (2000), pp. 825–832. View Record in Scopus | Cited By in Scopus (372)

21 S. Iranmanesh, T. Haggstrom, K. Axelsson and S. Savenstedt, Swedish nurses' experiences of caring for dying people: a holistic approach, Holist Nurs Pract 23 (2009), pp. 243–252. View Record in Scopus | Cited By in Scopus (1)

22 N. Johnson, D. Cook, M. Giacomini and D. Willms, Towards a good death: end of life narratives constructed in an intensive care unit, Cult Med Psychiatry 24 (2000), pp. 275–295. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (17)

23 R.L. Beckstrand, L.C. Callister and K.T. Kirchhoff, Providing a ”good death”: critical care nurses' suggestions for improving end-of-life care, Am J Crit Care 15 (2006), pp. 38–45. View Record in Scopus | Cited By in Scopus (49)

24 S.T. Tang, T.W. Liu, M.S. Lai, L.N. Liu, C.H. Chen and S.L. Koong, Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan, Cancer Invest 24 (2006), pp. 360–366. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (21)

25 M. Miyashita, M. Sanjo, K. Morita and Y. Uchitomi, Good death in cancer care: a nationwide quantitative study, Ann Oncol 18 (2007), pp. 1090–1097. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (31)

26 A. Montazeri, A. Tavoli, M.A. Mohagheghi, R. Roshan and Z. Tavoli, Disclosure of cancer diagnosis and quality of life in cancer patients: should it be the same everywhere, BMC Cancer 9 (2009), pp. 1–21.

27 R.J. Russac, C. Gatliff, M. Reece and D. Spottswood, Death anxiety across the adult years: an examination of age and gender effects, J Death Stud 31 (2007), pp. 549–561. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (11)

 

 


Correspondence to: Habibollah Hosseini, Razi Faculty of Nursing and Midwifery, Kerman Medical University, Kerman, IranPhone: 00983413205220; Fax: 00983413205218

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Original research

Evaluating the “Good Death” Concept from Iranian Bereaved Family Members' Perspective

Sedigheh Iranmanesh PhDa, Habibollah Hosseini doctoral student

, a,
and Mohammad Esmaili MSc studenta

a Razi Faculty of Nursing and Midwifery, Kerman Medical University, Kerman, Iran

Received 4 August 2010; 

accepted 1 December 2010. 

Available online 2 April 2011.

Abstract

Improving end-of-life care demands that first you define what constitutes a good death for different cultures. This study was conducted to evaluate a good death concept from the Iranian bereaved family members' perspective. A descriptive, cross-sectional study was designed using a Good Death Inventory (GDI) questionnaire to evaluate 150 bereaved family members. Data were analyzed by SPSS. Based on the results, the highest scores belonged to the domains “being respected as an individual,” “natural death,” “religious and spiritual comfort,” and “control over the future.” The domain perceived by family members as less important was “unawareness of death.” Providing a good death requires professional caregivers to be sensitive and pay attention to the preferences of each unique person's perceptions. In order to implement holistic care, caregivers must be aware of patients' spiritual needs. Establishing a specific unit in a hospital and individually treating each patient as a valued family member could be the best way to improve the quality of end-of-life care that is missing in Iran.

Article Outline

Context

Method
Design
Participants
Background Information
Instruments
Reliability and validity
Data Collection and Analysis

Results
Participants
Findings

Discussion

Conclusion
Limitation

References

A life-threatening disease such as cancer involves patients and their families. Even if people today prefer to die at home and to be cared for by their family members, they still need professional services and support.1 Improving the quality of death has become a major need for patients, their families and loved ones, as well as health-care professionals, researchers, and policy makers who organize and provide care.2 Since the 1960s, our approach to this need has been palliative care. The philosophy of end-of-life care is to alleviate suffering and to improve the quality of life of patients who are facing death. 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 Longman Dictionary of Contemporary English3 defines good death as “the calm end of life of a person without any worry or excitement.” Family members who face the death of their loved ones are key to evaluating the good death concept. Their views on death could be used by the health-care system to evaluate the quality of end-of-life care. Therefore, the concept of a “good death” as perceived by the general Iranian population could be sought by studying the views of a representative sample of bereaved family members. Health-care providers, who are aware of what constitutes a good death, have an openness and flexibility when working with dying patients to improve quality of care as well as the patient's quality of life.

From a review of different studies, the core quality of a good death varies among cultures. In a qualitative study, Griggs4 analyzed perceptions of a “good death” among community nurses in England. Nurses identified several key themes for a good death, such as: symptom control, patient choice, honesty, spirituality, interprofessional relationships, effective preparation, organization, and provision of seamless care. American researchers concluded that a good death involves respect for the individual's autonomy with open communication among family members.5 Vig and Pearlman6 also reported that “good death” has an individual meaning for Americans and does not have a consensual meaning. In Ghana, Van der Greest7 found that a good death is integrated with a peaceful death, meaning peace with others, being at peace with one's own life and soul, dying in the fullness of time, dying at home, and being surrounded by relatives. For the Japanese, Hattori et al.8 found that a good death is a multidimensional, individual experience based on personal and sociocultural domains of life that incorporate the person's past, present, and future. In Norway, Ruland and Moore9 conducted research on the theory of a peaceful end of life which has five major concepts: not being in pain, experience of comfort, experience of dignity/respect, being at peace, and closeness to significant others/persons who care. In Thailand, people commonly used “peaceful death” instead of “good death.” Kongsuwan and Locsin10 reported that Thai intensive care unit nurses perceived peaceful death as awareness of dying, creating a caring environment, and promoting end-of-life care. In Muslim society, Tayeb et al11 identified three domains related to a good death: religion and faith, self-esteem and personal image, and satisfaction about family security.

After reviewing these studies, we determined there is no universal definition of good death and it is based on sociocultural context. The subject of death and dying has a religious and sociocultural background, yet Iranian health-care providers mainly depend on Western references. Moreover, upon reviewing the literature in Iran, no published study related to defining the concept of “good death” was located. This descriptive study was thus designed to determine what constitutes a good death in the Iranian context.

Context

Iran is one of the most ancient world civilizations and part of the Middle East culture. The population is approximately 67 million, and of this 51% is less than 20 years old and 6.5% is 65 or older.12 The majority (99.4%) of the people in Iran consider themselves as religious,13 and religious beliefs strongly and explicitly deal with death.14

Iranians are familiar with death. Besides the Iran–Iraq war and natural disasters in recent years, the major causes (65%) of death among Iranians are heart disease, cancer, and accidents.15 Apart from chronic disease, accidents seem to be a significant cause of death among Iranian people. In Iran, the overall national curriculum for registered nursing education includes just a few hours of academic education about death. End-of-life care remains a new topic in the Iranian health-care system. Hospice care units, which are common in Western countries, are not available in Iran.

Most religions are represented in this country; however, Islam is the most prevalent. Sareming16 indicates that Muslims are taught that Allah gives birth and death. Allah determines the appointed term for every human. Only Allah knows when, where, and how a person will die. For a Muslim, death is the transition from the earthly form of existence to the next.17 Tayeb et al11 explained that Muslims prefer to approach death with a certainty that someone is there to prompt them with the Shahadah, reciting a chapter of the Quran, dying in a position facing Mecca, and dying in a holy place such as a mosque.

Method

Design

There was approval from the heads of hospitals prior to the collection of data. The study employed a descriptive design and was conducted in two hospitals that had oncology units in southeast Iran.

Participants

Referring to the hospitals' and patients' documents, 150 bereaved family members of patients who died within 1 year were identified. They were called by the researcher and asked to participate in this study.

Background Information

At first, a questionnaire was designed in order to obtain background information which was assumed to influence the good death concept. It included questions about gender, age, marital status, previous studies about death, and level of education.

Instruments

The good death concept was evaluated using the Good Death Inventory (GDI). The GDI was designed by Miyashita et al18 for evaluating a good death from the bereaved family members' perspective. This scale has 51 items. The items are graded from 1 to 7 (1 = strongly disagree to 7 = strongly agree). A factor analysis made by Miyashita et al18 on research made in a Japanese setting revealed that the questions could be divided into 18 domains: (1) physical and psychological comfort, (2) dying in a favorite place, (3) good relationship with medical staff, (4) maintaining hope and pleasure, (5) not being a burden to others, (6) good relationship with family, (7) physical and cognitive control, (8) environmental comfort, (9) being respected as an individual, (10) life completion, (11) natural death, (12) preparation for death, (13) role accomplishment and contributing to others, (14) unawareness of death, (15) fighting against cancer, (16) pride and beauty, (17) control over the future, and (18) religious and spiritual comfort.

For translation from English into Farsi, the standard forward–backward procedure was applied. Translation of the items and the response categories was independently performed by two professional translators, and then temporary versions were provided. Afterward they were back-translated into English, and after a careful cultural adaptation the final versions were provided. Translated questionnaires went through pilot testing. Suggestions by family members were combined into the final versions.

Reliability and validity

The translated scale was originally developed and tested in a Japanese cultural context, which is different from the research contexts, so the validity and reliability of both scales were rechecked. A factor analysis (rotated component matrix) on the results was done in order to examine the context validity of the GDI. The 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 analysis (Spearman's test) was used to examine relationships among demographic factors and scores on the GDI.

Results

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).

 

 

Table 1. Some GDI Subdomain Scores

SCALESUBSCALESMEAN/SD
Good Death InventoryBeing respected as an individual6.55/0.69
Not being treated as an object or a child6.33/0.63
Being respected for one's values6.45/0.65
Natural death6.36/0.52
Not being connected to medical instruments or tubes6.15/0.57
Not receiving excessive treatment6.24/0.47
Religious and spiritual comfort Patient felt that he or she was protected by a higher power

6.02/0.52

5.67/0.68

Having family support
Patient was supported by religion5.87/0.55
Control over the future6.55/0.65
Knowing how long one will live6. 50/0.54
Knowing what to expect about one's condition in the future6.43/0.58
Unawareness of death Dying without awareness that one is dying

3.05/0.72

2.84/0.66

Living as usual without thinking about death2.95/0.74

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).

Table 2. Correlation between GDI Domains and Demographic Factors

SCALESUBSCALEAGELEVEL OF EDUCATION
Good Death InventoryBeing respected as an individual

r = 0.325

P = 0.001

r = 0.344

P = 0.000

Beauty and pride

r = 0.274

P = 0.01

R = 0.259

P = 0.04

Good relationship with family

r = 0.293

P = 0.002

Unawareness of death

r = –0.315

P = 0.003


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 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 Bahar14 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 al22 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 al18 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's20 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's24 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] and [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 al18 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 al26 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.

 

 

References

1 I.M. Proot, H.H. Abu-Saad, H.F.J.M. Crebolder, K.A. Luker and G.A.M. Widdershoven, Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity, Scand J Caring Sci 17 (2003), pp. 113–121. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (53)

2 D.L. Patrick, R.A. Engelberg and J.R. Curtis, Evaluating the quality of dying and death, J Pain Symptom Manage 22 (2001), pp. 717–726. Article |

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3 , Longman Dictionary of Contemporary English, Pearson Education, Canada (2003).

4 C.H. Griggs, Community nurses' perceptions of a good death: a qualitative exploratory study, Int J Palliat Nurs 16 (2010), pp. 140–149. View Record in Scopus | Cited By in Scopus (0)

5 J.E. Winland-Brown, Public's perceptions of a good death and assisted suicide, Issues Interdisc Care 3 (2001), pp. 137–144. View Record in Scopus | Cited By in Scopus (1)

6 E.K. Vig and R.A. Pearlman, Good and bad dying from the perspective of terminally ill men, Arch Intern Med 164 (2004), pp. 977–981. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (27)

7 S. Van der Greest, Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana, Soc Sci Med 58 (2004), pp. 899–911.

8 K. Hattori, M.A. McCubbin and D.N. Ishida, Concept analysis of good death in the Japanese community, J Nurs Scholarsh 38 (2006), pp. 165–170. View Record in Scopus | Cited By in Scopus (9)

9 C.M. Ruland and S.M. Moore, Theory construction based on standards of care: a proposed theory of the peaceful end of life, Nurs Outlook 46 (1998), pp. 169–175. Article |

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10 W. Kongsuwan and R.C. Locsin, Promoting peaceful death in the intensive care unit in Thailand, Int Nurs Rev 56 (2009), pp. 116–122. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (3)

11 M.A. Tayeb, E. Al-zamel, M.M. Fareed and H.A. Abouellail, A ”good death”: perspectives of Muslim patients and health care providers, Ann Saudi Med 30 (2010), pp. 215–221. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (1)

12 WHO www.who.Int/countries/en/#s (2008).

13 European Values Study Group and World Values Surveys Association, European and World Values Surveys, four-wave integrated data file, 1981–2004 http://www.worldvaluessurvey.org/services/index.html.

14 A. Ghavamzadeh and B. Bahar, Communication with the cancer patients in Iran, information and truth, Ann N Y Acad Sci 809 (1997), pp. 261–265. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (9)

15 Cancer Institute of Iran www.cancer-institute.ac.ir Access date is June 2010.

16 N. Sareming, Islamic teaching on death and practices toward the dying person, J Soc Sci Hum 3 (1997), pp. 75–91.

17 A. Sheikh, Death and dying: A Muslim perspective, J R Soc Med 91 (1998), pp. 138–140. View Record in Scopus | Cited By in Scopus (16)

18 M. Miyashita, T. Morita, K. Sato, K. Hirai, Y. Shima and Y. Uchitomi, Good Death Inventory: a measure for evaluating good death from the bereaved family members' perspective, J Pain Symptom Manage 35 (2008), pp. 486–498. Article |

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19 H. Murata, Spiritual pain and its care in patients with terminal cancer: construction of a conceptual framework by philosophical approach, Palliat Support Care 1 (2003), pp. 15–21. View Record in Scopus | Cited By in Scopus (12)

20 K.E. Steinhauser, E.C. Clipp, M. McNeilly, N.A. Christakis, L.M. McIntyre and J.A. Tulsky, In search of a good death: observations of patients, families, and providers, Ann Intern Med 132 (2000), pp. 825–832. View Record in Scopus | Cited By in Scopus (372)

21 S. Iranmanesh, T. Haggstrom, K. Axelsson and S. Savenstedt, Swedish nurses' experiences of caring for dying people: a holistic approach, Holist Nurs Pract 23 (2009), pp. 243–252. View Record in Scopus | Cited By in Scopus (1)

22 N. Johnson, D. Cook, M. Giacomini and D. Willms, Towards a good death: end of life narratives constructed in an intensive care unit, Cult Med Psychiatry 24 (2000), pp. 275–295. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (17)

23 R.L. Beckstrand, L.C. Callister and K.T. Kirchhoff, Providing a ”good death”: critical care nurses' suggestions for improving end-of-life care, Am J Crit Care 15 (2006), pp. 38–45. View Record in Scopus | Cited By in Scopus (49)

24 S.T. Tang, T.W. Liu, M.S. Lai, L.N. Liu, C.H. Chen and S.L. Koong, Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan, Cancer Invest 24 (2006), pp. 360–366. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (21)

25 M. Miyashita, M. Sanjo, K. Morita and Y. Uchitomi, Good death in cancer care: a nationwide quantitative study, Ann Oncol 18 (2007), pp. 1090–1097. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (31)

26 A. Montazeri, A. Tavoli, M.A. Mohagheghi, R. Roshan and Z. Tavoli, Disclosure of cancer diagnosis and quality of life in cancer patients: should it be the same everywhere, BMC Cancer 9 (2009), pp. 1–21.

27 R.J. Russac, C. Gatliff, M. Reece and D. Spottswood, Death anxiety across the adult years: an examination of age and gender effects, J Death Stud 31 (2007), pp. 549–561. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (11)

 

 


Correspondence to: Habibollah Hosseini, Razi Faculty of Nursing and Midwifery, Kerman Medical University, Kerman, IranPhone: 00983413205220; Fax: 00983413205218

Original research

Evaluating the “Good Death” Concept from Iranian Bereaved Family Members' Perspective

Sedigheh Iranmanesh PhDa, Habibollah Hosseini doctoral student

, a,
and Mohammad Esmaili MSc studenta

a Razi Faculty of Nursing and Midwifery, Kerman Medical University, Kerman, Iran

Received 4 August 2010; 

accepted 1 December 2010. 

Available online 2 April 2011.

Abstract

Improving end-of-life care demands that first you define what constitutes a good death for different cultures. This study was conducted to evaluate a good death concept from the Iranian bereaved family members' perspective. A descriptive, cross-sectional study was designed using a Good Death Inventory (GDI) questionnaire to evaluate 150 bereaved family members. Data were analyzed by SPSS. Based on the results, the highest scores belonged to the domains “being respected as an individual,” “natural death,” “religious and spiritual comfort,” and “control over the future.” The domain perceived by family members as less important was “unawareness of death.” Providing a good death requires professional caregivers to be sensitive and pay attention to the preferences of each unique person's perceptions. In order to implement holistic care, caregivers must be aware of patients' spiritual needs. Establishing a specific unit in a hospital and individually treating each patient as a valued family member could be the best way to improve the quality of end-of-life care that is missing in Iran.

Article Outline

Context

Method
Design
Participants
Background Information
Instruments
Reliability and validity
Data Collection and Analysis

Results
Participants
Findings

Discussion

Conclusion
Limitation

References

A life-threatening disease such as cancer involves patients and their families. Even if people today prefer to die at home and to be cared for by their family members, they still need professional services and support.1 Improving the quality of death has become a major need for patients, their families and loved ones, as well as health-care professionals, researchers, and policy makers who organize and provide care.2 Since the 1960s, our approach to this need has been palliative care. The philosophy of end-of-life care is to alleviate suffering and to improve the quality of life of patients who are facing death. 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 Longman Dictionary of Contemporary English3 defines good death as “the calm end of life of a person without any worry or excitement.” Family members who face the death of their loved ones are key to evaluating the good death concept. Their views on death could be used by the health-care system to evaluate the quality of end-of-life care. Therefore, the concept of a “good death” as perceived by the general Iranian population could be sought by studying the views of a representative sample of bereaved family members. Health-care providers, who are aware of what constitutes a good death, have an openness and flexibility when working with dying patients to improve quality of care as well as the patient's quality of life.

From a review of different studies, the core quality of a good death varies among cultures. In a qualitative study, Griggs4 analyzed perceptions of a “good death” among community nurses in England. Nurses identified several key themes for a good death, such as: symptom control, patient choice, honesty, spirituality, interprofessional relationships, effective preparation, organization, and provision of seamless care. American researchers concluded that a good death involves respect for the individual's autonomy with open communication among family members.5 Vig and Pearlman6 also reported that “good death” has an individual meaning for Americans and does not have a consensual meaning. In Ghana, Van der Greest7 found that a good death is integrated with a peaceful death, meaning peace with others, being at peace with one's own life and soul, dying in the fullness of time, dying at home, and being surrounded by relatives. For the Japanese, Hattori et al.8 found that a good death is a multidimensional, individual experience based on personal and sociocultural domains of life that incorporate the person's past, present, and future. In Norway, Ruland and Moore9 conducted research on the theory of a peaceful end of life which has five major concepts: not being in pain, experience of comfort, experience of dignity/respect, being at peace, and closeness to significant others/persons who care. In Thailand, people commonly used “peaceful death” instead of “good death.” Kongsuwan and Locsin10 reported that Thai intensive care unit nurses perceived peaceful death as awareness of dying, creating a caring environment, and promoting end-of-life care. In Muslim society, Tayeb et al11 identified three domains related to a good death: religion and faith, self-esteem and personal image, and satisfaction about family security.

After reviewing these studies, we determined there is no universal definition of good death and it is based on sociocultural context. The subject of death and dying has a religious and sociocultural background, yet Iranian health-care providers mainly depend on Western references. Moreover, upon reviewing the literature in Iran, no published study related to defining the concept of “good death” was located. This descriptive study was thus designed to determine what constitutes a good death in the Iranian context.

Context

Iran is one of the most ancient world civilizations and part of the Middle East culture. The population is approximately 67 million, and of this 51% is less than 20 years old and 6.5% is 65 or older.12 The majority (99.4%) of the people in Iran consider themselves as religious,13 and religious beliefs strongly and explicitly deal with death.14

Iranians are familiar with death. Besides the Iran–Iraq war and natural disasters in recent years, the major causes (65%) of death among Iranians are heart disease, cancer, and accidents.15 Apart from chronic disease, accidents seem to be a significant cause of death among Iranian people. In Iran, the overall national curriculum for registered nursing education includes just a few hours of academic education about death. End-of-life care remains a new topic in the Iranian health-care system. Hospice care units, which are common in Western countries, are not available in Iran.

Most religions are represented in this country; however, Islam is the most prevalent. Sareming16 indicates that Muslims are taught that Allah gives birth and death. Allah determines the appointed term for every human. Only Allah knows when, where, and how a person will die. For a Muslim, death is the transition from the earthly form of existence to the next.17 Tayeb et al11 explained that Muslims prefer to approach death with a certainty that someone is there to prompt them with the Shahadah, reciting a chapter of the Quran, dying in a position facing Mecca, and dying in a holy place such as a mosque.

Method

Design

There was approval from the heads of hospitals prior to the collection of data. The study employed a descriptive design and was conducted in two hospitals that had oncology units in southeast Iran.

Participants

Referring to the hospitals' and patients' documents, 150 bereaved family members of patients who died within 1 year were identified. They were called by the researcher and asked to participate in this study.

Background Information

At first, a questionnaire was designed in order to obtain background information which was assumed to influence the good death concept. It included questions about gender, age, marital status, previous studies about death, and level of education.

Instruments

The good death concept was evaluated using the Good Death Inventory (GDI). The GDI was designed by Miyashita et al18 for evaluating a good death from the bereaved family members' perspective. This scale has 51 items. The items are graded from 1 to 7 (1 = strongly disagree to 7 = strongly agree). A factor analysis made by Miyashita et al18 on research made in a Japanese setting revealed that the questions could be divided into 18 domains: (1) physical and psychological comfort, (2) dying in a favorite place, (3) good relationship with medical staff, (4) maintaining hope and pleasure, (5) not being a burden to others, (6) good relationship with family, (7) physical and cognitive control, (8) environmental comfort, (9) being respected as an individual, (10) life completion, (11) natural death, (12) preparation for death, (13) role accomplishment and contributing to others, (14) unawareness of death, (15) fighting against cancer, (16) pride and beauty, (17) control over the future, and (18) religious and spiritual comfort.

For translation from English into Farsi, the standard forward–backward procedure was applied. Translation of the items and the response categories was independently performed by two professional translators, and then temporary versions were provided. Afterward they were back-translated into English, and after a careful cultural adaptation the final versions were provided. Translated questionnaires went through pilot testing. Suggestions by family members were combined into the final versions.

Reliability and validity

The translated scale was originally developed and tested in a Japanese cultural context, which is different from the research contexts, so the validity and reliability of both scales were rechecked. A factor analysis (rotated component matrix) on the results was done in order to examine the context validity of the GDI. The 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 analysis (Spearman's test) was used to examine relationships among demographic factors and scores on the GDI.

Results

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).

 

 

Table 1. Some GDI Subdomain Scores

SCALESUBSCALESMEAN/SD
Good Death InventoryBeing respected as an individual6.55/0.69
Not being treated as an object or a child6.33/0.63
Being respected for one's values6.45/0.65
Natural death6.36/0.52
Not being connected to medical instruments or tubes6.15/0.57
Not receiving excessive treatment6.24/0.47
Religious and spiritual comfort Patient felt that he or she was protected by a higher power

6.02/0.52

5.67/0.68

Having family support
Patient was supported by religion5.87/0.55
Control over the future6.55/0.65
Knowing how long one will live6. 50/0.54
Knowing what to expect about one's condition in the future6.43/0.58
Unawareness of death Dying without awareness that one is dying

3.05/0.72

2.84/0.66

Living as usual without thinking about death2.95/0.74

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).

Table 2. Correlation between GDI Domains and Demographic Factors

SCALESUBSCALEAGELEVEL OF EDUCATION
Good Death InventoryBeing respected as an individual

r = 0.325

P = 0.001

r = 0.344

P = 0.000

Beauty and pride

r = 0.274

P = 0.01

R = 0.259

P = 0.04

Good relationship with family

r = 0.293

P = 0.002

Unawareness of death

r = –0.315

P = 0.003


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 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 Bahar14 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 al22 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 al18 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's20 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's24 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] and [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 al18 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 al26 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.

 

 

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Correspondence to: Habibollah Hosseini, Razi Faculty of Nursing and Midwifery, Kerman Medical University, Kerman, IranPhone: 00983413205220; Fax: 00983413205218

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