"Good idea but not feasible" – the views of decision makers and stakeholders towards strategies for better palliative care in Germany: a representative survey

BACKGROUND: Statements on potential measures to improve palliative care in Germany predominantly reflect the points of view of experts from specialized palliative care organizations. By contrast, relatively little is known about the views of representatives of organizations and institutions that do not explicitly specialize in palliative care, but are involved to a relevant extent in the decision-making and policy-making processes. Therefore, for the first time in Germany, we carried out a representative study of the attitudes of a broad range of different stakeholders acting at the national or state level of the health care system. METHODS: 442 organizations and institutions were included and grouped as follows: patient organizations, nursing organizations, medical associations, specialized palliative care organizations, political institutions, health insurance funds and others. Using a standardized questionnaire, the participants were asked to rate their agreement with the World Health Organization's definition of palliative care (five-point scale: 1 = completely agree, 5 = completely disagree) and to evaluate 18 pre-selected improvement measures with regard to their general meaningfulness and the feasibility of their introduction into the German health care system (two-point scale: 1 = good, 2 = poor). RESULTS: The response rate was 67%. Overall, the acceptance of the aims of palliative care in the WHO definition was strong. However, the level of agreement among health insurance funds' representatives was significantly less than that among representatives of the palliative care organizations. All the improvement measures selected for evaluation were rated significantly higher in respect of their meaningfulness than of their feasibility in Germany. In detail, the meaningfulness of 16 measures was evaluated positively (70–100% participants chose the answer "good"); for six of these measures feasibility was evaluated negatively (0–30% "good"), while for the remaining ten measures feasibility was evaluated inconsistently (31–69% "good"). CONCLUSION: The reason why potentially meaningful improvement measures are considered to be not very feasible in Germany may be the existence of barriers resulting from the high degree of fragmentation of health care provision and responsibilities. In overcoming these barriers and further improving palliative care it may be helpful that the basic understanding of the palliative care approach seems to be quite homogenous among the different groups.