Decisions in Healthcare: Are You Speaking My Language?

When dealing with serious illness, dementia or end of life, it is common to need to make critical decisions and choices. Outcomes may be unpredictable and have serious consequences. Most patients and families, when they are in the midst of a medical crisis or dealing with a serious illness, experience stress and anxiety; and anxiety can impair our ability to make decisions. Doctors and others in the health system want to be clear when presenting options to families in this setting but are often unaware of how they come across. It is an unfortunate truth that we humans often misunderstand one another, even when speaking the same language. For example, the “Women are from Venus, Men are from Mars” argument.  Or, try talking to a teenager about the importance of homework. Now put our often-bumbling communication efforts into the setting of serious illness or inside the ICU. Add to that our personal reticence to ask questions or appear uninformed, and we have a perfect recipe for some serious misunderstandings!

 

An article published last year in the journal Critical Care Medicine talks about how words that seem simple to understand can be understood differently. The authors of this study evaluated how doctors and families of critically ill patients understood the word “treatable”.  They proposed two possible meaning frameworks for this word in the context of discussions about care for ICU patients with serious illness. The physicians understood the meaning of the word treatable to be associated with an action or intervention they might use, but it was not necessarily associated with improved prognosis or quality of life. In this way, treatable could be used like this: They say, “Yes, her condition is treatable.” This means, “We can do something to treat her illness, but it might not make her better, and it could make things worse or even shorten life.”

 

The non-physician participants in the study understood treatable to mean something different. When non-physicians, heard the word treatable they associated it within a conceptual framework of good news. To them, treatable meant that they were being given “a positive message about a patient’s future, thereby inspiring hope and encouraging further [ongoing] treatment.” So here, treatable would be used like this: “The doctors said he was really sick, but it’s treatable.” And the family thinks, “He might get better, so we are going to keep trying so long as they can do something to treat him.” And they don’t fully understand what harms may come from doing so.

 

Misunderstandings in this setting can have lasting or permanent effects on life and livelihood and can lead to pain, regret, depression or remorse among family members. I see this very often in my work. Doctors and other medical professionals use words in one way and patients and family members have something else in mind. No one is intentionally being misleading. No one is intentionally misinterpreting. It is human nature. To be fair, most providers have not had training in the communication skills necessary to navigate the emotionally fraught discussions around care choices in serious illness, dementia and at end of life. Likewise, individuals and family members have also not had training in these concepts and are unaware of the pitfalls. Quite simply they do not know what to ask to get the information they need. (The old adage, “You don’t know what you don’t know.”)

 

Fortunately, there is support for individuals and families who want to explore this more and to work with their decision-makers and healthcare providers. For starters, there are online programs and tools you can download. Check out:  Prepare For Your Care, the Coalition for Compassionate Care of California, Kaiser Permanente Life Care Planning, The Conversation Project, Five Wishes, the National Hospice and Palliative Care Organization, GoWish and the Chinese American Coalition for Compassionate Care. So much to choose from! Most importantly, don’t leave this important part of life planning until too late. Reach out, communicate clearly, ask questions, get support.