A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance

Patient Education and Counseling 87 (2012) 277–288

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Review

A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance ˜ aca a, Erin V.W. Andrew a, Natalie Evans a,b,*, Claudia Bausewein c,d, Arantza Men c c a,e Irene J. Higginson , Richard Harding , Robert Pool , Marjolein Gysels a,c on behalf of project PRISMA a

Barcelona Centre for International Health Research (CRESIB, Hospital Clı´nic - Universitat de Barcelona), Barcelona, Spain Department of Public and Occupational Health, EMGO Institute, VU University Medical Center, Amsterdam, The Netherlands c King’s College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, UK d German Association for Palliative Medicine (Deutsche Gesellschaft fu¨r Palliativmedizin), Berlin, Germany e Centre for Global Health and Inequality, University of Amsterdam, The Netherlands b

A R T I C L E I N F O

A B S T R A C T

Article history: Received 18 July 2011 Received in revised form 5 October 2011 Accepted 22 October 2011

Objective: Recent legal changes in Germany make non-compliance with advance directives (ADs) a criminal offence. This article assesses the evidence on attitudes towards, use of, and physician compliance with ADs in Germany. Methods: Critical review: studies on ADs, identified from a systematic review of culture and end-of-life care in Germany (11 electronic databases, 3 journals, reference lists, and grey literature), were included. An interpretative synthesis of findings revealed cross-cutting themes. Results: Thirty-two studies (1996–2009) were identified. Key themes were: awareness; utilization; compliance; and bindingness of ADs. There was a positive trend between awareness of ADs and study publication date. Use varied between patient groups (0.3–62%) and was low amongst the general population (2.5–10%). Fears about ADs’ purpose and possible abuse were identified. Physician discomfort in discussing ADs and non-compliance were reported. Physicians preferred legally binding ADs, though conflicting results were reported for patients’ desired level of bindingness. Conclusion: Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding desired bindingness. Practical implications: Although legal changes will hopefully improve compliance, low awareness, communication difficulties and uncertainties surrounding ADs must be addressed if use is to increase. ß 2011 Elsevier Ireland Ltd. All rights reserved.

Keywords: End-of-life Advance directive Germany Europe

1. Introduction Advance directives (ADs) are written documents in which people outline the treatments that they do or do not agree to if, at some point in the future, they are no longer competent to communicate their wishes [1]. Compliance with patients’ wishes as set out in ADs is increasingly important and legislated throughout Europe [2,3]. The importance of ADs has grown in parallel with an increasing recognition of patient autonomy and an understanding that, although technological advances have undoubtedly brought many health benefits, these same advances have resulted in an unacceptable prolongation of the dying process

* Corresponding author at: VU Medical Center, van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. Tel.: +31 020 4449816; fax: +31 020 4448387. E-mail address: [email protected] (N. Evans). 0738-3991/$ – see front matter ß 2011 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2011.10.004

for many patients [4]. Patients can, however, stipulate which treatment interventions they agree to in the form of an AD, giving them an opportunity to refuse treatments they believe will prolong their suffering. The actual use of AD documents, however, varies widely between countries due to factors such as the legal status of ADs, the importance given to patient autonomy, and cultural patterns of communication [5–8]. In Germany, AD forms (Patientenverfu¨gung) are often supplied by governmental, religious or social organizations [9–11]. Together, the Evangelical Lutheran Church and the Roman Catholic Church have formulated a Christian AD [9]. Due to the standardized nature of these forms, they include general end-oflife (EoL) preferences and rarely outline disease specific treatments [10,11]. The AD form provided by the Bavarian Ministry of Justice is one of the few which contains a section on disease specific treatments [12].

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Table 1 Databases, search terms and inclusion criteria. Databases (updated to mid October 2010)

Search terms

Web of knowledge all databases (Web of Science with conference Proceedings (1899–2010), BIOSIS Previews (1969–2010), Inspec (1969–2010), MEDLINE (1950–2010), Journal Citation Reports (2000–2010)); OVID (AMED (1985–2010); MEDLINE (1950–2010); PsycINFO (1806–2010); and EMBASE (1980–2010)); Cancerlit (1975–2010); ASSIA (1987–2010); and CINAHL (1982–2010).

(Germany OR German*) AND (palliative OR terminal OR ‘‘end of life’’ OR end-of-life OR death OR dying OR ‘‘continu* care’’ OR ‘‘AD*’’ OR hospice* OR ‘‘supportive care’’) AND (cultur* OR intercultural OR cross-cultural OR transcultural OR qualitative OR ethnography OR anthropology OR interview* OR ‘‘focus group*’’)

Recently in Germany, the legal status of ADs has been strengthened. A new law passed by the German parliament, which came into effect on September 1st 2009, makes the carrying out of treatment detailed as unwanted in a patient’s AD a physical assault upon the patient [13], converting non-compliance into a criminal offence. It is however unclear whether the possession of an AD actually affects a patient’s EoL medical care. Questions are raised by a number of studies, which have reported no significant difference in the medical treatments received by those who did or did not have ADs [14–16]. Furthermore, it has been argued that, due to changes in patients’ treatment preferences during the disease course, preferences documented in an AD may not be up-to-date when they come to be used [17–19]. In light of recent legal developments focusing on patient autonomy and ADs in Germany, it is important to investigate patients’ and physicians’ AD-related attitudes and practices to understand the context in which the law is being implemented and its potential impact, and to identify gaps in knowledge. This article aims to assess the evidence on attitudes towards, use of, and physician compliance with ADs in Germany. The article also aims to situate issues that are of particular relevance in Germany within the wider body of research and contribute to understanding the use, and potential use, of ADs in cross-cultural perspective.

of retrieving articles on EoL care that place emphasis on cultural and social factors. In addition, the reference lists of retrieved articles and the archives of the journals Omega (1970–2010), Mortality (1996–2010) and Medical Anthropology (2002–2010) were searched. Publications by authors of included articles were searched via authors’ web pages (if available) and the Web of Knowledge ‘author search’ facility. Furthermore, as part of the PRISMA project a network of experts in cultural issues in EoL care was set up. Experts that participated in the network recommended literature, including unpublished and grey literature (reports and policy documents from governmental and non-governmental agencies). 2.2. Inclusion criteria Articles were included in the review on cultural issues and EoL care from Germany if they addressed the perceptions, opinions, understandings, knowledge, preferences, attitudes, practices and behaviors of the different actors involved in EoL care [21]. This paper only deals with the articles on ADs that were identified as part of this broader review. Original studies and literature reviews in either English or German were included. Although the search was conducted using only English language search terms, any German language articles identified were included, read in full and assessed by the second author (CB).

2. Methods 2.3. Screening and data extraction This review was undertaken as part of the PRISMA program, which aims to inform best practice and harmonize research in EoL care for cancer patients across Europe [20]. ‘PRISMA’ stands for ‘Reflecting the Positive diveRsities of European prIorities for reSearch and Measurement in end of life cAre’ and is a major three year coordinating action project funded by the European Union under the Seventh Framework Programme (FP7). PRISMA incorporated a work package on the influence of culture on EoL care [20]. This article is a critical review of studies on ADs which were identified as part of a broader systematic review of the German literature on cultural issues and EoL care. As such, the search terms for the systematic review concerned culture and EoL care rather than ADs specifically. Research on ADs however comprised the largest distinct sub-group of studies identified from this systematic and comprehensive review, and was deemed to deserve further in-depth attention. All studies concerning ADs identified through the database, reference and hand searches, and those recommended by country experts, were included in the critical review. 2.1. Search strategy The systematic review of articles on cultural issues and EoL care from Germany was carried out in 11 electronic databases, using the search terms in Table 1. The search terms were chosen with the aim

Articles were managed in Endnote X2. Titles and abstracts were initially assessed by one reviewer (NE) to eliminate those not related to EoL care. All remaining titles and abstracts were then assessed for relevance in regular team meetings (minimum three participants). When there was insufficient information to decide on inclusion, the full text was retrieved and appraised. Data were extracted from full text copies of the reviews (Tables 2 and 3) by one reviewer (NE or CB) and checked by another (MG). 2.4. Analysis As this paper is not a systematic review and considering that studies that employed qualitative, quantitative and mixed method were included, a meta-analysis of study findings was not appropriate. Rather, an interpretative approach was taken and key themes were identified for analysis following the principals of constant comparison [22–24]. Interpretative syntheses can develop concepts and theories from a range of sources and integrate both quantitative and qualitative evidence [22,24]. After a preliminary reading of the English language studies by the first author (NE) and of the German language studies by the second author (CB) an initial coding framework was developed. Both researchers used this framework to code all articles. The initial coding framework also provided the basis for an iterative process of coding and joint identification of emergent cross-cutting

Table 2 Studies concerning ADs from Germany. Aim

Location

Study design

Participants

Main findings

To investigate the patterns of medical and nursing practice in the care of patients dying in Freiburg University Hospital, a large urban teaching hospital, using a modified version of two recently published chart abstraction instruments. To assess the EoL care needs of neurological patients.

Freiburg University Hospital, Freiburg, West Germany.

Quantitative (retrospective review of patient records)

Patient proxy (patient records, n = 226).

All neurology departments, Germany.

Quantitative (questionnaire)

Healthcare professionals (HCP) (directors of neurology departments, n = 152). Patients (n = 15) and HCP (physicians, n = 15).

A minority (6.6%) of patients had an AD and just over a fifth (22.1%) had a health care proxy. However in the majority of cases (70.3%) patient’s wishes were sought from a family member or spouse (the source and date of information was included in 19.5% of notes). Almost all respondents supported a patient’s right to refuse life-sustaining treatment. Despite the fact that 88% of the respondents regard ADs as helpful, only an estimated 4% of their patients had completed one.

Borasio et al. [26]

Burchardi et al. [10]

To explore how discussions about ADs are undertaken.

Two neurology centres, Northern Bavaria, Germany.

Qualitative (semistructured interviews)

Eisemann et al. [27]

To investigate to what extent various determinants in the decision-making process for the treatment of severely ill incompetent patients are influenced by cultural and socio-political factors.

Graz (Austria), Rostock and Neubrandenburg (East Germany), Ulm Germany (West Germany), and Umea˚ (Sweden).

Quantitative (vignette and questionnaire)

HCP (Swedish physicians, n = 104; Austrian physicians, n = 126; West German physicians, n = 119; East German physicians, n = 191).

Jox et al. [18]

To assess the desired level of bindingness of ADs amongst patients who have written ADs and the factors influencing their decisions.

Munich, Germany.

Quantitative (questionnaire)

Justinger et al. [28]

To ascertain the frequency of ADs amongst the patients of a surgical hospital and related influencing factors.

Quantitative (questionnaire)

Kuhnlein et al. [29]

To investigate the attitudes of Amyotrophic Lateral Sclerosis (ALS) patients towards physician assisted suicide, euthanasia, circumstances of dying (including preoccupation with death) and the technologies used. To explore which social contexts contribute to refusal of depositing an AD.

Clinic of General, Visceral, Vascular and Paediatric Surgery, University Hospital of Saarland, Homburg/Saar. ALS outpatient clinic, Ulm, Germany.

General public and patients (authors of ADs, either patients of a palliative care institution or clients of an AD planning centre) n = 402. Patients (n = 450).

Qualitative (semistructured interviews)

Patient proxy (caregivers of ALS patients, n = 29).

Nationwide survey, Germany.

Quantitative (questionnaire)

Two surveys of the general public (n = 400 and n = 1023).

Lang and Wagner [30]

Physicians waited for a sign that patients were ready to discuss ADs, though they worried that some patients would be informed too late. Physicians also delayed discussion due to an awareness that preferences change during the disease course. Patients mostly waited for symptoms to emerge before deciding whether or not to accept life-sustaining treatment. Austrian and East German Physicians attempted resuscitation more often than Swedish and West German physicians (26%, 32%, 15% and 16%, respectively). The factors said to have most influence over treatment decisions were said to be ethical concerns and patients wishes. Patients’ wishes were considered more important in Sweden and West Germany than Austria and East Germany whereas family wishes were considered important in Sweden only. Hospital costs were most important for West German physicians. More terminally ill participants wanted a high degree of bindingness for their AD than other groups. There was no correlation between the wish for a high degree of bindingness with age or gender.

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Reference Becker et al. [25]

A minority (16.7%) of patients had an AD, a fifth (21.3%) were unaware of ADs and a minority (9.7%) thought there was no need for ADs. The majority of patients (65.3%) considered it an option for the future. Age and experience with severe disease were related to the possession of an AD. An AD was compiled in 18/29 cases. Twenty caregivers reported that patients had rejected IV. This was explicitly documented in an AD for 17 of these patients. About 10 percent of adults in Germany had completed an AD and fifty percent objected to AD completion. Acceptance was related to age and personal experience of death and dying.

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280

Table 2 (Continued ) Aim

Location

Study design

Participants

Main findings

To understand people’s individual lifetime preferences, to what extent people want to control the process of death and dying and the effect of personal experiences on people’s desires regarding length of life.

Nationwide survey, Germany.

Quantitative/ qualitative (telephone based interviews followed by faceto-face interviews).

General public (n = 1125).

Lang-Welzenbach et al. [32]

To analyse the attitudes of patients, physicians and nurses towards participation in actual treatment decisions as well as towards ADs.

A university radiation therapy department, Erlangen, Germany.

Qualitative (semistructured interviews)

Patients (n = 15), HCP (physicians n = 7, and nurses n = 13).

Lang-Welzenbach et al. [33]

To assess the role of ADs in gynaecological oncology.

A university gynaecology department, Erlangen, Germany.

Qualitative (semistructured interviews)

Patients (n = 15), HCP (physicians n = 12, and nurses n = 15).

Paul and Fischer [34]

To understand knowledge and values with regard to ADs in the general German population.

Nationwide (online) survey, Germany.

General public (n = 95).

Richter and Eisemann [35]

To evaluate compliance with do-not-resuscitate orders (DNR) and ADs from a cross-cultural perspective.

Rostock and Neubrandenburg (East Germany) and Umea˚ (Sweden).

Qualitative/ quantitative (an ‘online-supported survey’ consisting of multiple-choice questions and open questions) Quantitative (vignette study involving three cases and questionnaire).

The effect of bad news about aging on desired life span and control over death was small, though those who received bad news about aging were less likely to believe things get better with age. For desired age there was no significant difference between groups who had heard good and bad news about aging. Just 11% of participants possessed an AD. Patients were said to be either ‘active’ or ‘passive’ in regard to involvement in treatment decisions. ADs were said to be useful but many patients did not consider them necessary. In practice, ADs were rarely discussed. Although patients, physicians, and nurses stressed the importance of ADs, they were rarely used. The importance of continuous consent was emphasized as most of the patients are able to give consent until they die. There was a high level of uncertainty about medical aspects of ADs with misunderstanding about their purpose and range.

Richter and Eisemann [36]

To evaluate compliance with patient’s wishes and physicians and nurses agreement on decision making in a cross-cultural perspective.

Rostock and Neubrandenburg (East Germany) and Umea˚ (Sweden).

Quantitative (vignette study involving three cases and questionnaire).

Richter and Eisemann [37]

To explain the factors which influence nurses’ decision-making, to describe an underlying attitude system, and to investigate possible differences between nurses from Germany and Sweden.

Rostock and Neubrandenburg (East Germany) and Umea˚ (Sweden).

Quantitative (vignette study involving three cases and questionnaire).

Richter et al. [38]

To examine the importance of various factors in the decision-making of East and West German physicians.

Quantitative (questionnaire)

HCP (physicians, n = 310).

Richter et al. [39]

To assess the treatment decisions, and their determinants, of German physicians and nurses.

The state of BadenWurttemberg (West Germany) and the state of Mecklenburg (East Germany). Rostock and Neubrandenburg, East Germany.

Quantitative (vignette study involving three cases and questionnaire).

HCP (doctors n = 191, and nurses n = 182).

HCP (German physicians n = 191, Swedish physicians n = 104, German nurses n = 182, and Swedish nurses n = 122). HCP (German physicians n = 191, Swedish physicians n = 104, German nurses n = 182, and Swedish nurses n = 122). HCP (German nurses n = 182, and Swedish nurses n = 122).

The proportion of HCPs who said they would give cardiopulmonary resuscitation (CPR) in a hypothetical situation ranged from 8.3% (Swedish nurses for ADscenario) to 32.5% (German doctors for DNR-scenario), depending on the available information concerning patients’ treatment preferences. There was a relationship between treatment option and information available about patient’s wishes. Two patterns of closely related determinants were identified: (a) ‘patient’s wishes’, ‘ethical concerns’, and ‘family wishes’; and (b) ‘patient’s age’, ‘level of dementia’, and ‘hospital costs’. Legal concerns were only important for German respondents. Level of dementia was the only factor related to Swedish nurses’ treatment decisions. For German nurses, ethical concerns and the patient’s age and wishes were associated with treatment decisions. The greater the nurse’s role in the making of the AD the more likely they were to comply with it. Ethical concerns and patients’ wishes were the most important factors in physicians’ decisions. Differences were, however, found in the influence of hospital costs, patient and family wishes, the level of dementia and the patient’s age. The more information physicians and nurses had about the patient’s wishes, the less aggressive the treatment option, in line with the wishes of the patient, and the less complicated the decision-making. This trend was more pronounced for nurses. For both groups ethical factors and patient wishes were regarded as the most important issues.

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Reference Lang et al. [31]

Quantitative (vignette study involving three cases and questionnaire).

HCP (physicians n = 535).

The more information available about the patient’s wishes, the less interventions were made and the fewer conflicts in decision making. Swedish physicians chose fewer life-prolonging interventions compared with Russian and German physicians.

Quantitative (questionnaire)

Non-compliance with the patient’s wishes ranged between 39% and 58%, with nurses showing significantly higher compliance than physicians. The use of CPR decreased with increasing information about the patient’s wish.

To determine cross-culturally to what extent various attitudes (legal and ethical concerns, hospital costs, level of dementia, patient’s age, patient’s wishes, family wishes, doctor’s religion) influence the treatment decisions of doctors with critically ill incompetent elderly patients.

Sweden (Umea˚), Germany (Rostock and Neubrandenburg), and Russia (Arkhangelsk).

Quantitative (vignette study involving three cases and questionnaire).

HCP (German physicians n = 191, Swedish physicians n = 104, German nurses n = 182, and Swedish nurses n = 122). HCP (Swedish physicians n = 104, German physicians n = 191, Russian physicians n = 232).

Sahm et al. [43]

To examine the level of desired adherence to ADs in a number of different theoretical situations for patients, healthy people, nurses and physicians.

State of Hessen, Germany.

Sahm et al. [44]

To explore patients’ EoL treatment preferences and acceptance of ADs.

State of Hessen, Germany.

Qualitative/ quantitative (vignette study involving five cases and questionnaire an adherence score was calculated for each participant). Quantitative (questionnaire)

Sahm et al. [19]

To investigate knowledge about and willingness to accept ADs in cancer patients, healthy controls, physicians, and nursing staff in Germany.

Two cancer clinics, State of Hessen, Germany.

Quantitative (questionnaire)

Sahm and Will [45]

To find out which persons are preferred as proxies for decision-making amongst cancer patients, healthy controls, nursing staff and physicians

Quantitative (questionnaire)

Schroder et al. [8,46]

To ascertain the prevalence of ADs in the German population, and to understand the wish for disclosure in terminal illness and diseases in their final stages.

German Diagnostic Clinic (Deutschen Klinik fu¨r Diagnostik), Wiesbaden, Germany. Nationwide survey, Germany.

To investigate how EoL decisions are influenced by cultural and socio-political circumstances and to explore physicians’ compliance with patient wishes.

Richter et al. [41]

To compare decisions in the treatment of severely ill incompetent elderly patients amongst physicians and nurses from a cross-cultural perspective.

Richter et al. [42]

Quantitative (questionnaire)

Patients (n = 100), general public (healthy people, n = 100) and HCP (nurses n = 100, and physicians n = 100).

Patients (n = 100), general public (healthy people, n = 100) and HCP (nurses n = 100, and physicians n = 100). Patients (n = 100), general public (healthy people, n = 100) and HCP (nurses n = 100, and physicians n = 100).

Patients (n = 100), general public (healthy people, n = 100) and HCP (nurses n = 100, and physicians n = 100). General public (n = 2050).

Swedish HCPs chose less intensive treatments. German and Russian treatment options were comparable. In general 50% of physicians were not compliant with the AD. German and Swedish physicians were less influenced in their decision making by hospital costs than Russian physicians. German physicians were less influenced by the wishes of the patient and family – reflecting a more paternalistic attitude. Patients and members of the general public were more likely to disregard ADs and consider them less binding than physicians and nurses. A desire for close adherence to ADs was related to living alone and having already written an AD. Those in poor health were more in favor of life preserving treatment in spite of the AD. No difference in acceptance of ADs was found between patients, the general public, nurses and physicians. However, patients wanted treatment, including ‘aggressive’ treatments more frequently than other groups. Determinants for choosing these treatments were poor health and old age. Only 18% and 19% of the patients and healthy controls, respectively, and 10% of the medical staff had written an AD. However, 50–81% of those surveyed indicated that they wished to write one. This intention was associated with deteriorating health and age. A majority from all groups believed that ADs may influence the course of treatment (79–85%), yet half of those surveyed in all groups feared that patients could be pressurized into writing an AD, and 38–65% thought that relatives could abuse such documents. Only 10–20% of participants had an AD. Relatives were the preferred surrogate decision-maker and were frequently willing to act as a proxy.

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Sweden (Umea˚), Germany (Rostock and Neubrandenburg), and Russia (Arkhangelsk). Eastern part of Germany (Rostock and Neubrandenburg) and Sweden (Umea˚).

Richter et al. [40]

16% of the general public did not want full disclosure of diagnosis/prognosis and wanted information to be given to their families only. 59.1% expressed a wish for complete and immediate disclosure. 24.9% desired a careful step-by-step presentation of information. Only 2.5% had ADs. 71.9% of those surveyed had never before thought about ADs. 281

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Table 2 (Continued ) Aim

Location

Study design

Participants

Main findings

Sehgal et al. [8]

To determine the role of ADs in decisions to withdraw dialysis in the United States, Germany, and Japan.

Quantitative (questionnaire)

HCP (nephrologists: American, n = 72; German, n = 87; Japanese, n = 73).

30% of American patients had ADs and directives were used in decision making for 3.2% of all American patients. Only 0.3% of German and Japanese patients had ADs and ADs were used in decision making for 0.09% of all German and Japanese patients. American nephrologists (81%) were more likely to stop dialysis in the absence of an AD than German (23%) or Japanese (14%) nephrologists. A noteworthy minority of German and Japanese nephrologists would continue dialysis even if the AD and the family wishes were for the termination of dialysis.

Van Oorschot and Simon [47]

To analyse and compare surveys of German physicians and judges on EoL decision making regarding their attitudes on ADs and on the dying process.

Quantitative (questionnaire)

HCP (doctors n = 727, and judges n = 479).

van Oorschot et al. [48]

To understand patients’ and caregivers’ wishes regarding disclosure, place of death and their use of ADs. To ascertain patients’ concerns about ADs.

State of North RhineWestphalia, West Germany (all nephrologists contacted), East Germany (all medical directors of dialysis units contacted), Ohio, Kentucky, Indiana (US), and all over Japan with a focus on Miyagi Prefecture. Physicians identified from three federal states (State of Bavaria, WestphaliaLippe and State of Thuringia), Germany. Judges from all over Germany. State of Thuringia, Germany

Qualitative

Patients (n = 272) and caregivers (n = 72) Patients (n = 272)

Three attitude models for ADs were identified: the decision model, which emphasises the binding character of an AD; the deliberation model, which puts more emphasis on the communicative aspect; and the delegation model, which regards the AD as a legal instrument. Most respondents belonged to the decision model group, followed by the deliberation model and the delegation model. Most patients desired to die at home. AD use was significantly related to dying in the desired place of death. Nearly a third of patients did not know what an AD was. Awareness was positively related to level of education. A third of patients either had an AD or planned to complete one in the future, in contrast just under a third of patients did not wish to complete an AD. AD use was higher in the US (79%), compared to Germany (18%) and Japan (9%). In Germany there was a greater reliance on physicians to assist in the formation of ADs and less reliance on family members than in the US and Japan. German and Japanese HCPs were less comfortable about assisting with ADs than their American colleagues.

van Oorschot et al. [49]

Voltz et al. [5]

To explore differences in EoL decisions and attitudes towards ADs in palliative care in cross-cultural perspective.

Voltz et al. [50]

To explore cross-cultural differences in the views of palliative care patients in the US, Germany and Japan concerning EoL decisions and their attitudes towards ADs, to investigate the attitudes of experienced HCP towards ADs, and to evaluate the content validity of an instrument to help with the planning of EoL decisions.

Wiese et al. [51]

To determine paramedics’ experiences of palliative medicine, palliative emergencies and knowledge of ADs.

State of Thuringia, Germany

Quantitative (questionnaire)

Specialist palliative care institutions in the US, Japan and Germany (German participating centres in Mu¨nchen, Flensburg, Bonn, Bensberg, Mainz). ‘‘Large urban areas’’ in Germany (Munich), USA and Japan (no further information concerning location).

Quantitative (questionnaire and vignette)

Patients (n = 159) and HCP (n = 93)

Qualitative/ quantitative (questionnaire with some open questions).

Go¨ttingen and Braunschweig, Germany.

Quantitative (questionnaire)

HCP n = 93 (physicians, n = 36 (US n = 8, Germany n = 14, Japan n = 14) and nurses, n = 57 (US n = 18, Germany n = 15, Japan n = 24). HCP (paramedics, n = 162).

There was a high level of agreement from German, Japanese and American physicians with the setting up of an AD in a hypothetical situation and only minor differences in attitudes cross-culturally.

For paramedics who had dealt with emergency palliative situations on duty (91.4%), just under half (47.6%) lacked confidence in the provision of psychosocial care and were insecure concerning their knowledge about ADs (84%). Of those paramedics who had attended a patient who had an AD (72.8%) the document influenced their treatment decision in under half of cases (42.8%).

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Reference

N. Evans et al. / Patient Education and Counseling 87 (2012) 277–288

283

Fig. 1. PRISMA chart detailing the article selection process.

Table 3 Types of subjects studied and the methods used.a Subject

Qualitative

Quantitative

Qualitative and quantitative

Total

Caregivers Patient proxies Patients Healthcare professionals General public

1 1 4 3

0 1 7 17 6

0 0 1 2 3

1 2 12 22 9

Total

9

31

6

46

a

As some studies involved multiple subject groups, the totals for subject groups covered and the types of methods used do not correspond with the number of studies included.

themes by the first (NE) and second (CB) authors [22,23]. Emergent themes were reduced to a number of key themes by consensus in a team meeting (5 participants) [22,23]. Finally, a narrative synthesis of findings concerning the key themes was produced, paying particular attention to commonalities and discordance between studies [22,23]. 3. Results After removing duplicates, a total of 4150 citations from the database search and 85 citations from hand and grey literature searches were screened. Of these 4058 were excluded after reviewing the title and abstract, whereas 177 articles met the

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inclusion criteria for the review on cultural issues and EoL care from Germany. Twenty-eight articles were not available for full text assessment (none of these were original studies or reviews). The full text of 149 articles was examined in more detail. On closer examination, 37 articles were found to be opinion pieces or commentary pieces and were not included. A total of 109 studies and three literature reviews were included in the review on cultural issues and EoL care in Germany (Fig. 1). Of these, 32 studies reported findings concerning ADs (Table 2). The majority of articles were published in the last decade (n = 25), with the remaining studies having been published between 1996 and 1999 (n = 7) (Table 2). Over a third (n = 12) of the included studies were published in German [26,28,30,32– 34,38,45,46,48,49,51], whereas the remaining studies were published in English. Fifteen studies were carried out in the former West Germany [10,18,19,25,28,29,32,34,43–45,5,50,51], nine in the former East Germany [35–37,39–42,48,49], and eight studies included sites in both the former East and West Germany [8,27,38,46,47] or were the result of nationwide surveys [26,30,31]. In addition, ten articles took a cross-cultural approach and compared Germany to other countries, including Sweden, Austria, Russia, the US and Japan (Table 2). The majority of studies (n = 23) were purely quantitative. Just five studies were qualitative and four employed mixed methods (Table 2). The most frequent study subjects were healthcare professionals followed by patients, the general public, and patient proxies. Caregivers (informal caregivers rather than paid healthcare professionals) were only once included as study respondents in their own right (Table 3). Nineteen studies [18,25,27,30,31,34–42,46,47,5,50,51] addressed all terminal conditions, whereas a quarter (n = 8) [19,30,31,43,44,48,49,52] specifically focused on cancer. The remaining studies concerned Amyotrophic Lateral Sclerosis (ALS) (n = 2) [10,29], nephrology (n = 1) [8], neurology (n = 1) [26] and surgical (n = 1) [28] patients. The following four themes were identified from an interpretative synthesis of study findings: awareness, utilization, compliance and bindingness. 3.1. Awareness Patients’ awareness of ADs was addressed in three studies [10,28,49]; these studies revealed that between a third and a fifth of patients did not know what an AD was (30% of cancer patients [49], 27% of ALS patients [10] and 21.3% of surgical patients [28]). Although differences in study populations and methods make comparison difficult, patient awareness of ADs has seemingly increased over time [10,28,49]. The three studies that addressed the question, ‘who should initiate conversations regarding ADs?’ [10,28,44] reported contradictory findings. An interview study of ALS patients and their physicians found that the majority of patients did not want to discuss ADs with doctors; they believed that physicians should only preserve life and preferred that information about ADs be supplied by the hospital administration or health insurance companies [10]. Physicians feared that patients would associate discussion of ADs with imminent death and rejected their routine discussion [10]. In contrast, a questionnaire study of surgical patients revealed that the vast majority (80%) would like their physician to discuss ADs before surgery [28]. A survey of patients, physicians, nurses and healthy controls, however, revealed a tension between the widely held belief amongst all participants (including physicians) that physicians should initiate discussion of ADs, and the reality that most physicians prefer to delegate the task to family and friends, with only a minority (39%) ever having

discussed an AD with a patient [44]. Furthermore, a survey of German, Japanese and American physicians and patients revealed that German patients relied more heavily on physicians for assistance in AD formulation than Japanese and American patients. However, German physicians were less comfortable assisting patients than their Japanese and American counterparts [5]. Reluctance was attributed to the psychological burden of discussing ADs, which entails an inevitable discussion of the condition’s terminal stage [10]. In addition, a survey study of paramedics found that the vast majority were insecure concerning their knowledge of ADs [51]. The difficulties patients have discussing EoL issues were also emphasized [10,33]. 3.2. Utilization The actual use of ADs was a common theme; though, again, differences in study populations and methods make comparison difficult. The prevalence of ADs varied considerably: ranging from 0.3% [8] to 62% [29]. Advance directive use in the general population was low; representative surveys of the general public found AD possession to reach 2.5% in a 2002 survey [46], rising to around 10% in two surveys carried out in 2007 [30,31]. Generally, higher AD use was found in studies that focused on patient groups. One exception was low use (0.3%) amongst dialysis patients in a study published in 1996 [8] (the oldest study to be included in this review). Usage amongst patient groups varied widely (Table 4). Four studies reported that although physicians were aware of ADs and their benefits with regard to strengthening patient autonomy, in practice, they were rarely encountered [10,26,33,44]. A number of studies used multivariate analysis to identify factors associated with AD use. Factors found to be positively associated with possession of an AD included: a desire for autonomy [49]; frequency of pain experiences [19]; experience of a serious illness [19,28,30]; age [31]; being married [28]; and level of education [34,49]. Two studies compared AD use in Germany, the US and Japan. Both found that, in comparison to the US, ADs use was low in Germany and Japan [8,5]. A 1996 survey of nephrologists found that, compared to a third of American patients, only 0.3% of both German and Japanese patients possessed ADs, and these were used to assist in decision-making for 33% of patients who had ADs [8]. Explanations given for low use in Germany and Japan included: different patient characteristics (younger patients in Japan and Germany were said to be less likely to want an AD); a greater reluctance to withdraw treatment in Germany and Japan, decreasing the perceived need for ADs; and a higher respect for patient autonomy in the US entrenched in law [8]. A greater reluctance to withdraw treatments in Germany was also ascribed to a fear of the ‘slippery slope’ towards devaluation of human life,

Table 4 Advance directive use amongst patient groups. Reference

Patient group

Sehgal et al. [8] Borasio et al. [26] Becker et al. [25]

Dialysis patients Neurology patients Patients who died in one hospital Cancer patients Surgical patients Cancer patients

11 17 18

Palliative care patients Palliative care patients ALS patients ALS patients

18 36 40 62

van Oorschot et al. [49] Justinger et al. [28] Sahm and Will; Sahm et al. [19,45] Voltz et al. [5] van Oorschot et al. [48] Burchardi et al. [10] Kuhnlein et al. [29]

% with AD 0.3 4 6.6

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an argument frequently used to explain the atrocities committed under Nazi medicine [8]. A study published two years later, in 1998, examined palliative care patients’ AD use and found the highest use in the US (79%), followed by Germany (18%) and Japan (9%) [5]. The authors attributed the higher prevalence of ADs in the US to public health campaigns that encourage their use. Although the majority of German physicians believed ADs to be useful, low use was attributed to physicians’ feelings of discomfort when talking about them [5]. Four studies reported that a higher proportion of respondents were willing to complete an AD in the future than those who possessed an AD [10,19,28,49]. One study identified a high level of uncertainty about the purpose and scope of ADs [34]; this may, in part, explain the frequent finding that a noteworthy proportion of respondents objected to/rejected the use of ADs: 30% of cancer patients [49]; 33% of ALS patients [10]; 50% of the general public [30]; and 9.7% of surgical patients [28]. Reasons for the rejection of ADs included fears of being pressurized into writing an AD and fears of abuse by relatives [19]. In addition, an interview study identified patients as being either ‘active’ or ‘passive’ in their involvement in decision-making, with many patients believing ADs to be unnecessary [32]. Advance directives are not, however, the only manner in which patients attempt to communicate their treatment preferences in case they lose competency. Assignment of healthcare proxies (Vorsorgevollmacht) and designated guardians (Betreuungsvollmacht) are other forms of advance healthcare planning. Although three studies looked at patients’ awareness of the option of appointing a healthcare proxy [18,28] or healthcare professionals’ opinions of proxies [5], just one study ascertained the use of both ADs and healthcare proxies amongst patients: 6.6% and 22.1%, respectively [25]. 3.3. Compliance Eleven articles explored healthcare professionals’ reported compliance with ADs in a hypothetical situation, often comparing compliance across countries [8,27,35–42,50]. All but three [8,38,50] were based on the same survey (with vignette), conducted 1998–1999, of German, Swedish, Austrian and Russian healthcare professionals [27,35–37,39–42]. These articles described how with more detailed information about patient wishes, treatment was less aggressive and there were fewer decisionmaking conflicts [27,35–37,40–42]. This trend was more pronounced amongst nurses than physicians [36,37,41]. Cross-country comparisons found that German physicians chose more aggressive treatment options than their Swedish counterparts, but less aggressive options than Russian or Austrian physicians [27,40,41]. ‘Patient wishes’ were considered a more important factor in clinical decision-making in Sweden and West Germany compared to East Germany and Austria [36]. Hospital costs and legal concerns were more important in Germany than Sweden [37] (though hospital costs were more important for Russian than German physicians) [42]; this was attributed to a pressure to reduce costs and uncertainty following German reunification [37]. Two articles (published in 1997 [38] and 1999 [27]) compared East and West Germany [27,38]. The first examined the importance of different factors in physicians’ decision-making in the East German state of Mecklenburg and the West German state of Baden-Wu¨rttemberg [38]. Ethical concerns and patients’ wishes (as stipulated in ADs) were found to be the most important factors for physicians from both East and West Germany. The second article compared Rostock and Neubrandenburg (East Germany) and Ulm (West Germany), along with Sweden and Russia [27]. This article revealed that a noteworthy proportion of German

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physicians would choose to disobey a patient’s wish not to be resuscitated as stipulated in an AD (26% of East and 12% of West German physicians) [27]. Also, West German physicians found decision-making more difficult when they had little information about patients’ wishes [27]. East German physicians’ lower level of compliance with patients’ wishes was again attributed to ‘uncertainty after political change’ [27]. Two articles compared the attitudes towards ADs of German, Japanese and American physicians when faced with a hypothetical situation. One study found few cross-cultural variations in attitudes towards clinical decisions: there was high agreement from physicians of all nationalities on the use of, and compliance with, ADs and the authors argue that this points to a universal ‘medical culture’ in which ‘patient autonomy’ is a central tenant [50]. Similarly, another study reported that almost all German, Japanese and American nephrologists would stop dialysis if requested to do so by a patient’s family, provided that the request was supported by the patient’s AD (although American respondents were more likely to stop dialysis in the absence of an AD); the authors of this study did not attempt to explain this finding [8]. One study found that, amongst cancer patients, possession of an AD led to a greater likelihood of the patient dying in his or her preferred place of death. This suggests that physicians both complied with their wishes and these wishes led to the desired result [48]. 3.4. Bindingness Contradictory results were reported concerning the desired level of bindingness of ADs. A questionnaire and vignette study of cancer patients, healthy people, physicians and nurses found that patients’ desired adherence to ADs (in a number of different theoretical situations) was lower than the desired adherence of healthy controls, physicians or nurses, with healthcare professionals favoring the highest degree of bindingness [43,44]. A desire for greater bindingness of ADs was associated with living alone and already having written an AD [43,44]. Similarly, a survey of German physicians and judges found that the majority agreed with a high level of AD bindingness [47]. In contrast, a questionnaire study of patients with ADs found that significantly more terminally ill patients desired a high degree of bindingness of their AD than non-terminally ill patients [18]. 4. Discussion and conclusions 4.1. Discussion The recent developments in Germany that confer ADs legal status have brought the country in line with other European countries: ADs are legally recognized in Austria, Belgium, Finland, Hungary, the Netherlands, Spain, and the United Kingdom and are in the process of becoming legally recognized in Switzerland [2,53]. Indeed, the new law affords ADs great weight as it establishes the giving of treatment explicitly rejected in a patient’s AD as a ‘physical assault’ [13]. The increasing legal recognition of ADs is part of a Europe-wide trend to promote patient autonomy as the main guiding principle in the ethics of patient care. This trend can be seen as part of the process of individualization and secularization of European societies [54]. The reviewed studies provide insight into the German cultural context in which the new law is being implemented. German patients’ reliance on physicians for information about ADs and for assistance when composing them was highlighted. Yet the studies also suggested that German physicians’ experience discomfort when discussing ADs. Cross-cultural studies found German

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physicians to be both less comfortable discussing ADs and less likely to withdraw treatments. Reluctance to discuss ADs on the part of physicians and a lack of alternative sources of information may explain the finding that some patients did not know what an AD was [10,28,49]. Furthermore, the German literature revealed some uncertainties regarding the purpose of ADs and fears of abuse, which may contribute to low use and, in some cases, rejection. Advance directive use varied widely depending on the study population (0.3–62% [8,29]). However, usage was influenced by confounding factors, such as sampling and year of study, that make trends difficult to identify. The highest level of AD usage was reported amongst patients diagnosed as terminal, particularly those with degenerative terminal conditions (40–62% ALS patients [10,29], 18–36% palliative care patients [48,5]). Two representative surveys of the general public demonstrated a four-fold increase in AD use between 2002 and 2007 [30,31,46]. The most recent surveys reported generally low AD usage amongst the general public (around 10%) and a comparatively low use compared to the US (around 20%) [55,56] where patients’ use of ADs is both actively promoted and legally binding. However, the level of usage compares favorably with other European countries: a 2010 representative survey of the Dutch population found that 7% of respondents possessed an AD [57], whereas a 2009 survey of the Spanish general public revealed that just 2% of respondents were found to possess an AD [58], even though Spain has one of the most advanced legal and administrative development of ADs in Europe [59]. Studies rarely explored the use of alternative forms of advance planning, such as healthcare proxies and designated guardians. The only study that examined patients’ use of proxy decision-makers and ADs found that over three-times as many patients had designated a proxy than had written an AD. Therefore, assessing the prevalence of ADs within a study population without considering other arrangements that patients may have made to communicate their wishes, may result in an underestimation of the level of patients’ anticipatory decision-making. Furthermore, several studies indicated that many people who were yet to write an AD had plans to formulate one in the future. This finding indicates that there is potential for their increased use, perhaps through targeted public health campaigns. Studies addressing healthcare professionals’ compliance with patients’ wishes as articulated in ADs revealed that the greater the level of information concerning patients’ wishes, the higher the compliance with those wishes. These findings encourage the use of disease specific ADs, which are more likely to describe in detail patients’ specific treatment options. Studies published in the early 2000s highlighted some differences in attitudes of physicians from the former East and West Germany. The greater proportion of East German physicians who reported that they would not comply with a patient’s AD in a hypothetical situation was ascribed to ‘uncertainty due to political change’. Further research is needed to explore whether such differences are solely an artifact of German reunification or whether they are indicative of more paternalistic attitudes of East German physicians. Furthermore, none of the studies that compared the attitudes of East and West German physicians obtained information about where the physicians were from or where they had trained. Considering that there was considerable movement of physicians between East and West Germany after reunification [60], as well as a greater influx of foreign trained physicians from Eastern Europe to the East than the West of Germany [61], it is perhaps premature to draw conclusions based solely on place of practice. A particularly interesting aspect of research on ADs is the degree to which people believe they should be legally binding.

Physicians and judges were found to desire a high degree of bindingness to remove any legal uncertainties related to their use. The two studies that reported patients’ desired level of bindingness of ADs, however, gave contradictory findings. It is, therefore, essential to ensure that patients and the general public understand the level of bindingness of an AD and that, as a result of the September 2009 changes to the German Civil Code [13], physicians are legally obliged to comply with ADs. Of the reviewed studies, the majority was quantitative in their approach, the result of surveys or the retrospective review of patient records, whereas relatively few studies used qualitative or mixed methods. Moreover, the experiences and opinions of healthcare professionals were most frequently sought. There is a need for further research on the experiences and opinions of patients and, particularly, caregivers; caregivers were only once included as study respondents in their own right (as opposed to being studied as patient proxies). The paucity of research on the role of caregivers and family members in decision-making can be seen as a reflection of the lack of recognition given to patients’ social context and, perhaps, as a negative consequence of the privileging of the principle of self-determination over other factors. Considering the paucity of research on patients and caregivers, both surveys and in-depth qualitative research that explores patients’ and caregivers’ attitudes towards, and experiences of, ADs would be valuable additions to the literature. All the studies included in this review were published before the new law took effect. Further research, therefore, is needed to examine whether these legal changes have any effect on AD use and physician compliance. This critical review provides considerable insight into issues affecting AD use in Germany. There is however a need for more comparative cross-country research to fully comprehend the influence of legal, social and cultural factors on the use of ADs in Europe. 4.1.1. Limitations Research on ADs comprised the largest distinct sub-group of studies indentified from a systematic review of the literature on culture and EoL care from Germany. The studies presented in this article comprise a critical review of the literature on AD in Germany; the search terms used to retrieve articles were not focused specifically on ADs, although all studies concerning ADs identified through the database, reference and hand searches, and those recommended by country experts, were included. A systematic review of studies on ADs in Germany might have identified a distinct but related body of literature. 4.2. Conclusion Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding their desired level of bindingness. 4.3. Practice implications Uncertainty regarding who should initiate discussion of ADs and physician discomfort in talking about them can hamper patient–physician communication. Low awareness, difficulties in communication and fears and uncertainties surrounding ADs must be addressed if AD use is to increase. In the US, healthcare institutions are required to routinely provide adult patients with information about ADs [62]. Such an initiative, if implemented in Germany, could increase awareness of ADs, provide impetus for physicians to initiate difficult conversations and reduce some of the fears and uncertainties surrounding ADs. Furthermore, it is

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essential that physicians are provided with appropriate training on how to discuss difficult or uncomfortable topics with patients. Compliance with ADs will hopefully be improved by the recent legal changes; however the promotion of disease specific ADs is also recommended as greater physician compliance was found to be associated with more detailed information about patients’ treatment wishes. Conflict of interest statement The authors declare that there is no conflict of interest. Acknowledgements PRISMA is funded by the European Commission’s Seventh Framework Program (contract number: Health-F2-2008-201655) with the overall aim to co-ordinate high-quality international research into end-of-life cancer care. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aim to reflect the preferences and cultural diversities of citizens, the clinical priorities of clinicians, and appropriately measure multidimensional outcomes across settings where endof-life care is delivered. Principal Investigator: Richard Harding. Scientific Director: Irene J. Higginson. In recognition of the collaborative nature of PRISMA, the authors thank the following PRISMA members: Gwenda Albers, Barbara Antunes, Ana Barros Pinto, Dorothee Bechinger-English, Hamid Benalia, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noe¨l Derycke, Martine de Vlieger, Let Dillen, Julia Downing, Michael Echteld, Dagny Faksva˚g Haugen, Lindsay Flood, Nancy Gikaara, Barbara Gomes, Sue Hall, Stein Kaasa, Jonathan Koffman, Pedro Lopes Ferreira, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Tony Powell, Miel Ribbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart van den Eynden, Jenny van der Steen, Paul Vanden Berghe, Trudie van Iersel.

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