Not surprisingly, health care professionals sometimes procrastinate when it comes to telling their patients about a poor prognosis. Perhaps they too, like their patients, tend to be overly optimistic in their judgement when presented with a dismal prognosis. Who doesn’t want their patient to be one of the lucky ones to survive the odds? Consequently, in an effort to soften the news, health care professionals may unwittingly muddy the waters when communicating a poor prognosis to their patients.
As an educator, one recognizes that parallels can be drawn between adult students and patients, and how we as adults acquire new information. Educators know that before we can expect students to draw inferences about any given subject matter, we must first assess the students’ prior knowledge of that subject matter. Students who lack sufficient knowledge to proceed to advanced study are brought up to par with what is known to educators as scaffolding. When discussing a poor prognosis with a patient, physicians need to consider the patient’s prior knowledge of the subject matter at hand. If the patient is lacking in medical knowledge, and most patients are, subtle comments that allude to a poor outcome may be misunderstood.
For example, consider the following statements that were made to patients by health care professionals in a hospital setting. These statements may represent a kinder, gentler approach to communicating a poor prognosis, but subtle statements such as these are insufficient and confusing because patients do not possess the necessary prior knowledge to interpret them correctly..
“She may never be a mother because she has lung cancer.” This is a subtle statement that alludes to the patient’s likely demise, but consider how it might sound to a patient or a family member who has no prior knowledge of the disease or its trajectory. Educators know that people rely on their own scope of experience to interpret statements that otherwise do not make sense them. A person who has no knowledge of the disease trajectory may interpret that statement to mean that lung cancer or its treatment may somehow interfere with the reproduction process because he or she does not have the prerequsite medical knowledge to reason otherwise. The physician may assume that the patient understood what he or she was alluding to, but that may not be the case at all. If the physician does not continue the conversation with the patient to ensure understanding, there is no way to determine whether or not the information was correctly interpreted.
“You are bleeding internally. This is bad; this is very bad.” This statement can be interpreted by the patient in a variety of different ways. Prior knowledge or not, it lacks the basic necessary information that the patient needs to reach the conclusion that their disease has progressed beyond the physician’s control. In short, such statements are unfinished to the patient. They do not contain enough information for the patient to interpret one way or another, and it leaves the patient waiting for the conversation to continue. If the conversation does not continue, the patient may conclude that the symptoms have abated, or must be under control because the physician did not make any further reference to them. Test results that indicate impending doom to the physician mean nothing to the patient if the patient has not been educated about them.
“I’m all for hope folks, but at this point you have to realize…” Patients have trust and confidence in their physician’s judgement, and they will believe it over everything and everyone else to the very end. A resident physician made this remark after he heard a patient with advanced cancer state that he was due for chemotherapy at the end of the week. The resident physician stopped in mid-sentence, turned and left the room once he realized that the patient had no idea he was terminal. The patient turned to his caregiver and asked, “What did he say that for?” The caregiver responded, “I don’t know.” The confidence they had in the attending physician was enough.
“She is not actively dying.” Does the average patient or their family know the difference between the words actively dying and dying? This response was given in the Intensive Care Unit after the patient’s family directly asked one of the physicians if the patient was dying. The patient’s family is not going to differentiate between the words actively dying and dying. The Intensive Care Unit physician knew what was being asked, but was reluctant to intrude upon the attending physician’s territory. Physicians caring for a patient have a responsibility to be honest. If there is an action that they believe does not fall under their jurisdiction, then they should contact the patient’s attending physician. A policy should be in place to address this issue when it occurs, and it should be enforced by hospital administrators.
In order to close the communication gap that exists between patients and their physicians when it comes to delivering prognostic information, physicians may elect to be more cautious when they are alluding to, rather than directly stating, a poor prognosis. Taking a moment to assess whether or not the patient has sufficient prior knowledge to interpret a subtle clue about their prognosis will be a factor in how well the information is processed. Patients are not going to make the voluntary leap from curative treatment to one of comfort care only without the concrete recommendation of their physician. More importantly, patients need to take an active role in their care, and ask questions if they don’t understand what their physicians are trying to communicate to them. As patients, we need to trust our gut instinct. If something sounds a little off, that’s because it is. We did not keep the evolutionary portion of our reptilian brain for nothing. It has served us well for thousands of years, and it will continue to do so. We just need to listen to it.
Originally posted 2016-07-29 20:45:29. Republished by Blog Post Promoter
I think it would be better for physicians to just say what they mean. We have enough to worry about without receiving mixed messages too.
My wife died from cancer last year. We thought we had more time, and were surprised when we found out we didn’t. If we were given subtle clues, we didn’t know it. We didn’t need clues; we needed facts. I would have liked to spend more quality time with her, but we didn’t know she was near the end until the doctor said it’s time for hospice. We needed information that we could understand even though it may have been hard for us to hear. We ended up hearing it anyway, but only after it was too late to do anything differently.
I agree completely. Seriously ill patients and their families are overwhelmed. They don’t know, and shouldn’t be expected to know, the right questions to ask. Giving false hope cheats a patient out of living his or her last days to the fullest.