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

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).