Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach. Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes. A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively. Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively. Consensus was reached among all respondents (100%) defining the term "severely affected": 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) "very important." The workshop documented the paucity of home visits and specialized MS care in nursing homes. Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS.

Objectives To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life. Design Cross-sectional postbereavement survey. Setting Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany. Participants 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded. Results For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71). Conclusions Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements. Trial registration number DRKS00011925.

Patients severely affected by multiple sclerosis (MS) have a large range of unmet needs. Although initially counterintuitive, specialized palliative care (PC) may be beneficial for these patients and their relatives. PC has advanced greatly in recent years, yet it is still predominantly tumour patients who profit from this. For MS, a first randomized phase II trial has already demonstrated significant benefits for patients and their caregivers when PC was included in their care. However, there are barriers: neurologists not convinced about PC, or PC not taking on MS patients. Studies have shown that misunderstandings and a lack of information among healthcare professionals about the roles and services of PC for MS are still prevalent. This topical review will give an overview of the unmet needs of patients as well as the possible benefits and barriers of PC for MS, and will describe models of services on how to “open locked doors”.

To individually plan end-of-life care, open communication about a person’s preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person’s underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting “early,” including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.

Background: Being severely affected by multiple sclerosis (MS) brings substantial physical and psychological challenges. Contrary to common thinking that MS is not lethal, there is a higher mortality risk in patients also reflected in alarming rates of assisted suicide, and – where possible - euthanasia. Objective: Analyzing independent variables promoting suicidal ideation in severely affected MS patients. Design: A self-report questionnaire with 25 needs categories including one self-assessment item “prone to suicidal ideation” was applied. Setting/Subjects: Included were patients reporting feeling subjectively severely affected by MS. Of 867 patients addressed, 573 (66.1%) completed the questionnaires. Measurements: 32 items being potential risk factors for suicidal ideation were tested for statistical significance using a multivariate logistic regression model with stepwise, backward elimination procedure. Results: 22.1% of 573 patients (median age 51, range 20–83) had suicidal ideation. 48.4% suffered from secondary progressive, 24.7% from relapsing-remitting and 21.9% from primary progressive MS. A set of six statistically significant criteria for suicidal ideation were found. Three items were risk factors for suicidal ideation: the extent to which MS affects leisure time ( p < 0.001), depression ( p < 0.000), and feeling socially excluded ( p < 0.002). Three items reduced the odds of suicidal ideation: having a purpose in life ( p < 0.000), being productive ( p < 0.000), and having comfort in faith and spiritual beliefs ( p < 0.024). Conclusion: This study identified potentially modifiable factors that may help preventing suicide in people with MS. Integrating palliative care (PC) with its multidisciplinary approach could be beneficial to reduce patient's burden.