Memorandum by The Stroke Association (PC
1. The Stroke Association is the country's
leading charity solely concerned with stroke and provides support
to people who have had a stroke, their families and carers. We
campaign, educate and inform to increase knowledge of stroke at
all levels of society. We run Dysphasia Support Services and Family
Support Services locally and provide a national helpline. We fund
and promote research and campaign for a higher priority to be
given to stroke prevention, treatment, care and research.
2. Palliative therapy is designed to reduce
the intensity of uncomfortable symptoms but not produce a cure.
There is, at present, no cure for a stroke and therefore treatment
is aimed at rehabilitation and therapy.
3. Some strokes are small and patients can
make a good recovery. A large stroke is potentially devastating,
as if much brain function is lost, the rest of the brain is unable
to take over and the patient may die or be left with long-term
4. Some 55,000 patients die every year from
stroke, which is the fourth biggest killer in the UK. Research
outlined in an article in the journal Stroke has highlighted
the lack of palliative care given to non cancer patients and there
would appear to be little palliative care given to those with
stroke. "The needs of and care received by those patients
who die of stroke have received little attention. There is some
evidence that general practitioners in England would like specialist
palliative care services to be extended to encompass stroke patients."
This would indicate that this was not the case in 1995 and there
is little evidence to suggest that the position has changed nine
5. One of the after effects of stroke is
central post stroke pain. Sometimes referred to as thalamic pain,
it is much more common than previously thought. This type of pain
can be severe, interfering with good quality life and bringing
real distress to a stroke patient, their families and carers.
Pain may not appear at once but can occur up to two years following
a stroke. It affects all of the stroke side and is unremitting
in character. It does not respond to the usual pain relief programmes,
as the brain is telling the body that there is pain, rather than
there being a physical cause for the symptoms. A study found that
pain relief is an important aspect of hospice and palliative care
and it may be this aspect of care from which a stroke patient
could gain benefit.
6. In addition many stroke patients have
other symptoms towards the end of their life. In one study at
least half the patients were reported to have experienced pain,
urinary incontinence, low mood and mental confusion in the year
before death. Breathlessness, insomnia, loss of appetite, constipation
and loss of bowel control were reported to have been experienced
by at least a third. Many were reported to have had these symptoms
for at least six months.
7. About 24% of people die within a month
of having their stroke
and it is important that they are also ensured quality of life
during their hospital stay. The NSF for Older People states that
where recovery is not possible, "The principles of palliative
care should inform the care plan, with priority being given to
supporting the patient to die with dignity, without unnecessary
suffering, and in the place of their choice wherever possible."
Therefore general hospital staff must be aware of the need for
palliative care and examples of best practice. It must be recognised
that palliative treatment should not just be for the long-term
terminally ill but must also take into account the many people
whose life will end soon after a stroke.
8. Quality at the end of life is equally
important to stroke patients, their families and carers as to
those with terminal cancer or other fatal illnesses. However the
evidence would suggest that few stroke patients receive palliative
care and The Stroke Association believes that more research should
be done into its effectiveness for those with stroke.
1 Addington Hall et al, Symptom Control, Communication
with Health Professionals, and Hospital Care of Stroke Patients
in the Last Year of Life as Reported by Surviving Family, Friends
and Officials, Stroke Vol 26, No 12 December 1995 p 2242-2248. Back
Charles Woolfe, The Burden of Stroke, Charles Woolfe, Tony
Rudd, Roger Beech (eds) Stroke Services and Research; An Overview,
with Recommendations for Future Research, The Stroke Association