Imagine you go to your local GP with a stomach ache. Upon initial assessment, they decide to order some tests to further determine the nature of what’s wrong with you. After a slew of tests and x-rays, your GP sits you down and explains that the pain is caused by an “abnormal growth” in the lining of your stomach and that it could possibly be a malignant tumor. They then proceed to calmly explain your options as how best to go forward with your treatment, offering their professional opinion of what options are more favourable. With this devastating news, you are expected to make the final decision based on the advice from your doctor; but without the knowledge and experience of years of medical training, how can you really make an informed decision on treatment?
All medical professionals are legally obligated to inform the patient of their treatment options and risks of said treatments, before any medical procedure can be carried out. This is to ensure that the patient has as much autonomy as possible in the decisions concerning their health. However, informed consent is not simply repeating a medical procedure verbatim from a textbook. Not only is a patient at a disadvantage from a lack of understanding of the terminology used to explain the mechanisms of disease, but medical professionals also face the struggle of effectively communicating the severity of the disease as communication skills are not taught in the same way as classroom learning. Herein lies the major problem in making decisions surrounding informed consent.
The Medical Council released a booklet Good Medical Practice In Seeking Informed Consent To Treatment in 2008, which outlines the five crucial elements in consent. Through the elements of: Disclosure; Comprehension; Voluntariness; Competence and Agreement, these five points are to ensure that the patient has the best possible understanding before deciding to go forward with their treatment. Particular emphasis is placed on “Comprehension” which states that “where possible, time should be given to reflect on the information and questions must be answered.” In some rare cases, time is not always affordable to patients, and with current strains placed on the HSE, it is not outside the realm of possibility that patients can make decisions without fully weighing their options.
However, there have been attempts to better facilitate healthcare to those in risk groups, for example the elderly. When it comes to the competence of the patient, care assistants are on hand to bridge the gap between clinical diagnosis and care for the individual. Focusing on the care side of treatment allows the care professional to better communicate to the patient what the treatment would mean in terms of what is directly on their mind i.e. the pain that may come from a specific treatment.
In 2014, the Telegraph reported that “43 percent of adults fail to fully understand information that contains text, such as signs in hospital, leaflets and health guides, whilst one in three adults struggle with doses.” In the wake of this report, the Royal College of General Practitioners (RCGP) advised that the NHS in Britain introduce clearer signs and publish comprehensive leaflets on top of requesting that GPs “double check that their patients are fully aware of their condition, prognosis and treatment before they leave the surgery.” This point was emphasised by the Chair of the RCGP, Maureen Baker, “too often, our healthcare environments fail to recognise the needs of people with different levels of understanding about their health, meaning that patients are failing to receive the right care at the right time.”
Four years later, and personalised medicine is being introduced from the work carried out by Genome Wide Association Studies (GWAS) and Single Nucleotide Polymorphisms (SNP) identification. This development into medicine promises to usher in huge advancements in healthcare, providing a better understanding of rare genetic diseases, hereditary diseases and how heterogeneity affects the phenotype of the disease. Doctors will be able to tailor the required drug dosage to the individual to manage the symptoms of their illness.
On the other hand, this advancement will proceed to widen the information gap between clinician and patient, thereby alienating further the patient from their treatment. To solve this, there are two possible approaches: educating people of the intricacies of genetics and how that plays into disease and health, or providing links between the doctor and the patient in form of nurses, and other healthcare professionals who are versed in the terms necessary to understand the situation and can relay the information back to the patient. Investments need to be made, not only in research, but in the workforce that allows to bring the findings to fruition. The point of research is to be of a practical benefit for the people who need it: the patients. Adult learning is another factor to consider, as Malcolm Knowles’ studies have shown that children retain knowledge in a different way to adults.