Introduction
In Germany, the use of intensive care services during terminal hospitalizations has increased steadily in recent years, particularly in the older age groups [
10]. The culture of medicine has moved from a more paternalistic model to taking a patient’s autonomy into increasing consideration in order to ensure that patient care is aligned with patient goals [
11]. While some consider end-of-life decision-making a growing challenge in German intensive care units (ICUs), others see a positive development towards humanized care.
End-of-life decisions are made when goals of care shift from curative to palliative care because of patient’s treatment preferences or prolonged life-sustaining treatment that is no longer beneficial for the patient. Decision-making regarding end-of-life treatments, however, is complex and requires an active process of deliberation and communication among clinicians, the patient and family members [
7]. German intensivists perceive a considerable discrepancy between current end-of-life practice and desired practice [
28]. The German Civil Code stipulates that the wishes of patients without decision-making capacity are to be determined hierarchically from (1) a written advance directive, (2) prior verbal statements about the preferred type, duration, and circumstances of the treatment in question, or (3) patient’s general statements and values. However, in practice decision-making is fraught with difficulties due to uncertainty of prognosis and ambiguous patient wishes [
20]. The objective of this large multicenter study was to observe and characterize end-of-life practices in multidisciplinary German ICUs in 2015–2016 as a subgroup analysis of a world-wide study [
3].
Discussion
The results of this study showed that among 1092 patients in German ICUs who died or had limitations of life-sustaining therapy, decisions to limit life support preceded 9 out of 10 deaths, and only 8% of deaths occurred after full cardiopulmonary resuscitation (failed CPR). It is noteworthy that 22% of patients with a limitation of life-sustaining therapy were discharged alive from the ICU.
Treatment limitations occurred more often in older patients, in patients with advance directives, or decision-making capacity. Physicians commonly sought information about patient wishes, based their decision-making on shared decision-making with patient and families and ethical considerations. They reported having no difficulties with either withholding or withdrawing life support. Limitations also occurred more often in ICUs with a higher Ethical Practice score, suggesting the importance of palliative structures like local ethical standards and written practice guidelines to improve decision-making confidence for practitioners in the palliative situation.
Our findings illustrate the growing importance of palliative care in German ICUs. It has become an everyday occurrence, but there is lack of recognition of its importance. Out data point to some opportunities for improvement. Treatment limitations in German ICUs occur more frequently and failed CPR less frequently than before. Previously, a retrospective German study from 2002–2006 found that only 29% of deaths were preceded by end-of-life decisions and only 3.5% of patients survived end-of-life decisions [
18]. This is in contrast to 88.6% of decisions to withdraw and withhold and a hospital survival rate of 13.8% in the study we presented here. Compared to worldwide data from Ethicus‑2, failed CPR occurred in a similar range in North American ICUs (8.5%) but less often than in ICUs in Australia/New Zealand (4.3%) or Northern Europe (3.7%) [
3].
Palliative care in the ICU is increasingly provided through interdisciplinary team meetings, integration of palliative care specialists, ethics consultation and family conferences [
22]. Ethical principles and practices of palliative care in the ICU have been outlined by national medical societies [
20]. However, although most German intensivists practice palliative care, only a minority feels confident doing so [
2]. This may be due to a perceived lack of structures and standards which support the change from curative to palliative care, namely lack of interdisciplinary or ethics case reviews, palliative care training or standard operating procedures for end-of-life care. Indeed, the EPS (end-of-life practice score) which assesses end-of-life protocols and palliative care consultations seems to suggest that treatment limitations occurred more often in ICUs with a higher EPS. However, this association needs to be treated with caution since more research is needed to understand the validity of this novel score.
Our data suggest a perceived gap between available information about patient wishes and unambiguous directives for decision-making. Physicians had information about patient wishes and discussed treatment limitations with families in over 80% of patients. They perceived that the patient will was followed in about 60% of patients. However, the question about the patient desires remained unanswered in about 40%, leading to the assumption that the patient’s will remained unclear despite discussion with families. In our study, 27% of patients had advance directives, which are legally binding in Germany. This is similar to recent findings from the University of Hamburg [
8] but lower than the prevalence in North America (49%) reported in the worldwide Ethicus‑2 study [
9]. However, the prevalence of advance directives may not be high enough to support patient-oriented end-of-life decisions in most patients. Furthermore, the advance directives that are in use in Germany often contain unspecific wording which makes them unsuitable for many acute situations [
15]. More and better advance directives are urgently needed in an ageing society. We speculate that the patient’s will remained unclear in a considerable proportion of ICU patients. Given Germany’s aging population and the increasing proportion of elderly patients who receive intensive care treatment at the end-of-life [
10], avoiding inappropriate intensive care is a growing challenge.
If physicians did not speak with the family, this was often because the family was not available. Data also suggest that ICU physicians involve most patients and families in the decision-making. However, the most common primary reasons for treatment limitations were unresponsiveness to maximal therapy, severity of disease, or underlying comorbidity. This suggests a more physician-centered approach with the intent to avoid nonbeneficial treatments regarding ethical principles such as good medical practice or best interest of the patient as primary consideration. This discrepancy can be explained with the uncertainty of patient wishes and family needs. According to a recent survey, 11% of families felt overwhelmed and wanted less participation in decision-making [
12]. It would be desirable to have regular meetings between treating physicians and nurses, patients and relatives and other doctors engaged in the patient’s care like family doctors, so that the patient’s wishes can be evaluated according to the disease course and achievable therapeutic options.
Our study cannot answer whether end-of-life decisions were timely or delayed. Physicians declined a delay due to disagreements between health care providers. The first treatment limitation occurred 2 days after ICU admission and death occurred 1 day after the first limitations. These intervals are comparable to findings from other studies [
26,
29].
End-of-life decision-making is considered a team effort, but in our study most decisions were reported to be initiated by physicians—except in one case, nurses were never reported to bring up the topic first. Nurse initiation was even lower than in the 1999–2000 (Ethicus-1) study [
6] and declined across all European ICUs [
5]. On the other hand, two-thirds of decisions were discussed with nurses and nearly total agreement with decisions was reported.
Physicians in the present study reported not having difficulties with withholding or withdrawing therapy. This is notable because withholding therapy is sometimes considered to be psychologically easier and more passive than withdrawing treatment [
17]. However, a recent prospective multicenter study in 43 French ICUs in 2013 showed a similar pattern [
16]. Given that only a decade ago in Germany, the issue of limiting life support was discussed in a controversial manner with concerns that limiting life support could be illegal [
4], this finding indicates that the practice of limiting nonbeneficial treatment has become more accepted and reflective of national recommendations [
13]. The answers were given by senior physicians in the present study. Thus, this answer should not be transferred on younger colleagues, who should not be left alone with these decisions unless adequately trained.
In France, Quenot et al. found similar physicians’ perceptions of nonbeneficial therapy, including exhaustion of therapeutic options and terminal status of chronic disease. In French ICUs, physicians also addressed age as a factor which determines nonbeneficence [
21], whereas physicians in our study rarely reported age to be the primary reason for an end-of-life decision. Physicians mostly stated ethical principles such as good medical practice or best interest of the patient as primary consideration in decision making, and not economic or social obligations.
We can only speculate on the surprisingly high ICU and hospital survival rate (22% and 16%, respectively) after treatment limitation. A similar phenomenon in the Ethicus‑2 comparison study in European ICUs was discussed as result of decisions made before or during hospitalization due to the patients’ wishes [
24]. A study in Finnish ICUs found that one in four patients survived 1 year, depending on housing type, prehospital fitness, and the need of postoperative care in an ICU [
1].
Our study has strengths and limitations. To our knowledge, this is the largest prospective and patient-based study of end-of-life decisions in the ICU in Germany. Data were collected centrally, submitted to quality controls, and used in previous and international studies [
23,
24], thus, enabling comparison. The study also has limitations. Participating ICUs were predominantly academic and self-selected on account of their ethical interest which introduces selection bias. Thus, findings may not be generalizable. Moreover, the collected data did not elicit the perceptions of nurses. This may have introduced bias since nurses perceive end-of-life decision-making more negatively than physicians [
14]. Answers were given by senior physicians; thus, they may not reflect the uncertainty experienced by younger physicians. Moreover, self-reported answers to ethical questions may underlie social desirability bias. We left the classification of whether decision discussions were shared to the responsible physician. Thus, we cannot rule out misclassification bias. Finally, our findings cannot be extrapolated to other countries where there is less limitation of life-supporting therapies due to different cultures, healthcare systems, and population demographics.