Life worth living: cross-sectional study on the prevalence and determinants of the wish to die in elderly patients hospitalized in an internal medicine ward

This cross-sectional study was conducted between 1 May, 2018, and 30 April, 2019, in the internal medicine ward of Lausanne University Hospital, Switzerland. The internal medicine ward has a 166-bed capacity and admits 5550 patients per year, two-thirds of who are ≥65 years old.

Sample size was based on data reported by Rurup et al. [2] and calculations were performed using PS Power and Sample Size version 3.0 [14]. Considering a WTD prevalence of 15% [2], an alpha value of 5%, and a power of 80%, a sample size of 250 was considered adequate. Considering a 50% exclusion rate, a 40% refusal rate, and 10% of the records to have missing data, it was necessary to screen 900 patients.

Before being considered eligible for the study, patients aged ≥65 years were screened for language skills and cognitive impairment. For pragmatic reasons, screening was conducted on the second day of hospitalization; the first day was too busy owing to all the clinical procedures performed during the admission process. As a large number of patients were admitted to the ward, it was not possible to screen them all. The study nurse visited a different sector each day according to a previously established schedule. All patients within the selected sector were screened. Patients were excluded from this screening if one of the following conditions was present: 1) previous participation in the study; 2) refusal of cognitive screening; and 3) cognitive screening not feasible (e.g. patient transferred to another unit or too ill to cooperate). Cognitive evaluation was performed using the 6-Item Cognitive Screener [15] and cognitive impairment was defined as a score < 3. Patients unable to speak French or who had cognitive impairment were considered ineligible to participate. Patients eligible for participation were invited to participate and given written information about the study. In accordance with the relevant Swiss legislation and ethics committee guidelines, eligible patients had a 24-h period to make their decision about participating; after this 24-h period, patients willing to participate signed a consent form and were included in the study.

Data were collected in face-to-face interviews with a research nurse trained in palliative care. Participants completed several standardised study questionnaires, which have been previously published elsewhere and are free to use for research purposes. These instruments are described below. The interviews lasted approximately 1 h and were conducted in a closed room, where the research nurse was alone with the participant. Special attention was paid to study participants: the nurse listened patiently and carefully to each participant.

As WTD instruments vary [3], we assessed WTD using two validated instruments to ensure that the construct was adequately measured in this large sample. We considered patients to show a WTD if responses on either or both instruments were positive.

The French version of the Schedule of Attitudes toward Hastened Death-senior (SAHD-senior) assesses the intensity of the WTD in elderly persons by evaluating attitudes to death, the wish to die/live, and the fear of physical/psychological suffering [3]. It is a modified version of the SAHD, which was originally validated for young terminal stage patients [16]. The SAHD-senior consists of 20 true–false statements; the total score ranges between 0 and 20. Scores ≥10 indicate a WTD.

The French version of the Categories of Attitudes toward Death Occurrence (CADO) measures quality of the WTD [3]. It is based on a qualitative study conducted by Schroepfer [17] and contains six categories (1: neither ready nor accepting; 2: not ready but accepting; 3: ready and accepting; 4: ready, accepting, and wishing death would come; 5: considering a hastened death but having no specific plan; and 6: considering a hastened death with a specific plan). Categories 4 to 6 express an active WTD.

QoL was assessed using two instruments. The first was the French version of the Quality of life – Control, Autonomy, Self-realization and Pleasure (CASP-12) [18], which was specifically developed for elderly respondents [19, 20]. The CASP-12 consists of 12 questions; responses are on a Likert scale of 0 to 3. The total score ranges between 0 and 36; higher scores indicate better QoL. The second instrument was a single question scored on a numerical scale between 0 (‘worst QoL’) and 10 (‘best QoL’). This scale has been shown to be reliable compared with multi-item scales [21, 22].

Social and family support were evaluated using the French version of the Medical Outcomes Study Social Support Survey (MOS-SSS) [23, 24]. This validated tool contains 19 questions that rate four dimensions (tangible support, affective support, positive social interaction, and emotional/informational support). Responses are on a Likert scale ranging from 1 to 5. The pooled responses are converted to a score ranging between 0 and 100; high scores indicate excellent social support.

Depressive symptoms were assessed using the 20-item Center for Epidemiologic Studies-Depression (CES-D) scale [25]. The CES-D has been validated for elderly respondents and translated into French [26]. It comprises 20 questions, and responses are on a 4-point Likert scale. The final score ranges between 0 and 60; scores ≥16 indicate clinical depression.

Spirituality was assessed using three questions (spiritual person, place in life, importance during illness) from the semi-structured clinical interview SPIR (Spiritual needs and preferences) [27]. Responses to each question are on a numerical scale ranging between 0 and 10; higher values indicate that the respondent places great importance on spirituality. The adapted SPIR score was the average of all responses.

The degree of stress generated by an interview querying the WTD attitude was assessed at the end of the interview on a numerical scale between 0 and 10. Higher scores indicate greater stress.

Do-not-resuscitate (DNR) orders are requested from all patients hospitalized at Lausanne University Hospital [13]. This information was collected at admission and recorded in the patient’s electronic record.

Information about age, gender, case severity (Charlson score) [28], number of medications (at admission), and functional status (Combined Braden activity and mobility subscale) [29] were obtained from medical records.

The ethics commission of Canton Vaud (CER-VD, www.​cer-vd.​ch) approved the study (reference 2017–01875, decision of 6 December, 2017). The study was performed in accordance with the Helsinki declaration and its former amendments, and in accordance with the relevant Swiss legislation.

As a safety issue, we systematically monitored if participants needed to begin psychiatric treatment related to the WTD during the first 2 weeks of hospitalization. If over 10% had experienced distress, the study would have been stopped. In the end, no participants presented a worsening of their psychological status following the interview.

Statistical analyses were performed using Stata version 15.1 (Stata Corp, College Station, Texas, USA). Missing data (which were infrequent) were not replaced. WTD prevalence was expressed as percentages and 95% confidence intervals (CI) calculated using the Poisson method. Agreement between the two WTD instruments (SAHD-senior and CADO) was assessed using Cohen’s kappa. Following previous studies [4], data for all patients expressing a WTD on at least one of the two instruments were pooled. Descriptive results for the WTD (yes/no) were expressed as averages ± standard deviations (SD) or as medians [interquartile ranges] for continuous variables, and as number of participants (percentages) for categorical variables.

Bivariate analyses were performed using Student’s t-test or the Mann–Whitney test for continuous variables and the chi-square test for categorical variables. Variables significantly associated with the WTD in a bivariate analysis were then tested using a multivariable analysis, as follows: first, each variable was tested after adjusting for age; second, all variables were included in a single model; third, the results of the second step were confirmed using stepwise backward and forward procedures, with a P-value for entry of .05 and a P-value for removal of .10. Multivariable analysis was performed using logistic regression and the results were expressed as odds ratios (OR) and 95% CIs. For multivariable analysis, the effects of a 5-year increase in age, a 5-point increase in the CASP-12 score, and a 2-point increase in the CES-D score were used. Statistical significance was assessed at P < .05.

Of the initial 997 patients eligible for screening, 539 (54%) were eligible for study inclusion and 232 (23%) consented to participate. The selection procedure is summarized in Fig. 1 and the characteristics of patients who did and did not consent are summarized in Additional Table 1. Patients who consented had a lower case severity than patients who did not consent, but no difference was found in other characteristics.

The distribution of SAHD-senior and of CADO scores is shown in Figs. 2a and b, respectively. The mean SAHD-senior score was 4.4 (SD 2.8, median 4.0) and the mean CADO score was 2.2 (SD 0.8, median 2.0).

The prevalence (95% CI) of the WTD was 5.6% (3.0–9.4; N = 13) according to SAHD-senior scores, 6.5% (3.7–10.4; N = 15) according to CADO scores, and 8.6% (5.3–13.0; N = 20) for both instruments. The agreement between the SAHD-senior and CADO scores was 0.544 (kappa), P < .001.

The characteristics of patients reporting and not reporting a WTD are summarized in Table 1. Compared with patients not wishing to die, patients expressing the WTD were significantly older, had a lower QoL, and more depressive symptoms (Table 1).

The results of the multivariable analysis are presented in Table 2. After adjusting for age, QoL (CASP-12 or single question) was negatively associated with the WTD, whereas depressive symptoms were positively associated. When all variables were included in the model, age was positively associated and QoL (single question) was negatively associated with the WTD. However, there was no association between the WTD and depressive symptoms or QoL as assessed using the CASP-12. These findings were confirmed by the stepwise logistic regression (not shown).

Restricting the analysis to the WTD as assessed either by the SAHD-senior or the CADO produced the same results, except that age was no longer significantly associated with the WTD assessed using the SAHD-senior (Additional Table 2).

Prevalence of the WTD was low: 5.6% according to SAHD-senior scores, 6.5% according to CADO scores, and 8.6% according to both scores. Previous studies of older adults in non-acute hospital settings showed a prevalence of 8.9–14.9% (using either or both instruments) in geriatric rehabilitation inpatients [3], and 4.0–22.1% (using either or both instruments) in nursing homes [4]. WTD prevalence in this study was also lower than for palliative care patients in a previous study using the SAHD, which found a prevalence of between 3.9 and 28% (4.6 to 17% using the same cutoff as in the present study) [30]. A likely explanation for the lower WTD prevalence in our study is that elderly patients hospitalized in acute care expect a favourable outcome and do not consider death an option.

Of the 20 patients expressing a WTD according to SAHD-senior or CADO scores, only 8 (40%) were identified by both instruments. Indeed, there was a moderate agreement between instruments, suggesting that they cannot be used interchangeably. This moderate agreement may explain the different prevalence rates and associations between WTD and other covariates, as the instruments do not capture the WTD in the same patients. This variability between WTD instruments has been noted previously [30]. The authors of a previous validation article found lower variation between the SAHD-senior and the CADO [3], perhaps because of the non-acute context, where patients present with more chronic symptomatology. Overall, our results suggest that WTD prevalence is low but highly relevant for clinical practice in an acute care setting, and that the two WTD instruments do not capture the WTD in the same individuals.

Older age was associated with a greater likelihood of the WTD, a finding also reported previously [4, 16]. The association between older age and the WTD was particularly strong in the present study, probably because the average age was almost 80 years. According to one systematic review, most other studies have assessed patients with an average age of 60 years [30]. The fact that elderly people are more accepting of death [31] may explain the strong link between the WTD and age in our study. Importantly, most elderly participants had a passive WTD. This suggests that elderly patients do not want active interventions to induce the end of life, but wish for death as a consequence of the disease course. This is consistent with findings from a study on end-of-life decisions among 38 chronically ill Canadian elderly inpatients: most patients rejected the idea of active interventions to induce death, but favoured the withholding and withdrawing of treatment [32].

Worse QoL was associated with a greater likelihood of the WTD. This association was in line with our initial hypothesis and, to our knowledge, no other studies have assessed the association between QoL and WTD. Interestingly, no association was found between other biopsychosocial–spiritual factors and the WTD, probably because QoL surpasses other biopsychosocial–spiritual variables as a reason for (not) wishing to die. Indeed, it has been shown that elderly persons with significant limitations or illnesses may rate their QoL as excellent, a condition termed the ‘disability paradox’. This is because QoL cannot be reduced to a general health status, and includes psychological resources or family support [33], as assessed in this study. Therefore, patients who consider their QoL as adequate may not express a WTD, and interventions that positively influence QoL may limit the WTD.

Presence of depressive symptoms was associated with a higher WTD in the bivariate analysis, but this association was no longer significant after multivariable adjustment. Our findings do not replicate those of previous studies [7], and could be explained by the fact that medically ill elderly patients score higher on the CES-D somatic items regardless of their psychological status [34]. Indeed, we found that 23% of patients without a WTD had clinical depression, compared with only 9% in a study of community-dwelling Dutch elderly people [2]. Overall, our results suggest that depression may not be as important as QoL in influencing the WTD among elderly hospitalized patients.

Prevalence of DNR orders was higher than reported in a previous study (71% vs. 53%) [13]. This may be because our sample was older, the likelihood of a DNR order increases with age, and the systematic collection of DNR orders has been progressively implemented in our hospital since 2013. No significant association was found between the WTD and DNR orders. A possible explanation is that participants are aware of the inevitability of their death, but still hope to recover from an acute illness and leave hospital alive. Indeed, a previous study showed that preference to die at home was associated with higher odds (8.29) of DNR orders [35]. As no information related to place of death was collected, we cannot confirm this finding. This absence of significant association is consistent with a previous study, among end-stage amyotrophic lateral sclerosis patients [8].

Participants did not experience stress during the interview. The safe environment, which included a period of patient listening, may have had a positive effect on participants. These findings are consistent with those from studies of end-of-life patients [36, 37], and suggest that WTD assessment, when adequately implemented, does not affect the mood of participants. Hence, this topic should not be avoided by care teams when directly brought up by the patient [36, 38]; furthermore, these types of discussions can be initiated by clinicians.

Our results provide useful information for future studies assessing the prevalence and determinants of the WTD. First, there should be no anxiety about discussing the WTD with patients. Second, SAHD-senior and/or CADO assessments can be used in internal medicine wards, where we have described a significant prevalence of WTD. The CADO is quickly administered and can be used as a screening tool. In contrast, the SAHD-senior may help to identify the intensity of a WTD [3]. Ideally, the WTD should be assessed several times during the patient’s stay, given its evolution over time [39]. Third, QoL can be assessed with a single question rather than with complex questionnaires.

This study has some limitations. First, we pooled the results from two instruments measuring different WTD dimensions. However, this is common practice [4] and the conclusions were similar when the analyses were restricted to each instrument. Second, the number of patients expressing a WTD was low, which reduces the statistical power of the analysis. However, compared with other studies, our sample size can be considered large. Only 93% of the calculated sample size was reached, which may have also slightly reduced the statistical power. However, we believe that the magnitude of this reduction was minimal. Third, we cannot exclude the possibility of selection bias; patients who were more depressed or more unwell may have refused to participate because they could not engage with this sensitive issue. Hence, it is possible that WTD prevalence may have been underestimated and that some associations (e.g. between QoL and the WTD) may be stronger than reported. Further, owing to consent issues, it was not fully possible to compare the characteristics of our sample with those of similar hospitalized patients. Hence, we cannot assume that our sample is representative of the target population. Fourth, the cross-sectional design of the study cannot take into account the fluctuating nature of the WTD [39]. However, many studies have assessed WTD only once [2‐4, 16, 17], as the variability of the WTD would add an extra complexity to the data analysis and interpretation. Finally, the study was conducted at a single hospital in French-speaking Switzerland, which has a population characterized by a high prevalence of atheism [40] and a high educational background. Unlike in many other countries, legalized assisted suicide is available in Switzerland, which facilitates the discussion of death among the population. Hence, our results may not be generalizable to other countries. It would be of interest to replicate our study in such countries and to compare the results.