Palliative and Supportive Care (2015), 13, 295– 303. # Cambridge University Press, 2014 1478-9515/14 doi:10.1017/S1478951514000121
Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care
¨ ELL, M.D., ADELAIDA RAMOS, R.N., TANIA ZERTUCHE, ERNEST GU ANTONIO PASCUAL, M.D., PH.D.
M.D., AND
Palliative Care Unit, Oncology Department, Hospital de la Santa Creu i Sant Pau, Universitat Auto`noma de Barcelona, Barcelona, Spain (RECEIVED December 13, 2013; ACCEPTED January 6, 2014)
ABSTRACT Objective: We aimed to address the prevalence of desire-to-die statements (DDSs) among terminally ill cancer patients in an acute palliative care unit. We also intended to compare the underlying differences between those patients who make desire-to-die comments (DDCs) and those who make desire-for-euthanasia comments (EUCs). Method: We conducted a one-year cross-sectional prospective study in all patients receiving palliative care who had made a DDC or EUC. At inclusion, we evaluated symptom intensity, anxiety and depression, and conducted a semistructured interview regarding the reasons for these comments. Results: Of the 701 patients attended to during the study period, 69 (9.8%; IC95% 7.7 –12.3) made a DDS: 51 (7.3%) a DDC, and 18 (2.5%) an EUC. Using Edmonton Symptom Assessment Scale (ESAS) DDC group showed higher percentage of moderate-severe symptoms (ESAS . 4) for well-being (91 vs. 25%; p ¼ 0.001), depression (67 vs. 25%; p ¼ 0.055), and anxiety (52 vs. 13%; p ¼ 0.060) than EUC group. EUC patients also considered themselves less spiritual (44 vs. 84%; p ¼ 0.034). The single most common reason for a DDS was pain or physical suffering, though most of the reasons given were nonphysical. Significance of results: Almost 10% of the population receiving specific oncological palliative care made a DDC (7.3%) or EUC (2.5%). The worst well-being score was lower in the EUC group. The reasons for both a DDC and EUC were mainly nonphysical. We find that emotional and spiritual issues should be identified and effectively addressed when responding to a DDS in terminally ill cancer patients. KEYWORDS: Attitude toward death, Euthanasia, Palliative care
INTRODUCTION
on external factors, and the problem of its conceptualization (Monforte-Royo et al., 2011). Research studies regarding this type of statement mainly address questionnaires among patients or health personnel in hypothetical situations (Johansen et al., 2005; Hudson et al., 2006; Karlsson et al., 2012). In a recent systematic review (Hudson et al., 2006) of 35 studies regarding DDSs, only 8 included patients had a current DDS and only 3 of the studies focused on advanced cancer patients (Kelly et al., 2003a; 2003b; Coyle & Sculco, 2004; Mak & Elwyn, 2005). The philosophy of palliative care is holistic. It considers physical, emotional, and spiritual concerns, focusing on quality of life, relief of suffering, and
Desire-to-die statements (DDSs) are not uncommon among terminally ill cancer patients (Hendry et al., 2013). DDSs cover a wide range of patients’ wishes, such as a desire for death to occur, a wish to hasten death, and requests for euthanasia or physician-assisted suicide. Determining the epidemiology of this construct is not an easy task due to the very nature of the phenomenon, its variability and dependency Address correspondence and reprint requests to: Ernest Gu¨ell, Palliative Care Unit, Oncology Department, Hospital de la Santa Creu i Sant Pau, Universitat Auto`noma de Barcelona, Barcelona, Spain. E-mail: [email protected]
295
296 humanism in the patient – doctor relationship, thus dignifying the process of death (Sanz Ortiz & Bild, 1985; Foley, 1997). Nevertheless, a considerable percentage (8.5 to 17%) of advanced cancer patients receiving palliative care still make a DDS (Chochinov et al., 1995; Rosenfeld et al., 1999; Breitbart et al., 2000; Kelly et al., 2003a). Many factors have been associated with a DDS— predominantly depression, hopelessness (with or without depression), anxiety, poor social support (especially being widowed), low functional capacity, elevated pain intensity, and other physical symptoms (Rosenfeld et al., 1999; Breitbart et al., 2000; Coyle & Sculco 2004; Shim & Hahm, 2011; Julia˜o et al., 2013). Factors such as poor spiritual well-being (Brady et al., 1999), decreased quality of life (Cohen et al., 1995), and perception of being a burden to others are also referred to often. On some occasions, however, patients with a DDS exhibit none of the above (Chochinov et al., 1995). In several qualitative studies and systematic reviews (Bascom & Tolle, 2002; Pearlman et al., 2005; Mak & Elwyn, 2005; Wilson et al., 2007), there are five main reasons for having a DDS: (1) loss of meaning, sense, or dignity in continuing to live when there is the certainty of a progressive functional limitation and health deterioration with a subsequent fatal ending; (2) loss of identity secondary to physical, personality, emotional, and capacity changes; (3) perception of current or future self-suffering (pain or other symptoms, hopelessness or loss of enjoyment of life) or others’ suffering: (4) consideration that it is a compassionate act that facilitates a smooth death, avoiding worsening and greater suffering than death itself; and (5) preparedness and willingness to die, retaining the autonomy to choose how and when they will die. Spirituality in terminally ill patients (Brady et al., 1999; Breitbart, 2002; Benito et al., 2008) includes faith in a superior power, the meaning of one’s own life (Karasu, 1999), and the concepts of love, reconciliation, and forgiveness (Kuhn, 1988). Patients who consider themselves spiritual show greater tolerance to severe physical symptoms, less hopelessness, and less depression than patients who do not (Breitbart et al., 2000). In one semistructured interview about attitudes toward legalization of euthanasia or assisted suicide conducted in patients at a palliative care unit, 5.8% stated they would ask for it if it were legal (Wilson et al., 2007). These patients had less intense religious beliefs, lower performance status, a higher symptom burden, and higher prevalence of depressive mood. In our exploratory study, focused on the Mediterranean nation of Spain, rather than using specific screening tests available in the English literature, we only included patients who made a spontaneous
Gu¨ell
desire to die statement to any member of the palliative care unit. A secondary aim was to describe the demographic, symptomatic, emotional, and spiritual issues in this population and to determine possible differences regarding patients who made desire-todie comments (DDCs) and those who made desirefor-euthanasia comments (EUCs). METHODS From October of 2007 to October of 2008, a total of 701 patients were cared for in the palliative care unit at Hospital Sant Pau, a tertiary university hospital in Barcelona, Spain. They were treated by a highly specialized team of physicians, nurses, and psychologists. The palliative care unit admits ambulatory patients and referrals from all the Hospital Sant Pau departments. In accordance with the findings of Higginson and Costantini (2002), communication between professionals in our palliative care unit could be classified as “correct messages between key professionals with minor inaccuracies and delays between others.” We conducted a one-year cross-sectional prospective study that included all patients in the palliative care unit who made any spontaneous comment to any member of the team representing a generic DDS. Daily, at each morning session, any new DDS was classified by consensus as a DDC or EUC. In the EUC group, we included only those patients who made an unmistakable, clear statement of desire for euthanasia or assisted suicide. All other DDSs were classified as a DDC. Latency (time between entering the palliative care program until the statement) and survival (time from statement to death) were calculated. We prospectively followed each patient with a DDS, recording whether or not the DDS persisted, the place of death, and the need for sedation. At inclusion we recorded demographic and clinical data; functional capacity employing the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale (Oken et al., 1982) and the Barthel Index (Mahoney & Barthel, 1965; Bazta´n et al., 1993); and cognitive function with the Mini-Mental State Examination (MEC, Spanish version) (Folstein et al., 1975; Lobo et al., 1999). We also employed the Support Team Assessment Schedule (STAS) (Higginson, 1993; Higginson & McCarthy, 1993) and measured the team’s consensus about patient knowledge concerning level of illness (Ellershaw et al., 1995) and acceptance (Ku¨bler-Ross, 1973). Patients with adequate physical and cognitive status and who had no communication barriers were asked to evaluate the intensity of symptoms using the Edmonton Symptoms Assessment Scale (ESAS) (Bruera
297
Verbalized desire for death or euthanasia
et al., 1991), depression and anxiety with the Hospital Anxiety and Depression Scale (HADS) as a screening test (Zigmond & Snaith, 1983; Tejero et al., 1986; Herrero et al., 2003), and the value of their life using the Palliative Outcome Scale (POS) (Hearn & Higginson, 1999; Serra-Prat et al., 2004). Each of these measures has been widely used and validated in terminally ill populations. A semistructured interview was conducted to explore the patients’ reasons for making a DDS, their previous and current views toward euthanasia, their religious beliefs, and to elicit a spiritual self-assessment (Brady et al., 1999; Breitbart, 2002; Paya´s et al., 2008). Ours was an exploratory study to describe the prevalence of DDSs in a palliative care unit. We also analyzed data looking for differences between the DDC and EUC groups. For descriptive analysis we utilized the number of cases and their percentage for categorical variables, and the median and
interquartile range (IQR) for quantitative and ordinal variables. A Fisher’s exact test (or likelihood ratio when the contingency table was larger than two by two) was employed to compare categorical variables, and a Mann –Whitney U test was applied to compare quantitative and ordinal variables. Unless specified otherwise, inferences refer to the comparison between the DDC and EUC groups with a significance according to a Cronbach’s alpha a equal to 0.05. We employed an IBM –SPSS statistical package (version 21.0) to analyze the data. The study was approved by the ethics committee at our center, and a written informed consent was obtained from all participants. RESULTS Of the 701 patients cared for at our palliative care unit over the study period, 69 (9.8%; IC95% 7.7 – 12.3) verbalized a DDS: 51 made a DDC (7.3%), and
Table 1. Characteristics of patients with a DDS (DDC and EUC) DDS n ¼ 69 Age Median (IQR) PS Median (IQR) Barthel Median (IQR) Gender Men Women Type of cancer Lung Colorectal Urinary tract Breast Prostate Head and neck Lymphoma Unknown origin Stomach Pancreas Hepatocarcinoma Cervix Other Metastases Yes No Social status Married or cohabiting Widowed Separated/divorced Single Living conditions Living with others Living alone
75 3 30 n
(63.5–80.5) (3–4) (10– 65) (%)
39 (56.5) 30 (43.5)
DDC n ¼ 51
EUC n ¼ 18
p
74 (62– 81) 3 (3 –4) 30 (10– 70) n (%)
76 (72.5–80.3) 3 (3– 4) 37.5 (20–50) n (%)
0.289 0.778 0.556
28 (54.9) 23 (45.1)
11 (61.1) 7 (38.9)
0.784
(24.6) (14.5) (7.2) (5.8) (5.8) (5.8) (5.8) (5.8) (4.3) (2.9) (2.9) (2.9) (11.6)
9 (17.6) 8 (15.7) 4 (7.8) 4 (7.8) 4 (7.8) 4 (7.8) 3 (5.9) 3 (5.9) 3 (5.9) 1 (2.0) 0 (0.0) 1 (2.0) 7 (13.8)
8 (44.4) 2 (11.0) 1 (5.6) 0 (0.0) 0 (0.0) 0 (0.0) 1 (5.6) 1 (5.6) 0 (0.0) 1 (5.6) 2 (11.0) 1 (5.6) 1 (5.6)
0.097
56 (81.2) 13 (18.8)
39 (76.5) 12 (23.5)
17 (94.4) 1 (5.6)
0.160
32 18 10 9
(46.4) (26.1) (14.5) (13.0)
25 (49.0) 14 (27.5) 5 (9.8) 7 (13.7)
7 (38.9) 4 (22.2) 5 (27.8) 2 (11.1)
0.374
52 (75.4) 17 (24.6)
41 (80.4) 10 (19.6)
11 (61.1) 7 (38.9)
0.121
17 10 5 4 4 4 4 4 3 2 2 2 8
IQR ¼ interquartile range; PS ¼ performance status; DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment.
298
Gu¨ell
Table 2. Symptom prevalence and mean intensity (STAS) Symptom
STAS .0 (%)
Asthenia Well-being Anorexia Dry mouth Depression Somnolence Anxiety Pain Dyspnea Nausea
99 99 90 88 88 80 77 72 52 26
DDS Mean (SD) 2.6 2.3 2.1 2.0 2.0 1.3 1.4 1.3 0.8 0.3
(0.8) (0.9) (1.1) (1.0) (1.0) (0.8) (1.1) (1.0) (1.0) (0.7)
DDC Mean (SD)
EUC Mean (SD)
p
2.6 (0.8) 2.4 (0.9) 2.1 (1.1) 1.9 (0.9) 2.0 (0.9) 1.3 (0.9) 1.4 (1.0) 1.3 (1.0) 0.8 (0.9) 0.4 (0.7)
2.6 (0.6) 2.3 (1.0) 2.2 (0.9) 2.1 (1.2) 1.6 (1.2) 1.1 (0.8) 1.2 (1.1) 1.1 (0.9) 0.8 (1.0) 0.1 (0.3)
0.818 0.589 0.782 0.405 0.168 0.417 0.302 0.354 0.821 0.111
STAS ¼ Support Team Assessment Schedule; DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desireto-die comment; EUC ¼ patients with euthanasia comment.
18 made an EUC (2.5%). DDCs and EUCs continued until death in 88% (45/51) and 94% (17/18), respectively. A small percentage (4%; 2/51) of patients with an initial DDC later made an EUC. Table 1 shows patients’ main characteristics. The median age was 75 (IQR 63.5 – 80.5) years. Median survival and latency were 10 (IQR 4 – 10) and 6 (IQR 1 – 56) days, respectively; in 16 of 69 cases (23%), the statement was made at the first meeting in the palliative care unit. The team evaluation (STAS) showed that the most intense symptoms were, in order of frequency, asthenia, anorexia, dry mouth, depression, and decreased well-being (Table 2). According to the palliative care assessment tool (Ellershaw et al., 1995), 36 of the 69 (52%) patients were fully aware (4 on a 0 – 4 scale) of their diagnosis and prognosis, and 27 (39%) had limited insight about the prognosis (3 on a 0 – 4 scale). The remaining
six patients scored lower than 3. The EUC group showed greater insight into their illness than the DDC group (median 4 vs. 3, p ¼ 0.039). About half the patients in both groups died in the palliative care unit, most in a state of acceptance according to the Ku¨bler-Ross model. Table 3 shows this and other conditions at death. Some 13 of the 69 (19%) patients required palliative sedation. The percentage of sedation tended to be higher in the EUC group (33 vs. 14%, p ¼ 0.086). The drug used for sedation was midazolam in all cases (median dose 75, IQR 60– 120 mg/day). Of the 69 patients, 34 were able to partake in an interview that included reasons for their DDS, religious beliefs, self-spiritual assessment, and the ESAS and HADS scales. Survival in these patients was higher than those who do not were able to partake in the interview (13 vs. 8 days; p ¼ 0.023). Of the 35 patients excluded, 34 presented at least one
Table 3. Final conditions at death DDS n (%)
DDC n (%)
EUC n (%)
p
Place of death
PCU HFI OHU HOM
31 15 13 10
(45) (22) (19) (14)
7 (39) 7 (39) 2 (11) 2 (11)
24 (47) 8 (16) 11 (22) 8 (16)
0.142
Acceptance
Yes No
44 (64) 25 (36)
12 (67) 6 (33)
32 (63) 19 (37)
0.538
Sedation
Yes No
13 (19) 56 (81)
6 (33) 12 (67)
7 (14) 44 (86)
0.086
Reasons for sedation
Agitation Existential distress Dyspnea
8 (61) 4 (31) 1 (8)
3 (50) 2 (33) 1 (17)
5 (71) 2 (29) 0 (0)
0.158
DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment; PCU ¼ palliative care unit; HFI ¼ health facility; OHU ¼ other hospital units; HOM ¼ home.
299
Verbalized desire for death or euthanasia
Fig. 1. Patient recruitment flowchart.
exclusion criterion (extremely deteriorated physical state – 25– , altered MEC – 22– , or communication barriers – 13 – ). The remaining patient refused to participate in the interview. Figure 1 presents a schematic for how patients were recruited. Symptom intensity using the ESAS was conducted in 29 (21 DDC, 8 EUC) of the 34 patients. It was not performed in the other five due to misunderstanding of the tool. Of the 10 symptoms explored using the ESAS, we found that seven had some degree of intensity (ESAS .0) in more than 75% of patients (see Table 4). The median baseline ESAS well-being was worse in the DDC group than in the EUC group (7 vs. 3, p ¼ 0.001). In both groups, symptom intensity was moderate or severe (ESAS .4, as shown by Selby et al., 2010) in asthenia, dry mouth, decreased wellbeing, anorexia, and depression in more than half
the patients. A baseline ESAS score above 4 was worse in the DDC group than in the EUC group for well-being (91 vs. 25%; p ¼ 0.001) and tended to be worse for depression (67 vs. 25%; p ¼ 0.055) and anxiety (52 vs. 13%; p ¼ 0.060). Some 18 of the 34 patients (53%) scored higher than 11 on the HADS depression subscale, and 5 (15%) had borderline depression scores (8 –10). Three patients (9%) scored above 11 on the HADS anxiety subscale, and 9 (27%) had borderline anxiety scores (8 –10). The median scores were 11 (range 1–21) and 6 (range 0 –14) for both subscales, respectively. No differences between the DDC or EUC groups were found on any HADS subscale. Using one question from the palliative outcome scale (which ranges from 0, meaning “all the time”, to 4, meaning “no, not at all”), we asked patients if they felt life was worth living. The EUC group scored 3 and 4 more frequently than the DDC group (78 vs. 32%: p ¼ 0.023). Twenty of the 34 patients (59%) considered themselves religious (95% Catholic, 20% other regular practitioners); the EUC group tended to be less religious than the DDC group (33 vs. 68%; p ¼ 0.079). We also found that 25 patients (74%) considered themselves spiritual, this percentage being significantly lower in the EUC group (44 vs. 84%; p ¼ 0.034). The most frequently cited reason for a DDS was “pain or physical suffering,” but, taken together, nonphysical reasons predominated (Table 5). Patients gave a median of three reasons (range 1–9) to justify the DDS. The item “retaining autonomy to choose how and when to die/I will die” was the only statistically significant item, showing a higher percentage in the EUC group (33 vs. 4%, p ¼ 0.048).
Table 4. Symptom prevalence (ESAS . 0 and ESAS . 4); ESAS mean and median scores according to DDC or EUC ESAS Symptom
ESAS .0 (%)
ESAS .4 (%)
Asthenia Dry mouth Well-being Anorexia Depression Anxiety Pain Somnolence Dyspnea Nausea
97 93 93 79 76 62 83 79 59 24
79 76 72 69 55 41 38 31 24 10
ESAS: Mean (Median) DDS (n¼29)
DDC (n ¼ 21)
EUC (n ¼ 8)
p
6.17 (7) 6.52 (7) 5.59 (6) 5.28 (5) 5.03 (5) 2.97 (3) 3.62 (4) 3.66 (4) 2.45 (2) 1.07 (0)
6.52 (7) 5.90 (6) 6.52 (7) 5.24 (5) 5.57 (7) 3.19 (5) 3.67 (4) 3.86 (4) 2.76 (3) 1.43 (0)
5.25 (6) 8.13 (8) 3.12 (3) 5.38 (5) 3.62 (2.5) 2.38 (3) 3.50 (3) 3.12 (3.5) 1.62 (0) 0.12 (0)
0.301 0.047 0.001 0.943 0.301 0.457 0.943 0.582 0.279 0.429
ESAS ¼ Edmonton Symptom Assessment Scale; DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment.
300
Gu¨ell
Table 5. Reasons for DDS (DDC or EUC) (n ¼ 34) Number of Times Stated
Pain or physical suffering Understanding there is no point in continuing to live. Loss of autonomy Fear of future suffering Being a burden General discomfort Being tired of living Loss of independence Loss of meaning of own life Depending on others for care Controlling circumstances of own death Being ready to die Loss of corporal functions Not having any nice moments Poor quality of life Loss of dignity “Other reasons”
DDS n
DDC n (%)
EUC n (%)
p
15 12
12 (48) 8 (32)
3 (33) 4 (44)
0.697 0.687
12 11 11 11 9 8 8 6
10 (40) 9 (36) 10 (40) 8 (32) 8 (32) 6 (24) 7 (28) 6 (24)
2 (22) 2 (22) 1 (11) 3 (33) 1 (11) 2 (22) 1 (11) 0 (0)
0.439 0.682 0.214 1.000 0.386 1.000 0.403 0.162
4
1 (4) 3 (33)
0.048
3 2 2
2 (8) 2 (8) 2 (8)
1 (11) 1.000 0 (0) 1.000 0 (0) 1.000
2 1 14
1 (4) 0 (0)
1 (11) 0.465 1 (11) 0.265
DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment.
Patients generally considered that their illness did not change their former view on euthanasia (27/34; 79%); five of the seven who did alter their opinion moved toward a favorable one. Within the euthanasia debate, 21 of 34 patients (62%) were in favor, 14 of whom (67%) stated they would initiate formalities if it were legal, representing 2% of the cared-for population. DISCUSSION Patients were included in the present study on the basis of any spontaneous comment made to any member of the palliative care unit concerning a desire to die or desire for euthanasia. We found that the prevalence of desire-to-die statements using this single inclusion criterion was similar to that in previous studies using screening scales (Chochinov et al., 1995; Foley, 1997; Emanuel et al., 2000; Wilson et al., 2000; Ganzini et al., 2000; Coyle & Sculco, 2004), indicating that verbally expressing a wish to die is a highly sensitive matter. Indeed, several considerations suggest that the prevalence in our study could even have been underestimated: (1) we did not use a screening process, so DDSs in some patients
were likely missed; (2) DDSs are often stated exclusively to family members (Morita et al., 2004); (3) DDSs are not necessarily verbalized in our setting as a patient may consider this futile given the illegal status of euthanasia in Spain; and (4) DDSs in patients transferred to other healthcare centers are unknown. The percentage of moderate to severe symptoms (ESAS .4) was similar to that in previous DDS studies (Chochinov et al., 1995; Rosenfeld et al., 1999; Kelly et al., 2003a; 2003b). Surprisingly, we found that physical, emotional, and spiritual concerns differed between desire-to-die comments (DDCs) and desire-for-euthanasia comments (EUCs) patients. Decreased well-being was higher in the DDC group than in the EUC group. Depression and anxiety tended to be higher in the DDC group, but this was not statistically significant, probably due to the sample size (29 evaluable patients). This tendency suggests that reasons other than physical or emotional ones may have triggered the EUC (Levene & Parker, 2011). These differences, however, were not detected using the HADS –D or HADS– A. This poor concordance between depression and anxiety measured by the ESAS and HADS subscales has been reported previously in advanced cancer patients (Teunissen et al., 2007). The HADS scores found in our survey are similar to those in other studies in advanced cancer patients with no specific DDS (Holtom & Barraclough, 2000). Our findings support those of other authors who have shown that a high percentage of patients with a DDS consider themselves spiritual. Some authors consider that spiritual assistance guidelines should be implemented as part of standard palliative practice as it has been found that they increase the likelihood of a serene death (Rousseau, 2000). Along these lines, logotherapy (Zuehlke & Watkins, 1975) may be considered one of the first reported approaches to spirituality in advanced cancer patients. The predominance of existential aspects explains the recent proposal to tailor the model of care to individual patients (Mak & Elwyn, 2005). Such a talking-death model could be useful rather than stressful (Emanuel et al., 2004), and should consider expectations and fears, palliative care options, personal objectives, aspects regarding family and carers, physical and emotional relief, meaning of life, quality of life, and depressive symptoms (Bascom & Tolle, 2002). A novel intervention called “meaning-centered psychotherapy” (Breitbart et al., 2010; 2012) was recently implemented in a pilot randomized controlled trial with advanced cancer patients. The findings showed that spiritual well-being and sense of meaning and anxiety improved while the desire for death decreased. However, patients included in Breitbart’s
301
Verbalized desire for death or euthanasia
study differed from ours: recruitment was ambulatory, Karnofsky performance scores were higher, and survival was longer than eight weeks. Another intervention, the dignity model and dignity therapy (Chochinov et al., 2005), employs holistic and individualized approaches that foster improvement in the will to live in terminally ill patients. Unfortunately, some patients in our study were not fully aware of their diagnosis and prognosis, a necessary item for dignity therapy. Furthermore, to our knowledge, there is no extensive specific training in dignity therapy in Spain. We believe that qualitative studies are needed to better understand the great diversity of reasons behind a DDS (Kelly et al., 2003a; Mak & Elwyn, 2003; 2005; Bharucha et al., 2003; Coyle & Sculco, 2004; Pearlman et al., 2005). It is of particular interest that, as in two previous studies (Portenoy et al., 1994; Chochinov et al., 1999), we found that most reasons given were not related to symptoms. And, interestingly, the only reason that was statistically different between our EUC and DDC patients was that the former wished to retain their autonomy concerning how and when they would die. Regarding the euthanasia debate, most of our DDS patients (62%) were in favor of its legalization, and they stated that they had not changed their opinion since the onset of their illness. This figure is similar to that found in a study within the general population in Spain (OCU, 2000) in which 75% of participants were in favor of legalizing euthanasia. We believe it is also noteworthy that 28% of the DDC patients in our study stated that they would apply for euthanasia if it were legal. This suggests that this subgroup understood that there was no point to requesting euthanasia while it remained illegal. Our study has several limitations. First, patients who had a desire for hastened death or euthanasia and did not or could not (due to physical factors) verbally express these desires were missed. Furthermore, some expressions of these desires may not have been witnessed by staff. Second, as there was no control group, we cannot compare symptoms with patients who did not make a DDS. Third, the sample size was not large enough to detect all statistical differences between the DDC and EUC groups, but multiple correlations were employed, the reason being that it was originally designed to investigate the prevalence of DDSs. Fourth, as our sample was recruited from a palliative care unit that attends to patients referred from all hospital departments, it may not be generalizable to less extensive models of palliative care. Promoting palliative care and advocating legalization of voluntary euthanasia are seen by many as opposing forces when in fact they share some common
values (Hurst & Mauron, 2006). Our findings further confirm the need for an emotional and spiritual approach in patients who make a DDC or EUC, emphasizing their singular lived experiences and individual concepts of autonomy and beneficence. ACKNOWLEDGMENTS This study received a research grant from the Victor Grı´fols Foundation.
CONFLICTS OF INTEREST The authors state that they have no conflicts of interest to declare. REFERENCES Bascom, P. & Tolle, S. (2002). Responding to requests for physician-assisted suicide. The Journal of the American Medical Association, 288, 91–98. Bazta´n, J.J., Pe´rez, J., Alarco´n, T., et al. (1993). I´ndice de Barthel: Instrumento valido para la valoracio´n funcional de pacientes con enfermedad cerebrovascular. Revista Espan˜ola de Geriatrı´a y Gerontologı´a, 28, 32–40. Benito, E., Barbero, J. & Paya´s, A. (2008). El acompan˜amiento espiritual en cuidados paliativos: Una introduccio´n y una propuesta. Available from http:// hospicemadreteresa.org.ar/esp/wp-content/uploads/ 2011/11/guia-espiritual-secpal.pdf. Bharucha, A., Pearlman, R., Back, A., et al. (2003). The pursuit of physician-assisted suicide: Role of psychiatric factors. Journal of Palliative Medicine, 6, 873 –883. Brady, M.J., Peterman, A.H., Fitchett, G., et al. (1999). A case for including spirituality in quality of life measurement in oncology. Psycho-Oncology, 8, 417– 428. Breitbart, W. (2002). Spirituality and meaning in supportive care: Spirituality and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer, 10, 272 –280. Breitbart, W., Rosenfeld, B., Pessin, H., et al. (2000). Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. The Journal of the American Medical Association, 284, 2907–2911. Breitbart, W., Rosenfeld, B., Gibson, C., et al. (2010). Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology, 19, 21–28. Breitbart, W., Poppito, S., Rosenfeld, B., et al. (2012). Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology, 30, 1304 –1399. Bruera, E., Kuehn, N., Miller, M.J., et al. (1991). The Edmonton Symptom Assessment System: A simple method for the assessment of palliative care. Journal of Palliative Care, 7, 6 –9. Chochinov, H.M., Wilson, K.G., Enns, M., et al. (1995). Desire for death in the terminally ill. American Journal of Psychiatry, 152, 1185– 1191. Chochinov, H.M., Tataryn, D., Clinch, J.J., et al. (1999). Will to live in the terminally ill. Lancet, 354, 816 –819. Chochinov, H.M., Hack, T., Hassard, T., et al. (2005). Dignity therapy: A novel psychotherapeutic intervention
302 for patients near the end of life. Journal of Clinical Oncology, 23, 5520– 5525. Cohen, S.R., Mount, B.F., Strobel, M.G., et al. (1995). The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliative Medicine, 9, 207– 219. Coyle, N. & Sculco, L. (2004). Expressed desire for hastened death in seven patients living with advanced cancer: A phenomenological inquiry. Oncology Nursing Forum, 31, 699 –708. Ellershaw, J.E., Peat, S.J. & Boys, L.C. (1995). Assessing the effectiveness of a hospital palliative care team. Palliative Medicine, 9, 145 –152. Emanuel, E.J., Fairclough, D.L. & Emanuel, L.I. (2000). Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. The Journal of the American Medical Association, 284, 2460– 2468. Emanuel, E.J., Fairclough, D., Wolfe, P., et al. (2004). Talking with terminally ill patients and their caregivers about death, dying, and bereavement. Is it stressful? Is it helpful? Archives of Internal Medicine, 164, 1999– 2004. Foley, K. (1997). Competent care for the dying instead of physician-assisted suicide. The New England Journal of Medicine, 336, 54–58. Folstein, M.F., Folstein, S.E. & McHugh, P.R. (1975). “Minimental state”: A practical method of grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189– 198. Ganzini, L., Nelson, H.D., Schmidt, T.A., et al. (2000). Physicians’ experiences with the Oregon Death with Dignity Act. The New England Journal of Medicine, 342, 557– 563. Hearn, J. & Higginson, I.J. (1999). Development and validation of a core outcome measure for palliative care: The palliative care outcome scale. Palliative care core audit project advisory group. Quality in Health Care, 8, 219– 227. Hendry, M., Pasterfield, D., Lewis, R., et al. (2013). Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying. Palliative Medicine, 27, 13– 26. Herrero, M.J., Blanch, J., Peri, J.M., et al. (2003). A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General Hospital Psychiatry 25, 277 –283. Higginson, I.J. (1993). Audit methods: A community schedule. In Clinical audit in palliative care. I.J. Higginson (ed.), pp. 34– 47. Oxford: Radcliffe Medical Press. Higginson, I.J. & Costantini, M. (2002). Communication in end-of-life cancer care: A comparison of team assessments in three European countries. Journal of Clinical Oncology, 20, 3674–3682. Higginson, I.J. & McCarthy, M. (1993). Validity of the support team assessment schedule: Do staffs’ ratings reflect those made by patients or their families? Palliative Medicine, 7, 219– 228. Holtom, N. & Barraclough, J. (2000). Is the Hospital Anxiety and Depression Scale (HADS) useful in assessing depression in palliative care? Palliative Medicine, 14, 219 –220. Hudson, P., Kristjanson, L., Ashby, M., et al. (2006). Desire for hastened death in patients with advanced disease
Gu¨ell and the evidence base of clinical guidelines: A systematic review. Palliative Medicine, 20, 693– 701. Hurst, S. & Mauron, A. (2006). The ethics of palliative care and euthanasia: Exploring common values. Palliative Medicine, 20, 107 –12. Johansen, S., Holen, J.C., Kaasa, S., et al. (2005). Attitudes towards, and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit. Palliative Medicine, 16, 454– 460. Julia˜o, M., Barbosa, A., Oliveira, F., et al. (2013). Prevalence and factors associated with desire for death in patients with advanced disease: Results from a Portuguese cross-sectional study. Psychosomatics, 54, 451–457. Karasu, T.B. (1999). Spiritual psychotherapy. American Journal of Psychotherapy, 53, 143 –162. Karlsson, M., Milber, A. & Strang, P. (2012). Dying cancer patients’ own opinions on euthanasia: An expression of autonomy? A qualitative study. Palliative Medicine, 26, 34–42. Kelly, B., Burnett, D., Pelusi, S., et al. (2003a). Factors associated with the wish to hasten death: A study of patients with terminal illness. Psychological Medicine, 33, 75–81. Kelly, B., Burnett, P., Badger, S., et al. (2003b). Doctors and their patients: A context for understanding the wish to hasten death. Psycho-Oncology, 12, 375– 184. Ku¨bler-Ross, E. (1973). On death and dying. Florence, KY: Routledge. Kuhn, C.C. (1988). A spiritual inventory of the medically ill patient. Psychiatric Medicine, 6, 87–100. Levene, I. & Parker, M. (2011). Prevalence of depression in granted and refused requests for euthanasia and assisted suicide: A systematic review. Journal of Medical Ethics, 37, 205– 211. Lobo, A., Sanz, P., Marcos, G., et al. (1999). Revalidacio´n y normalizacio´n del Mini-Examen Cognoscitivo (primera versio´n en castellano del Mini-Mental Status Examination) en la poblacio´n general geria´trica. Medicina Clinica (Barcelona), 112, 767 –774. Mahoney, F.I. & Barthel, D.W. (1965). Functional evaluation: The Barthel Index. Maryland State Medical Journal, 14, 61– 65. Mak, Y. & Elwyn, G. (2003). Use of hermeneutic research in understanding the meaning of desire for euthanasia. Palliative Medicine, 17, 395– 402. Mak, Y. & Elwyn, G. (2005). Voices of the terminally ill: Uncovering the meaning of desire for euthanasia. Palliative Medicine, 19, 343 –50. Monforte-Royo, C., Villavicencio-Cha´vez, C., Toma´sSa´bado, J., et al. (2011). The wish to hasten death: A review of clinical studies. Pyscho-Oncology, 20, 795– 804. Morita, T., Sakaguchi, Y., Hirai, K., et al. (2004). Desire for death and requests to hasten death of Japanese terminally ill cancer patients receiving specialized inpatient palliative care. Journal of Pain and Symptom Management, 27, 44– 52. Oken, M.M., Creech, R.H., Tormey, D.C., et al. (1982). Toxicity and response criteria of the Eastern Cooperative Oncology Group. American Journal of Clinical Oncology, 5, 649 –655. Organizacio´n de Consumidores y Usuarios (OCU) (2000). Calidad de vida en los enfermos terminales. Barcelona: OCU. Paya´s, A., Barbero, J., Baye´s, R., et al. (2008). ¿Co´mo perciben los profesionales de paliativos las necesidades espirituales del paciente al final de la vida? Medicina Paliativa, 15, 225 –237.
Verbalized desire for death or euthanasia Pearlman, R., Hsu, C., Starks, H., et al. (2005). Motivations for physician-assisted suicide: Patient and family voices. Journal of General Internal Medicine, 20, 234 –239. Portenoy, R., Thaler, H.T., Kornblith, A.B., et al. (1994). The Memorial Symptom Assessment Scale: An instrument for evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A, 1326– 1336. Rosenfeld, B., Breitbart, W., Stein, K., et al. (1999). Measuring desire for death among patients with HIV/ AIDS: The Schedule of Attitudes Toward Hastened Death. American Journal of Psychiatry, 156, 94–100. Rousseau, P. (2000). The art of oncology: When the tumor is not the target: Spirituality and the dying patient. Journal of Clinical Oncology, 18, 2000– 2002. Sanz Ortiz, J. & Bild, R.E. (1985). The patient with a terminal illness. The medical untouchables. Medicina Clinica (Barcelona), 84, 691– 693. Selby, D., Cascella, A., Gardiner, K., et al. (2010). A single set of numerical cutpoints to define moderate and severe symptoms for the Edmonton Symptom Assessment System. Journal of Pain and Symptom Management, 39, 241 –249. Serra-Prat, M., Nabal, M., Santacruz, V., et al. (2004). Traduccio´n, adaptacio´n y validacio´n de la Palliative Care Outcome Scale al espan˜ol. Medicina Clinica (Barcelona), 123, 406 –412.
303 Shim, E.J. & Hahm, B.J. (2011). Anxiety, helplessness/ hopelessness and “desire for hastened death” in Korean cancer patients. European Journal of Cancer Care, 20, 395 –402. Tejero, A., Guimera´, E.M., Farre´, J.M., et al. (1986). Uso clı´nico del HADS (Hospital Anxiety an Depression Scale) en poblacio´n psiquia´trica: Un estudio de su sensibilidad, fiabilidad y validez. Revista Departamento Psiquiatrı´a. Facultad de Medicina de Barcelona, 13, 233–238. Teunissen, S.C., de Graeff, A., Voest, E.E., et al. (2007). Are anxiety and depressed mood related to physical symptom burden? A study in hospitalized advanced cancer patients. Palliative Medicine, 21, 341 –346. Wilson, K.G., Scott, J.F., Graham, I.D., et al. (2000). Attitudes of terminally ill patients towards euthanasia and physician-assisted suicide. Archives of Internal Medicine, 160, 2454– 2460. Wilson, K.G., Chochinov, H.M., McPherson, C.J., et al. (2007). Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychology, 26, 314 –323. Zigmond, A.S. & Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361 –370. Zuehlke, T. & Watkins, J. (1975). The use of psychotherapy with dying patients: An exploratory study. Journal of Clinical Psychology, 31, 729– 732.
Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care
¨ ELL, M.D., ADELAIDA RAMOS, R.N., TANIA ZERTUCHE, ERNEST GU ANTONIO PASCUAL, M.D., PH.D.
M.D., AND
Palliative Care Unit, Oncology Department, Hospital de la Santa Creu i Sant Pau, Universitat Auto`noma de Barcelona, Barcelona, Spain (RECEIVED December 13, 2013; ACCEPTED January 6, 2014)
ABSTRACT Objective: We aimed to address the prevalence of desire-to-die statements (DDSs) among terminally ill cancer patients in an acute palliative care unit. We also intended to compare the underlying differences between those patients who make desire-to-die comments (DDCs) and those who make desire-for-euthanasia comments (EUCs). Method: We conducted a one-year cross-sectional prospective study in all patients receiving palliative care who had made a DDC or EUC. At inclusion, we evaluated symptom intensity, anxiety and depression, and conducted a semistructured interview regarding the reasons for these comments. Results: Of the 701 patients attended to during the study period, 69 (9.8%; IC95% 7.7 –12.3) made a DDS: 51 (7.3%) a DDC, and 18 (2.5%) an EUC. Using Edmonton Symptom Assessment Scale (ESAS) DDC group showed higher percentage of moderate-severe symptoms (ESAS . 4) for well-being (91 vs. 25%; p ¼ 0.001), depression (67 vs. 25%; p ¼ 0.055), and anxiety (52 vs. 13%; p ¼ 0.060) than EUC group. EUC patients also considered themselves less spiritual (44 vs. 84%; p ¼ 0.034). The single most common reason for a DDS was pain or physical suffering, though most of the reasons given were nonphysical. Significance of results: Almost 10% of the population receiving specific oncological palliative care made a DDC (7.3%) or EUC (2.5%). The worst well-being score was lower in the EUC group. The reasons for both a DDC and EUC were mainly nonphysical. We find that emotional and spiritual issues should be identified and effectively addressed when responding to a DDS in terminally ill cancer patients. KEYWORDS: Attitude toward death, Euthanasia, Palliative care
INTRODUCTION
on external factors, and the problem of its conceptualization (Monforte-Royo et al., 2011). Research studies regarding this type of statement mainly address questionnaires among patients or health personnel in hypothetical situations (Johansen et al., 2005; Hudson et al., 2006; Karlsson et al., 2012). In a recent systematic review (Hudson et al., 2006) of 35 studies regarding DDSs, only 8 included patients had a current DDS and only 3 of the studies focused on advanced cancer patients (Kelly et al., 2003a; 2003b; Coyle & Sculco, 2004; Mak & Elwyn, 2005). The philosophy of palliative care is holistic. It considers physical, emotional, and spiritual concerns, focusing on quality of life, relief of suffering, and
Desire-to-die statements (DDSs) are not uncommon among terminally ill cancer patients (Hendry et al., 2013). DDSs cover a wide range of patients’ wishes, such as a desire for death to occur, a wish to hasten death, and requests for euthanasia or physician-assisted suicide. Determining the epidemiology of this construct is not an easy task due to the very nature of the phenomenon, its variability and dependency Address correspondence and reprint requests to: Ernest Gu¨ell, Palliative Care Unit, Oncology Department, Hospital de la Santa Creu i Sant Pau, Universitat Auto`noma de Barcelona, Barcelona, Spain. E-mail: [email protected]
295
296 humanism in the patient – doctor relationship, thus dignifying the process of death (Sanz Ortiz & Bild, 1985; Foley, 1997). Nevertheless, a considerable percentage (8.5 to 17%) of advanced cancer patients receiving palliative care still make a DDS (Chochinov et al., 1995; Rosenfeld et al., 1999; Breitbart et al., 2000; Kelly et al., 2003a). Many factors have been associated with a DDS— predominantly depression, hopelessness (with or without depression), anxiety, poor social support (especially being widowed), low functional capacity, elevated pain intensity, and other physical symptoms (Rosenfeld et al., 1999; Breitbart et al., 2000; Coyle & Sculco 2004; Shim & Hahm, 2011; Julia˜o et al., 2013). Factors such as poor spiritual well-being (Brady et al., 1999), decreased quality of life (Cohen et al., 1995), and perception of being a burden to others are also referred to often. On some occasions, however, patients with a DDS exhibit none of the above (Chochinov et al., 1995). In several qualitative studies and systematic reviews (Bascom & Tolle, 2002; Pearlman et al., 2005; Mak & Elwyn, 2005; Wilson et al., 2007), there are five main reasons for having a DDS: (1) loss of meaning, sense, or dignity in continuing to live when there is the certainty of a progressive functional limitation and health deterioration with a subsequent fatal ending; (2) loss of identity secondary to physical, personality, emotional, and capacity changes; (3) perception of current or future self-suffering (pain or other symptoms, hopelessness or loss of enjoyment of life) or others’ suffering: (4) consideration that it is a compassionate act that facilitates a smooth death, avoiding worsening and greater suffering than death itself; and (5) preparedness and willingness to die, retaining the autonomy to choose how and when they will die. Spirituality in terminally ill patients (Brady et al., 1999; Breitbart, 2002; Benito et al., 2008) includes faith in a superior power, the meaning of one’s own life (Karasu, 1999), and the concepts of love, reconciliation, and forgiveness (Kuhn, 1988). Patients who consider themselves spiritual show greater tolerance to severe physical symptoms, less hopelessness, and less depression than patients who do not (Breitbart et al., 2000). In one semistructured interview about attitudes toward legalization of euthanasia or assisted suicide conducted in patients at a palliative care unit, 5.8% stated they would ask for it if it were legal (Wilson et al., 2007). These patients had less intense religious beliefs, lower performance status, a higher symptom burden, and higher prevalence of depressive mood. In our exploratory study, focused on the Mediterranean nation of Spain, rather than using specific screening tests available in the English literature, we only included patients who made a spontaneous
Gu¨ell
desire to die statement to any member of the palliative care unit. A secondary aim was to describe the demographic, symptomatic, emotional, and spiritual issues in this population and to determine possible differences regarding patients who made desire-todie comments (DDCs) and those who made desirefor-euthanasia comments (EUCs). METHODS From October of 2007 to October of 2008, a total of 701 patients were cared for in the palliative care unit at Hospital Sant Pau, a tertiary university hospital in Barcelona, Spain. They were treated by a highly specialized team of physicians, nurses, and psychologists. The palliative care unit admits ambulatory patients and referrals from all the Hospital Sant Pau departments. In accordance with the findings of Higginson and Costantini (2002), communication between professionals in our palliative care unit could be classified as “correct messages between key professionals with minor inaccuracies and delays between others.” We conducted a one-year cross-sectional prospective study that included all patients in the palliative care unit who made any spontaneous comment to any member of the team representing a generic DDS. Daily, at each morning session, any new DDS was classified by consensus as a DDC or EUC. In the EUC group, we included only those patients who made an unmistakable, clear statement of desire for euthanasia or assisted suicide. All other DDSs were classified as a DDC. Latency (time between entering the palliative care program until the statement) and survival (time from statement to death) were calculated. We prospectively followed each patient with a DDS, recording whether or not the DDS persisted, the place of death, and the need for sedation. At inclusion we recorded demographic and clinical data; functional capacity employing the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale (Oken et al., 1982) and the Barthel Index (Mahoney & Barthel, 1965; Bazta´n et al., 1993); and cognitive function with the Mini-Mental State Examination (MEC, Spanish version) (Folstein et al., 1975; Lobo et al., 1999). We also employed the Support Team Assessment Schedule (STAS) (Higginson, 1993; Higginson & McCarthy, 1993) and measured the team’s consensus about patient knowledge concerning level of illness (Ellershaw et al., 1995) and acceptance (Ku¨bler-Ross, 1973). Patients with adequate physical and cognitive status and who had no communication barriers were asked to evaluate the intensity of symptoms using the Edmonton Symptoms Assessment Scale (ESAS) (Bruera
297
Verbalized desire for death or euthanasia
et al., 1991), depression and anxiety with the Hospital Anxiety and Depression Scale (HADS) as a screening test (Zigmond & Snaith, 1983; Tejero et al., 1986; Herrero et al., 2003), and the value of their life using the Palliative Outcome Scale (POS) (Hearn & Higginson, 1999; Serra-Prat et al., 2004). Each of these measures has been widely used and validated in terminally ill populations. A semistructured interview was conducted to explore the patients’ reasons for making a DDS, their previous and current views toward euthanasia, their religious beliefs, and to elicit a spiritual self-assessment (Brady et al., 1999; Breitbart, 2002; Paya´s et al., 2008). Ours was an exploratory study to describe the prevalence of DDSs in a palliative care unit. We also analyzed data looking for differences between the DDC and EUC groups. For descriptive analysis we utilized the number of cases and their percentage for categorical variables, and the median and
interquartile range (IQR) for quantitative and ordinal variables. A Fisher’s exact test (or likelihood ratio when the contingency table was larger than two by two) was employed to compare categorical variables, and a Mann –Whitney U test was applied to compare quantitative and ordinal variables. Unless specified otherwise, inferences refer to the comparison between the DDC and EUC groups with a significance according to a Cronbach’s alpha a equal to 0.05. We employed an IBM –SPSS statistical package (version 21.0) to analyze the data. The study was approved by the ethics committee at our center, and a written informed consent was obtained from all participants. RESULTS Of the 701 patients cared for at our palliative care unit over the study period, 69 (9.8%; IC95% 7.7 – 12.3) verbalized a DDS: 51 made a DDC (7.3%), and
Table 1. Characteristics of patients with a DDS (DDC and EUC) DDS n ¼ 69 Age Median (IQR) PS Median (IQR) Barthel Median (IQR) Gender Men Women Type of cancer Lung Colorectal Urinary tract Breast Prostate Head and neck Lymphoma Unknown origin Stomach Pancreas Hepatocarcinoma Cervix Other Metastases Yes No Social status Married or cohabiting Widowed Separated/divorced Single Living conditions Living with others Living alone
75 3 30 n
(63.5–80.5) (3–4) (10– 65) (%)
39 (56.5) 30 (43.5)
DDC n ¼ 51
EUC n ¼ 18
p
74 (62– 81) 3 (3 –4) 30 (10– 70) n (%)
76 (72.5–80.3) 3 (3– 4) 37.5 (20–50) n (%)
0.289 0.778 0.556
28 (54.9) 23 (45.1)
11 (61.1) 7 (38.9)
0.784
(24.6) (14.5) (7.2) (5.8) (5.8) (5.8) (5.8) (5.8) (4.3) (2.9) (2.9) (2.9) (11.6)
9 (17.6) 8 (15.7) 4 (7.8) 4 (7.8) 4 (7.8) 4 (7.8) 3 (5.9) 3 (5.9) 3 (5.9) 1 (2.0) 0 (0.0) 1 (2.0) 7 (13.8)
8 (44.4) 2 (11.0) 1 (5.6) 0 (0.0) 0 (0.0) 0 (0.0) 1 (5.6) 1 (5.6) 0 (0.0) 1 (5.6) 2 (11.0) 1 (5.6) 1 (5.6)
0.097
56 (81.2) 13 (18.8)
39 (76.5) 12 (23.5)
17 (94.4) 1 (5.6)
0.160
32 18 10 9
(46.4) (26.1) (14.5) (13.0)
25 (49.0) 14 (27.5) 5 (9.8) 7 (13.7)
7 (38.9) 4 (22.2) 5 (27.8) 2 (11.1)
0.374
52 (75.4) 17 (24.6)
41 (80.4) 10 (19.6)
11 (61.1) 7 (38.9)
0.121
17 10 5 4 4 4 4 4 3 2 2 2 8
IQR ¼ interquartile range; PS ¼ performance status; DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment.
298
Gu¨ell
Table 2. Symptom prevalence and mean intensity (STAS) Symptom
STAS .0 (%)
Asthenia Well-being Anorexia Dry mouth Depression Somnolence Anxiety Pain Dyspnea Nausea
99 99 90 88 88 80 77 72 52 26
DDS Mean (SD) 2.6 2.3 2.1 2.0 2.0 1.3 1.4 1.3 0.8 0.3
(0.8) (0.9) (1.1) (1.0) (1.0) (0.8) (1.1) (1.0) (1.0) (0.7)
DDC Mean (SD)
EUC Mean (SD)
p
2.6 (0.8) 2.4 (0.9) 2.1 (1.1) 1.9 (0.9) 2.0 (0.9) 1.3 (0.9) 1.4 (1.0) 1.3 (1.0) 0.8 (0.9) 0.4 (0.7)
2.6 (0.6) 2.3 (1.0) 2.2 (0.9) 2.1 (1.2) 1.6 (1.2) 1.1 (0.8) 1.2 (1.1) 1.1 (0.9) 0.8 (1.0) 0.1 (0.3)
0.818 0.589 0.782 0.405 0.168 0.417 0.302 0.354 0.821 0.111
STAS ¼ Support Team Assessment Schedule; DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desireto-die comment; EUC ¼ patients with euthanasia comment.
18 made an EUC (2.5%). DDCs and EUCs continued until death in 88% (45/51) and 94% (17/18), respectively. A small percentage (4%; 2/51) of patients with an initial DDC later made an EUC. Table 1 shows patients’ main characteristics. The median age was 75 (IQR 63.5 – 80.5) years. Median survival and latency were 10 (IQR 4 – 10) and 6 (IQR 1 – 56) days, respectively; in 16 of 69 cases (23%), the statement was made at the first meeting in the palliative care unit. The team evaluation (STAS) showed that the most intense symptoms were, in order of frequency, asthenia, anorexia, dry mouth, depression, and decreased well-being (Table 2). According to the palliative care assessment tool (Ellershaw et al., 1995), 36 of the 69 (52%) patients were fully aware (4 on a 0 – 4 scale) of their diagnosis and prognosis, and 27 (39%) had limited insight about the prognosis (3 on a 0 – 4 scale). The remaining
six patients scored lower than 3. The EUC group showed greater insight into their illness than the DDC group (median 4 vs. 3, p ¼ 0.039). About half the patients in both groups died in the palliative care unit, most in a state of acceptance according to the Ku¨bler-Ross model. Table 3 shows this and other conditions at death. Some 13 of the 69 (19%) patients required palliative sedation. The percentage of sedation tended to be higher in the EUC group (33 vs. 14%, p ¼ 0.086). The drug used for sedation was midazolam in all cases (median dose 75, IQR 60– 120 mg/day). Of the 69 patients, 34 were able to partake in an interview that included reasons for their DDS, religious beliefs, self-spiritual assessment, and the ESAS and HADS scales. Survival in these patients was higher than those who do not were able to partake in the interview (13 vs. 8 days; p ¼ 0.023). Of the 35 patients excluded, 34 presented at least one
Table 3. Final conditions at death DDS n (%)
DDC n (%)
EUC n (%)
p
Place of death
PCU HFI OHU HOM
31 15 13 10
(45) (22) (19) (14)
7 (39) 7 (39) 2 (11) 2 (11)
24 (47) 8 (16) 11 (22) 8 (16)
0.142
Acceptance
Yes No
44 (64) 25 (36)
12 (67) 6 (33)
32 (63) 19 (37)
0.538
Sedation
Yes No
13 (19) 56 (81)
6 (33) 12 (67)
7 (14) 44 (86)
0.086
Reasons for sedation
Agitation Existential distress Dyspnea
8 (61) 4 (31) 1 (8)
3 (50) 2 (33) 1 (17)
5 (71) 2 (29) 0 (0)
0.158
DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment; PCU ¼ palliative care unit; HFI ¼ health facility; OHU ¼ other hospital units; HOM ¼ home.
299
Verbalized desire for death or euthanasia
Fig. 1. Patient recruitment flowchart.
exclusion criterion (extremely deteriorated physical state – 25– , altered MEC – 22– , or communication barriers – 13 – ). The remaining patient refused to participate in the interview. Figure 1 presents a schematic for how patients were recruited. Symptom intensity using the ESAS was conducted in 29 (21 DDC, 8 EUC) of the 34 patients. It was not performed in the other five due to misunderstanding of the tool. Of the 10 symptoms explored using the ESAS, we found that seven had some degree of intensity (ESAS .0) in more than 75% of patients (see Table 4). The median baseline ESAS well-being was worse in the DDC group than in the EUC group (7 vs. 3, p ¼ 0.001). In both groups, symptom intensity was moderate or severe (ESAS .4, as shown by Selby et al., 2010) in asthenia, dry mouth, decreased wellbeing, anorexia, and depression in more than half
the patients. A baseline ESAS score above 4 was worse in the DDC group than in the EUC group for well-being (91 vs. 25%; p ¼ 0.001) and tended to be worse for depression (67 vs. 25%; p ¼ 0.055) and anxiety (52 vs. 13%; p ¼ 0.060). Some 18 of the 34 patients (53%) scored higher than 11 on the HADS depression subscale, and 5 (15%) had borderline depression scores (8 –10). Three patients (9%) scored above 11 on the HADS anxiety subscale, and 9 (27%) had borderline anxiety scores (8 –10). The median scores were 11 (range 1–21) and 6 (range 0 –14) for both subscales, respectively. No differences between the DDC or EUC groups were found on any HADS subscale. Using one question from the palliative outcome scale (which ranges from 0, meaning “all the time”, to 4, meaning “no, not at all”), we asked patients if they felt life was worth living. The EUC group scored 3 and 4 more frequently than the DDC group (78 vs. 32%: p ¼ 0.023). Twenty of the 34 patients (59%) considered themselves religious (95% Catholic, 20% other regular practitioners); the EUC group tended to be less religious than the DDC group (33 vs. 68%; p ¼ 0.079). We also found that 25 patients (74%) considered themselves spiritual, this percentage being significantly lower in the EUC group (44 vs. 84%; p ¼ 0.034). The most frequently cited reason for a DDS was “pain or physical suffering,” but, taken together, nonphysical reasons predominated (Table 5). Patients gave a median of three reasons (range 1–9) to justify the DDS. The item “retaining autonomy to choose how and when to die/I will die” was the only statistically significant item, showing a higher percentage in the EUC group (33 vs. 4%, p ¼ 0.048).
Table 4. Symptom prevalence (ESAS . 0 and ESAS . 4); ESAS mean and median scores according to DDC or EUC ESAS Symptom
ESAS .0 (%)
ESAS .4 (%)
Asthenia Dry mouth Well-being Anorexia Depression Anxiety Pain Somnolence Dyspnea Nausea
97 93 93 79 76 62 83 79 59 24
79 76 72 69 55 41 38 31 24 10
ESAS: Mean (Median) DDS (n¼29)
DDC (n ¼ 21)
EUC (n ¼ 8)
p
6.17 (7) 6.52 (7) 5.59 (6) 5.28 (5) 5.03 (5) 2.97 (3) 3.62 (4) 3.66 (4) 2.45 (2) 1.07 (0)
6.52 (7) 5.90 (6) 6.52 (7) 5.24 (5) 5.57 (7) 3.19 (5) 3.67 (4) 3.86 (4) 2.76 (3) 1.43 (0)
5.25 (6) 8.13 (8) 3.12 (3) 5.38 (5) 3.62 (2.5) 2.38 (3) 3.50 (3) 3.12 (3.5) 1.62 (0) 0.12 (0)
0.301 0.047 0.001 0.943 0.301 0.457 0.943 0.582 0.279 0.429
ESAS ¼ Edmonton Symptom Assessment Scale; DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment.
300
Gu¨ell
Table 5. Reasons for DDS (DDC or EUC) (n ¼ 34) Number of Times Stated
Pain or physical suffering Understanding there is no point in continuing to live. Loss of autonomy Fear of future suffering Being a burden General discomfort Being tired of living Loss of independence Loss of meaning of own life Depending on others for care Controlling circumstances of own death Being ready to die Loss of corporal functions Not having any nice moments Poor quality of life Loss of dignity “Other reasons”
DDS n
DDC n (%)
EUC n (%)
p
15 12
12 (48) 8 (32)
3 (33) 4 (44)
0.697 0.687
12 11 11 11 9 8 8 6
10 (40) 9 (36) 10 (40) 8 (32) 8 (32) 6 (24) 7 (28) 6 (24)
2 (22) 2 (22) 1 (11) 3 (33) 1 (11) 2 (22) 1 (11) 0 (0)
0.439 0.682 0.214 1.000 0.386 1.000 0.403 0.162
4
1 (4) 3 (33)
0.048
3 2 2
2 (8) 2 (8) 2 (8)
1 (11) 1.000 0 (0) 1.000 0 (0) 1.000
2 1 14
1 (4) 0 (0)
1 (11) 0.465 1 (11) 0.265
DDS ¼ patients with a desire-to-die statement; DDC ¼ patients with desire-to-die comment; EUC ¼ patients with euthanasia comment.
Patients generally considered that their illness did not change their former view on euthanasia (27/34; 79%); five of the seven who did alter their opinion moved toward a favorable one. Within the euthanasia debate, 21 of 34 patients (62%) were in favor, 14 of whom (67%) stated they would initiate formalities if it were legal, representing 2% of the cared-for population. DISCUSSION Patients were included in the present study on the basis of any spontaneous comment made to any member of the palliative care unit concerning a desire to die or desire for euthanasia. We found that the prevalence of desire-to-die statements using this single inclusion criterion was similar to that in previous studies using screening scales (Chochinov et al., 1995; Foley, 1997; Emanuel et al., 2000; Wilson et al., 2000; Ganzini et al., 2000; Coyle & Sculco, 2004), indicating that verbally expressing a wish to die is a highly sensitive matter. Indeed, several considerations suggest that the prevalence in our study could even have been underestimated: (1) we did not use a screening process, so DDSs in some patients
were likely missed; (2) DDSs are often stated exclusively to family members (Morita et al., 2004); (3) DDSs are not necessarily verbalized in our setting as a patient may consider this futile given the illegal status of euthanasia in Spain; and (4) DDSs in patients transferred to other healthcare centers are unknown. The percentage of moderate to severe symptoms (ESAS .4) was similar to that in previous DDS studies (Chochinov et al., 1995; Rosenfeld et al., 1999; Kelly et al., 2003a; 2003b). Surprisingly, we found that physical, emotional, and spiritual concerns differed between desire-to-die comments (DDCs) and desire-for-euthanasia comments (EUCs) patients. Decreased well-being was higher in the DDC group than in the EUC group. Depression and anxiety tended to be higher in the DDC group, but this was not statistically significant, probably due to the sample size (29 evaluable patients). This tendency suggests that reasons other than physical or emotional ones may have triggered the EUC (Levene & Parker, 2011). These differences, however, were not detected using the HADS –D or HADS– A. This poor concordance between depression and anxiety measured by the ESAS and HADS subscales has been reported previously in advanced cancer patients (Teunissen et al., 2007). The HADS scores found in our survey are similar to those in other studies in advanced cancer patients with no specific DDS (Holtom & Barraclough, 2000). Our findings support those of other authors who have shown that a high percentage of patients with a DDS consider themselves spiritual. Some authors consider that spiritual assistance guidelines should be implemented as part of standard palliative practice as it has been found that they increase the likelihood of a serene death (Rousseau, 2000). Along these lines, logotherapy (Zuehlke & Watkins, 1975) may be considered one of the first reported approaches to spirituality in advanced cancer patients. The predominance of existential aspects explains the recent proposal to tailor the model of care to individual patients (Mak & Elwyn, 2005). Such a talking-death model could be useful rather than stressful (Emanuel et al., 2004), and should consider expectations and fears, palliative care options, personal objectives, aspects regarding family and carers, physical and emotional relief, meaning of life, quality of life, and depressive symptoms (Bascom & Tolle, 2002). A novel intervention called “meaning-centered psychotherapy” (Breitbart et al., 2010; 2012) was recently implemented in a pilot randomized controlled trial with advanced cancer patients. The findings showed that spiritual well-being and sense of meaning and anxiety improved while the desire for death decreased. However, patients included in Breitbart’s
301
Verbalized desire for death or euthanasia
study differed from ours: recruitment was ambulatory, Karnofsky performance scores were higher, and survival was longer than eight weeks. Another intervention, the dignity model and dignity therapy (Chochinov et al., 2005), employs holistic and individualized approaches that foster improvement in the will to live in terminally ill patients. Unfortunately, some patients in our study were not fully aware of their diagnosis and prognosis, a necessary item for dignity therapy. Furthermore, to our knowledge, there is no extensive specific training in dignity therapy in Spain. We believe that qualitative studies are needed to better understand the great diversity of reasons behind a DDS (Kelly et al., 2003a; Mak & Elwyn, 2003; 2005; Bharucha et al., 2003; Coyle & Sculco, 2004; Pearlman et al., 2005). It is of particular interest that, as in two previous studies (Portenoy et al., 1994; Chochinov et al., 1999), we found that most reasons given were not related to symptoms. And, interestingly, the only reason that was statistically different between our EUC and DDC patients was that the former wished to retain their autonomy concerning how and when they would die. Regarding the euthanasia debate, most of our DDS patients (62%) were in favor of its legalization, and they stated that they had not changed their opinion since the onset of their illness. This figure is similar to that found in a study within the general population in Spain (OCU, 2000) in which 75% of participants were in favor of legalizing euthanasia. We believe it is also noteworthy that 28% of the DDC patients in our study stated that they would apply for euthanasia if it were legal. This suggests that this subgroup understood that there was no point to requesting euthanasia while it remained illegal. Our study has several limitations. First, patients who had a desire for hastened death or euthanasia and did not or could not (due to physical factors) verbally express these desires were missed. Furthermore, some expressions of these desires may not have been witnessed by staff. Second, as there was no control group, we cannot compare symptoms with patients who did not make a DDS. Third, the sample size was not large enough to detect all statistical differences between the DDC and EUC groups, but multiple correlations were employed, the reason being that it was originally designed to investigate the prevalence of DDSs. Fourth, as our sample was recruited from a palliative care unit that attends to patients referred from all hospital departments, it may not be generalizable to less extensive models of palliative care. Promoting palliative care and advocating legalization of voluntary euthanasia are seen by many as opposing forces when in fact they share some common
values (Hurst & Mauron, 2006). Our findings further confirm the need for an emotional and spiritual approach in patients who make a DDC or EUC, emphasizing their singular lived experiences and individual concepts of autonomy and beneficence. ACKNOWLEDGMENTS This study received a research grant from the Victor Grı´fols Foundation.
CONFLICTS OF INTEREST The authors state that they have no conflicts of interest to declare. REFERENCES Bascom, P. & Tolle, S. (2002). Responding to requests for physician-assisted suicide. The Journal of the American Medical Association, 288, 91–98. Bazta´n, J.J., Pe´rez, J., Alarco´n, T., et al. (1993). I´ndice de Barthel: Instrumento valido para la valoracio´n funcional de pacientes con enfermedad cerebrovascular. Revista Espan˜ola de Geriatrı´a y Gerontologı´a, 28, 32–40. Benito, E., Barbero, J. & Paya´s, A. (2008). El acompan˜amiento espiritual en cuidados paliativos: Una introduccio´n y una propuesta. Available from http:// hospicemadreteresa.org.ar/esp/wp-content/uploads/ 2011/11/guia-espiritual-secpal.pdf. Bharucha, A., Pearlman, R., Back, A., et al. (2003). The pursuit of physician-assisted suicide: Role of psychiatric factors. Journal of Palliative Medicine, 6, 873 –883. Brady, M.J., Peterman, A.H., Fitchett, G., et al. (1999). A case for including spirituality in quality of life measurement in oncology. Psycho-Oncology, 8, 417– 428. Breitbart, W. (2002). Spirituality and meaning in supportive care: Spirituality and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer, 10, 272 –280. Breitbart, W., Rosenfeld, B., Pessin, H., et al. (2000). Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. The Journal of the American Medical Association, 284, 2907–2911. Breitbart, W., Rosenfeld, B., Gibson, C., et al. (2010). Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology, 19, 21–28. Breitbart, W., Poppito, S., Rosenfeld, B., et al. (2012). Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology, 30, 1304 –1399. Bruera, E., Kuehn, N., Miller, M.J., et al. (1991). The Edmonton Symptom Assessment System: A simple method for the assessment of palliative care. Journal of Palliative Care, 7, 6 –9. Chochinov, H.M., Wilson, K.G., Enns, M., et al. (1995). Desire for death in the terminally ill. American Journal of Psychiatry, 152, 1185– 1191. Chochinov, H.M., Tataryn, D., Clinch, J.J., et al. (1999). Will to live in the terminally ill. Lancet, 354, 816 –819. Chochinov, H.M., Hack, T., Hassard, T., et al. (2005). Dignity therapy: A novel psychotherapeutic intervention
302 for patients near the end of life. Journal of Clinical Oncology, 23, 5520– 5525. Cohen, S.R., Mount, B.F., Strobel, M.G., et al. (1995). The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliative Medicine, 9, 207– 219. Coyle, N. & Sculco, L. (2004). Expressed desire for hastened death in seven patients living with advanced cancer: A phenomenological inquiry. Oncology Nursing Forum, 31, 699 –708. Ellershaw, J.E., Peat, S.J. & Boys, L.C. (1995). Assessing the effectiveness of a hospital palliative care team. Palliative Medicine, 9, 145 –152. Emanuel, E.J., Fairclough, D.L. & Emanuel, L.I. (2000). Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. The Journal of the American Medical Association, 284, 2460– 2468. Emanuel, E.J., Fairclough, D., Wolfe, P., et al. (2004). Talking with terminally ill patients and their caregivers about death, dying, and bereavement. Is it stressful? Is it helpful? Archives of Internal Medicine, 164, 1999– 2004. Foley, K. (1997). Competent care for the dying instead of physician-assisted suicide. The New England Journal of Medicine, 336, 54–58. Folstein, M.F., Folstein, S.E. & McHugh, P.R. (1975). “Minimental state”: A practical method of grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189– 198. Ganzini, L., Nelson, H.D., Schmidt, T.A., et al. (2000). Physicians’ experiences with the Oregon Death with Dignity Act. The New England Journal of Medicine, 342, 557– 563. Hearn, J. & Higginson, I.J. (1999). Development and validation of a core outcome measure for palliative care: The palliative care outcome scale. Palliative care core audit project advisory group. Quality in Health Care, 8, 219– 227. Hendry, M., Pasterfield, D., Lewis, R., et al. (2013). Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying. Palliative Medicine, 27, 13– 26. Herrero, M.J., Blanch, J., Peri, J.M., et al. (2003). A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General Hospital Psychiatry 25, 277 –283. Higginson, I.J. (1993). Audit methods: A community schedule. In Clinical audit in palliative care. I.J. Higginson (ed.), pp. 34– 47. Oxford: Radcliffe Medical Press. Higginson, I.J. & Costantini, M. (2002). Communication in end-of-life cancer care: A comparison of team assessments in three European countries. Journal of Clinical Oncology, 20, 3674–3682. Higginson, I.J. & McCarthy, M. (1993). Validity of the support team assessment schedule: Do staffs’ ratings reflect those made by patients or their families? Palliative Medicine, 7, 219– 228. Holtom, N. & Barraclough, J. (2000). Is the Hospital Anxiety and Depression Scale (HADS) useful in assessing depression in palliative care? Palliative Medicine, 14, 219 –220. Hudson, P., Kristjanson, L., Ashby, M., et al. (2006). Desire for hastened death in patients with advanced disease
Gu¨ell and the evidence base of clinical guidelines: A systematic review. Palliative Medicine, 20, 693– 701. Hurst, S. & Mauron, A. (2006). The ethics of palliative care and euthanasia: Exploring common values. Palliative Medicine, 20, 107 –12. Johansen, S., Holen, J.C., Kaasa, S., et al. (2005). Attitudes towards, and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit. Palliative Medicine, 16, 454– 460. Julia˜o, M., Barbosa, A., Oliveira, F., et al. (2013). Prevalence and factors associated with desire for death in patients with advanced disease: Results from a Portuguese cross-sectional study. Psychosomatics, 54, 451–457. Karasu, T.B. (1999). Spiritual psychotherapy. American Journal of Psychotherapy, 53, 143 –162. Karlsson, M., Milber, A. & Strang, P. (2012). Dying cancer patients’ own opinions on euthanasia: An expression of autonomy? A qualitative study. Palliative Medicine, 26, 34–42. Kelly, B., Burnett, D., Pelusi, S., et al. (2003a). Factors associated with the wish to hasten death: A study of patients with terminal illness. Psychological Medicine, 33, 75–81. Kelly, B., Burnett, P., Badger, S., et al. (2003b). Doctors and their patients: A context for understanding the wish to hasten death. Psycho-Oncology, 12, 375– 184. Ku¨bler-Ross, E. (1973). On death and dying. Florence, KY: Routledge. Kuhn, C.C. (1988). A spiritual inventory of the medically ill patient. Psychiatric Medicine, 6, 87–100. Levene, I. & Parker, M. (2011). Prevalence of depression in granted and refused requests for euthanasia and assisted suicide: A systematic review. Journal of Medical Ethics, 37, 205– 211. Lobo, A., Sanz, P., Marcos, G., et al. (1999). Revalidacio´n y normalizacio´n del Mini-Examen Cognoscitivo (primera versio´n en castellano del Mini-Mental Status Examination) en la poblacio´n general geria´trica. Medicina Clinica (Barcelona), 112, 767 –774. Mahoney, F.I. & Barthel, D.W. (1965). Functional evaluation: The Barthel Index. Maryland State Medical Journal, 14, 61– 65. Mak, Y. & Elwyn, G. (2003). Use of hermeneutic research in understanding the meaning of desire for euthanasia. Palliative Medicine, 17, 395– 402. Mak, Y. & Elwyn, G. (2005). Voices of the terminally ill: Uncovering the meaning of desire for euthanasia. Palliative Medicine, 19, 343 –50. Monforte-Royo, C., Villavicencio-Cha´vez, C., Toma´sSa´bado, J., et al. (2011). The wish to hasten death: A review of clinical studies. Pyscho-Oncology, 20, 795– 804. Morita, T., Sakaguchi, Y., Hirai, K., et al. (2004). Desire for death and requests to hasten death of Japanese terminally ill cancer patients receiving specialized inpatient palliative care. Journal of Pain and Symptom Management, 27, 44– 52. Oken, M.M., Creech, R.H., Tormey, D.C., et al. (1982). Toxicity and response criteria of the Eastern Cooperative Oncology Group. American Journal of Clinical Oncology, 5, 649 –655. Organizacio´n de Consumidores y Usuarios (OCU) (2000). Calidad de vida en los enfermos terminales. Barcelona: OCU. Paya´s, A., Barbero, J., Baye´s, R., et al. (2008). ¿Co´mo perciben los profesionales de paliativos las necesidades espirituales del paciente al final de la vida? Medicina Paliativa, 15, 225 –237.
Verbalized desire for death or euthanasia Pearlman, R., Hsu, C., Starks, H., et al. (2005). Motivations for physician-assisted suicide: Patient and family voices. Journal of General Internal Medicine, 20, 234 –239. Portenoy, R., Thaler, H.T., Kornblith, A.B., et al. (1994). The Memorial Symptom Assessment Scale: An instrument for evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A, 1326– 1336. Rosenfeld, B., Breitbart, W., Stein, K., et al. (1999). Measuring desire for death among patients with HIV/ AIDS: The Schedule of Attitudes Toward Hastened Death. American Journal of Psychiatry, 156, 94–100. Rousseau, P. (2000). The art of oncology: When the tumor is not the target: Spirituality and the dying patient. Journal of Clinical Oncology, 18, 2000– 2002. Sanz Ortiz, J. & Bild, R.E. (1985). The patient with a terminal illness. The medical untouchables. Medicina Clinica (Barcelona), 84, 691– 693. Selby, D., Cascella, A., Gardiner, K., et al. (2010). A single set of numerical cutpoints to define moderate and severe symptoms for the Edmonton Symptom Assessment System. Journal of Pain and Symptom Management, 39, 241 –249. Serra-Prat, M., Nabal, M., Santacruz, V., et al. (2004). Traduccio´n, adaptacio´n y validacio´n de la Palliative Care Outcome Scale al espan˜ol. Medicina Clinica (Barcelona), 123, 406 –412.
303 Shim, E.J. & Hahm, B.J. (2011). Anxiety, helplessness/ hopelessness and “desire for hastened death” in Korean cancer patients. European Journal of Cancer Care, 20, 395 –402. Tejero, A., Guimera´, E.M., Farre´, J.M., et al. (1986). Uso clı´nico del HADS (Hospital Anxiety an Depression Scale) en poblacio´n psiquia´trica: Un estudio de su sensibilidad, fiabilidad y validez. Revista Departamento Psiquiatrı´a. Facultad de Medicina de Barcelona, 13, 233–238. Teunissen, S.C., de Graeff, A., Voest, E.E., et al. (2007). Are anxiety and depressed mood related to physical symptom burden? A study in hospitalized advanced cancer patients. Palliative Medicine, 21, 341 –346. Wilson, K.G., Scott, J.F., Graham, I.D., et al. (2000). Attitudes of terminally ill patients towards euthanasia and physician-assisted suicide. Archives of Internal Medicine, 160, 2454– 2460. Wilson, K.G., Chochinov, H.M., McPherson, C.J., et al. (2007). Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychology, 26, 314 –323. Zigmond, A.S. & Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361 –370. Zuehlke, T. & Watkins, J. (1975). The use of psychotherapy with dying patients: An exploratory study. Journal of Clinical Psychology, 31, 729– 732.
