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The NHS Executive
guidance on the needs assessment of palliative care groups those
conditions requiring palliative care as follows:
- Progressive
cancers. The main categories are cancers of lung, trachea, bronchus,
gastro-intestinal, genito-urinary, female breast, ear, nose
and throat, lymphatic, leukaemia and haemopoetic, brain and
other cancers, including those which present with metastasis
and where the primary cancer is not known.
- Progressive
non-malignant diseases, which can have a palliative period.
These include diseases of the circulatory system (most commonly
heart diseases, such as chronic heart failure, and cerebrovascular
diseases, such as stroke); diseases of the respiratory system
(most commonly chronic obstructive pulmonary disease), diseases
of the nervous system and sense organs (most commonly motor
neurone disease, multiple sclerosis, ALS), dementia, and AIDS/HIV.
- Children's
terminal illnesses, and hereditary diseases, including degenerative
disorders such as muscular dystrophy and cystic fibrosis. (This
last group is beyond the scope of this report and needs separate
consideration.)
This would
be a sensible way to group the data.
If you are
unable to get information on the actual number of deaths, the
Health Care Needs Assessment for Palliative and Terminal Care
provides information on the average number of cancer and non cancer
deaths per million population in developed populations. Generally
speaking, for every 100,000 people in a population with the same
age and gender distribution as the UK, there will be 1,000 deaths
per year. Of these around 1 in 4 will be from cancer. The actual
numbers of deaths will of course depend on the age distribution
of the population (there are more deaths among older age groups),
and other local factors.
Each disease
would have roughly three groups of patients:
- Those
who had a palliative period of advancing, progressive disease;
- Those
who had stable or no disease, relatively few symptoms but then
deteriorate or die suddenly (e.g. from a myocardial infarct);
and
- Those
who suffered from chronic disease, where the disease was not
clearly progressing, but who might have periods of progression
and symptoms where they would benefit from palliative care,
and then periods of remission.
Once the numbers
of deaths is obtained it is then possible to begin to estimate
the numbers of patients who will die, and therefore require end
of life and palliative care. Among cancer patients the period
of progression is most clearly predicted and many would fall into
category (1). However, the other conditions, such as circulatory
disease, would include patients in all three categories. Patients
may change from one category to another, and spend different periods
in each category, and thus with different needs.
The natural
history of different non-cancer conditions towards the end of
life is only now beginning to be better researched. For example,
stroke is a major cause of death with a mortality rate of 30%
that may be as high as 60% among patients with severe strokes.
The causes of mortality include cerebral edema and herniation,
co-morbidity, infection, and other stroke related complications
despite active medical intervention. Death in most stroke patients
is not sudden but occurs a few days to a few weeks after the acute
episode. 20% of people who suffer a stroke die within the first
month.
Note also
that for some conditions, such as neurological conditions like
ALS (motor neuron disease), the trajectory of illness is longer
than that of many common cancers, such as lung cancer. Thus patients
with slowly progressive conditions may need care for longer than
cancer patients. This demonstrates the importance of distinguishing
incidence (indicated here by number of deaths) from prevalence
(frequency of problems).
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