How much information do patients really need/want about their treatment? -- The value in properly timed communications to improve outcomes

Information is everywhere. From the newscaster talking about a recent health study, to the internet, where information floods millions of pages that take hours to sift through. As patients, we can become overwhelmed with information overload.

Patients specifically with a chronic disease, such as cancer, are often devastated when diagnosed, and may feel a mental pang when they perform their own research. Having a mind flooded with information all at once, not only from their doctor and care team, but from family, friends, caregivers - and the internet - is bound to cause mental anguish. Rather, getting specific information at the right place and at the right time could prove more beneficial.

If we consider each patient, they are individuals with their own wants and needs. Of course, patients with similar cancer diagnoses may receive the same treatment. However, communicating this information is not to be delivered in a “one size fits all” manner. Besides the patient and their care team mutually understanding one another, the patient must know themselves in terms of their learning style and how much or how little they want to know.

Cancer can be diagnosed in a number of ways. For example, a routine blood test ordered during a physical, a lump or bump felt in a certain area of the body, or symptoms that the patient is unfamiliar with. It can be determined by a primary care physician, a specialist, or a radiologist. When a patient first hears the words, “You have cancer,” it may not be from the physician who plans to treat them. The time between the diagnosis and when a patient first meets their treating physician can be frightfully agonizing. Many thoughts can run through their mind, including “Can I be cured?” or “Am I going to die?” or “What about my family?” With the vast amount of information online, it’s easy for a patient to feel distressed and not know which information is credible. Therefore, it is the job of the physician to explain the most basic information and not further overwhelm the patient who is already in a fragile state, including answering these questions:

  • How did this diagnosis come about?
  • What is the prognosis? Is there a cure?
  • What are the treatment options? Is there more than one? Is one better than the other?
  • What is the stage? Is it possible that it has spread to anywhere else?

When answering these questions, the provider must remember to use lay friendly language. Often, physicians tend to use medical jargon that may make the patient confused and anxious and feel as if they’re being talked down to. They may often think they know how much information the patient wants to know, but again, each patient is different. Physicians also need to remember that this is a team effort between them and the patient, and not a one-sided matter. Additionally, the conversation shouldn’t all be disease-based. Physicians should be willing to take the time to understand each patient’s values and mental health, including their emotions and feelings throughout the treatment process. Showing empathy can help a patient feel more relaxed and improve their overall satisfaction. It can also result in better care as a result of shared decision-making.

Providing patients with too much information at once can “negatively impact decision-making...with too much information leading to worse decisions.” It is important to choose information that is relevant to them and break it down into manageable chunks. This can help patients feel confident in making their choices for treatment with their care team, especially for patients with cancers that have different treatment options, such as ovarian cancer which has surgery and chemotherapy as treatment options. Also, paying close attention to body language, including facial features and hand gestures, can help physicians know when they need to take a step back, review information, and answer any questions.

Additionally, specific doctors for certain types of cancers create the care team. Looking again at ovarian cancer, different treatments can be provided by different providers. For example, gynecologic oncologists treat cancers in a woman’s reproductive system, but another surgeon may perform operations, and yet another medical oncologist may oversee chemotherapy treatment. Depending on the type of treatment the patient chooses, care coordination between all members of the care team is vital to make sure the patient understands what is happening where and when throughout the entire cancer treatment process, from diagnosis through survivorship.

If you’re looking to learn how you can get the right information to the right patient at the right time that helps you, your staff, and your patients feel more at ease, look no further than ARCHES’ MyCareCompass, an integrative program that works with EHR systems to deliver “just-in-time” patient education. Contact us at: