|
Introduction
One of the defining trends in
modern health care is the growing
interest of patients in their own
well-being. With the spread of health
care information via the internet,
the emergence of powerful patient
advocacy groups, and a general awareness
of healthy living, the patient has
ceased to be just a passive recipient.
A central theme of this report
is that we need to extend the Government’s
concept of the expert patient –
everyone should be better informed
or more expert.
There is much talk of ‘the
expert patient’, ‘the
informed patient’; and ‘the
doctor-patient partnership’,
in which doctor and patient decide
together what to do for the best.
Partnership is perceived as the
third way – as steering a middle
course between the paternalistic
model in which the doctor decides
what to do and the informed model
in which the patient decides after
considering the options available.
Of course, these are models, broad
sweeps of the brush. As doctors
and patients, we play many different
roles. It is easy to be a pro-active
patient if you are fit and well
and visiting your doctor for a routine
health check – not so easy
if you have newly diagnosed cancer.
Many a cancer patient has been grateful
for an old-fashioned slug of paternalism.
Pressure
for change
But paternalism itself has also
been rationed, in the name of consumerism
and political correctness. ‘Patient
power’ has become the new war
cry. The cry may be new: pressure
for change is not. In Patients and
their Doctors, in 1979, the consultant
psychiatrist Dr Glin Bennet, then
of Bristol University, observed:
‘The success of medical science
has engendered a passivity in the
minds of the lay public which has
flattered the doctor’s sense
of power and self-esteem.
'It has also caused people to assume
less and less responsibility for
what happens to their bodies and
their minds, and to ease doctors
imperceptibly into the dangerous
position where they privately come
to believe that they can control
everything.'
‘The greatest benefit could
come in the future if patients could
take on more responsibility for
their bodies and minds… Doctors
then may come to acknowledge…
that doctoring is something of a
joint venture between patient and
healer, in which the doctor serves
as a guide.’
Glin Bennet was, in effect, setting
the stage for the debate which is
set to become increasingly important
in the new millennium. But what
is an expert patient? How expert
do you have to be to be one? Although
everyone becomes a patient sooner
or later, we do not routinely receive
any guidance or training into how
to be an ordinary patient, let alone
an expert one. Most of us are as
ill-prepared to play the role of
patient as we are for accidents
– or for illness itself.
Until a century ago, this did not
usually matter, because treatment
of human disease was both irrational
and largely ineffective. Medicine
was largely myth and magic. Believing
was sometimes curative – and
sometimes still is – but scientific
medicine has now come of age.
Rule of thirds
Are we making the most of it? Not
according to the ‘rule of thirds’.
This suggests that a third of patients
take medical advice and act in accordance
with it to a degree whereby it is
effective; a third follow some of
the advice, but not enough for it
to be effective; and a third just
do not bother with it at all. It
is estimated that 50-70 per cent
of medicines are not taken as directed.
The problem is not restricted to
minor conditions. Nearly 20 per
cent of kidney transplant patients
in one survey did not take their
medicines as prescribed.
The rule of thirds has far-reaching
implications. In 1996, there were
an estimated 294 million GP consultations
(average cost: £12). In 1997,
the cost of the family doctor service
was £3,495 million. This underlines
the need at least for guidance on
how to be a good patient –
if not necessarily an expert one.
It does not require specialist knowledge
– more it is a question of
an appreciation and understanding
about what make patients inexpert.
Passive
or active?
Communication is a glaring problem.
In one outpatient study, patients
forgot half of what they had been
told by doctors shortly afterwards.
In particular, they had difficulty
remembering the most important thing
of all – advice about treatment.
Ability to absorb information was
influenced by fear and anxiety –
and by the changing attitude of
the doctors during the crucial tail
end of the consultation when patients
assumed a passive role and just
listened to instructions. Most patients
had a clearer recollection of the
earlier part – in which they
played an active role, describing
what was troubling them, answering
questions and allowing themselves
to be examined.
As a journalist, I take notes or
record interviews, sometimes both,
and do not write articles without
notes. This is an essential safeguard.
Most patients rarely take notes
or tape record consultations with
their doctor, even though the consultation
may be fundamental to their health
and well being.
Pandora’s
box
The patient who asks questions
may face formidable obstacles.
Dr Peter Tate, an examiner for the
Royal College of General Practitioners
and author of The Doctor’s
Communication Handbook, explains:
‘Many doctors are uneasy with
knowledgeable, inquisitive patients.
Such patients lessen the doctor’s
control. The ‘patient-centred
doctor’ will be more likely
to demystify the nature of medical
diagnosis and treatment, reducing
his or her charismatic authority
and power. Many doctors, and perhaps
especially when training, are afraid
of losing control, of exposing too
much of their patient’s pain
and fear, in case they open an emotional
Pandora’s box and become overwhelmed
by what comes out of it. They use
their power over the patient to
keep the box shut and emotions at
a non-threatening level.
‘Powerful rituals such as
examining and prescribing are more
charismatic in the absence of adequate
explanation. The problem with this
contrived exercise of medical authority
is that overwhelming evidence suggests
that it is not very effective. The
often quoted reason for this style
of communication is that it will
make patients do what is good for
them. The sad fact seems to be that
more often they do not.’
Thanks to people like Peter Tate,
more and more GPs are sharing information
with patients. But we need to extend
the concept of the expert patient
already recognised by the Department
of Health. It is not just patients
with chronic diseases such as arthritis
or diabetes who need to be informed
or expert.
If we became a nation of expert,
or even just better informed patients,
we may reduce the incidence of chronic
disease and promote preventive medicine.
There would be a better chance of
patients getting the treatment that
is really the best for them. This
is the real key to patient power.
|
