Palliative Care in MS

Epub ahead of printHigginson et al. Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: a randomised fast-track trial to test timing of referral and how long the effect is maintained. Postgrad Med J. 2011 Oct 6.

Aims: The investigators examined (1) whether the timing of referral to short-term palliative care (PC) affected selected outcomes, and (2) the potential staff-modifying effect of the short-term PC intervention (whether the effects were sustained over time after PC was withdrawn).

Methods: PC comprised a multiprofessional PC team that provided, on average, three visits, with all care completed. Outcomes were a composite measure of five key symptoms (pain, nausea, vomiting, mouth problems and sleeping difficulty) using the Palliative care Outcome Scale-MS Symptom Scale, and care giver burden was measured using the Zarit (Care Giver) Burden Interview (ZBI).

Results: 52 patients severely affected by MS were randomised to receive PC either immediately (fast-track group) or after 12 to 14 weeks (control group). Patients had a high level of disability (median EDSS = 8). Following PC, there was an improvement in Palliative care Outcome Scale-MS Symptom Scale score and ZBI score. A higher rate of improvement in ZBI score was seen in the fast-track group. 

Conclusions: Receiving PC earlier has a similar effect on reducing symptoms, but a greater effect on reducing care-giver burden, compared to later referral. The effect of PC is maintained for 6 to14 weeks after withdrawal but then appears to wane.

“This study demonstrates that in MS’ers with severe disability benefit from early referral to the palliative care team despite MS not being a terminal illness. It is important to note that care-givers appear to benefit the most from palliative care input.”

“This is an important study and demonstrates the need to involve additional healthcare professionals, with complementary skills, early on when managing MS’ers with severe disability.”

“I would like to thank the researchers for taking on this difficult piece of work.”

2 thoughts on “Palliative Care in MS”

  1. When MS causes severe disability it takes away independence, dignity and impacts terribly on the patient's family. Imagine being peg fed, hoisted out of bed, unemployed etc etc. Why would I (or anyone) want this? Palliative care can be incredibly expensive and while seeking to make the patient more comfortable is really only prolonging suffering. We really need a debate on what patients (some) really want. Doctors in partnership with patients and families need to offer real choice. There's no moral argument – that was lost when an individual was cruelly struck down by this disease.

  2. At EDSS 8, I have to agree with the above poster. You are dealing with someone who has been ill for 15, 20 or 25 years. Literally nothing to look forward to except the end. Really need treatments to prevent this dreadful scenario. I know you are well aware of this Prof G and doing your best.

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