pi :: Psychiatry Investigation

Lee, Kim, Lee, and Youn: Psychosocial Factors Associated With Thoughts Regarding Life-Sustaining Treatment for Oneself and Family Members

Original Article

Psychiatry Investigation 2024;21(6):646-654.

Published online: June 24, 2024

DOI: https://doi.org/10.30773/pi.2024.0032

Psychosocial Factors Associated With Thoughts Regarding Life-Sustaining Treatment for Oneself and Family Members

Department of Psychiatry, Soonchunhyang University Bucheon Hospital, Soonchunhyang University College of Medicine, Bucheon, Republic of Korea

Correspondence: HyunChul Youn, MD, PhD Department of Psychiatry, Soonchunhyang University Bucheon Hospital, Soonchunhyang University College of Medicine, 170 Jomaru-ro, Bucheon 14584, Republic of Korea Tel: +82-32-621-5063, Fax: +82-32-621-5018, E-mail: dryounh@schmc.ac.kr

Received January 30, 2024 Revised March 12, 2024 Accepted April 10, 2024

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Objective

This study aims to investigate the thoughts of the general population regarding life-sustaining treatment for both oneself and family members and to assess the factors associated with those thoughts.

Methods

A total of 1,500 individuals participated in this study by completing a questionnaire consisting of self-reporting items with some instructions, basic demographic information, thoughts on life-sustaining treatment, and psychosocial scales. The disease status was calculated using the Charlson Comorbidity Index. The psychosocial scales included the Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), Pittsburgh Sleep Quality Index, and Multidimensional Scale of Perceived Social Support.

Results

The majority of participants did not want to receive life-sustaining treatment for both themselves and their families. However, more people wanted life-sustaining treatment for their family members (35.9%) than for themselves (21.6%). Among the basic demographic characteristics, there were significant differences in age, sex, marital status, living arrangements, occupational status, religion, and disease status. Regarding the psychosocial scales, there were significant differences in the PHQ-9 and GAD-7 scores between the group that preferred life-sustaining treatment for family members and the group that did not.

Conclusion

The findings suggest that life-sustaining treatment decisions for oneself and for one’s family members can be different. We recommend a more clear expression of one’s preferences regarding the last moments of one’s life, including advance directives.

Keywords: Terminal care, Advance directives, Clinical decision-making, Depression, Anxiety

INTRODUCTION

Discussion exists about making one’s own decision about the last moment of life, and the importance of maintaining one’s dignity as a human being is now widely accepted [1,2]. Currently, laws related to life-sustaining treatment have been enacted and implemented in countries around the world. The Patient Self-Determination Act was passed in the United States after the 1990 legal decision on patients in an irreversible vegetative state [3,4]. The British Medical Association published “Advance Statements about Medical Treatment: A Code of Practice” in 1995, and guidelines related to life-sustaining treatment were also prepared in Taiwan and Japan in 2000 and 2007, respectively [5].

In South Korea, there have been continuous discussions on life-sustaining treatment, including the application of family opinions, since the 1998 case in which a patient on a ventilator after brain surgery was discharged by his family and medical staff, and the patient died–the so-called Boramae Hospital Case [6]. The Act on the Determination of Life-Life Care for Patients in the Hospice and Relaxation Medicine and the Deathly Hallows Process was passed in 2016, and from February 2018, it was possible to write an advance directive on life-sustaining treatment in South Korea [6]. From the start of registration until May 2023, about 1.8 million people have submitted their advance directives [7]. However, it was found that 61% of the approximately 280,000 people who died after discontinuing life-sustaining treatment between 2018 and May 2023 made this decision through the opinions of their families, not their own will [7]. This means that for many Koreans, the end of their lives is being decided by their families. Even for those who have submitted their advance directives, it may be necessary to consider family influence in making life-sustaining treatment decisions, considering that there may be family discussions in important medical decisions, especially in Korean culture [8].

Several previous studies have shown that the majority of people prefer to discontinue life-sustaining treatment rather than maintain it [9-12]. Factors such as personal values, religion, medical opinion, sex, and disease comorbidity may influence preferences for life-sustaining treatment, and such preferences may change depending on circumstances or health conditions [13-17]. However, there have been few studies on the patient’s family’s preference for life-sustaining treatment or the factors that affect it. Considering the influence of family when making an end-of-life decision, it is necessary to investigate opinions not only about one’s own life-sustaining treatment, but also about the time one’s family members have irreversible terminal disease.

This study focused on the thoughts of the general population regarding life-sustaining treatment for both themselves and family members. Additionally, factors influencing such decisions were investigated, particularly psychosocial factors such as depression, anxiety, and social support. Individuals may feel negative emotions when they or a family member has a terminal condition or needs to make decisions about life-sustaining treatment [18-20]. That is, one can experience negative emotions at the moment one makes such decisions. If negative emotions influence such decisions, they may need to be taken into account. For example, an individual who feels negative emotions before deciding on life-sustaining treatment might be recommended to be re-evaluated after several months or to receive psychiatric intervention. This study may help enable individuals to make the decisions they really want about the last moments of their lives.

METHODS

Participants and procedures

A total of 1,500 individuals living in South Korea participated in this study. Participants with a similar demographic structure to South Korea were enrolled through an online research specialized company, taking into account age, sex, and regional population (Macromill Embrain, Seoul, Korea; www.embrain.com). Instructions, together with a questionnaire, were sent via a Uniform Resource Locator (URL) attached to an e-mail. Before starting the questionnaire, participants are required to check the consent form received through the URL. All questions in the survey are self-reported. The survey is anonymous and takes about 20 to 30 minutes. Each participant received compensation of 3,000 Korean won (approximately 2.3 USD). This study was approved by the Institutional Review Board (IRB) of Soonchunhyang University Bucheon Hospital, South Korea (IRB No. 2020-03-044).

Questionnaire

Demographic characteristics and thoughts on life-sustaining treatment

The survey included questions regarding basic demographic information, such as sex, age, education, marital status, living arrangements, religion, occupation, height, weight, medical history, and average monthly income. The disease status of the participants was calculated using the Charlson Comorbidity Index (CCI) [21]. In addition, thoughts on life-sustaining treatment including ‘Do you want to receive life-sustaining treatment?’ and ‘If someone in your family suddenly fell into a serious condition with no possibility of recovery (without deciding on life-sustaining treatment in advance), and you had to give your opinion about life-sustaining treatment to his or her doctor, what would you say?’ were investigated. To avoid confusion, guidance is provided regarding terminology before these questions. For example, it was explained that ‘life-sustaining treatment refers to cardiopulmonary resuscitation, artificial respiration, and renal replacement therapy performed on a patient in the process of dying in a situation where there is no possibility of recovery.’

Psychosocial scales

The study adopted the Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Pittsburgh Sleep Quality Index (PSQI) scales to evaluate depression, anxiety, and sleep, respectively [22,23]. All of these scales were translated into Korean, and reliability and validity were also confirmed [24-26]. Higher scores on the PHQ-9 and GAD-7 indicate higher levels of depression and anxiety symptoms [22]. A PHQ-9 score of 0–4 is classified as no or minimal depressive symptoms, 5–9 as mild depressive symptoms, 10–14 as moderate depressive symptoms, 15–19 as moderately-severe depressive symptoms, and 20–27 as severe depressive symptoms [27]. Cut points of 5, 10, and 15 are interpreted as representing mild, moderate, and severe levels of anxiety on the GAD-7 [28]. The PSQI evaluates sleep in seven domains: subjective sleep quality, sleep latency, sleep duration, sleep efficiency, sleep disturbance, use of sleep medication, and daytime dysfunction [23]. Additionally, we used the Multidimensional Scale of Perceived Social Support (MSPSS) to check the degree of perceived social support [29]. A high score on this scale indicates a high level of perceived social support [29]. The Korean version of the MSPSS was used [30].

Statistical analysis

All statistical analyses were performed using SPSS 26.0 for Windows (IBM Corp., Armonk, NY, USA). Descriptive statistics were calculated for all variables (i.e., means and standard deviation for continuous variables and percentages for categorical variables). The differences in demographic characteristics, thoughts on life-sustaining treatment, and psychosocial scales according to the life-sustaining treatment decisions for oneself and family members were analyzed using independent t-tests and χ² tests.

RESULTS

The study classified participants into groups according to those who wanted to receive life-sustaining treatment for themselves (IRLS) and individuals who did not want to receive life-sustaining treatment for themselves (INLS) according to their response to the question ‘Do you want to receive life-sustaining treatment?’ In addition, participants were grouped according to individuals who wanted to receive life-sustaining treatment for family members (IRLF) and individuals who did not want to receive life-sustaining treatment for family members (INLF) according to their response to the question ‘If someone in your family suddenly fell into a serious condition with no possibility of recovery (without deciding on life-sustaining treatment in advance), and you had to give your opinion about life-sustaining treatment to his or her doctor, what would you say?’ The results showed that 35.9% of participants were in group IRLF, while 21.6% were in group IRLS.

Table 1 shows the demographic characteristics of each group. The average age of the participants was 45.01 years (standard deviation=13.33) and 761 (50.7%) participants were male. The IRLS and INLS groups showed significant differences in age, sex, marital status, occupational status, and CCI score, and the IRLF and INLF groups showed significant differences in age, marital status, occupational status, religion, and CCI score. The analysis results regarding the reasons for and the timing of the decision on life-sustaining treatment are provided in Table 2. Among the reason for the decision, the percentages of ‘mental distress’ and ‘physical distress’ were significantly higher in the INLS (23.1%, 22.9%) and INLF (24.1%, 23.5%) groups than in the IRLS (5.6%, 9.3%) and IRLF (12.1%, 14.3%) groups, respectively. The INLS (24.5%) group also exhibited a higher percentage than the IRLS (9.9%) group in ‘treatment cost.’ In response to the best timing, the proportion of participants who responded ‘terminal condition that is no longer curable’ was significantly higher in the INLS (57.7%) group than in the IRLS (43.5%) group. The analysis results for the psychosocial scale are given in Table 3. The INLF (4.51±4.91, 3.40±3.91) group was significantly lower than the IRLF (5.24±5.13, 4.24±4.34) group on both PHQ-9 and GAD-7 scores, and the proportion of participants with ‘no or minimal’ symptoms was significantly higher in the INLF (65.6%, 70.8%) group than the IRLF (58.2%, 61.6%) group on both scales.

DISCUSSION

In this study, the majority of participants did not want to receive life-sustaining treatment for both themselves and their families. However, the IRLF group had a relatively higher percentage than the IRLS. The most important reason for the decision was the ‘chance of survival’, and the most preferred reason for the decision timing was a ‘terminal condition that is no longer curable’. Among the demographic and basic characteristics, there were significant differences between groups according to age, sex, marital status, living arrangements, occupational status, religion, and disease status. In addition, in terms of the psychosocial scales, the IRLF group exhibited higher levels of depression and anxiety than the INLF group.

The study result, that aggressive treatment was not preferred at the end of life, was consistent with the results of previous studies [9-12]. In this study, the tendency was the same, even if it was assumed that the decision was made as a family member. However, the INLF group had a relatively lower percentage than the INLS group. This may be due to some hesitancy in determining the death of a family member, even if the discontinuation of life-sustaining treatment is in his or her favor. Meeker and Jezewski [31] reported that patients’ end-of-life choices and family members’ predictions of those choices demonstrated low to moderate predictive accuracy. Additionally, this study reported that individuals are reluctant to make sole decisions about the end-of-life for their family members [31]. Our study findings may also be in line with this report.

All groups responded that the most important reason for the decision was the ‘chance of survival’, but the percentages of ‘mental distress’ and ‘physical distress’ were higher in the INLS and INLF groups than in the IRLS and IRLF groups, respectively. Most people want a painless and comfortable death, and there are several studies and suggestions about this [32-34]. The results of this study may also reflect these findings. That is, our study showed that avoiding distress in a terminal state is one of the reasons for not wanting to receive life-sustaining treatment. In addition, the INLS group had a higher consideration for treatment cost than the IRLS group. Blank et al. [35] reported a tendency to reject active treatment options when a financial impact was added. Fried et al. [36] also reported the decreased willingness of individuals reporting a lower financial status to undergo high-burden therapy to avoid death. Our results were consistent with these previous studies. South Korea operates a national health insurance system that provides access to all services at a low deductible rate [37]. However, due to the Korean system and culture, additional nursing expenses are incurred for terminally ill patients, and many people feel burdened by them [38]. It is speculated that this may have been reflected in the results of this study.

In the question about the best timing, a ‘terminal condition that is no longer curable’ was the highest timing in all four groups. Especially, in the INLS group, the percentage of individuals choosing this response was relatively higher than in the IRLS group. Although few studies exist on this matter, it is thought that the INLS group preferred to make the decision later because the discontinuation of life-sustaining treatment is a decision about death. However, overall, a significant number of individuals wanted to decide on life-sustaining treatment before the occurrence of a terminal condition. This may reflect a desire to make important decisions, such as life-sustaining treatment decisions, in a more mentally and physically healthy state. Previous studies have also reported cognitive decline in a terminally ill state [39-41]. Therefore, considering the results of our study and the fact that the advance directives can be modified at any time, it may be recommended to make decisions about life-sustaining treatment at a relatively early stage.

Among the demographic and basic characteristics, age and disease comorbidity were higher in the INLS and INLF groups than in the IRLS and IRLF groups, respectively. Park et al. [15] reported that among individuals in the end-of-life process, those under the age of 30 and those with few comorbidities were relatively less likely to complete advance directives. They explained that this may be because there is a high possibility of not having advance directives in cases of sudden death in the younger age group, such as suicide or accidents, rather than illness [15]. Hamel et al. [42] also showed that there were more discontinuations of life-sustaining treatment in the older age group. Our results were consistent with these previous studies. It is natural for individuals to be concerned about death as they become more ill and older. Likewise, the elderly and individuals with several comorbidities may be more likely to be interested in issues regarding end-of-life dignity, including life-sustaining treatment.

Sex was also a factor that showed a significant difference between the IRLS and INLS groups, and females exhibited a lower preference for life-sustaining treatment. Although controversial, several studies have reported that females have a lower preference for life-sustaining treatment than males [43,44]. Bookwala et al. [44] explained that this is because females have a higher dislike of invasive treatment, impaired conditions, and the pain associated with life-sustaining treatment. There may also be gender differences in terms of the caregiver burden and distress. Since females often play a caring role at home and their life span is longer than males [45], they may be more concerned about caring issues. It is speculated that this may have appeared as a non-preference for life-sustaining treatment in this study. The results of this study, in which the preference for life-sustaining treatment was low in the ‘married’, ‘lives with family’, and ‘stay-at-home spouse,’ categories, may also be considered from a similar perspective. That is, participants in the above-mentioned situation may be more concerned about caring issues for themselves and their families, and this may have appeared as a relative non-preference for life-sustaining treatment. Previous studies have also reported that individuals tend to fear becoming a nuisance to their families at the end of their lives [46-48].

In this study, the proportion of participants with religious beliefs was high in the group who did not want to receive life-sustaining treatment for their family members. Although religious beliefs are important in the last moments of one’s life, there is no consensus on the relationship between religion and life-sustaining treatment [49,50]. One study suggested that nurses with a high-trust religious profile want to withdraw life-sustaining treatment less, while another report showed that religious beliefs do not increase the intensity of treatment or prolong the time until death [50,51]. We interpret the results of our study in terms of difficult decision-making. That is, we speculate that religious beliefs may have played a role in reducing the abovementioned ‘some hesitancy’ in determining the death of a family member. According to the National Institute of the Korean Language, the definition of religion includes the phrase ‘solving the agony of human life through faith’ [52].

Among the psychosocial factors, depression and anxiety were significantly lower in the INLF group than in the IRLF group. Even when the levels of depression and anxiety symptoms were classified using cutoff points, the proportion of participants with ‘no or minimal’ symptoms was significantly higher in the INLF group than in the IRLF group. In several previous studies, depression and anxiety have been reported to be associated with a higher level of life-sustaining treatment withdrawal [35,53-55]. Unlike these previous studies, in our study, depression and anxiety were found to be significant only in the decision for family members, and the results were opposite. Bishop and Gagne [56] reported that both anxiety and depression are associated with difficulties in decision making. Paulus and Yu [57] also provided evidence for the disruption of decision-making in anxiety and depression. In particular, anxiety has been known to interfere with decision-making in negative or uncertain situations [58-60]. Making decisions about the death of a family member is difficult. In this respect, we speculate that decision-making issues associated with depression and anxiety may explain the study findings.

This study identified a preference for life-sustaining treatment for individuals themselves and their family members and related factors. According to the study results, more people wanted life-sustaining treatment for their family members than for themselves. As mentioned in the introduction, many people in South Korea are influenced by their families in the last moments of their lives. Therefore, some people may be receiving life-sustaining treatment against their own decisions or values. Furthermore, the results suggest that the religion, depression, and anxiety of a family member, not the person at the end of life, may influence life-sustaining treatment decisions. The purpose of advance directives and the laws that relate to them is for people to make their own decisions with dignity about the last moments of their lives. Our results suggest that in order to maintain this purpose, a more active expression of intention regarding the last moments of one’s life is necessary. Furthermore, the early preparation of an advance directive and active expression of one’s intention for life-sustaining treatment to family members may be recommended.

There are some limitations to this study. First, this study was conducted as an online survey via URL. Although the study was conducted by recruiting participants with a demographic structure similar to that of South Korea in terms of age, sex, and regional population, individuals who were unfamiliar with online use may have been excluded from the study. Second, it only included members of the general population. Therefore, when interpreting the results, it may be necessary to take into account that individuals may think differently when they or their family members actually suffer from a terminal illness. Additionally, medical staff may influence the life-sustaining treatment decisions of patients and their families [61]. Therefore, future research that includes more diverse groups, such as medical staff, patients, and patients’ families, could advance the findings of this study. Third, the survey was conducted without classifying each life-sustaining treatment. Several medical practices are utilized in life-sustaining treatment, including cardiopulmonary resuscitation, artificial respiration, and renal replacement therapy. Since each medical practice has different degrees of pain or invasiveness, preferences may vary depending on the specific method. Fourth, this study used a quantitative research method using self-reported survey questions. Since individual factors including culture, values, religion, and spirituality may play a role in decisions about the last moments of life, the results of this study could be supplemented if qualitative research methods are included. Finally, this study adopted a cross-sectional research approach. However, preferences for life-sustaining treatment may change depending on the situation [54,55]. A future longitudinal study may help clarify the influence of variables such as depression, anxiety, and health conditions, which can vary depending on the situation.

In conclusion, this study has significant implications for the understanding of thoughts regarding life-sustaining treatment for both oneself and family members. The results of this research support the need for the clear expression of one’s preferences regarding the last moments of one’s life, including advance directives. Furthermore, the results can serve as a reference for future discussions related to terminal conditions, including issues associated with assisted suicide.

Notes

Availability of Data and Material

The datasets generated or analyzed during the study are not publicly available due to privacy and ethical restrictions, but are available from the corresponding author on reasonable request.

Conflicts of Interest

The authors have no potential conflicts of interest to disclose.

Author Contributions

Conceptualization: HyunChul Youn. Data curation: Jeewon Lee. Formal analysis: Shin-Gyeom Kim. Funding acquisition: HyunChul Youn. Investigation: all authors. Methodology: Shin-Gyeom Kim, HyunChul Youn. Project administration: Soyoung Irene Lee, HyunChul Youn. Supervision: Soyoung Irene Lee, HyunChul Youn. Validation: Soyoung Irene Lee, Jeewon Lee. Visualization: Jeewon Lee. Writing—original draft: HyunChul Youn, Jeewon Lee. Writing—review & editing: all authors.

Funding Statement

This work was supported by the National Research Foundation of Korea (NRF) grant funded by the Korea government (MSIT) (No. NRF-2021R1G1A1093775). This work was also supported by the Soonchunhyang University Research Fund.

ACKNOWLEDGEMENTS

None

Table 1.

Demographic and basic characteristics of the IRLS, INLS, IRLF, and INLF groups

Characteristic	Total (N=1,500)	IRLS (N=324)	INLS (N=1,176)	p^†	IRLF (N=505)	INLF (N=903)	p^‡
Age (yr)	45.01±13.33	39.46±13.53	46.54±12.86	<0.001^**	39.36±12.31	48.62±12.73	<0.001^**
Sex				<0.001^**			0.516
Male	761 (50.7)	193 (59.6)	568 (48.3)		263 (52.1)	454 (50.3)
Female	739 (49.3)	131 (40.4)	608 (51.7)		242 (47.9)	449 (49.7)
Education level				0.330			0.820
Graduated middle school or less	12 (0.8)	1 (0.3)	11 (0.9)		3 (0.6)	9 (1.0)
Graduated high school	365 (24.3)	89 (27.5)	276 (23.5)		125 (24.8)	217 (24.0)
Graduated college	976 (65.1)	205 (63.3)	771 (65.6)		324 (64.2)	589 (65.2)
Graduated school or more	147 (9.8)	29 (9.0)	118 (10.0)		53 (10.5)	88 (9.7)
Marital status				<0.001^**			<0.001^**
Married (living with spouse)	901 (60.1)	158 (48.8)	743 (63.2)		257 (50.9)	601 (66.6)
Cohabitation without marriage	18 (1.2)	8 (2.5)	10 (0.9)		10 (2.0)	6 (0.7)
Unmarried	490 (32.7)	149 (46.0)	341 (29.0)		225 (44.6)	222 (24.6)
Separated	4 (0.3)	0 (0)	4 (0.3)		0 (0)	4 (0.4)
Divorced	65 (4.3)	14 (1.9)	51 (5.0)		11 (2.2)	51 (5.6)
Separated by death	22 (1.5)	3 (0.9)	19 (1.6)		2 (0.4)	19 (2.1)
Living arrangements				0.078			0.009^**
Lives alone	228 (15.2)	51 (15.7)	177 (15.1)		80 (15.8)	132 (14.6)
Lives with family	1,250 (83.3)	264 (81.5)	986 (83.8)		412 (81.6)	765 (84.7)
Other	22 (1.5)	9 (2.8)	13 (1.1)		13 (2.6)	6 (0.7)
Occupational status				<0.001^**			<0.001^**
Unemployed	141 (9.4)	32 (9.9)	109 (9.3)		47 (9.3)	83 (9.2)
Stay-at-home spouse	236 (15.7)	30 (9.3)	206 (17.5)		57 (11.3)	164 (18.2)
Student	76 (5.1)	32 (9.9)	44 (3.7)		43 (8.5)	28 (3.1)
Self-employed/employer	107 (7.1)	21 (6.5)	86 (7.3)		26 (5.1)	75 (8.3)
Wage worker	839 (55.9)	192 (59.3)	647 (55.0)		308 (61.0)	482 (53.4)
Other	101 (6.7)	17 (5.2)	84 (7.1)		24 (4.8)	71 (7.9)
Religion				0.672			0.011^*
Religious	659 (43.9)	139 (42.9)	520 (44.2)		201 (39.8)	423 (46.8)
Not religious	841 (56.1)	185 (57.1)	656 (55.8)		304 (60.2)	480 (53.2)
Monthly income (million won)				0.540			0.880
<100	34 (2.3)	8 (2.5)	26 (2.2)		12 (2.4)	20 (2.2)
100–299	297 (19.8)	61 (18.8)	236 (20.1)		94 (18.6)	187 (20.7)
300–499	468 (31.2)	92 (28.4)	376 (32.0)		153 (30.3)	278 (30.8)
500–699	381 (25.4)	93 (28.7)	288 (24.5)		134 (26.5)	226 (25.0)
≥700	320 (21.3)	70 (21.6)	250 (21.3)		112 (22.2)	192 (21.3)
BMI (kg/m²)	23.65±3.59	23.97±3.80	23.56±23.56	0.069	23.74±3.88	23.63±3.48	0.600
CCI	0.85±1.13	0.63±1.03	0.91±1.15	<0.001^**	0.47±0.80	1.10±1.23	<0.001^**

Values are presented as mean±standard deviation or N (%).

^* p<0.05;

^** p<0.01;

^† comparison of IRLS and INLS;

^‡ comparison of IRLF and INLF.

IRLS, individuals who wanted to receive lifesustaining treatment for themselves; INLS, individuals who did not want to receive life-sustaining treatment for themselves; IRLF, individuals who wanted to receive life-sustaining treatment for family members; INLF, individuals who did not want to receive life-sustaining treatment for family members; BMI, body mass index; CCI, Charlson Comorbidity Index

Table 2.

Reasons for and timing of the decision on life-sustaining treatment in the IRLS, INLS, IRLF, and INLF groups

	Total (N=1,500)	IRLS (N=324)	INLS (N=1,176)	p^†	IRLF (N=505)	INLF (N=903)	p^‡
The most important reason for the decision				<0.001^**			<0.001^**
Chance of survival	540 (36.0)	224 (69.1)	316 (26.9)		246 (48.7)	264 (29.2)
Treatment cost	320 (21.3)	32 (9.9)	288 (24.5)		108 (21.4)	186 (20.6)
Physical distress	299 (19.9)	30 (9.3)	269 (22.9)		72 (14.3)	212 (23.5)
Mental distress	290 (19.3)	18 (5.6)	272 (23.1)		61 (12.1)	218 (24.1)
Others (religious belief, etc.)	51 (10.1)	20 (6.2)	31 (2.6)		18 (3.6)	23 (2.6)
The best timing to make a decision (assuming a future cancer state)				<0.001^**			0.692
Terminal condition that is no longer curable	819 (54.6)	141 (43.5)	678 (57.7)		268 (53.1)	503 (55.7)
Immediately after cancer diagnosis, regardless of stage	390 (26.0)	114 (35.2)	276 (23.5)		140 (27.7)	227 (25.1)
Immediately after metastatic cancer diagnosis	124 (8.3)	23 (7.1)	101 (8.6)		37 (7.3)	76 (8.4)
When to start chemotherapy	108 (7.2)	27 (8.3)	81 (6.9)		37 (7.3)	64 (7.1)
Others	59 (3.9)	19 (5.9)	40 (3.4)		23 (4.6)	33 (3.7)

Values are presented as N (%).

^** p<0.01;

^† comparison of IRLS and INLS;

^‡ comparison of IRLF and INLF.

Table 3.

Psychosocial variables of the IRLS, INLS, IRLF, and INLF groups

	Total (N=1,500)	IRLS (N=324)	INLS (N=1,176)	p^†	IRLF (N=505)	INLF (N=903)	p^‡
PHQ-9 total	4.82±5.03	4.78±4.83	4.83±5.08	0.867	5.24±5.13	4.51±4.91	0.009^**
PHQ				0.463			0.021^*
No or minimal	935 (62.3)	198 (61.1)	737 (62.7)		294 (58.2)	592 (65.6)
Mild	321 (21.4)	72 (22.2)	249 (21.2)		115 (22.8)	178 (19.7)
Moderate	150 (10.0)	35 (10.8)	115 (9.8)		57 (11.3)	85 (9.4)
Moderately-severe	69 (4.6)	17 (5.2)	52 (4.4)		33 (6.5)	33 (3.7)
Severe	25 (1.7)	2 (0.6)	23 (2.0)		6 (1.2)	15 (1.7)
GAD-7 total	3.75±4.14	4.07±4.25	3.67±4.11	0.123	4.24±4.34	3.40±3.91	<0.001^**
GAD				0.332			0.001^**
No or minimal	1,008 (67.2)	204 (63.0)	804 (68.4)		331 (61.6)	639 (70.8)
Mild	344 (22.9)	83 (25.6)	261 (22.2)		129 (25.5)	194 (21.5)
Moderate	104 (6.9)	26 (8.0)	78 (6.6)		45 (8.9)	52 (5.8)
Severe	44 (2.9)	11 (3.4)	33 (2.8)		20 (4.0)	18 (2.0)
PSQI total	6.38±3.16	6.35±3.25	6.39±3.13	0.857	6.42±3.23	6.32±3.13	0.565
MSPSS total	5.02±1.18	5.13±1.09	4.99±1.20	0.061	5.04±1.17	5.01±1.19	0.661

Values are presented as mean±standard deviation or N (%).

^* p<0.05;

^** p<0.01;

^† comparison of IRLS and INLS;

^‡ comparison of IRLF and INLF.

IRLS, individuals who wanted to receive life-sustaining treatment for themselves; INLS, individuals who did not want to receive life-sustaining treatment for themselves; IRLF, individuals who wanted to receive life-sustaining treatment for family members; INLF, individuals who did not want to receive life-sustaining treatment for family members; PHQ-9, Patient Health Questionnaire-9; GAD-7, Generalized Anxiety Disorder-7; PSQI, Pittsburgh Sleep Quality Index; MSPSS, Multidimensional Scale of Perceived Social Support

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