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Information is power, but when
it comes to illness and disease, is too much information beneficial, or
detrimental?
THE patient-doctor
relationship has, since time immemorial, contributed significantly to the
therapeutic process. This personal relationship, which is based on trust and
confidence, has always involved communication.
However the communication of
clinical information was not central to this relationship until recent times.
Our parents and even many of us have lived in awe of the health care system.
The doctor’s advice and instructions about health, illness, outcome and the
different interventions available were often unquestioned.
However, it is not uncommon
today for doctors to be consulted by patients who have already done a
literature search in the electronic media and made a provisional diagnosis. The
doctor may even be told by the patient what the diagnosis is, or what he or she
wants done.
The public is becoming better
informed about health because of the explosion of health information in the
print and electronic mass media coupled with the active pursuit of such
information.
Quality of information
With this paradigm shift, the
provision of clinical information is now an essential component in the
development of the trust and confidence in a patient-doctor relationship.
Consumer bodies advocate better information so that patients and their families
can make better-informed decisions.
Yet much of the information
available to patients is misleading and inaccurate. The need to improve the
quality of the information and to consider the individual’s information needs
have been the focus of attention of health educators and planners
worldwide.
The definition of quality
information varies with different individuals, and even in the same individual,
at different phases of his or her life. The core requirements would include
unbiased, current information about the individual’s illness, the possible and
likely outcomes, the risks and benefits of different interventions and
assistance in decisions about his or her treatment preference(s). There should
be discussion whenever there is uncertainty.
Individuals vary in their
requirements for knowledge about their medical condition and what they want to
be informed. Some cope better with uncertainty than others. Many in our society
still prefer their doctors to make the decisions. The challenge is to assess
and decide what the patient wants and needs.
The desirability of providing
patients with up-to-date information and the amount of such information have
been questioned by both patients and doctors. Whether such information will
promote or alleviate a patient’s anxiety is a pertinent question.
Would such information
increase demands for services by the small, vocal, privileged minority at the
expense of the collective good in the public sector? The costs of providing
quality information in the form of leaflets, videos and other audio-visuals
have to be considered.
The uncertainties and risks of
medical treatment would be exposed even more by better quality information.
Uncertainties and risks are certainly abundant in healthcare!
The advocates for quality
patient information, however, argue that it will enhance patient compliance and
satisfaction, thereby reducing the likelihood of patient dissatisfaction. The
position taken is that patients would be better equipped when forming their
views about the services they need and receive. They can make informed
decisions about their own healthcare and treatment. They will be more able to
identify the services most suited to their needs and are more likely to be
capable of accessing care and the services themselves.
The pressures on the health
system may be eased through patients’ improved understanding. The
acknowledgement of the unscientific basis of many aspects of medical practice
may persuade greater societal involvement in clinical trials designed to
provide answers to reduce uncertainties in medical practice.
The Internet
An ever-increasing number of
Malaysians are subscribing to the Internet, However, there is no accountability
for the quality and safety of the information on the Worldwide Web. Anyone with
a computer and a modem can be an author, publisher and editor simultaneously,
and worse still, can do so anonymously.
A search on the Internet for
any medical condition will reveal information of variable quality. This is not
surprising when scientists have the same access to the Web as those with
commercial or other agendas. While there are calls for regulation of health
sites on the Web, it will be quite some time before this can be implemented.
Clinical situations
Society expects and permits an
ill person to adopt a certain role that is not expected of someone who is
healthy. An ill person is vulnerable and dependent on others – these may be
doctors, nurses, other healthcare professionals, family members and/or friends.
Individual autonomy can be a
heavy load for many to bear. Making a decision on treatment may already be
sufficiently difficult.
There has been much emphasis
on choice in medical care. Many people have the perception that there is a
large menu akin to consumer goods and services like food and clothing. The
reality is that the choices in medical treatment are limited. For example,
cancers can be treated with surgery, radiotherapy, chemotherapy or a
combination of these treatment methods.
In the typical clinical
situation, diagnosis is followed by information about the prospects of what may
occur and the treatment available. The treatment choice for patients is a very
small menu. It is not uncommon to find only one item on the menu, for example,
a certain antibiotic for a particular bacterial infection.
Sometimes, the patient may
also find himself or herself in a worse situation. There is nothing on the menu
– for example, untreatable conditions like Alzheimer’s disease, inoperable
cancer.
The relationship between
patients and doctor, in earlier times, was a direct one-to-one relationship.
However, the situation today
is different in many instances, particularly in healthcare institutions like
hospitals, in which, the relationships are between patients and complex
organisations staffed by many professionals.
The traditional patient-doctor
relationship is being replaced by multiple relationships between the patient
and doctors, nurses and other healthcare professionals, all with different
perspectives of the patient’s problem(s). It is no wonder then that some
sociologists are coming to the view that the patient-doctor relationship is
becoming obsolete, particularly in healthcare institutions like hospitals.
When the well meaning family
member(s) and friend(s) is added to the equation, the situation can become more
complicated. Sometimes, even community leaders and politicians get involved.
Most doctors who have been in
practice for some time have encountered situations when they had difficulty
working out who is the real decision maker – the patient, family member(s),
friend(s), local community leader(s) or politician(s)!
Basing a decision on ...
The basis on which clinical
decisions are made is usually not discernible to the layperson who has no
formal training in Medicine. Studies have been carried out on patients’
understanding of the information provided to them by doctors and other
healthcare professionals. The results of these studies reveal a stark fact –
that although society has unprecedented access to health information, it lacked
the skills to interpret them.
The situation is compounded further,
in our country, by a multi-racial and multi-religious population that has
different perspectives on health and illness. There are differences in beliefs,
knowledge, costs, resources and capabilities.
The situation is also not
helped by the numerous patients that doctors in a busy practice have to manage.
Many doctors, in a 5 to 10 minute consultation, have to take a history, perform
a physical examination, make a diagnosis and provide information – a truly
challenging task indeed, especially when it has to be repeated umpteen times in
a day!
The law
Court decisions have also
impacted on clinical situations. For example, in Burke vs General Medical
Council, the English High Court’s ruling in 2004 enabled a patient to
insist on treatment, in certain circumstances, although it was against the
doctor’s judgement.
However, balance was restored
when the Court of Appeal overturned the judgement in 2005. It ruled that if a
doctor decided that a certain treatment is not clinically indicated, he or she
is under no legal obligation to provide it, although the doctor should offer a
second opinion.
Similarly, Malaysian court
decisions have impacted upon and continue to impact upon medical practice, as
do the various regulations.
The medical profession’s role
The medical profession
recognises its responsibility to provide quality information and the need to
work with patients to use the information to the patients’ best advantage.
After all, no one disputes that better patient-doctor relationships will
enhance the image of the healthcare professions and the healthcare system
itself.
No doctor would want anything
to happen that could lead to an erosion in the public’s trust and confidence in
the health system, in general, and the patient-doctor relationship, in
particular, irrespective of who is responsible.
Although many patients prefer
a passive role, it is important to promote a positive attitude towards their
involvement in the decisions made, particularly in primary care, in which the
patients could involve themselves to a greater extent than they currently
are.
There has been much emphasis
on communication skills in medical schools worldwide. This will go some way
towards addressing the need for better communication between patients and doctors.
But more needs to be done for information provision. This requires an
expenditure of time and effort; communication is never one-way traffic.
The patient’s role
The patient has a crucial role
to play in making full use of the information available about the medical
condition that he or she has.
One should ensure that the
doctor provides information about some or all of the following, where
applicable:
·
What is the diagnosis and the
possible complications of the condition?
·
What treatment is recommended
and why?
·
Details about the proposed
treatment, its potential side effects or complications.
·
What is the success rate of
the proposed treatment?
·
What alternative treatments
are available, their potential side effects or complications and success
rates?
·
What could happen if one
chooses not to have any treatment?
·
If surgery is proposed, who is
going to perform it and what is the extent of the experience of the surgeon?
·
If anaesthesia is to be
administered, who is the anaesthetist and his/her experience?
·
If admission to a healthcare
institution, for example, hospital, day surgery centre, hospice is recommended,
then you need information about the institution, its facilities and equipment,
its nursing and other staffing, its risk management procedures and the charges
in the case of private institution.
Any doubt should be clarified
with the doctor. In addition, one should always inform the doctor of one’s
preferences, fears and anxieties.
This is often easier said than
done, particularly for the large segment of the population who do not have a
regular doctor.
This is why the medical
profession has always recommended that every one should have a regular doctor.
Relationships require time and
effort for its development. The patient-doctor relationship is no different. If
one has a regular doctor, then he or she can assist in the communication of
fears and anxieties to the specialist. Remember, doctors cannot read
minds.
In considering the statistics
provided, one should always remember that they are like swimwear. What is
revealed is suggestive, but what is concealed is just as important, if not,
vital.
If the doctor does not provide
the information sought, one should consider seeking opinion(s) from another
doctor(s) or changing one’s doctor.
Conclusions
Good communication between
patients and doctors will always have a positive impact on a therapeutic
relationship.
Not only the medical
profession and patients have important respective roles to play. Society also
has a crucial responsibility to ensure that heavy burdens are not placed on the
patient-doctor relationship.
Well-intended regulations or
rulings may be impractical because of the various considerations discussed
above. This can lead to a negative impact on the provision of healthcare, which
is not in anyone’s interest at all.
(Written by Dr Milton Lum)