Death Studies, 39: 307–315, 2015 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print=1091-7683 online DOI: 10.1080/07481187.2014.951496

Perceptions of a Good Death Among German Medical Students Cornelia Meffert Department of Palliative Medicine, University Medical Center Freiburg, Freiburg, Germany

Ulrich Sto¨ßel and Mirjam Ko¨rner Medical Psychology and Medical Sociology, Medical Faculty, University of Freiburg, Germany

Gerhild Becker Department of Palliative Medicine, University Medical Center Freiburg, Freiburg, Germany

The purpose of our study was to examine the perceptions of a good death among medical students, who are future care providers. The authors identified 9 domains that contribute to a good death according to first- and fifth-year medical students (N ¼ 432). From their perspective, being free from pain and physical distress is only 1 important component of a good death, and other elements such as psychosocial issues should also be taken into account. A majority of medical students considers psychosocial well-being as a highly relevant aspect of patients’ conditions. The results of this study could help to develop concepts for better care and more empathy, which are needed to ensure a good death for all patients.

In the course of history, the concept of a good death has changed considerably. In premodern time, most people died at home, typically surrounded by family and members of the community. At the turn of the 20th century, the concept of a good death shifted to a ‘‘managed’’ death. This implies that death became medicalized and occurred mostly in hospitals (GrandaCameron & Houldin, 2012). Rather than being viewed as a normal part of life, death was seen as a medical failure (Walters, 2004). Nowadays, achievements in modern medicine have increased the possibility of prolonging the life of patients with incurable diseases. However, this is not always considered the most appropriate goal of end-of-life care. Instead, modern end-of-life care, such as palliative care, emphasizes symptom control, alleviation of suffering,

Received 11 October 2013; accepted 22 July 2014. Address correspondence to Cornelia Meffert, Department of Palliative Medicine, Palliative Care Research Group, University Medical Center Freiburg, Robert-Koch-Str. 3, 79106 Freiburg, Germany. E-mail: [email protected]

and preserving quality of life. In cases of extreme suffering among the terminally ill, it is sometimes even necessary to administer high dosages of sedatives while stopping life-sustaining treatment, which may also accelerate the process of dying (Rietjens, van der Heide, Onwuteaka-Philipsen, van der Maas, & van der Wal, 2006). In light of this context, questions arise regarding the essential characteristics of a good death, such as being free of pain, being conscious until death, avoiding dependence on others, or being able to prepare for death and say goodbye to loved ones. People may have different ideas about good death and bad death, depending on their personal experiences and the cultural and social context in which they were raised (Lee, Jo, Chee, & Lee, 2008). Empirical research on the perceptions of a good death has included perspectives of patients, caregivers, and family members (e.g., Vig & Pearlman, 2004; Teno, Casey, Welch, & Edgman-Levitan, 2001; Steinhauser et al., 2001). Various studies have investigated the issue of good death by applying different methodological

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approaches (Anderson, Williams, Bost, & Barnard, 2008; Rudisill & Merriman, 1987). Some of these studies have also taken a closer look at the effects of educational interventions in medical curricula (e.g., Lloyd-Williams & Dogra, 2004; Linn, Moravec, & Zeppa, 1982). However, there is still a limited understanding of young adults’ attitudes toward death and dying (Cox et al., 2013). Until now, no study has examined how German medical students perceive a good death. Yet, it is extremely important to understand the views of future care providers on this issue, because their views will likely impact their attitudes and practice. Presently, there are only a few questionnaires that measure perceptions of a good death. The majority of studies on this topic have used qualitative methods, such as structured or semistructured interviews (e.g., Vig & Pearlman, 2004). One of the few existing quantitative instruments concerning concepts of a good death was developed by a Japanese research group. They applied that instrument in a nationwide survey (Miyashita, Sanjo, Morita, Hirai, & Uchitomi, 2007). The care of patients with advanced, incurable diseases requires a thorough medical education, encompassing not only knowledge and skills but also attitudes (Weber, Schmiedel, Nauck, & Alt-Epping, 2011). The purpose of our study was to examine the perceptions of a good death among medical students, and thus to contribute to the improvement of their medical education by establishing basic information regarding their concepts of a good death. We examined differences in beliefs about what constitutes a good death between various subgroups of medical students. We expected students who had completed more of their medical training and had come face to face with the realities of clinical practice to have different ideas about a good death than beginners. With regard to fear of dying and worries about the process of aging and dying, Haaf and Huppmann (1992) found significant differences between male and female medical students. We therefore also expected gender differences concerning students’ perceptions of a good death.

METHODS We conducted a questionnaire-based, cross-sectional study to evaluate the concepts of a good death among first- and fifth-year medical students. The participants of the study were recruited in courses and lectures at the University of Freiburg, Germany. Development of the Questionnaire The questionnaire was developed in our research group by an interdisciplinary panel of experts in palliative care and medical sociology. It contains questions such as

number of experienced deaths, preferred place of death, and what will happen after death. Furthermore, participants were asked to rate the importance of 57 end-of-life issues that might contribute to a good death. These 57 items were taken from the Japanese questionnaire mentioned above which was published in English (Miyashita et al., 2007). The authors identified 18 domains related to a good death in Japan: (a) physical and psychological comfort, (b) dying in a favorite place, (c) good relationship with medical staff, (d) maintaining hope and pleasure, (e) not being a burden to others, (f) good relationship with family, (g) physical and cognitive control, (h) environmental comfort, (i) being respected as an individual, (j) life completion, (k) natural death, (l) preparation for death, (m) role accomplishment and contributing to others, (n) unawareness of death, (o) fighting against cancer, (p) pride and beauty, (q) control over the future, and (r) religious and spiritual comfort. We translated the items of this questionnaire into German and then had them retranslated into English by a native English speaker, confirming high correspondence between translation and retranslation. We opted for this questionnaire because it portrays to a large extent the 12 principles of a good death that were identified by the authors of the final report on ‘‘The Future of Health and Care of Older People’’ (‘‘Debate of the Age Health and Care Study Group: The future of health and care of older people: The best is yet to come,’’ 1999, cited in Smith, 2000). Details of the 57 items are shown in the results section. A 5-point Likert scale ranging from ‘‘not important’’ to ‘‘very important’’ was used to answer the questions. Before implementation, the questionnaire was tested by six students for comprehensibility, acceptance, duration, and handling. According to local ethics standards, no formal ethical approval was required for this survey. Statistical Analyses SPSS 21.0 was used for the statistical analysis. Differences between groups were tested for significance using Mann-Whitney U tests. To detect even small differences, no alpha error correction was made despite multiple testings. Instead, differences of p < .05 were assessed– conservatively–as significant. To identify domains of a good death, we used principal component analysis (with varimax rotation) and Cronbach’s alpha coefficients. The scree plot was used to determine the optimal number of components. To prevent cross-loadings, we only considered factor loadings >0.40. Domain scores were calculated by totaling the mean values of all components belonging to each domain, with higher values indicating higher importance of the domain. Factors predicted to influence the importance of the various domains were investigated using multiple linear regression analyses. As potential predictors, we

PERCEPTIONS OF A GOOD DEATH TABLE 1 Student Characteristics Characteristics

Value

Age in years, M  SD Gender, no. (%) Male Female Nationality, no. (%) German Others Religion, no. (%) Catholic Protestant Other No religious affiliation Active practice of religion, no. (%) No Yes Experienced deaths, no. (%) No Yes Average number of experienced deaths, M  SD (Range: 1 to 1,000 deaths)

23.3  3.7 144 (33.3) 287 (66.4)

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in the immortality of the soul, resurrection, rebirth, or transformation of matter into energy. Almost half of the students (43.5%) named ‘‘at home’’ as their preferred place of death, only 2.8% a hospice or palliative care unit, and 45.1% did not (yet) know which place they would prefer. A majority of students (65.3%) reckoned that people in our society are not confronted enough with questions about death and dying.

390 (90.3) 40 (9.3)

Components of a Good Death 167 (38.7) 151 (35.0) 26 (6.0) 77 (17.8) 287 (66.4) 101 (23.4) 147 (34.0) 284 (65.7) 12.3  84.8

Note: Totals that do not add up to N ¼ 432 are the result of missing values.

examined age, gender, nationality, experienced deaths, religious affiliation, active practice of one’s own religion, as well as whether an occupation was learned before the start of medical studies. Participants We asked 600 medical students to fill in the written questionnaire about their perception of a good death. Of the 432 students who responded, 254 (58.8%) were first-year and 178 (41.2%) were fifth-year medical students (overall response rate 72.0%). Students’ characteristics are shown in Table 1. Nearly a quarter (22.7%) had an occupation or was already professionally trained before they started their medical studies. A majority of these had worked as nurses or paramedics. This may explain the large range in the average number of experienced deaths. For example, students who worked as paramedics for several years were confronted with a great number of accident victims and dying patients. Two students, who had both worked as intensive care nurses for a number of years, reported that they had already experienced about 1,000 deaths.

RESULTS In regard to what will happen after death, 24.8% of the study participants stated that they did not have any concrete notion, 27.5% believed that nothing at all will happen after death, and 43.7% reported believing

Using principal component analysis, we identified nine domains of a good death: (a) family and friends, (b) psychological comfort, (c) control, (d) trust in medical staff, (e) religious and spiritual comfort, (f) environmental comfort, (g) not being a burden to others, (h) consistency and safety, and (i) fighting against death. Cronbach’s alpha coefficients were 0.60, except for ‘‘trust in medical staff’’ and ‘‘consistency and safety’’ (Table 2). Fifteen items could not be allocated to any domain and are regarded as single items (listed in Table 3). ‘‘Having family support,’’ ‘‘seeing people whom one wants to see,’’ and ‘‘feeling that one’s life was completed’’ turned out to be the three most frequently stated ‘‘very important’’ aspects of a good death. In contrast, ‘‘not having a change in one’s appearance,’’ ‘‘dying without awareness that one is dying,’’ and ‘‘not being informed of bad news’’ were the three least frequently chosen responses. We found significant differences between male and female medical students. Although male students emphasized ‘‘being able to eat,’’ ‘‘being mentally clear,’’ and ‘‘living in calm circumstances’’ as important for a good death, women tended to stress components such as ‘‘being reconciled with people,’’ ‘‘having people who listen to me,’’ and ‘‘having family to whom one can express one’s feelings’’ (Table 3). In their beliefs about what constitutes a good death, we also found significant differences (p < .010) between first-year and fifth-year medical students. Whereas fifth-year students placed a high value on ‘‘having no financial worries’’ and ‘‘living in calm circumstances,’’ first-year students emphasized ‘‘fighting against disease until one’s last moment,’’ ‘‘not being connected to medical instruments or tubes,’’ ‘‘being mentally clear,’’ and ‘‘not exposing one’s physical and mental weakness to family.’’ Students who believed in the immortality of the soul or expected something to happen after death (resurrection, rebirth, or transformation of matter into energy) differed significantly from those who either believed that nothing at all will happen after death or those who had no concrete notion (p < .001). The latter placed a high value on ‘‘controlling time of death, like euthanasia. The former tended to stress components such as ‘‘living in hope,’’ ‘‘having faith,’’ ‘‘feeling that one is protected by a higher power beyond oneself,’’ ‘‘feeling that one’s

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C. MEFFERT ET AL. TABLE 2 Conceptualization of a Good Death by Factor Analysis

Domains (score values)

Components

Family= friends (0–32)

Having family support Seeing people whom one wants to see Feeling that one’s life was completed Believing that one’s family will do well after one’s death Spending enough time with one’s family Saying goodbye to dear people Having family by one’s side when one is going to die Family is prepared for one’s death Psychological comfort (0–24) Having some pleasure in daily life Feeling that one’s life is worth living Having family to whom one can express one’s feelings Living positively Having people who listen to me Trusting physician Control (0–24) Being respected for one’s values Discussing one’s treatment with one’s physician Being prepared for dying Knowing what to expect about one’s condition in the future Having planned arrangements for one’s grave, funeral and last will Knowing how long one will live Religious and spiritual comfort (0–16) Living in hope Having faith Feeling thankful to people Feeling that one is protected by a higher power beyond oneself Trust in medical staff (0–8) Having a physician or nurse with whom one can discuss fears of death Having a professional nurse with whom one feels comfortable Environmental comfort (0–20) Being able to stay at one’s favorite place Living in calm circumstances Living like being at home Not being connected to medical instruments or tubes Receiving consistent care from the same physician and nurse Not being a burden to others (0–20) Not being a burden to family members Not making trouble for others Living as usual without thinking about death Not receiving pity from others Not exposing one’s physical and mental weakness to family Consistency= safety (0–12) Having no financial worries Maintaining one’s role in family of occupational circumstances Not having a change in one’s appearance Fighting against death (0–12) Believing that one used all available treatments Fighting against disease until one’s last moment Living as long as possible

Factor loading

Mean (SD)

Cron-bach’s a

0.48 0.62 0.43 0.55 0.56 0.58 0.53 0.58 0.54 0.65 0.58 0.58 0.44 0.49 0.41 0.45 0.61 0.62 0.49 0.43 0.43 0.77 0.48 0.75 0.57 0.48 0.63 0.49 0.68 0.41 0.45 0.71 0.66 0.43 0.56 0.56 0.53 0.62 0.50 0.64 0.66 0.71

28.5 (3.3)

0.77

21.1 (2.6)

0.72

17.0 (3.3)

0.62

10.8 (3.4)

0.73

5.9 (1.6)

0.48

12.9 (3.1)

0.60

11.1 (3.4)

0.67

5.9 (2.2)

0.51

6.0 (2.5)

0.66

Note: Rotated component matrix; N ¼ 432; principal component analysis with varimax rotation.

life is worth living,’’ ‘‘feeling thankful to people,’’ ‘‘being reconciled with people,’’ and ‘‘dying a natural death.’’ Our results also show a clear difference (p < .010) between people who actively practiced a religion and those who did not. The latter placed a much higher value on the following aspects: ‘‘controlling time of death, like euthanasia,’’ ‘‘not making trouble for others,’’ ‘‘being independent in daily activities,’’ and ‘‘living as usual without thinking about death.’’ Also interesting was the fact that foreign students emphasized the relevance of the following aspects significantly more than German students (p < .010):

‘‘fighting against disease until one’s last moment,’’ ‘‘dying a natural death,’’ ‘‘feeling thankful to people,’’ ‘‘living positively,’’ ‘‘living in hope,’’ ‘‘living as usual without thinking about death,’’ ‘‘being free from psychological distress,’’ and ‘‘not exposing one’s physical and mental weakness to family’’ (data not shown). Factors Influencing the Importance of the Domains of a Good Death When evaluating the importance of the domains of a good death using the predictors listed above (see the

PERCEPTIONS OF A GOOD DEATH

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TABLE 3 Percentage of ‘‘Very Important’’ Components of a Good Death Domain Family= friends

Component

Having family support Seeing people whom one wants to see Feeling that one’s life was completed Believing that one’s family will do well after one’s death Spending enough time with one’s family Saying good-bye to dear people Having family by one’s side when one is going to die Family is prepared for one’s death Psychological comfort Having some pleasure in daily life Feeling that one’s life is worth living Having family to whom one can express one’s feelings Living positively Having people who listen to me Trusting physician Control Being respected for one’s values Discussing one’s treatment with one’s physician Being prepared for dying Knowing what to expect about one’s condition in the future Having planned arrangements for one’s grave, funeral and last will Knowing how long one will live Religious and spiritual comfort Living in hope Having faith Feeling thankful to people Feeling that one is protected by a higher power beyond oneself Trust in medical staff Having a physician or nurse with whom one can discuss fears of death Having a professional nurse with whom one feels comfortable Environmental comfort Being able to stay at one’s favorite place Living in calm circumstances Living like being at home Not being connected to medical instruments or tubes Receiving consistent care from the same physician and nurse Not being a burden to others Not being a burden to family members Not making trouble for others Living as usual without thinking about death Not receiving pity from others Not exposing one’s physical and mental weakness to family Consistency= safety Having no financial worries Maintaining one’s role in family of occupational circumstances Not having a change in one’s appearance Fighting against death Believing that one used all available treatments Fighting against disease until one’s last moment Living as long as possible Single items Being free from pain and physical distress Not being treated as an object or a child Being reconciled with people Being mentally clear Being free from psychological distress Feeling that one can contribute to others Having no regrets Dying a natural death Being independent in daily activities Being able to eat Being free from trivial routines Family has regrets for one’s death Controlling time of death, like euthanasia Not being informed of bad news Dying without awareness that one is dying 

Mann-Whitney U tests.

All (%) Male (%) Female (%) 81.2 74.0 71.2 70.8 65.5 64.7 56.4 41.3 67.1 65.4 62.1 58.3 56.0 48.6 58.6 50.6 29.2 26.4 18.9 7.2 46.2 33.8 25.8 20.6 36.6 28.0 27.2 20.7 19.7 19.1 5.3 25.3 23.2 8.9 7.5 4.9 17.9 7.7 2.6 14.2 9.8 7.4 70.7 58.8 54.7 49.4 46.7 46.6 37.2 28.1 22.5 15.9 12.0 7.9 7.7 4.0 4.0

75.0 66.0 61.5 63.2 57.3 58.3 54.5 32.6 57.3 59.7 51.1 58.0 42.4 42.4 51.0 45.8 25.7 24.8 15.5 5.6 43.4 26.6 27.1 16.2 25.9 28.7 27.1 24.5 16.1 20.1 5.6 26.4 22.9 9.2 7.0 5.7 16.7 8.3 0.7 11.1 14.6 6.3 70.8 55.6 37.5 55.6 40.6 44.4 35.0 25.7 18.8 23.8 11.8 2.8 9.0 4.9 2.1

84.3 78.0 76.0 74.6 69.6 67.9 57.3 45.6 72.0 68.3 67.6 58.4 62.9 51.7 62.4 53.0 31.0 27.2 20.6 8.0 47.6 37.4 25.1 22.7 42.0 27.6 27.3 18.8 21.5 18.6 5.2 24.8 23.3 8.7 7.8 4.5 18.5 7.3 3.5 15.7 7.3 8.0 70.6 60.5 63.3 46.3 49.8 47.7 38.3 29.4 24.4 11.9 12.1 10.5 7.0 3.5 4.9

p .018 .004 .001 .010 .014 NS NS .005 .002 .041

Perceptions of a good death among German medical students.

The purpose of our study was to examine the perceptions of a good death among medical students, who are future care providers. The authors identified ...
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