Introduction

Despite great advances in medical technology and therapeutics some patients admitted to hospitals do not survive. Several decades ago most patients died in ICUs after cardiopulmonary resuscitation (CPR) [1]. Over the years changes have occurred in society's and physicians' attitudes and practices [2], and today most patients dying in hospitals do so after the foregoing of life-prolonging therapies [1, 3, 4, 5]. Decisions to forego therapies in European countries are frequently made without any discussion with competent patients or families of incompetent patients [5, 6]. Most patients in intensive care units (ICUs) lack decision-making capacity [1, 6], and most determinations are made by physicians or by family members acting as surrogates [6, 7]. Studies demonstrate that North American health care workers consult families more often than do Europeans [6, 8]. The judgment of physicians concerning treatments and factors to be considered in the decision may differ from that of patients and families [9, 10, 11, 12]. Some seriously ill patients wish to participate in end-of-life decisions; others do not [13]. Some family members believe that involving them in decisions unfairly places them in the role of deciding if their loved one will live or die [14].

People throughout the world are afraid of dying a high-technology death with lingering, suffering, absence of control, and burdening their family [15]. A change towards greater patient and family influence in end-of-life decisions could result in increased use of life support [11] or a decrease in the use of these treatments [12, 16]. Many North Americans die in hospitals, and approx. 20% of these deaths occur in ICUs [17, 18]. End-of-life decisions are made daily throughout the world. The present study was developed to better understand these decisions, the attitudes and beliefs of the protagonists and to help improve end-of-life care. Although there are reports from individual countries, comparative studies within and among countries with attitudes of physicians, nurses, patients and families regarding end-of-life decisions are lacking. This study evaluated attitudes of these four most involved parties towards end-of-life decisions in ICUs in six European countries [19].

Methods

Sample

In the Czech Republic, Israel, The Netherlands, Portugal, Sweden, and the United Kingdom, questionnaires were completed by physicians and nurses who worked in ICUs, patients who survived the ICU, and families of surviving and nonsurviving ICU patients. Centers were chosen based on previous successful participation in the Ethicus study [4]. Criteria included all of the following: consecutive patients previously hospitalized in the ICU for more than 3 days within the last 12 months, patients who had improved so that they were oriented and could understand and communicate to complete the questionnaire, and close family members (e.g., spouse, child, parent), who were present in the ICU during most of the patient's hospitalization, and who could understand and communicate to complete the questionnaire. Many patients and families were excluded because they were too ill, the questionnaire was too upsetting, they refused, did not appear or had no or incorrect phone number or address. Physicians and nurses were chosen based on their working in ICUs from centers studying the patients and families and additional respondents were chosen from other hospitals in the country to reach approx. 100 in each group. Questionnaire development and translation are noted in the Electronic Supplementary Material (ESM) as S.1 Questionnaires for all four groups contained definitions for medical terms and included similar questions for age, gender, marital status, religion, the importance of quality of life and value of life, desires for therapies (ICU admission, CPR, and ventilator) or active euthanasia for conditions such as terminal illness, permanent unconsciousness or severe dementia, preferences for placement and treatment based on life prolongation. Questionnaires are found in the ESM as S2–S5 Questionnaires were usually completed by patients and families approx. 3 months from hospital discharge. Ethics Committee approval included informed consent from respondents or a waiver of informed consent.

Questionnaires were distributed to 4,389 individuals and completed by 1,899: 528 of 895 physicians (59%), 629 of 1,160 nurses (54%), 330 of 1,476 patients (22%), and 412 of 858 families (48%; 327 of surviving patients and 85 of dying patients), for an overall response rate of 43%. Questionnaires were completed by patients and families (in the presence of health care professionals to answer questions) in 547 cases (79%). Physicians and nurses from 142 hospitals responded. Demographics including age, gender, marital status, and educational level are noted in Table 1. The physicians included 300 senior physicians (64%) and 166 who were in training (36%); 222 had practiced for 10 years or more, and 259 for less than 10 years. Physicians and nurses were significantly younger than patients and families.

Table 1 Demographic characteristics of respondents
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Statistical analyses

Subsequent to the examination of the distributions of the responses many categories were dichotomized or grouped: marital status (married/not married), number of years practicing in ICU ( < 10/10+), number of beds in ICU (≤ 10/> 10), frequency of use (“yes” for “always” or “often” and “no” otherwise), agreement (“disagree” for “strongly disagree” or “disagree” and “agree” otherwise). For the variable measuring importance of value vs. quality of life all cases that ranked the midpoint of the scale were excluded. The attitudes of physicians, nurses, patients, and families were compared by the χ2 and Fisher's exact tests. Both for importance of value of life vs. quality of life and the desire to be in the ICU if terminally ill, multivariate analyses were performed by multiple logistic regressions performed in two steps. In a backward stepwise procedure variables with a contribution to the model not statistically significant were removed. The final model was then constructed including only those remaining variables. This step minimized the exclusion of cases with missing data. The outcome variables were value vs. quality of life and the desire to go into ICU if diagnosed with a terminal illness. Initial explanatory variables in the logistic models included type of respondent, region, age, gender, marital status, and religion. An additional separate multiple regression for physicians included those variables and country of medical training, role in ICU, number of beds in ICU, hospital practice, special training in ICU, and years practicing ICU.

The study sponsors had no role in study design, collection, analysis or interpretation of data, manuscript preparation or submission. This contribution does not represent their opinion.

Results

In general, all respondents ranked their preferences for quality of life higher than their preferences for value of life (Table 2). However, physicians and nurses found quality of life more important in their end-of-life decisions for themselves than patients and families (p < 0.01; Table 2). Value of life was more important [343 (69%), 392 (65%), respectively] when physicians and nurses based their decisions on their duty to the patient (Table 3) rather than what they desired for themselves [49 (12%), 65 (13%), respectively, p < 0.001; Table 2]. Only 341 respondents (19%) wanted their life prolonged as much as possible by all available means in any condition: 32 physicians (6%), 52 nurses (9%), 129 patients (40%), and 128 families (32%, p < 0.001). When asked how to be treated if diagnosed with a terminal illness, physicians and nurses wanted fewer ICU admissions, uses of CPR, and ventilators and slightly fewer instances of active euthanasia for pain than patients and families (p < 0.001) for each (Table 4).

Table 2 Importance of quality of life or value of life for the respondents' end of life decisions
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Table 3 Importance of quality of live or value of life for the patient in health care professionals responses
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Table 4 If respondent diagnosed as having a terminal illness, would want (CPR cardiopulmonary resuscitation, active euthanasia for pain)
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Findings were similar with all respondents wanting even fewer aggressive treatments when asked how they would like to be treated if permanently unconscious. More active euthanasia was found for all groups except families (Table 5). If suffering from severe dementia, even fewer respondents [271 (17%)] wanted life-saving treatments than for a terminal illness or permanent unconsciousness: 9 physicians (2%), 34 nurses (6%), 106 patients (33%), and 122 families (30%, p < 0.001). When asked where they would rather be if they had a terminal illness with only a short time to live and required life-saving treatments for a severe, acute problem, more health care professionals than patients and families preferred being home or in a hospice even if they would die in a short time (p < 0.001; Fig. 1A,B). Fewer patients and families wanted to be in an ICU to prolong life for only a few weeks [247 (37%)] than home 395 (58%); more patients and families [247 (37%)] than physicians and nurses [105 (10%)] preferred being in an ICU (p < 0.001; Fig. 1A,C). The majority of respondents want life-saving treatment in an ICU if it would prolong life with a good quality of life for 12 months [1,648 (93%)], 6 months [1,505 (87%)], or 3 months [1,267 (74%)] but not 1 month [845 (49%)] or 1 week [579 (34%)]. There were no differences between responses for senior physicians compared to those physicians in training or based on years of practice.

Fig. 1
figure 1

A If respondent told had a terminal illness and required life-saving therapy for an acute problem rather be home, not hospitalized even if die quicker (0–100%). B If respondent told had a terminal illness and required life-saving therapy for an acute problem rather be placed in hospice (0–100%). C If respondent told had a terminal illness and required life-saving therapy for an acute problem rather be hospitalized in ICU to prolong life a few weeks (0–100%)

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Table 5 If respondent were permanently unconscious would want (CPR cardiopulmonary resuscitation, active euthanasia for pain)
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Multivariate analysis showed that patients and families considered value of life more important than quality of life compared to the importance reported by physicians and respondents who were Jewish and with no religion considered quality of life more important compared to the importance reported by Catholics (Table 6). Patents and families wanted to be in an ICU if terminally ill whereas younger, female, and nonreligious respondents did not (Table 7).

Table 6 Multiple logistic regression of importance of value of life vs. quality of life for all respondents; if the odds ratio (OR) is greater than 1, value is more important relative to the importance reported by physician or Catholics (CI confidence interval)
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Table 7 Multiple logistic regression of desire to be in the ICU if terminally ill for all respondents; if the odds ratio (OR) is greater than 1, value is more important (CI confidence interval)
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Discussion

The present study is the first comparative evaluation of patients', families', physicians', and nurses' attitudes towards end-of-life decisions in several European countries. The study demonstrates that physicians and nurses believed that for themselves quality of life is more important, whereas patients and families believed value of life was more important. Interestingly, physicians and nurses believed value of life was even more important than patients and families when viewing their duty to their patient. For aggressive treatments (ICU, CPR, and ventilation) physicians and nurses wanted fewer treatments than patients and families if they had a terminal illness. These discrepancies between medical personnel and patients support previous findings, which have shown that for the same condition physicians want less treatment than elderly persons with serious illnesses, and that physicians treat their patients more aggressively than they would want for themselves [12, 20] or patients would want [12].

Respondents wanted fewer applications of CPR and mechanical ventilation than they did ICU admissions. Patients wanted more treatments than families. All groups wanted fewer treatments if they had permanent unconsciousness or severe dementia compared to a terminal illness. Given a terminal illness, physicians and nurses wanted to receive life-saving therapy as much as patients or families if it would prolong their life with good quality of life. Despite the legality of active euthanasia in only one of the countries in the study, euthanasia for pain was an option for not only patients and families but also physicians and nurses. Finally, compared to patients and families, more physicians and nurses with a terminal illness requiring life-saving therapy would rather be home or in a hospice than an ICU. Even the latter groups, however, had close to a majority who wanted to be home or in a hospice.

Several studies have shown that patients want aggressive treatments such as CPR [13, 21], especially when the outcome is favorable [22, 23, 24]. Patients and families overestimate the effectiveness of life-sustaining treatments, but when patients learn the probability of treatment survival, those opting for therapies such as CPR decreases significantly [22]. Although several studies have demonstrated that patients are less willing to undergo aggressive therapy if their physical or cognitive function and quality of life is decreased [22, 23, 24, 25, 26], other studies have shown that patient perceptions of their quality of life do not affect their choices for ICU and treatments [11, 27]. Although patients' willingness to receive life-sustaining therapies declines with increasing severity of presented illness [12, 28], the more physically limited persons are, the more likely they are to want more rather than less aggressive therapies [15]. Those already diagnosed as severely ill, however, wanted aggressive treatments less than others [15].

Physicians consider the quality of life of patients worse than patients themselves [27] and underestimate patient willingness to undergo aggressive treatments [21]. Health professionals with exposure to critically ill patients did not want aggressive treatments if terminally ill, demented, or in a persistent vegetative state, similar to the findings of a previous study [10]. Patients and families were more willing to receive intensive care than physicians considered useful [9]. One would think that the reality of ICU might dampen preferences for treatments. This study and others [9] show that the ICU experience does affect the medical personnel's wishes, but does not undermine patients' and families' willingness to receive it, and most surviving patients choose to be readmitted. There was little correlation between patients' functional status or character of ICU stay and the patients' or family members' desire to undergo intensive care [11]. Only when there is no hope for recovery, a vegetative state, or severe neurological impairments are patients unwilling to undergo intensive care [11]. Patient and family expectations of ICU may be too high; improved communication about limitations of ICU therapies may lessen the high expectations and allow physician practices to come closer to their beliefs of what is best for themselves.

How can the above discrepancies be explained? Physicians and nurses were younger and without medical disorders. They view disease processes differently [9] and want aggressive therapies only with a good quality of life. They see patients with a lower quality of life and do not want treatments that patients who do not view their quality of life as poor want. The multivariate analysis showed that younger and female respondents did not want ICU care if terminally ill. Physicians appear to use themselves as an “ideal standard” when evaluating usefulness of ICU for their patients [9]. Although patients would not want aggressive care if they knew they were dying, prognostic uncertainty and a “deeply held desire not to be dead” make patients willing to undergo therapy even when seriously ill but not close to death [29]. Patients and families faced with death or the loss of a relative may value survival regardless of the life circumstances as fear of death may overwhelm other concerns [11]. Alternatively, the functional status and perceived quality of life of patients may not be below the threshold for which persons refuse ICU and aggressive therapies [9, 11]. Finally, similar to a previous report, these findings indicate that impaired cognitive functioning is more frightening than a terminal disease [12].

In The Netherlands and Belgium active life-ending procedures are permitted and performed by physicians with the specific intent of causing or hastening a patient's death [30]. The majority of the public [31] and many physicians [32] favor active life-ending procedures for terminally ill patients and patients with great suffering. Some 40% of European physician respondents say that they would deliberately administer large doses of drugs until death ensued [5]. The present study documents a high percentage of all respondents (one-third to one-half) wanting active euthanasia for themselves for pain if terminally ill even in countries where it is illegal.

The strengths of this study include a uniform questionnaire developed by consensus, attitudes of providers and receivers of medical care who experienced the illness and treatments simultaneously in six different countries, and family members of dying and living patients to avoid sampling bias. Limitations of the study include the fact that attitudes rather than actual behavior were evaluated, the relatively low response rate especially in patients which could bias reporting, the exclusion of patients and families younger than 18 years, those who did not consent or with language problems or cognitive impairments, the possibility of recall bias, quality of life, value of life and terminal illness were not defined and the potential selection of centers interested in ethical issues and involved in previous studies.

The present study demonstrates marked differences in attitudes for end-of-life care among respondents of the different groups. Society will have to find ways to address such discrepancies to improve end-of-life care.