Memorandum by The Cicely Saunders Foundation
The Cicely Saunders Foundation is an independent
charity with a unique mission, to improve care at the end of life
by discovering ways to improve the care and treatment of all patients
with progressive illness and to make such high quality palliative
care available to everyone who needs itbe it in hospice,
hospital or home.
There are many gaps in our knowledge where research
is desperately needed to improve the care of patients towards
the end of life. The most urgent areas we believe are:
Discovering the most effective and
cost effective ways of enabling patients to be cared for in their
place of choice, usually at home.
Developing models of care for patients
who have illnesses other than cancer, particularly neurological
diseases, HIV/AIDS which is not responding to the new combination
therapies, renal failure, heart failure, respiratory failure.
Discovering better ways to treat
some of the complex and highly prevalent symptoms, for example,
breathlessness, weakness and cachexia, neuropathic pain, and other
pains that do not respond to the normal morphine like drugs.
Discovering the best ways to change
societal attitudes regarding the end of life and developing new
initiatives that educate the public, particularly in spiritual
and ethical aspects.
Providing appropriate support for
the increasing numbers of older people who will have complex rather
than single conditions and who will need palliative care.
The attached documents
provide a more detailed analysis of the current situation for
palliative care now and in the future for the UK and other European
countries. Some key issues are:
Worldwide populations are ageing
and the cause of death is increasingly from chronic illnesses
where there is a slow decline. This will increase the need for
The distribution of death by age
group over the years shows that more and more those people who
die are aged 75 and over (this is a good tribute to improving
longevity, but brings with it its own problems).
This means that in the future people
will die from a combination of rather than single illnesses and
will have complex symptoms and problems which require treatment.
There is evidence of under assessment
and under treatment in palliative care for older people across
There is good evidence that, despite
preferences to the contrary, the majority of people die in hospitalthe
hospital death rate is higher in the United Kingdom than in the
United States, Germany, the Netherlands, Switzerland, France and
There are great geographical variations
in the percentage of cancer deaths occurring at home with variations
between some electoral wards of between 11 and 70% of cancer deaths
occurring at home. Only 30% of this variation can be explained
by demographic and social factors, such as age and deprivation.
Symptoms like breathlessness are
among the most feared by patients and families, determine whether
it is possible for patients to remain at home (urgent admissions
are caused by inability to control breathlessness) and cause great
distress to both patients and families and care givers. The prevalence
of breathlessness increases as death approaches and can be as
high as 70%. Despite this there are very few known effective treatments
and most of the drugs and treatments proposed, for example oxygen
or small doses of morphine, have been used for a very long time
with no real developments.
The culture and ethnic background
in the United Kingdom is changing and there is very little known
about how to provide services for people from different cultural
groups. Yet there is evidence that such individuals often miss
out on the best in care.
Despite these enormous needs the
United Kingdom spends only 0.18% of its total government and charitable
funding for cancer research on end of life and palliative care.
It is, therefore, not surprising that little progress has been
Solutions that we propose are as follows:
1. Make palliative care an important public
health issue, it has a role in preventing suffering and ill health
among carers, including in bereavement, and preventing inappropriate
hospital admissions. There needs to be palliative care as part
of every Primary Care Trust and strategic health authority plans
and there should be efforts in undergraduate, postgraduate, as
well as public education.
2. Invest in research to discover the most
effective and cost-effective solutions. Throwing money at developing
services and approaches which are not known to be effective will
not give us a solution for the 21st Century. Home care is a god
example of this. Despite recent efforts the proportion of deaths
occurring at home is now decreasing rather than increasing. Service
or treatment developments should be research based and be evaluated
as they are developed.
3. Those funding research should monitor
the proportion of funds in any disease area directed to palliative
care and invest in research to redress the imbalances.
4. Training of the work force is required
at both undergraduate and postgraduate level.
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