When patients tell the big lie’

Ways to build a relationship of trust

It happens all the time. Newly diagnosed diabetic patients come into the clinic with their first monthly diary, recording the daily readings of their glucose monitor. It looks beautiful. There are no high numbers.

Then the clinician hits the glucose monitor’s memory button. When the instrument’s list of recorded readings doesn’t match the diary, the doctor knows a little creative writing has been done. The patients are either changing the numbers to make the diary look like the disease is under control or making up the numbers for the diary because they are not using the glucose meter at all.

"Many of them [patients] don’t realize there is a memory button, and we can see that there are no numbers at all or there are high numbers," says Mary O’Connor Root, BSN, RN, CDE, manager of the diabetic patients self-management education program at Englewood Hospital and Medical Center in Englewood, NJ.

In the same way, a patient may feel tingling in the feet, an early indicator of diabetic neuropathy, but doesn’t tell the doctor. The fear that the condition is deteriorating and that insulin may be needed, or perhaps even more drastic treatment for the complication, keeps the patient quiet. A patient may even feel the doctor will be angry.

"As soon as he tells the physician he has this symptom, the physician will say, If you were following everything I tell you, this wouldn’t be happening,’" says Jim Nolan, president and CEO of the Institute for Diabetic Discovery, an independent research facility in Brantford, CT.

Why do patients tell the big lie? Quite simply, experts say, it’s because they are caught in a web of guilt and fear that their health care providers don’t understand. They haven’t built a relationship of trust with their care team, says Nolan.

"They will tell us what they think we want to hear," says Root. "They are afraid the doctor or nurse or educator will scream and yell at them for not doing what they should be doing."

There is "layer upon layer of dysfunction" on the part of patient and practitioner, says Stanley Feld, MD, FACP, MACE, past president of the American Association of Clinical Endocrinolo gists (AACE) and an endocrinologist on staff at Presbyterian Hospital of Dallas. Patients don’t lie, he says. They just don’t have access to a system that gives them the information they need to control the disease themselves.

Don’t ask, don’t tell

Nolan says his long experience with endocrinologists and diabetologists shows that a patient almost never brings up his symptoms and doctors frequently don’t ask. "He wants to believe he is normal. Neither side wants to admit everything isn’t hunky-dory. Most physicians don’t realize that psychology is 98% of the job in treating a diabetic."

The psychology is needed on the other side, too, Nolan says. When patients are not doing their part to control their diabetes, doctors don’t really want to admonish them. Physicians often fear if they sound like a police officer all the time, patients will not come to see them at all. So patients continue to mismanage themselves until their condition reaches a crisis point.

Root starts by taking away the guilt. "I tell them there are no good or bad numbers, and if they do their monitoring, no matter what the numbers, I won’t scream and yell. I use everyday words. If you use big college words, they’ll look at you like it’s Greek."

Most of all, she says, health care professionals need to look at their patients as individuals, "As Mary Smith who has diabetes, not that diabetic patient.’"

That’s the beginning of a relationship of trust.

"You can’t beat people into compliance," agrees Feld. Instead, he says, "You have to create an environment where there is enough education."

People are often less than truthful in reporting their symptoms, he says, "but it’s not really a lie. People are embarrassed to admit they don’t comply or they don’t know what they should do." These feelings are particularly common when patients are first diagnosed, Feld says. "Their minds are opening, but they are scared stiff."

Also, he adds, physicians rarely deal with education and frequently are not really part of a diabetes care team. "They respond to sky-high HbA1cs by adding more medication. The patient feels like a truck ran over him. If I make you feel worse every time I see you, what happens is the patient comes back but doesn’t tell you he feels worse and maybe he even stops taking his medication."

Feld helped design the AACE’s Patients First program, which distributed half a million brochures containing a patient-physician contract detailing the responsibilities of each and signed by the patient and the doctor. (See brochure, inserted in this issue.)

"What drives compliance is the sense of high responsibility on the part of both physician and patient," Feld says.

Root explains that managing diabetes is an enormous task. A patient must deal with it every day for the rest of his life, "so we take it one step at a time. It’s virtually impossible for them to do everything 100% of the time."

For many diabetics, there is a great fear of what the future holds for them. One of the biggest fears is the fear of the insulin needle. "We help get over their biggest fear first," Root says. "So if it’s the needle, we help them give themselves the first shot. They find out it’s not very painful and then they can go on."

She says another key is to be flexible, to individualize care and "to work with what the patient will do." She recalls a 12-year-old patient a few years ago who told her he wouldn’t do anything if he couldn’t have his two packaged cupcakes in the morning. "So we worked out his exchanges and his meal plans so he could do that. He came back recently. He’s now in his 20s, and he’s doing great. He just wanted to thank us for working with him in that way."

Root also says it’s important to make diabetes education fun. She has devised a diabetic Jeopardy game to test the patients’ grasp of material. Her clinic has an adult diabetic support group, and she takes it slowly at the beginning.

The key is letting them have small successes so they are eager to tackle the next step, she says. "I give them one or two things to work on over the next month and set realistic goals that they tell me they can achieve. That’s what works."

[Mary O’Connor Root can be reached at (201) 894-3495. Contact Jim Nolan at (203) 789-1872 and Stanley Feld at (972) 233-3057.]