Death wishes and explicit requests for euthanasia in a palliative care hospital: an analysis of patients files

A multidisciplinary working group of doctors, a psychologist and nurses defined the vocabulary before the start of the study. The following definition of euthanasia was adopted: an act deliberately designed to end the life of a person suffering from a serious incurable disease and, at his/her request, put an end to a situation that he/she considers unbearable [14]. This definition excludes requests made to care staff by members of the patient’s family.

The ER group was differentiated from the OWD group; OWD was defined as the expression by the person concerned of wishing to die or to be dead, but without explicitly requesting the assistance of a third party. A wish for the end of life to be short, for time to pass rapidly or to die quickly was classified as OWD; the patient had never explicitly requested an act to accelerate death. Suicidal thoughts (ST group) were classified specifically when the patient used the term “suicide” or talked explicitly about dying at their own hand.

All the medical and paramedical records for patients at the PCH are computerized (Osiris software, Corwin). The sociodemographic data for all the patients hospitalized in 2010 and 2011 were collected (SAP Business Objects Web Intelligence software). We then integrated the pathology data, data concerning the characteristics of the stay in the PCH (dates of admission and discharge, duration) and the anxiolytic and antidepressant treatments administered during stays in the PCH. The working group chose to conduct a wide-ranging search, to ensure that the identification of all expressions of WD was as exhaustive as possible. Table 1 indicates the computerized searches carried out on all carers’ notes.

Each note reporting a WD was classified into one, and only one, of three groups: ER, ST or OWD. Other notes, considered not to reflect a WD, were excluded; for example, all references to a previous ER, conversations with staff about euthanasia, requests from relatives and indications that palliative care was perceived as a type of euthanasia were excluded. The classification of each note into one, and only one, group allowed a hierarchy of items to be established, with explicit ER at the top, followed by ST and then, OWD. If there were several notes for a given patient, the patient was classified according the same hierarchy as the notes (ER, ST and OWD): the different notes for the same patient may reflect changeability in the expression of WD.

We analyzed the files of all the patients who had formulated an ER and checked for the following elements in all cases of repeated ER during the hospitalization: previous ER in the preadmission file, date and duration of the request during the stay in the PCH, and the person to whom the request was made. The working group established a grid for the qualitative analysis of these files, including the following elements:

The descriptive statistics are expressed as frequencies and percentages for categorical variables and as means and standard deviations (SD) for age at admission. Durations of stay in the unit are expressed as medians and interquartile ranges (IQR). We used chi² tests, Student’s t tests and Mann–Whitney U tests to compare groups, as appropriate for the type of variable. Univariate analyses were carried out to estimate the relative risk (RR) with a 95% confidence interval for belonging to a particular group. The significance threshold was fixed at p = 0.05 for two-tailed tests.

The study was approved by a regional ethics committee (Comité de Protection des Personnes CPP Ile de France VIII) under the label of an observational study.

In 2010 and 2011, 2157 patients were admitted to the PCH (Table 2), in which they stayed for a median of 13 days (IQR: 6 to 26 days; Table 3). The analysis included 33,024 medical observations and 195,862 nursing notes, corresponding to a mean of 0.7 medical observations and 4.3 paramedical notes per patient per day (Table 2). The computer search extracted 2080 relevant carers’ notes, corresponding to 917 patients; 1745 notes (84%) were excluded after rereading and contextual analysis.

As indicated in Table 2, each of the 335 notes was attributed to one of the three groups; then, the corresponding 195 patients were classified into three groups, according to the defined hierarchy. The ages, marital status and diseases did not differ between these other patients in the PCH (Table 3). However, more of these patients were female, the median duration of stay in the unit was significantly longer, and they were more likely than other patients to be treated with anxiolytics (RR = 3.7; 95% CI: 2.4 – 5.6) and antidepressants (RR = 2.2; 95% CI: 1.7 – 2.8).

There were 100 notes including an explicit ER formulated by 61 patients. These 61 stayed longer in the unit and were more likely than other patients to be treated with anxiolytics (RR = 7.4; 95% CI: 2.7 – 20.4) and antidepressants (RR = 2.6; 95% CI: 1.6 – 4.2). The sex, age, family status and diseases of these patients did not differ from those of other patients. The first request was made to a doctor (51% of cases), a nurse (39% of cases), a psychologist (7% of cases) or a care assistant (3%). This first request was made a median of six days after admission to the hospital (IQR: 2–14). The median interval between the last request and the end of the patient’s stay was seven days (IQR: 3–16 days).

Fifteen patients expressed the idea of suicide (ST group), with no significant difference between this group and other patients for age, marital status, disease or sex despite most being men; however, they were more likely to be given antidepressants (RR = 7.1; 95% CI: 2.0 – 25.2).

The OWD group included the 119 patients who expressed a desire to die: he or she spoke about this desire, wish or determination to die, to “leave” or to pass away, but without requesting the assistance of a third party to accelerate the process. Most of this group was female (RR: 2.1; 95% CI: 1.5 – 3.2) and many were widows (RR: 1.8; 95% CI: 1.2 – 2.5).

The notes reporting the ER indicate that 26 of the 61 (43%) patients formulated an OWD at some time; two patients (3%) had also considered killing themselves and, at another time, expressed OWD (see Figure 1).

Six of 61 patients reiterated their ER. The characteristics of these patients are summarized in Table 4: four of the six patients were over 83 years old, such that the mean age of this group was nine years older than that of the ER group. All had poorly controlled symptoms, with repercussions for their mental state. For the four oldest patients, the duration of the requests for euthanasia covered between 30 and 100% of their stay in the PCH, with a corresponding number of repeated demands. For the two younger patients (49 and 69 years), the request was repeated only three times over three days. In half these cases, the notion of an ER was recorded in the patient’s preadmission notes.

Our study confirms the findings of Ferrand who reported requests for hastened death made to French palliative care teams [15]. It documents the occurrence ER at the end of life in a palliative care setting. The low frequency of such requests, 3% of the patients hospitalized in the PCH, is nevertheless higher than the 1.6% reported in 1999 in a French study of 611 patients hospitalized in five PCUs [16]. More recent figures reported by a mobile palliative care team (1500 patients over a period of five years) are closer to ours, with 4.3% of patients requesting euthanasia and 0.6% of patients doing so in a persistent manner [17]; however, this previous study also included requests formulated by relatives. According to a Dutch survey in 2010, there was an explicit ER before 6.7% of all deaths, compared to 4.8% in 2005; this report provided no information about palliative care [9, 18]. A survey of general practitioners in Belgium noted that 27 of 200 non sudden home death patients (13.5%) had at some time formulated an ER; the authors reported that these wishes varied widely between patients, in both their formulation and timing [19]. Other studies are difficult to analyze, as they do not differentiate among WD between ER and OWD [20‐22].

We found that 9% of terminally ill patients in our PCH spontaneously expressed a WD, consistent with the frequency reported in a Greek palliative care setting [23]. The value was higher (14 to 17%) when a self-report measure was used to ask all terminally ill patients systematically about their desire for hastened death [20, 24]. These high frequencies contrast with the low frequency of strong WD (2%) reported in a sample of ambulatory cancer patients: therefore, the closeness to death and survival time may make very large contributions to such requests/desires [22]. A WD was clearly associated with depression and hopelessness [20, 24‐26]; we found also that antidepressant and anxiolytic consumption by these patients was higher than by other patients. Possibly, this is because the greater needs of these patients are recognized leading to more extensive use of pharmacological solutions.

To our knowledge, the predominance of female patients among those expressing a WD has not been reported before; OWD but not for ER was more frequent among female patients. Women hospitalized in PCHs are more likely to report a lower quality of life [27, 28], and women experience more overall psychological or existential distress than men [29]. This difference between the sexes about WD needs to be confirmed and analyzed, possibly by using a qualitative approach to compare the statements made by male and female patients.

For more than 20 years, it was generally considered that ER was less likely in palliative care than in other contexts [30‐32]; however, this opinion is currently the subject of debate, especially in those countries where euthanasia is legalized [6, 33‐35]. In Belgium, euthanasia in response to explicit requests is more frequent in PCU than in other types of care settings [10]. According to Belgian law, palliative care must be provided before euthanasia. One of the characteristics of the practice of palliative care is that there is no unnecessary prolongation of life and that the wishes of the patients are respected, particularly as concerns decisions to stop or limit treatments with no objective other than the prolongation of life [32, 36, 37]. Nevertheless, we show here that there were ER in our PCH. This reflects the good communication between the patients and the care teams. The provision of palliative care might help patients express ER [10]. We found that it takes time (median of 6 days) for this request to emerge and that the patients formulating ER are those staying longer in the PCH. However, according to the EAPC, the situations in which euthanasia or assisted suicide are requested are often complex and therefore the expertise of a palliative care team is required to listen to, understand and support these patients [32]. Consequently, making an ER is one of the reasons for admission into our PCH. The lag before the emergence of the demand may reflect the time required to establish a climate of confidence between the patient and the team in a multidisciplinary environment; indeed, doctors and nurses are approached in 90% of the first requests. This observation raises the issue of the influence of the attitudes of doctors about euthanasia. Kelly showed that demands were more frequent when doctors were in favor of euthanasia [38]. Interestingly, it has been pointed out that the opinion of palliative care and related organizations has, during the last 20 years, moved from opposition to a “studied neutrality” [39]. Note also that the observation of ER may depend on the attentiveness and quality of listening of the caregiver rather than his or her personal convictions or the policy or position of the institution.

We observed that 6 of 61 patients reiterated their ER during hospitalization. Some published studies report that the desire for death and the will to live are highly unstable even over brief periods among cancer patients, especially when they enter the terminal stage [25, 40‐42]. According to Ferrand, 34% of ER persist, but the duration of this persistence was not specified. By contrast, patients who express an ER may continue to desire ER after their requests have been refused but they may subsequently keep silent about it [43]. It is important to consider the impact of management on the discontinuity of the expression of the request. Possibly, in a country where euthanasia or physician-assisted-suicide is legal, requests would be more frequent and persistent as the patient is more likely to receive a favorable response from caregivers.

We followed the trajectories of the six patients whose requests for euthanasia were persistent. In four of these patients, decompensation of symptoms (pain, dyspnea, anxiety and depression) was initially of prime importance. These results are consistent with published findings [20, 26, 42, 44]. However, despite the control of symptoms and multidisciplinary management, ERs may persist, probably due to other more complex factors; such factors may reflect the expression of a desire to remain autonomous to the end or the loss of ability to tolerate physical, psychological, social or existential suffering such as a loss of self-esteem [12, 22, 42, 45, 46]. In some cases, the ER only ceases when the patient’s clinical state deteriorates or the patient experiences a decrease in consciousness, possibly a consequence of sedative treatment. In such cases, the change in the patient’s condition prevents him or her from reformulating an ER.

Our data show the variety of ways the wish not to live longer can be expressed, from an OWD without the intervention of a third party to an explicit ER. Clarification of the difference between an ER and OWD makes it possible to understand the interaction between the two. About two in five patients formulating an explicit ER also express an OWD. This suggests that ER and OWD are in the same psychological register with respect to life: the patient no longer wishes to live. However, the desired mode of death is unclear. The observed changeability of ER should not raise questions about the meaningfulness of these requests, but should lead to consideration of the dynamic changes in these requests, and to care staff paying additional attention to the individual, his or her suffering and the context. Work involving interviews of cancer patients with short life expectancy indicates that wishes for euthanasia or physician-assisted suicide are different from ER: wishes remain hypothetical and are fluctuating and ambivalent [41].

In France, unlike Switzerland, there has not yet been any significant media communication or debate about assisted suicide. This may explain the small number of patients, more male patients than female, thinking of suicide. We found that the patients requesting euthanasia differed from those raising the possibility of suicide, with almost no overlap between these two expressions of WD. This may be linked to differences in patient expectations: euthanasia could be perceived as a “therapeutic act” in the medical field, whereas suicide could be more personal, with a lesser role played by care staff.

Our study is based on the notes in which the care staff recorded WD, and this approach is associated with a risk of underrepresentation. There are three possible causes. First, the resistance to speaking and writing about ER. Although it is routine practice in PCHs to transcribe everything reflecting or describing the complexity of the situation (five notes per patient per day in our institution), care staff confronted with such requests may wish to distance themselves from them, making it difficult for them to transmit this information. Second, carers may feel helpless in response to such demands: they do not lead to any clear action or even decisions. Third, the collection of ER depends upon the sense of WD the carer gave to what he/she heard. Furthermore, only the WD expressed to the staff are included in patient files. Notes were written prospectively but the analyses we report were retrospective. Only a prospective quantitative and qualitative study would provide exhaustive data. Also, our study was conducted in a single hospital. Nevertheless, the hospital includes six PCUs, such that the findings may be representative of palliative care in the Parisian region more generally.