We have all heard the old adage that “knowledge is power.” This rings true for individuals and families who are faced with acute or chronic health issues. In fact, when faced with any health care decisions (like going for a medical test, or making a decision about a medical treatment), patients, or their decision makers must give health care providers what is known as “informed consent.” This implies that they have all the knowledge and information required to make an informed decision, which is not necessarily true. Requiring anyone to make an informed decision, or to appreciate the consequences of their decision, if they do not have all the information to weigh the benefits and risks is unethical.
To prevent this, health care providers are required to educate patients with the information they need in order to make decisions. However, determining when, how, and how much of this information they receive tends to be debated.
Health care providers are often chasing a moving target when it comes to their patients’ health. Test results come back, more are ordered, theories are formed and then amended as new information is received, and so on. Sometimes health care providers withhold updating their patients until they have all the information. They may feel the need to protect their patients from difficult news, especially when the information they have is only partial. For example, maybe a concerning test result has come back but they don’t want to worry their patient until more tests are complete, and they have a clearer picture of the situation so that they can provide advice and options on how to proceed.
There are also a lot of different ways that information can be provided. In addition to verbal dialogues, software that allows patients to access real-time electronic information on their tests, results, and treatments has been introduced. While getting real-time information seems to be a wonderful concept, some health care providers fear that the information may not be properly interpreted, leading to premature or unnecessary anxiety and fears. Many would prefer that the information coincide with an educated conversation by a health care professional who is trained to interpret and assess the situation.
From a patient perspective, it may seem obvious to say that people want to be informed of all new or relevant health care information as soon as it’s available. However, there are exceptions to this. Some people are scared, anxious, or too overwhelmed to get detailed information about their condition.
If their condition were to change, or a medical test revealed new information, wouldn’t it be a given that they would want access to that information immediately? What if the information made available was incomplete, or unconfirmed? Would it be better to receive partial information, or would it be best to wait until the health care professional had a clear picture of the situation and could provide recommendations on how to proceed? Would the decision on how to proceed to depend on a timeline? What if the full picture would come into focus later that day vs. waiting days/weeks/months? Would it be better for a client to hear this information from a trained health care professional, or would they be fine with receiving the raw information in real-time, allowing them to prepare for the discussion with your health care provider in advance?
Everyone is different in how they respond to this situation. Many patients feel that even if the information is partial, they want to be kept informed of any new information. These individuals may be drawn to the idea of real-time electronic access to patient information. For them, it may mean they have more time to prepare themselves mentally, to do research on what this could mean to them, to prepare questions to ask, to make family plans and arrangements, and so on. They may not want to be protected, yet rather, to be fully informed at all times.
And vice versa, some patients are easily overwhelmed or have anxious tendencies. In this situation, they may prefer to wait to receive information until there is a clear picture to present, complete with recommendations and options by a professional trained to analyze the situation. For those patients, having real-time information that they may not be sure how to interpret would be too intimidating, causing you more harm than good.
I believe that having an early dialogue with your health care provider can help to ensure you are getting the information you need, in the manner you best see fit for you and your family. Be direct. Say upfront whether you would like to be notified of any results or impressions, even if it is not the entire picture or the recommendations are not yet known. Or, whether you would prefer to be notified when a clearer picture comes into focus. By letting your health care provider know your preferences, and what impact this has on your life, it can allow them to adapt their methods of information sharing to best suit your needs.
The old adage of “knowledge is power” will continue to ring true for health care. The question is, when and how do you want to gain access to that knowledge?