Difficult patients and families

There is no question that all kinds of people become ill, and some are more pleasant to care for than others. Yet when we use labels like “difficult” or “manipulative” or “demanding” it may weaken our ability to be a healer. We may think we can mask our feelings but we have as many as 4,100 to 10,000 facial expressions and we are fooling ourselves if we think we can truly mask what we feel. For when we label a patient and family, it does evoke feelings, like frustration, or irritation. Concealed emotions show up as involuntary “micro-expressions”, often fleeting but read at some level by others. To add to that, when people are feeling out of control and vulnerable, they are more likely to be vigilant and scanning non-verbal communication intently.

We are human and fallible, so what can we do to respond differently? First, we can remember that we have no idea what has led up to this moment for this individual and their responses are unlikely to be about us. Most of us were taught not to take things personally but never told how. The statement, ”I have no idea what led up this moment for this person” can be how we affirm that it is not personal. For older patients they may have a lifetime of experiences driving their current behavior. We can also build communication skills, like active listening and expression of empathy but it is our internal story and labeling that has to change to make those skills come across as genuine compassion. 

If you deal with serious illness day after day, it may almost seem routine. Habituation to things we do repeatedly is natural. But for the patient and their family illness is a very intense experience. One patient said the most painful thing for her was a care provider who was “nonchalant”, when she felt she was in an intense battle with the illness.

When we recognize we are negatively labeling, we are faced with an ethical choice. Do we vent to colleagues to relieve stress, creating a team perception of the patient and family that is not constructive? Perhaps it is better to talk with someone who will not have contact with this individual or family. Better to allow team members with direct care roles to not hear the negative labels. When those labels translates into what is charted or given in a shift report, which it is contagious and potentially spreads the harm. Better to use neutral behavior observations without labeling or judgements about the behaviors. Hopefully venting turns a corner to reframing by reflecting on the layers of the emotional onion for the patient. Many hostile or obnoxious behaviors come out of someone being hurt of scared or both.  A person who “manipulates” still has authentic needs but does not know a better way to get their needs met. Can we uncover the need beneath the behavior?

“Demanding” patients are often anxious and do well with frequently scheduled, brief contacts initiated by the care team. A patient is less likely to call repeatedly when they can count on predictable attention to their needs. A very talkative patient may keep repeating sentences because you have not signaled that you fully understand what they are saying. While challenging behaviors are not about us personally, it is our job to reflect on our part of the interaction to continually improve.

We are most likely to slip into negative labeling if we are overtired, in pain, or facing our own difficult emotional experiences. If we stay aware of our own feelings, and make self-care important, we can be discerning enough to not bring our own distress into our interactions with patients and families. If we are denying our own reality, negative labeling will pop to the surface unbidden. Awareness gives us the opportunity to make active choices. Our negative labels are a call to examine our beliefs and our skills. It is only when we see the vulnerability and angst beneath behaviors, that we can offer a genuinely healing presence.

Pat Justis, Washington State Department of Health