“Since producing my holistic approach to MS tube map below it has had over 1 million views on SlideShare and I have had many requests for other people to use and adapt it for their own use. I personally think it is out of date and in a serious need of an update; unfortunately, I don’t have the time at present but made do in the near future. A particular MS Society asked if they could use the map but wanted to remove the ‘Terminal Line’ as it mentions palliative care and assisted suicide; they didn’t want to expose newly diagnosed MSers, and those with minimal disability, to the harsh reality that MS itself can lead to death. Most mortality studies estimate that between 50-75% of MSers will die from MS-related complications. Do you think it is right to shield MSers from this information?”
“The study below focuses on an unmet need in MS services, i.e. palliative care. Although this is only a pilot study of a palliative care hotline it addresses a unmet need for MSers with advanced disease and their families. A simple call and assessment on the phone identified that 10 out of 15 callers were deemed eligible for palliative care and appropriately referred. In the UK we screen our patients and refer them to the palliative team for assessment if we think is necessary. The problem with palliative care services in the UK is that they tend to only want patients with an estimated life expectancy of less than 6 months and the service tends to be dominated by cancer patients with pain relief being high on the agenda. This is why a bespoke MS palliative care service is needed with a different life expectancy cut-off; i.e. I would guess 2-years would be more appropriate for MS. Why? A large part of palliative care, is respite care, that gives their carers much needed time off. Being a full-time carer of someone with MS, or any other disabling disease, is a 24-hour job and one of the most stressful on the planet. The 2-year time window will also allow an appropriate time to reflect on the situation and discuss and put in place advanced directives. These are essentially ‘living wills’ that instruct the medical team on how to treat a patient when they are admitted to hospital with a life threatening MS complication, for example aspiration pneumonia. It perfectly reasonable to state in your living will that if this situation arises you don’t want assisted ventilation, nor do you want to be admitted to an intensive care unit. Similarly, you can state you don’t want to be tube fed. Do you have a living will? Do you think you need one?”
Epub: Knies et al. A palliative care hotline for multiple sclerosis: A pilot feasibility study. Palliat Support Care. 2014 Sep 5:1-8.
Objective: Research findings suggest that MSers severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counselling hotline for severely affected MSers and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study.
Method: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semi-structured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care).
Results: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers.
Significance of results: Based on our pilot feasibility study, the hotline seems to be a valuable service for MSers severely affected by MS and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.