This survey aimed to evaluate critical attitudes and beliefs of German palliative care professionals towards guidelines. We found that the individual and person-centred approach in palliative care does not automatically contradict the use of guidelines. Identified barriers and critical attitudes relate more to the quality and the implementation of guidelines in general. We believe that it is easier to overcome these barriers rather than a general negative attitude that the palliative care concept is not in accordance with the use of guidelines.
Prevalence of critical attitudes and beliefs
Our study on palliative care professionals shows an overall similar dominance of positive attitudes and beliefs concerning guidelines compared to results found in other studies outside palliative care [
14,
16‐
29], which focus on physicians [
14,
16‐
18,
23,
25‐
32], nurses [
21,
22] or both [
19,
20,
24]. We did not find any data published for palliative care professionals’ attitudes towards guidelines in general.
The high scepticism about the quality of guidelines in general and the high proportion of undecided professionals in this topic underscores the need to make the process of the development of the new German guideline on palliative care for adults with incurable cancer transparent. More than 40% of participants in our survey agreed that the independence of some authors is questionable; this fits in the picture found by Butzlaff et al. [
27] who report in a national German survey among ambulatory care physicians that the acceptance of guidelines from governmental institutions was substantially lower than from physician networks or medical societies. Earlier studies associated guideline adherence with participation in guideline construction [
33]. Since the new guideline was developed by an interdisciplinary team from over 50 different institutions, with special emphasis on its evidence- and consensus-based character, a good balance of 120 practical and theoretical experts and the goal of regular updates, we think that these scepticisms can be reduced.
A high proportion of palliative care professionals had reservations about the transfer of guidelines into practice. Forty-one percent had general problems in the application of guidelines, the main specific doubt was the difficulty to change already existing routine treatments (57%). Other doubts regarding practical aspects of guideline implementation were not assessed, but lack of time and medical resources were reported by others [
23,
25,
29]. In an online survey from Estonia, Taba et al. [
29] showed that time was the barrier identified by most physicians (42%), followed by lack of medical resources for implementation (32%).
Although there was relatively little fear that guidelines restrict the palliative care professionals’ own thinking and questions their competence there were major concerns about their autonomy: More than one third of palliative care professionals reported fear that guidelines are a kind of “cookbook” and one fifth that they restrict their therapeutic freedom. In a review by Farquar et al. [
19], similar results were found for “cookbook medicine” (34%) and higher for physician’s autonomy (34%). Most studies from the US, Canada and Australia [
32,
34‐
37] show less, whereas studies from Germany show even higher concerns [
14,
16] compared to our study, with an exception by Butzlaff et al. [
27] (28% for “cookbook medicine”). An essential issue when implementing guidelines is therefore clarification what guidelines are: they are recommendations for action and “systematically developed statements which reflect the present state of knowledge to assist health professionals and patients in decision-finding for an adequate care in specific illnesses” [
38]. They act as a guidance which can be altered in justified circumstances [
39].
Because of its holistic-philosophical approach and the so far limited use of evidence-based recommendations a perceived discrepancy between values in palliative care and guidelines would have been one of the most difficult barriers to respond to. Nevertheless, the majority of palliative care professionals had little concern that guidelines in palliative care contradict the philosophy of palliative care.
Another aspect of acceptance of a guideline in palliative care could be general stigmata associated with palliative care in professionals outside classical palliative care institutions: A survey of the National Comprehensive Cancer Network in the US showed that “attitudes towards palliative care” are one of the major barriers for implementing clinical practice guidelines for palliative care in their member institutions [
40]. In addition, Hui et al. [
41] showed that an important clinician-related barrier is the stigma associated with the service name “palliative care”.
Stratification by profession and medical specialisation
Differences between health care professions and various medical specialties towards guidelines in general have been described by others, with nurses [
20,
24] having more positive attitudes than physicians and significant differences between general physicians and other medical specialists, but the direction of these differences was inconsistent [
18,
29,
42].
In a national telephone survey with 511 participants, Butzlaff et al. [
27] reported that German general practitioners agreed significantly more often with the usefulness of guidelines as a basis for patient care than specialists. In our study, we neither found relevant differences between physicians, nurses and other professions nor between physicians’ specialisations, with the exception of oncologists: they have a more positive attitude towards guidelines probably due to the fact that they are more used to guidelines [
43]. Whether there are relevant differences in the use of guidelines and knowledge about topics addressed in the new guideline on palliative care is subject of further studies.
Strengths and limitations
Although there were a number of quantitative surveys published since 2000 on health professionals’ attitudes towards guidelines in Asia [
23], Australia [
44], the US and Canada [
20,
24,
32,
34,
45], and Europe [
18,
21,
22,
25,
29,
46], there were only four nationwide studies on health professionals’ attitudes towards guidelines published in Germany [
16,
26,
27,
47]. To our knowledge, this was the first study investigating palliative care professionals’ attitudes. In addition, we investigated attitudes of different professions and specialities so that comparisons between professional groups were possible and – in case of relevant differences – could be answered with restricted and tailored implementation strategies.
The relatively low response rate of 21.5% as calculated by the formula of the American Association for Public Opinion Research [
15] can be judged as conservative, since it considers all non-respondents as if they had received and read the invitation email which is certainly only partly correct. A less conservative approach would lead to a slightly higher, but still low response rate of approx. 30% [
48]. Nevertheless, the response rate is comparable to other online surveys among health professionals [
49,
50] and to other German surveys [
14,
16,
27,
51,
52]. A low response rate does not automatically translate into a low validity of survey results unless non-response bias was adequately considered [
50,
53]. A comparison of all registered 4961 member of the DGP regarding routinely existing data, such as age, gender and profession, showed that the survey participants did not differ significantly in age and gender distribution and proportion of participating profession (data not shown here). The high cooperation rate and the low refusal rate also demonstrate that addressed members usually had no problem to complete the whole questionnaire as soon as they have clicked the link.
Generalisation of our results on all professionals working in the field of palliative care is difficult and there are two uncertainties: first, professionals in palliative care who are not members of the DGP and therefore were difficult to reach might have less positive attitudes towards guidelines than those organized in the DGP. Second, there is a variety of other medical specialisations working in generalist palliative care without having a specific qualification; this group might have more positive attitudes towards guidelines since they are used to the existence of guidelines through their originate professional society.