Abstract
BackgroundIn 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.Methods15 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.ResultsMS 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.ConclusionMS 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.
Highlights
In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial
Categories According to findings of this study, associations with palliative care by severely affected MS patients and health professionals caring for such patients can be classified into four main categories: ‘uncertain knowledge’, ‘life limitation’, ‘excess’ and ‘chance’ all of which could be further divided into subcategories (Figure 1)
Main category uncertain knowledge Of the remaining 13 patients, six had no idea what palliative care meant (“foreign word”) and seven patients had a rather vague notion: One patient speculated that palliative care meant “acute treatment of cancer patients”; for another it was support for chronically ill patients, while others guessed that it was “alternative”, “traditional”, or “ancient” medicine
Summary
In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. Half of all MS patients die from MS itself or related with the palliative care approach, neither through their general providers nor via specialized palliative care services and institutions This is possibly because it appears to be counterintuitive to many providers, in contrast to the UK’s pioneering role in implementing palliative care for patients with neurological long term conditions [11,12,13,14,18,19,20]. Concepts designed to bring the palliative care approach to Germany’s MS patients must take into consideration the attitudes of both patients and associated health professionals This qualitative study aimed to investigate how severely affected MS patients and health professionals in Germany understand palliative care, what they associate with this approach and if, or how, they feel palliative care might help these patients
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