We’re closing in on the end of another year, so two bioethics colleagues and I ended a recent teleconference with a quick conversation on the general topic of:
What do you view as the most neglected issue in bioethics and healthcare, for the near future?”
We work together in (clinical & epidemiology) research ethics, so it wouldn’t have been surprising for our replies to be limited to medical research issues. Instead, each of us chose to focus on a slightly different area – and then realized fairly rapidly that all fell under the aegis of the same category…
Dr. X* opined that the most neglected issue in our field is the ageing population, which she referred to as the ‘silver tsunami’. She’s retired, and made it clear that she disliked the alternate term; “grey tsunami”. Her health literacy concern was that too many members of his generation, and older individuals, have adopted a ‘doctor knows best’ attitude. This, in turn, perpetuates the paternalistic approach to patients that has prevailed for much of medical history – but is unlikely to sit well with our younger generations.
This led Dr. Y to comment that the digital-native generations seem more likely to check with ‘Dr. Google’ than with actual physicians, for health information. But that they also seem unable to distinguish between reliable health information and quackery. She teaches at a university, and holds many one-on-one tutorial sessions, so is much closer to the younger generations – even though I completed a back-to-school Masters’ degree just a few years ago!
Which was a great segue to my view of the most neglected issue in bioethics and healthcare, for the near future; health literacy. Or, more precisely, the lack of it. I’ve felt for a very long time that the lack of health literacy is negatively affecting the health of many Canadians, on many levels.
We ended our teleconference on this note, after concluding that health literacy was a common theme for all three of us, as a neglected issue in bioethics and healthcare. After the call, I thought this would be a good topic for a blog post, so here I am!
Why focus on health literacy as a bioethics issue? At a very basic level, because it’s difficult to make life choices that will benefit one’s health when an individual doesn’t understand some basic concepts of healthy living. My favorite example of this is common advice for prevention of heart disease. Ask a cardiologist how a potential patient could avoid cardiovascular disease, and their response will most likely consist of three suggestions; quit smoking, eat a healthy diet, and get some exercise.
But what’s a patient going to do with this advice? How are they to know what a ‘healthy diet’ actually is? Or how to exercise to avoid heart disease – How much? At what intensity? What type? In many cases, the advice is so vague that the patient does… nothing. (I’m using as references, for this rather general statement, several members of my extended family; they were all giving advice similar to this, and all proceeded to change nothing in their unhealthy behaviours.)
Without a minimal level of health literacy, many patients simply don’t understand their physicians’ medical advice; instructions for taking prescribed medications, preparations for medical testing, or even information about diagnosis of serious illness.
The definition of health literacy has evolved through the years. Initially, health literacy was seen primarily as the individual’s ability to read health information. However, the definition has expanded and for the Healthy People 2010 initiative, heath literacy was defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Ratzen & Parker, 2000).
The definition for the NAAL focused on written materials and is stated as “the ability of US adults to use printed and written health-related information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential” (White, 2008, p. viii).” (1)
Although this is a thorough definition, it fails to reflect that fact that how health information is provided to a patient can have a tremendous impact on how much of it they’ll understand. Given the wide range of licensed health professionals (e.g. dentist, family physician, ophthalmologist, nurse, pharmacist, other specialist physicians…) who might communicate information to an individual, each patient likely receives health information in many different ways – even within a relatively limited timeframe.
This alone would be sufficient to cause some confusion. There’s also the related issue of overall literacy; if an individual has difficulty reading, or if English (or French, here in Québec) isn’t their first language, it’s unlikely that they’ll be able to fully understand information sheets or other printed materials. Yet that’s often how important medical information is provided to patients; as take-home information sheets.
So I prefer this definition:
Health literacy reflects the dual nature of communication: what information is being disseminated and how people understand the information given to them.
Looking at health literacy in this way enables a focus on making systematic improvements rather than blaming those with low health literacy skills.” (2)
The question remains, of course, of how to make the systematic improvements that could improve health literacy. I have a feeling that this will remain a challenge for many years to come, but am hoping that new technologies (including the Internet) can be harnessed to create tools to assist patients.
In the meantime, let me know your view on the opening question: ‘What do you view as the most neglected issue in bioethics and healthcare, for the near future?’ If I get a few replies, I’ll post them in an update!
Happy New Year, and all the best for 2010! Happiness, health, and peace to you, your loved ones, and your community.
* To protect their identities, I’ve changed the names of the other teleconference participants to Dr. X and Dr. Y.
References:
(1) Cutilli, Carolyn Crane, and Ian M. Bennett. Understanding the Health Literacy of America: Results of the National Assessment of Adult Literacy. Orthopaedic nursing / National Association of Orthopaedic Nurses 28.1 (2009): 27–34. Web: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2668931/
(2) Institute of Medicine (US) Roundtable on Health Literacy. Measures of Health Literacy: Workshop Summary. Washington (DC): National Academies Press (US); 2009. 6, Measuring Health Literacy: What? So What? Now What? Web: https://www.ncbi.nlm.nih.gov/books/NBK45386/