The “Difficult” Patient: It’s Time to Replace the D-Word

November 2, 2011

I hear the phrase a lot from doctors, physician bloggers, surgeons, nurses, fellow patients and loved ones; being labeled the “difficult patient” because of a chronic or complicated illness.

I’ve heard “the difficult patient” referred to as a lot of things: the patient with a nasty attitude; the patient who refuses treatment or refuses to take care of their body; the patient with a complicated family situation; the patient with a terminal/complicated disease pattern; the patient whose disease remains a mystery; the patient who can’t give a straight answer; the patient who has a chronic illness.

Most of those definitions I understand. But it’s the phrase I have an issue with when it comes to being the chronically ill patient.

For those of you reading this that are healthy, I want you to stop and imagine the following: You are sick all of the time. You have fevers and can’t control when you’ll have a hot flash or cold sweat or chills; diarrhea or constipation; cramps or nausea. You have pain: muscle and joint everywhere, all the time and often without relief. You might have chronic migraines, numbness, memory loss and disorientation that comes and goes. You are fatigued, and by fatigued I do not mean tired. By “fatigued” I mean you feel like you are wearing five soaking wet duvet covers over your head, with all the other symptoms, with bricks tied to each and every part of your body. Each step feels like running a 5k marathon. Your disease includes self injections, IV infusions, low dose long-term chemotherapy medications, pain medication that causes a host of other side effects. You lose your hair and get mouth sores and have the same symptoms cancer patients have on the same chemotherapy medications, only your disease isn’t advocated for. You lose your hair and get mouth sores because of the disease(s) itself. Your organs are inflamed and you might just have frequent kidney issues. At any time these symptoms can and do get worse without warning; some days you feel okay, but your body changes without warning. You do nothing without measuring how much energy each task will take; plan are never concrete; spontaneity is rare. Many people die.

Now you are a chronically ill patient and you look to your team of doctors for help. A rheumatologist, a neurologist, a surgeon when necessary, a psychiatrist and psychologist to help you battle the mental strain of being sick. They are your partners fighting against the disease with you, right? Right. Or at least, they should be. You and your doctors should be a team working together. But what happens when you hear the doctor whisper outside the door that you’re the difficult patient in room five? What happens when you hear it said about someone else with a similar or the same condition?

What happens when you go to the Emergency Room, desperate in pain and there is no other option, and you hear those words from one nurse telling your new nurse during shift change?

You feel shunned. Even if by “difficult” your doctor meant “challenging” in the context of treatment and cure, “difficult patient” clearly insinuates a statement of personality, if not a complete insult.

The healthy doctor-patient relationship relies on trust— the patient trusts this stranger, essentially, with details that no one else might know, perhaps embarrassing or emotional details. The doctor must trust that their patient is telling them all and not some of their symptoms, that they are taking their medications and taking care of themselves.

When that trust is broken because of a phrase, where does that leave a chronically ill patient? Shunned.

Often our society, family, friends, peers, consider chronic illness to be, well, fake. It’s in our heads, it’s invisible so it must not exist or be “that bad;” it must be proven to be believed. As soon as those words, as soon as we hear we are a difficult patient, the walls go right back up. We feel invisible, shunned, like we need to prove that we are sane and not difficult. Most patients do not realize that “difficult” often refers to the physical and not the personality.

As patients, we have a responsibility to do the best we can to make our doctor’s job easier while having our own needs met. We need to thank our physicians for their work, appreciate what they do, and if they do not meet appropriate standards (listening, for example), then it is okay to move to a new doctor or perhaps voice concerns. It is our responsibility to take our physician’s advice and take care of ourselves too.

As physicians, it is their responsibility to treat patients the best way they can and know how, to answer questions to the best of their ability, or to simply say “I don’t know, but I’ll find out” when the answer is unclear. They have a duty to be the best they can be with the resources they have; listen when a patient speaks, examine the body carefully and without rushing so as to not miss a puzzle piece. It is also their responsibility to do no harm.

“First, do no harm:” part of an oath a physician takes upon practice. Words can do harm to patients too, not just with our hands or prescription pads or surgical tools. Whether you read this as a pre-med or science major, a doctor (Hi Cranquis), or just a follower, it is something to keep in mind as you venture through life. We’re all patients at some point. For the few of us that end up as physicians, it’s up to us to change the phrase. Replace the D word with “complex” if you are talking about a complex or complicated case. Really, when you mean that a patient’s disease is difficult to treat/cure, yet you call them a difficult patient, you are essentially saying the patient is no more than their disease; that they are one. We are so much more.

I am so much more.

—E.