End-of-Life Activities Among Community-Dwelling Older Adults in Japan

Abstract

This study explored end-of-life (EOL) activities among community-dwelling Japanese older adults and the relationships between EOL activities and related variables. One hundred twenty-three older adults (38 men, 87 women; mean age = 72.54 years) who attended EOL seminars were surveyed regarding EOL activities, attitudes toward death, and mental health status. Cluster analysis of EOL activities revealed three clusters: Planning (e.g., had planned own funeral arrangements), Preference (e.g., had talked about EOL care with their family), and Preparation (e.g., already written their will). The number of EOL-related events attended was positively correlated with Preparation, while fear of death was negatively associated with Preference. Older adults with bereavement experience had higher Planning and Preparation scores than those without such experience.

Keywords

end-of-life Japanese older adults attitudes toward death Shūkatsu

In recent years, many older adults must face decision-making regarding end-of-life (EOL), such as medical treatment choices and funeral/burial preplanning. Advanced directives (ADs) and advance care planning (ACP) are especially relevant in EOL medical care (Detering, Hancock, Reade, & Silvester, 2010). ADs involve living wills and durable power of attorney for health care. Although ADs have been widely implemented in the past, it has been reported that patients and their families were not satisfied with their effectiveness due to inadequate emotional support for the dying person and family (Teno, Gruneir, Schwartz, Nanda, & Welte, 2007). Furthermore, many older adults have a significantly reduced decision-making capacity (e.g., Silveria, Kim, & Langa, 2010), and the use of ADs has been questioned. Instead, ACP has been gradually gaining greater public attention. ACP is a technical process whereby patients, family members, and significant others, in consultation with health-care providers, make collaborative decisions about a patient’s future health care should they become incapable of participating in medical treatment decisions (Singer, Robertson, & Rony, 1996). Despite these advantages, the use of ACP remains low because of several obstacles, including lack of skills to deal with patients’ vague requests and difficulties defining the “right moment” (De Vleminck et al., 2013).

In addition, there are financial arrangements, funeral preplanning, and other practical concerns (e.g., solitary death) that an individual and their family must resolve at the EOL. However, such aspects of EOL planning have generally been considered separately from health-care decisions such as AD and ACP. Factors such as health care, financial, and funeral decisions are interrelated in the process of EOL planning (Kelly, Masters, & DeViney, 2013), and thus it makes more sense to examine all these EOL activities together. In this article, we examined EOL activities among community-dwelling Japanese older adults and how the EOL-related activities were interrelated.

EOL issues, both technical and practical, have emerged as a national priority in Japan, given that the older adult population accounted for 27.6% of the total population in 2015 (Cabinet Office, 2017). EOL activities, commonly known as Shūkatsu (終活), encompass not only decision-making regarding medical treatments but also preplanning for one’s funeral and burial and writing an “ending note” (written record of one’s EOL planning). The literature suggests that Shūkatsu among Japanese older adults is promoted by fears and anxieties related to solitary death, family care burdens, and funeral arrangements (Kawashima, 2016). According to the Japan Ministry of Economy, Trade and Industry (2012), almost 70% of those aged 60 years and older know about an ending note, but only 3.2% had actually prepared one. In addition, only around 3% of older adults had estate or burial planning, with most older adults indicating “that is still later on” or that they had “no reason” for making such plans.

While there are no legal guidelines for ADs and ACP in Japan, the body of empirical research has increased over recent years (e.g., Kimura & Ando, 2015; Shimada et al., 2015; Sumita, 2015). For example, Kondo et al. (2014) found that the choice of EOL care was related to actual place of death. Fukui and Yoshiuchi (2012) reported preferences among the Japanese population for the place of EOL care and their need to receive health-care services. Although these studies indicate the importance of EOL among Japanese older adults, no previous psychological research has explored EOL activities among Japanese community-dwelling older adults and the relationships between these activities and other variables (e.g., gender, health status, religiosity, etc.; e.g., Kelly et al., 2013; Schrader, Nelson, & Eidsness, 2010). In particular, a previous report suggested high concerns about preparing one’s cemetery plot and preplanning of funeral arrangements among Japanese older adults (Ministry of Economy, Trade and Industry, 2012); therefore, the sociocultural context should be explored integrally. Furthermore, attitudes toward death and dying may affect older adults’ EOL activities (Sallnow, Richardson, Murray, & Kellehear, 2016) and should also be considered.

As such, the primary purpose of this study is to explore EOL activities among Japanese community-dwelling older adults and the relationships between these activities and other variables, including attitudes toward death, mental health status, and potentially related demographic characteristics such as gender, health status, and religiosity.

Methods

Participants and Procedure

We distributed 271 questionnaires to community-dwelling older adults who attended Shūkatsu seminars in Western Japan during 2016 to 2017. In total, 177 questionnaires were returned, with a response rate of 45.40%. After eliminating incomplete questionnaires, 123 were included in the present analysis (mean age = 72.54 years, standard deviation [SD] = 7.05 years; Table 1).

Table 1.

Participants’ Characteristics (N = 123).

	N (%)	M (SD)
Age		72.54 (7.05)
60–69	42 (34.10)
70–79	61 (49.60)
Over 80	20 (16.30)
Gender
Male	38 (30.40)
Female	87 (69.60)
Living alone	20 (16.00)
Having religious faith	48 (38.40)
Annual number of visits to family plots		7.21 (27.62)
Number of attending events about EOL issues		1.31 (1.64)
Experience of nursing care (Yes)	42 (33.60)
Bereavement experience for losing a spouse/child (Yes)	32 (25.80)

Note. EOL = end-of-life; SD = standard deviation.

All participants provided informed consent before participating and were involved in this study on a voluntary basis.

Measures

EOL activities

We developed an original scale to assess EOL activities. First, we reviewed previous reports regarding EOL issues (Ministry of Economy, Trade and Industry, 2012) and conducted in-depth interviews with practitioners who had engaged in EOL issues. Next, questionnaire items were generated based on these interviews and existing literature. The developed scale comprised eight “yes/no” questions covering participants’ EOL activities, such as wills, funeral preplanning, and discussions about EOL care, including life-sustaining treatment.

Attitudes toward death

Attitudes toward death were measured with the Attitude Toward Death Scale for middle-aged and older adults (Tange, Nishita, Tomida, Ando, & Shimokata, 2013). This 25-item scale measures multidimensional attitudes toward death among middle-aged and older adults. The scale comprises five subscales: Fear of Death (nine items), Belief in Existence of Afterlife (four items), Intention to Live Out Own Life (four items), Meaning of Death for Life (five items), and Approval of Death With Dignity (three items). Respondents indicate their level of agreement with each item on a 5-point scale (1 = strongly agree, 5 = strongly disagree). Cronbach’s α coefficients for our study population were .89 (Fear of Death), .68 (Belief in Existence of Afterlife), .66 (Intention to Live Out Own Life), .51 (Meaning of Death for Life), and .48 (Approval of Death With Dignity). We excluded two subscales (Meaning of Death for Life and Approval of Death With Dignity) from subsequent analyses because of insufficient internal consistency. In this study, the means and SDs of the three included subscales were, respectively, 22.12, 8.05 for Fear of Death, 11.26 and 3.28 for Belief in Existence of Afterlife, and 17.10 and 2.72 for Intention to Live Out Own Life, M = 17.10, SD = 2.72.

Mental health

The Kessler Psychological Distress Scale (K6; Furukawa et al., 2008; Kessler et al., 2003) was used to assess participants’ mental health status. The K6 is a nonspecific distress scale that assesses psychological distress during the past 30 days. Responses are recorded on a 5-point scale (0 = none of the time, 4 = all of the time). In this study, the K6 had a mean of 11.33, SD of 3.81, and Cronbach’s α of .77.

Demographic variables

Demographic information included gender, age, religious affiliation, family structure (living alone or with others), number of visits to family cemetery plots, frequency of EOL issues-related seminars, past experience of providing nursing care for families and relatives, and bereavement experience of losing a spouse or child.

Data Analysis

First, we examined descriptive statistics for EOL activities. Next, we performed a cluster analysis using EOL activities and created groups based on the results. Finally, we conducted Pearson’s correlational analysis and t tests to examine the relationships between EOL activities and other variables (attitudes toward death, psychological distress, and demographic variables). Data were analyzed using SPSS version 22 (IBM Corp., Armonk, NY, USA). A p value of <.05 was considered statistically significant.

Results

Approximately three quarters of participants had made decisions about their cemetery plots (n = 92, 74.8%) and got to know about their estates and finances (n = 93, 76.9%). In total, 81 participants (65.9%) had already talked to their family about their plots, and 80 participants (65%) had a preference about their funeral arrangements. In addition, almost half of the participants had already talked to their family about their preferences regarding EOL care such as life-sustaining treatment (n = 62, 50.4%) and contacted companies for their own funerals (n = 60, 48.8%). However, only 8.3% (n = 10) had already written their will.

The cluster analysis (squared Euclidean distance, Ward’s method) for the EOL activity items resulted in three groups. The first group was labeled Planning (M = 2.21, SD = 0.94) and included three items (e.g., “Have you made any decisions about your plot?” and “Have you got to know about your estates and approximate amount of money?”). The second group was labeled Preference (M = 1.65, SD = 1.11) and included three items (e.g., “Do you have any preferences for your funeral?” and “Have you already talked to your family about your preferences regarding EOL care such as life-sustaining treatment?”). The third group was labeled Preparation (M = 0.58, SD = 0.58) and included two items: “Have you already written your will?” and “Have you made contact with a funeral company?”

Table 2 presents the correlation coefficients for the variables (age, number of visits to family plots, attending events about EOL issues, attitudes toward death, and psychological distress). The number of events about EOL issues attended was positively correlated with Preparation (r = .31, p < .01), and fear of death was negatively associated with Preference (r = −.30, p < .01). Older adults who had experience of bereavement showed higher scores for Planning (bereaved: M = 2.54, SD = 0.79; nonbereaved: M = 2.10, SD = 0.96; t (108) = 2.17, p < .05, d = .48) and Preparation (bereaved: M = 0.79, SD = 0.57, non bereaved: M = 0.52, SD = 0.57; t (116) = 2.15, p < .05, d = .48) than those without such experience. There were no other significant results.

Table 2.

Correlations Between End-of-Life Activities and Related Variables.

	Age	Vis	Num	Mental health	Fear of death	Bel	Int
Planning	.09	.00	−.00	−.15	−.09	−.06	−.20
Preference	.06	−.16	.12	−.09	−.30^**	−.14	−.17
Preparation	.14	−.10	.31^**	−.08	−.15	−.03	−.17

Note. Vis = visits to family plots; Num = number of events attended about EOL issues; Bel = belief in existence of afterlife; Int = intention to live out own life.

p < .01.

Discussion and Implications

This study explored EOL activities among community-dwelling Japanese older adults and also examined the relationships between these activities and related variables. The data revealed that participants in this study were more involved in EOL activities compared with a previous report of the general public (Ministry of Economy, Trade and Industry, 2012). We recruited community-dwelling older adults who attended Shūkatsu seminars, and the sampling method might have influenced the result of this study. In fact, Shimada et al. (2015) reported that almost half of the older adult outpatients who should have strong interests to EOL issues had talked to their family and friends about their preferences for EOL care, which was similar to the results of this study.

The cluster analysis revealed three clusters of EOL activities: Planning, Preference, and Preparation. The Planning cluster represented participants’ decision-making about factors such as about their cemetery plot and estate. The Preference cluster reflected participants’ preferences for aspects such as medical treatments in EOL care and funeral arrangements. Finally, the Preparation cluster covered activities such as writing a will and making contact with companies regarding funeral arrangements. While previous studies often focused on medical care in EOL in the context of ADs and ACP (Silveria et al., 2010; Singer et al., 1996), this study revealed an important role that nonmedical practice play in EOL activities among older Japanese. That is, it is imperative that future research examines nonmedical variables in various sociocultural contexts potentially associated with EOL planning (Kelly et al., 2013; Moss & Williams, 2014).

The number of EOL-related event attendance was found to be associated with EOL activities (e.g., writing a will and contacting funeral companies), suggesting a simple attendance may motivate the participants to engage in EOL activities. In addition, older adults who reported higher fear of death tended to report difficulty communicating with family members about funeral arrangements and EOL care. These results were consistent with findings of previous reports about ADs, ACP, and EOL medical care (Brown et al., 2014; Dexter et al., 1998; Kimura & Ando, 2015).

The result shows that older adults who had experience of bereavement (e.g., of a spouse or child) more engaged in EOL activities than those without such experience; this finding is also consistent with a previous report (Schrader et al., 2010). This result may be understood in the context of the current situation surrounding family plots in Japan. More precisely, the idea that the eldest son and his wife should take care of the family plots was previously prevalent in Japanese society, but this has changed. Japanese older adults, especially women, tend to choose other types of cemetery plots (e.g., single plots and companion plots) and may experience worry/difficulty because of discrepancies between traditional and current ways of thinking of funerals and burial (Kotani, 2017). Considering current trends, losing a spouse or a child who conventionally took care of the family plot may affect EOL planning and preparation among Japanese older adults.

To our knowledge, this is the first study to show associations between EOL activities and social context among community-dwelling older adults in Japan. However, there were several limitations in this study. First, we evaluated EOL activities using a dichotomous scale, but the validity and reliability of the scale were unclear. In addition, we focused on actual behaviors rather than cognitive and emotional aspects of EOL activities. Future studies should examine attitudes toward EOL including these aspects. Second, further study is necessary to consider the impact of interpersonal relationships on EOL issues identified in previous studies, such as self-perceived burden (which is strongly related to decision-making for EOL care) and ADs (e.g., McPherson, Wilson, & Murray, 2007).

Footnotes

Acknowledgments

The authors wish to thank Ryosuke Hamuro for his support throughout the project period.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical Approval

This study was approved by the Chukyo University Institutional Review Board.

Funding

Acknowledgements

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by JSPS KAKENHI Grant Number JP16K13477.

Author Biographies

Miho Tanaka, PhD, is an assistant professor in the School of Letters at Mukogawa Womens' University. Her research focuses on attitudes toward life and death and end-of-life care.

Masami Takahashi, PhD, is a professor in the Department of Psychology at College of Arts and Sciences at Northeastern Illinois University. His research focus has been on the psychological strengths of older adults including the concepts of wisdom and spirituality.

Daisuke Kawashima, PhD, is an associate professor in the School of Psychology at Chukyo University. His research focuses on suicide prevention, bereavement, and end-of-life care.

References

Brown

A. J.

Shen

M. J.

Ramondetta

L. M.

Bodurka

D. C.

Giuntoli

R. L.

Diaz-Montes

(2014). Does death anxiety affect end-of-life care discussions? International Journal of Gynecological Cancer, 24(8), 1521–1526.

Cabinet Office, Government of Japan (2017, March 17). White paper on Aged Society. Retrieved from http://www8.cao.go.jp/kourei/whitepaper/w-2016/html/zenbun/index.html

Detering

K. M.

Hancock

A. D.

Reade

Silvester

(2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. British Medical Journal, 340, c1345.

De Vleminck

Houttekier

Pardon

Deschepper

Van Audenhove

Vander Stichele

Deliens

(2013). Barriers and facilitators for general practitioners to engage in advance care planning: A systematic review. Scandinavian Journal of Primary Health Care, 31(4), 215–226.

Dexter

P. R.

Wolinsky

F. D.

Gramelspacher

G. P.

Zhou

Eckert

G. J.

Waisburd

Tierney

W. M.

(1998). Effectiveness of computer-generated reminders for increasing discussions about advance directive and completion of advance directive forms: A randomized controlled trial. Annals of Internal Medicine, 128 (2), 102–110.

Fukui

Yoshiuchi

(2012). Associations with the Japanese population’s preferences for the place of end-of-life care and their need for receiving health care services. Journal of Palliative Medicine, 15(10), 1106–1112.

Furukawa

T. A.

Kawakami

Saitoh

Ono

Nakane

Nakamura

Kikkawa

(2008). The performance of the Japanese version of the K6 and K10 in the world mental health survey Japan. International Journal of Methods in Psychiatric Research, 17(3), 152–158.

Kawashima

(2016). Rounenki niokeru shi [Death in older adulthood]. In D. Kawashima & M. Kondo (Eds.), Hajimete no Shisei Shinrigaku [Introduction to psychology of death and life] (pp. 175–188). Tokyo, Japan: Shin-yo-sha.

Kelly

C. M.

Masters

J. L.

DeViney

(2013). End-of-life planning activities: An integrated process. Death Studies, 37(6), 529–551.

10.

Kessler

R. C.

Barker

P. R.

Colpe

L. J.

Epstein

J. F.

Gfroerer

J. C.

Hiripi

Zaslavsky

A. M.

(2003). Screening for serious mental illness in the general population. Archives of General Psychiatry, 60(2), 184–189.

11.

Kimura

Ando

(2015). The meaning of preparation for death among the Japanese elderly: Will-making for one’s own aging and end. Ouyou Ronengaku [Applied Gerontology], 9(1), 43–54.

12.

Kondo

Shimazu

Morizane

Hosoi

Okusaka

Ueno

(2014). A retrospective analysis of factors associated with selection of end-of-life care and actual place of death for patients with cancer. BMJ Open, 4(5), e004352.

13.

Kotani

(2017). “Hitori-shi Jidai” no Osoushiki to Ohaka [Funeral and burial in the period of “solitary death”]. Tokyo, Japan: Iwanami-Shoten.

14.

McPherson

C. J.

Wilson

K. G.

Murray

M. A.

(2007). Feeling like a burden to others: A systematic review focusing on the end of life. Palliative Medicine, 21(2), 115–128.

15.

Ministry of Economy, Trade and Industry (2012). Anshinkan to Shinrai noaru Raifu-Endhingu Suteji no Shousyutu nimuketa Fukyuu-Keihatsu nikansuru Kenkyuukai Houkokusyo [Generating the peaceful and trustful life-ending stage: A report for promoting public awareness]. Tokyo, Japan: Author.

16.

Moss

K. O.

Williams

I. C.

(2014). End-of-life preferences in Afro-Caribbean older adults: A systematic literature review. OMEGA—Journal of Death and Dying, 69(3), 271–282.

17.

Sallnow

Richardson

Murray

S. A.

Kellehear

(2016). The impact of a new public health approach to end-of-life care: A systematic review. Palliative Medicine, 30(3), 200–211.

18.

Schrader

S. L.

Nelson

M. L.

Eidsness

L. M.

(2010). Dying to know: A community survey about dying and end-of-life care. OMEGA—Journal of Death and Dying, 60(1), 33–50.

19.

Shimada

Nakazato

Arai

Aita

Shimizu

Tsuruwaka

Takahashi

(2015). Communication with important others regarding their preference for end-of-life care. Japanese Journal of Geriatrics, 52(1), 79–85.

20.

Silveria

M. J.

Kim

S. Y. H.

Langa

K. M.

(2010). Advance directives and outcomes of surrogate decision making before death. The New England Journal of Medicine, 362, 1211–1218.

21.

Singer

P. A.

Robertson

Roy

D. J.

(1996). Bioethics for clinicians: 6. Advance care planning. Canadian Medical Association Journal, 155(12), 1689–1692.

22.

Sumita

(2015). The present state of advance care planning in Japan: Literature review and content analysis in advance care planning. Seimeirinri [Bioethics], 25(1), 57–68.

23.

Tange

Nishita

Tomida

Ando

Shimokata

(2013). Construction of a scale of attitude toward death in the middle-aged and elderly and its validity and reliability. Japanese Journal of Geriatrics, 50(1), 88–95.

24.

Teno

J. M.

Gruneir

Schwartz

Nanda

Welte

(2007). Association between advance directives and quality of end-of-care: A national study. Journal of the American Geriatrics Society, 55(2), 189–194.