Diabetic patients pose unique risk management concerns for physicians. Many patients simply refuse to accept that they have diabetes, while others may not recognize the serious complications and risks caused by the disease. This article, originally written by endocrinologist Randy Linde, MD, provides insights on eliciting patient compliance with a complex set of self-care requirements.
I once treated a man in his mid-30s who was referred to me by an ophthalmologist for severe diabetic retinopathy. A lab test confirmed hyperglycemia. The patient denied that he had been informed of having diabetes and said that in the last few years, he had been told only that his blood sugar was mildly elevated on several occasions. Patient history and examination suggested significant neuropathy, and a chemical panel showed renal insufficiency. I explained to him that he had clear-cut diabetes with multiple complications, and I described the ominous potential of the disease. I suggested that he have his previous medical records forwarded and made a number of diagnostic and treatment recommendations.
I did not see or hear from the patient until nine months later when he reappeared with a persistent flu. He provided no explanation for having disregarded my previous advice. I reiterated my concerns and somehow convinced him to undergo complete laboratory studies that morning. Later in the day, I called him with the unfortunate news that he had developed renal failure. I arranged for him to be hospitalized by a nephrologist, who subsequently took over his care.
One year later, I received a letter from the patient’s attorney alleging that I had not warned his client of the possibility of developing renal failure and that he intended to file suit. Nervously, I reviewed the patient’s chart and found that my consultation note was quite clear— I had warned the patient of the risks. A request from his attorney for a copy of the records soon followed, and that was the last I ever heard of the matter.
While some degree of patient denial is common with diabetics, this particular patient was one of the most extreme examples I’d seen in my years of endocrinology practice. I certainly understand why denial occurs: A diagnosis of diabetes is frightening. The disease is the nation’s leading cause of blindness, kidney failure, and amputation, and it significantly increases the risk of heart disease and stroke. No one reacts favorably when advised that he or she will have to live a structured lifestyle that includes a regimented diet and daily blood sugar monitoring. Some people live in abject terror of having to self-inject insulin. Others fear losing their jobs and keep coworkers unaware of their diabetes—which is unfortunate and potentially dangerous. Today, people also have a realistic concern about losing health insurance, especially when changing employers.
At our clinic, we use a multidisciplinary approach to diabetes management. Virtually every patient referred to us for an endocrine opinion is seen by the diabetes educator. We also refer many patients to ophthalmologists, podiatrists, or other specialists. Most people we see are either recently diagnosed or poorly informed about their diabetes. Initially, patients may be overwhelmed by the team of consultants and the scope of information we give them, but our goal is to overcome each patient’s fears by providing information and support. Accomplishing this goal is like teaching someone how to walk all over again: It is painstaking and repetitive. The desired result is for patients to do well because they assume personal responsibility for their health—perhaps the ultimate goal of risk management.
With the assumption that different people learn in different ways, we provide four main sources of knowledge for our patients:
Our diabetes educator is a registered dietitian who designs an individual diet plan to fit each patient’s special needs. The plan includes directions for grocery shopping and eating out. The educator teaches patients how to monitor their blood glucose, regularly evaluates patients’ techniques, and calibrates their equipment.
Sessions include instructions on self-administration of insulin, including insulin kinetics, and emphasize the importance of timing meals and exercise. A spouse or other partner participates as much as possible, especially during the discussion of management of acute illness, hyperglycemia, and hypoglycemia. We send every insulin-dependent patient home with a prescription for a glucagon emergency kit in case of hypoglycemic coma. We periodically remind the patient’s partner of how, when, and why the glucagon is administered. We also sponsor advanced classes in diabetes management with our local diabetes society.
The diabetes educator and I have developed a good-cop, bad-cop routine that evolved from the educator’s sympathetic and accepting nature and my tendency to push hard for results. Invariably, patients who need reinforcement will call her, and she comes through for them.
During my sessions with patients, I look for opportunities to test what they’ve learned. I might ask, "When should you check for urinary ketones, and how would you act on the result?” Anticipating a common error, I often ask, “What would you do if you accidentally took your morning insulin dose at bedtime?” This approach may seem harshly Socratic for people coming to terms with a new disease, but it is intended to create self-confidence—which is critical to the diabetic patient. The process of learning to deal with diabetes often involves major lifestyle changes that can be quite discouraging. While patients may leave each session feeling mental fatigue, it is important to find a way to end each session on a positive note.
Patients who join support groups benefit not only from hearing about personal experiences of other members, but also from having the chance to share their emotional responses to being diabetic. Health professionals are not encouraged to attend these meetings unless invited to speak on a topic of interest to the group. This provides the opportunity for patients to blow off steam about us—the cops. Patients who participate in groups tend to take criticism more constructively, and they usually achieve better diabetic control. Our diabetes educator initially organizes the groups, which are generally self-sustaining.
Clearly, these techniques do not work for everyone. When someone with longstanding obesity, a sedentary lifestyle, and type II diabetes visits us, we make it clear from the outset that these patients usually do poorly because of lack of compliance. We emphasize that developing diabetes late in life doesn’t provide protection from complications. We walk a fine line with those patients, who often need a great deal of reinforcement as well as a rude awakening to reality. Playing hardball is sometimes effective. Our former diabetes educator observed that our successful type II diabetics were the ones who were afraid of me.
For those who remain in denial, we are left with the ethical and medical-legal responsibilities of giving detailed explanations of the long-term hazards of untreated diabetes, including death. Since our common goal in practicing medicine is to alleviate fear and suffering, that kind of interaction is most unsatisfying.
We remind our patients that diabetes poses risks to others as well as themselves. A poorly controlled diabetic can be emotionally labile and a burden to family members. While we encourage family support and feedback, our goal is to make each diabetic patient personally responsible for achieving good self-control.
The most flagrant example I’ve seen of a patient personally failing to assume accountability for his diabetes involved a 50-year-old man who had worked as a salesman in a variety of industries. Unfortunately, he had mastered the art of selling a lie.
For years, the patient had been a closet drinker, a fact his wife made known to me shortly after I assumed his care. Although his only long-term complication after more than 20 years of diabetes had been mild retinopathy, he suffered frequent insulin reactions, during which he physically abused his wife. The insulin reactions persisted despite repeated efforts to provide diet and insulin dosage advice that should have been effective. Periodically, his wife would find an empty whiskey bottle in his car, for which he would find some excuse, never admitting his problem with alcohol. Paramedics were regularly called to his home to administer intravenous glucose to him and first aid to his wife. Finally, after a number of warnings, his health insurer revoked his coverage.
There are more than 25 million diabetics in the United States, many of whom take insulin and drive a car. Driving is undoubtedly the greatest day-to-day liability this disease presents to the general public, since a severe insulin reaction may cause a sudden loss of consciousness. Most people with diabetes can drive safely, but we periodically review the issue of driving with all patients. While there are no national guidelines related to diabetes and driving, our advice to patients promotes safety at the expense of convenience.
Specific rules vary among states, but we emphasize the responsibility of all patients who drive to be certain that their state department of motor vehicles (DMV) is aware of their diabetes. When we learn of a patient who is not complying with our advice or who fails to sense the warning symptoms of hypoglycemia before losing consciousness, we inform the patient that we are obligated to disclose this information to the DMV as a public safety measure. This is done by sending a confidential morbidity report form to the local public health department or directly to the DMV. The DMV then sends a physician’s form to be completed before a patient is interviewed by the DMV. Thus, it is ultimately the responsibility of the DMV to determine whether an individual with diabetes should drive.
There is no vacation from diabetes. Dealing with the disease means stabbing a finger to test a drop of blood several times each day, eating three carefully considered meals and snacks, fitting in an exercise session among life’s routine demands, and often taking multiple daily doses of insulin. A variety of issues can arise that will prompt a call or visit to a primary care physician, endocrinologist, or diabetes educator. Most foot problems require a visit to the podiatrist. An annual eye exam is mandatory, even without ocular disease. Diabetics must be regularly screened for renal disease and lipid abnormalities. Even a seemingly harmless head cold can be complicated. Being a diabetic can be a full-time job.
Managing the myriad risks of diabetes means looking out for the well-being of patients, their families, and the public. Our principal goal is to make patients as expert as possible in handling diabetes—ideally, making good self-care second nature. Our system of diabetic management is structured to reinforce important information by ensuring that it is provided and documented by more than one caregiver. This management system has permitted us to follow an unusually compliant and mature population of diabetic patients.
By Randy Linde, MD, a practicing endocrinologist in Palo Alto, California; updated by Howard Marcus, MD, FACP, Chair, Texas Alliance for Patient Access, and Chairman, The Doctors Company Texas Physician Advisory Board.
The guidelines suggested here are not rules, do not constitute legal advice, and do not ensure a successful outcome. The ultimate decision regarding the appropriateness of any treatment must be made by each healthcare provider in light of all circumstances prevailing in the individual situation and in accordance with the laws of the jurisdiction in which the care is rendered.