Healthcare professionals need to make patients the primary decision-makers in their own care and actively support their efforts to achieve their care goals.
Too often, patients with chronic illnesses can feel like a burden to their clinicians or caregivers.
Chronic illnesses do not take days off — they are called “chronic” for a reason. Since most patients (and clinicians, for that matter) are unable to spend all day, every day, in an exam room, a large portion of day-to-day disease management falls on the patient themselves. This weighty responsibility can take a significant toll on a person’s mental health.
To put self-management challenges into perspective, this section will focus on a chronic illness that affects 422 million people worldwide and causes 1.5 million deaths a year: diabetes.
Outside of the clinician’s office, diabetes management is a patient’s round-the-clock responsibility. Patients must watch what they eat, monitor their blood sugar levels, take their medications, maintain a routine of moderate exercise, and some must self-administer insulin injections multiple times a day. They must also know what to do in the case of a health emergency, such as a sudden spike or dip in blood sugar levels, which can lead to dizziness, loss of consciousness, vomiting, and other symptoms ranging from disruptive to life-threatening. And the more complex their diabetes is, the more challenging patient adherence becomes.
If they manage their condition well, people with diabetes can lead relatively normal lives. However, everyone has their own unique set of circumstances influenced by their underlying physical health, personal history, geographic location, economic stability — the list goes on. That said, there are a few issues that stand out as consistent barriers to effective diabetes management:
In order to truly understand how to self-manage, patients with complex diabetes and their families or caregivers require educational support about the effects of disease on the body and how medication, exercise, and lifestyle adjustments can counter those effects. And since most people rely on general practitioners for their primary healthcare, they may be missing crucial, disease-specific education.
A patient’s socioeconomic status, age, cultural beliefs, and additional health factors can inform how they perceive advice for self-management — or make it more difficult to access assistance. Underlying psychological factors including anxiety, depression, and eating disorders can also compound these issues or act as additional barriers to adherence.
When patients think of their treatment as difficult or complicated, they are less likely to adhere to their self-management as recommended. Clinicians need to ensure that patients are not experiencing adverse effects — both physical and mental — related to using medications or at-home treatments. It is also important for clinicians to understand if patients have any unpleasant feelings associated with medication, such as a fear of injections or difficulty swallowing pills.
In countries without universal healthcare, studies have found that out-of-pocket costs are an important determinant of how likely patients are to adhere to their treatment. Patients who have lower incomes are more likely to face economic barriers to consistently taking their prescribed medications. Patients cannot be expected to overcome their own economic barriers, and many general practitioners are ill-equipped to help patients access more affordable treatment.
If unaddressed, these barriers to successful adherence can lead to a decline in the patient’s condition, lower quality of life, development of additional health issues, long-term or repeated hospital admission, or death.
Despite these multifaceted challenges, there are steps clinicians and patients can take to improve patients’ access to and experience of disease management.
When patients understand and feel engaged with their own care plans, they are much more likely to adhere to clinical recommendations.
The patient’s relationship with their healthcare provider is one of the most important interactions in healthcare, but it is only one part of a larger system of support. Augmenting the patient’s care team with a variety of support specialists — such as health coaches, counselors, care coordinators, and disease educators — can help patients adhere to treatment regimens and experience better health outcomes.
These methods of patient support can vastly improve self-management between office visits and make appointments more efficient and productive.
Even if it feels counterintuitive to a clinician, the key to overcoming patient non-adherence is this: Healthcare professionals need to position the patient as the primary decision-maker in their own care and actively support the patient’s efforts to achieve their care goals.
Clinicians can embody this approach by asking the patient questions such as:
“What would you like to get from today’s visit?”
“What’s most important for you?”
“How can I help you reach your goals?”
“What’s hard for you?”
“What confuses, concerns, or frightens you?”
“Do you need help identifying less complicated treatment options?”
“Do you need help finding less expensive treatment options?”
Integrating activities such as goal setting and problem solving into routine appointments will help facilitate patient and clinician communication that goes beyond mere status updates. Additionally, connecting patients with health coaches gives them an opportunity to easily ask questions and share self-management updates between appointments.
Alicia Warnock, M.D., is the chief operating officer of Stability Health, a diabetes management company.