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What is next in patient education?

From medical paternalism to patient centred care.

In a previous article we have already touched upon the topic and historical evolution of the term medical paternalism. The term refers to a superior attitude of doctors towards their patients. From ancient times until the 1960s, there was a general perception among physicians that patients were not entitled to be fully informed about their medical health status due to their lack of expertise.

In order to determine to what extent this attitude was consolidated among physicians, we take a closer look at the educational process for cancer patients. In 1960, it was considered normal to withhold information from patients with terminal cancer about what exactly they were suffering from. A study published in the journal of the American Medical Association in 1961 states that 88 percent of the doctors at that time had a policy not to tell their patients that they suffer from cancer.

It was not until 1972 with the historic decision of the Canterbury Court that a decisive step was taken towards a more patient centred treatment by establishing informed consent as social policy:

The patient’s right of self-decision can be effectively exercised only if the patient possesses enough information to enable an intelligent choice. The patient should make his own determination on treatment. Informed consent is a basic social policy for which exceptions are permitted (…). Social policy does not accept the paternalistic view that the physician may remain silent because divulgence might prompt the patient to forego needed therapy. Rational, informed patients should not be expected to act uniformly, even under similar circumstances, in agreeing to or refusing treatment. (Canterbury v. Spence, 1972)

Although this decision represents a huge step forward in patient education, practice today does not show that patients are sufficiently informed. Patient education in most cases consists of several paper pages with Latin and medical terms to inform patients about the procedure and possible side effects. In fact, these pages are incomprehensible to most patients and do not provide beneficial and visual explanations.

In this context Eric Topol author of “The Patient will see you now” states that the term “informed consent” is actually misused and it is at best “quasi or pseudo-informed”. Also the legally enforced part of the process makes informed consent in his opinion rather a “coercive consent”, because patients must sign it anyway in order to get treatment. Topol also uses a quiet vivid picture to describe the current state of informed consent:

This metaphor accurately describes the situation of patients who do not have the option to refrain from signing the consent form if they want to get treated. They are legally enforced to sign off their medical health condition to a person they do not know and have to blindly trust without knowing what is actually going to happen to them. There is actually not that much difference compared to the time before 1972, is there? 🤔

An innovative revolution in this area is long overdue.

Patients are empowering themselves to educate themselves using digital tools such as Google and Co. Far too often, however, with unsatisfactory and even wrong results — and to the annoyance of many doctors. 

In our digitally enlightened environment, shouldn’t we long ago be able to make such manageable processes as patient education simple and understandable for everyone? Patient-centered care requires, among other things, that the patient is fully informed about his or her state of health and what happens to him or her personally during an operation. Currently this is not the case and we need to find new ways to get there. We should start using state-of-the-art technologies and commonly used media formats that cater to the patients rights and doctors necessities in order to achieve the best possible .

If you want to find out more about the topic of patient centred care check out this article:

Sources:

D. Oken (1961): What to tell cancer patients. A study of medical attitudes.

Eric Topol (2016): The Patient Will See You Now: The Future of Medicine Is in Your Hands

https://www.encyclopedia.com/science/encyclopedias-almanacs-transcripts-and-maps/informed-consent-i-history-informed-consent

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