Andrea Hayes at dinner

Living with Diabetes: Adherence and Advocacy are Essential

Diabetes is a chronic condition that affects how the body uses energy consumption (glucose) for metabolic processes (energy). If uncontrolled, the disorder can lead to a number of health problems, including heart disease, stroke, blindness, and kidney failure. People with diabetes need to take care of their health by managing their blood sugar levels, eating a healthy diet, exercising regularly and in most cases, taking medication. Successful diabetes management requires the patient to adhere to the treatment plan and become their own health advocate.

Most Patients Don’t Intentionally Ignore Their Treatment Plan

Too many healthcare providers come up with a treatment plan and then rely on the patient to successfully implement that plan. With diabetes and many chronic diseases, it’s just not that simple. Unfortunately, when patients do fall short or fail to implement the plan successfully, the provider’s reaction is to label the patient as “non-compliant.” This takes the blame off of the healthcare provider and places it on the patient. The word represents a derogatory view of patient self-care and implies patients are intentionally ignoring their provider’s advice. This is almost never the reality.

As someone who has lived with diabetes for 43 years and practiced endocrinology for 26 years, I can tell you that almost all patients want to follow the treatment plan. However, some don’t fully understand the plan, have difficulties with insulin and other medications prescribed, or encounter financial difficulties or other life events that prevent them from fully following such advice.

Successful Diabetes Management Requires a Team-based Approach

Instead of “non-compliance” I much prefer the term “non-adherence.” This term doesn’t blame the patient as someone who deliberately refuses to follow medical advice. Managing diabetes properly requires a huge amount of energy, determination and self advocacy. And, it is a learning process, with setbacks along the way. While the patient is in charge of their disease management, a focus on “adherence” to a treatment plan focuses more on a team approach between doctor and patient that will result in a more successful outcome. 

 

Behavioral health experts break down the 5 categories of helping patients improve adherence to a treatment plan to the following steps: Assess, Advise, Agree, Arrange and Assist.

  1. Assess: The provider needs to properly assess the patient in terms of where they are in their disease state, how long the disease has been present and what complications exist. People with diabetes need to identify a provider that is well-versed in treating this complicated disease.
  2. Advise: The provider will advise patients on a proper treatment plan. Patients must identify a provider that they trust. If there is apprehension from the patient regarding the qualifications and/or experience of the provider, then advice may not be considered the gospel.
  3. Agree: The treatment plan should then be an agreement between doctor and patient taking into account the patient’s medical condition, socio-economic factors, lifestyle and goals of treatment. For example, a patient who is 85 years old should not be treated with the same protocol as that of a 35 year old. Many factors should be considered in developing the doctor/patient agreement. 
  4. Arrange: There are several items that should be arranged when the agreement is made. Common considerations are: who will administer the insulin?  Who prepares meals and what do they consist of? Will the patient’s insurance cover a continuous glucose monitor or blood sugar testing strips? Are dietary recommendations achievable? Is the exercise plan realistic? 
  5. Assist: The last item to be considered in the adherence plan is how the healthcare provider assists the patient. Do prior authorizations need to be done in order to allow the best meds to be covered by insurance companies? How will the patient learn to give insulin? Will family members need to be educated? How will the patient learn to consume a proper diet? Does the patient need to see other specialists such as an ophthalmologist, a nephrologist, a cardiologist, a podiatrist, a dietician, a certified diabetes educator? Does the patient or family have questions that need to be addressed between visits?

I believe a focus on “adherence” will result in much more “compliance” with a treatment plan that is mutually agreed upon by both doctor and patient.  At the same time, It is especially important for people with diabetes to be their own health advocates. This means taking an active role in care and speaking up for one’s needs. Asking questions and providing input to your provider on your current lifestyle, healthcare goals and challenges that you anticipate will help your provider determine a reasonable and realistic treatment plan. Allow for a continuous, fluid conversation with your provider concerning your challenges, successes and barriers to your diabetes care regimen. For the doctor/patient relationship to be successful long term, remember that YOU are the most important participant in your health care journey. Cheers to good health!

 

A version of this post appeared in Health & Wellness magazine.