Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study
1 Department of Palliative Medicine, University Hospital of Cologne, Kerpener Strasse 62, 50924 Cologne, Germany
2 Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMHR), Faculty of Human Science and Faculty of Medicine, University of Cologne, Eupener Strasse 129, 50933 Cologne,Germany
3 Center for Integrated Oncology Cologne/Bonn, University Hospital of Cologne, 50924 Cologne, Germany
4 Center for Clinical Trials, University Hospital of Cologne, 50924 Cologne, Germany
BMC Palliative Care 2014, 13:11 doi:10.1186/1472-684X-13-11Published: 19 March 2014
In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic.
15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis.
MS patients were mostly unfamiliar with the term “palliative care” or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients’ complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients.
MS patients’, and health professionals’ restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.