Am Fam Physician. 2000;61(1):226-231
Case Scenario
When I received my patient's laboratory results, they confirmed my fear that her diabetic condition was worsening. Her type 2 diabetes (formerly called non–insulin-dependent diabetes) had been controlled with oral glucose-lowering agents, but it now appeared clear that she required insulin therapy for continued control. At first, the patient was hesitant about taking insulin, but after a careful explanation of the necessity for insulin, she agreed to try with the help from a visiting nurse. I gave her the prescriptions for insulin and syringes and arranged for a nurse to teach her the injection and finger-stick techniques.
The patient had been coming to see me every three months. She was a 56-year-old woman with a history of medical and psychiatric problems that included, in addition to type 2 diabetes, hypertension and schizophrenia that were both controlled with pharmacologic therapy. In addition, she was the sole caretaker for her invalid husband. The patient always stated that she took her medicines, and she could not only name them, but could also recite the amount and time of her doses. I had no reason to believe that she had not been compliant with her current medical therapy.
Shortly after initiating visiting nurse assistance, I began to receive a flurry of phone calls from the nursing staff. They were concerned that the patient did not answer her phone regularly and could not properly self-administer insulin injections. The patient was able to recite the steps needed for injection but could not actually carry out these steps.
Without insulin therapy, the patient's diabetes will continue to worsen. She appears unable to self-administer insulin injections. She seems to be competent in all other aspects. Daily nursing care is not a viable option for this poor patient. Nursing home placement is unreasonable and would cause her husband to lose his sole caretaker. What can I do besides continue oral medication and watch her glucose levels rise?
Commentary
One of the prevailing challenges for physicians is dealing with noncompliant patients—those patients who seem unable or unwilling to comply with their treatment plan. When faced with such a patient, the physician's first impulse is frequently one of anger and frustration. The reasons for these feelings are many and varied, but they ultimately boil down to the importance physicians attach to providing high-quality care and the tendency to define that care in terms of patient satisfaction, clinical improvement and their own effectiveness as physicians.
The physician in this case appears to have reached an important and perplexing crossroad with the patient, who is now faced with the prospect of mastering a rather complex skill and then integrating that skill into her daily routine. Although the long-term benefits of insulin therapy and home-glucose monitoring are quite clear (e.g., improved glycemic control, lower risk of macrovascular and microvascular complications, and a greater ability to care for her invalid husband), the short-term impediments to actually incorporating this task into her routine remain obscure.
A couple of questions come to mind: Does the physician take at face value her “hesitancy and inability” to comply with the insulin therapy as simply noncompliance and, in the process, accept a lesser standard of quality care? Or, does the physician try to understand the patient's noncompliance in the context of her health and illness beliefs, her mental and emotional state, her knowledge and understanding of her disease, and the implications of starting insulin therapy for herself in addition to the ongoing care of her husband? Many physicians would label this patient as noncompliant and simply accept poor glycemic control as an inevitable trade-off given the demands and exigencies of clinical practice. What medical professional truly has the time, training or temperament to explore the underlying issues and dynamics for this patient?
The literature is filled with recommendations to assist physicians with the management of noncompliant patients. Unfortunately, this advice is based largely on the assumption that physicians understand the reasons for the noncompliance of the patient in question.1,2 Therefore, the objective for physicians is to find a way to move from the generic problem of noncompliance to specifically defining the basis for the noncompliance and, finally, to negotiate an appropriate treatment plan with the patient. The strategy outlined below requires the physician to pay far greater attention to process issues and to include family members and mental health professionals as part of the health care team.
First, the physician should develop a differential diagnosis for this patient's presenting problem of noncompliance. The time-honored tradition of the differential diagnosis in clinical medicine has proved highly effective in establishing potential causes for vague or inexplicable symptoms. Does this patient have any physical or cognitive impairment that prevents her from administering insulin? Does she have any emotional problem (e.g., adjustment reaction) or comorbid mental disorder (e.g., major depression, panic disorder, etc.) that interferes with her mood, motivation or concentration? What are the influences and implications of her schizophrenia? Does she have any fears or fantasies about the self-administered injections? Does she have the time to devote to insulin therapy and home-glucose monitoring? Does she have the financial resources to afford the supplies and equipment necessary to ensure glycemic control? Finally, what is her understanding of and the meaning she attaches to this particular stage of her illness (“Will I die and leave my husband all alone”)? Exploring these questions with the patient represents the first step in developing a treatment strategy that targets the specific underlying problem.
Second, the physician could expand the system and include the patient's husband (and possibly other family members) in the therapeutic process. McDaniel and colleagues3 discuss the importance of using this expanded system to increase the physician's understanding of the complex interplay between the soma, the psyche and the social milieu of the patient. What is the husband's perspective on his wife's diagnosis and proposed treatment? Does he resent not being included in the decision-making process? Does the prospect of insulin therapy represent a “red flag” to him (“My sister developed gangrene and lost her leg after she started insulin”)? Will he miss her consistent availability to meet his myriad needs? Does he fear her growing dependence on him or the possibility of losing her as a caretaker? Does he feel a certain competitiveness with the physician since the loss of his traditional role in the family? What are the family's strengths and resources, and what has helped the family cope with health crises in the past? The family can provide a veritable well of wisdom and knowledge that allows the physician to better understand this noncompliance phenomenon and, in the process, build the necessary alliances to assist with the care of the patient.
Last, the physician will likely find collaboration with a mental health professional quite helpful in this case. The time demands, economic constraints and enormous clinical responsibilities of physicians frequently make caring for the noncompliant patient an exercise in futility. Does the physician really have the time, the interest, the education and training, or the financial incentives to resolve this patient's noncompliance (outside of clearing up any misinformation or misunderstanding on her part)? Does she engage in dysfunctional patterns of behavior with her husband (and her physician) that undermine her health care and contribute to her resistance? Does the physician have unresolved personal issues that cloud his or her clinical judgment and make this situation particularly charged (“My mother had diabetes and refused to take care of herself ”)? The opportunity to collaborate with a mental health professional offers several benefits to the physician—access to the psychosocial dimension of common problems, assistance with navigating complex intrapersonal and interpersonal dynamics, professional support and validation for providing difficult and often undervalued care and, hopefully, raising the quality of patient care.
The clinical vignette above provides a wonderful example of the complexity of common problems seen in primary care practices. Failing to address the beliefs, attitudes and interpersonal relationships of our patients within the context of their lives will only serve to undermine their medical care.