Dr Jonathan Koffman Cicely Saunders Institute Department of Palliative Care, Policy & Rehabilitation King's College London

1. WHO Collaborating
Centre
The long view: what role for
palliative care for those with MS
and their families?
Dr Jonathan Koffman
Cicely Saunders Institute
Department of Palliative Care, Policy & Rehabilitation
King’s College London
www.csi.kcl.ac.uk
@jonathankoffman

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Klimt: Death and Life, 1910

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Dying is a very dull, dreary affair.
And my advice to you is to have
nothing whatever to do with it.
-W. Somerset Maugham
0%
100%

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Cancer
Adapted from: Murray, S. A et al. BMJ 2008;336:958-959
Sudden
death

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a good death?

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‘I hope to arrive to my
death late, in love, and a
little drunk... (Love her
Wild, Atticus, 2017)

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What matters most to patients? (Singer JAMA 1999,
Steinhauser JAMA 2000, Heyland CMAJ 2006, Parker
JPSM 2007, Dy JAGS 2008, Belanger Pall Med 2011, etc.)
• Good pain and
symptom control;
• Family support and
reduction in burden
on family;
• Having priorities and
preferences listened
to and accorded with;
• Achieving a sense of
resolution and peace (time
and support for
preparation);
• Well-coordinated and well-
integrated care, with
continuity of professionals

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© Emilio Labrador

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So how do we help make
this happen?
Palliative care represents
a solution

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Her Soul’s visit Lynn Randolf (artist in residence MD Anderson Cancer Center)

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• Improved symptoms
• Fewer
hospitalisations
• Less aggressive care
• More home deaths
• IMPROVED
QUALITY OF LIFE
Standard
cancer care
Palliative
care
Standard
cancer care
Temel et al. (2010) Early palliative care for
patients with metastatic non-small-cell lung
cancer. N Engl J Med
• IMPROVED SURVIVAL

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Between 1993-2010, 125,242 deaths where UCD was
PD, 23,501 where UCD was MS and 27,030 where UCD
was MND
MS can be a life-limiting disease

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•Multiple sclerosis
has worst life
expectancy of all
neurological
conditions - with
73% of PwMS
dying before 75
years

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”Discomfort was not necessarily greatest in
those dying from cancer”

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Need for evidence for the effectiveness of
palliative care

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• Neurology services varied in number and type of clinics provided.
Integration most developed in MND, followed by Parkinsonism (IPD,
MSA & PSP) and least in MS
• Number of neurology patients per annum receiving specialist palliative
care reflected these differences in integration (range: 9-88 MND, 3-23
Parkinsonism, and 0-5 MS)

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• World’s first and largest, multi-centre trial of
palliative care in non-cancer population
• Inclusion of 5 different long-term neurological
conditions
• 350 patients and 229 caregivers
• Additional qualitative component:
– Identified components of care most
valued by patients and caregivers
– Identified gaps in service provision
– Identified potential for reducing use of
hospital services and lowering costs
OPTCARE Neuro

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Fancy a 24-hour job with no pay, no training
and no holidays? Most carers don’t either

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Advance care planning, ceilings of treatment
and involvement of PwMS
Opportunities for open bi-
directional communication about
clinical uncertainty and the future
often prescribed in sub-therapeutic
doses

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• A problem of hubris - we can’t fix what sometimes
can’t be fixed
– some people with MS will die from MS
• We can, however, help people find purpose for living
against a backdrop of progressive illness
– would benefit from a complimentary narrative (palliative
care)
– must be grounded in rigorous evidence-base
• This means we must do more research that identifies
benefit and exposes harm. This will cost money, but
can we afford not to?
In summary

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Klimt: The Tree of Life, 1905