As an American Diabetes Association recognized program, we are required to have annual advisory meetings. During the year, our team meets monthly to discuss multiple issues that present during the preceding weeks. As our diabetes program increases annually by approximately 15 percent, we are always looking to improve our delivery of patient care and look for innovative methods to provide diabetes education. At our last team meeting, we debated the issue of patient autonomy in relation to diabetes care. Our social worker raised a very important distinction between the management of a disease, such as diabetes versus childhood leukaemia. The traditional medical paradigm is such that the healthcare team prescribes the appropriate treatment including laboratory and radiographic diagnostic procedures as well as specific medication and appropriate doses, etc. This classic medical treatment plan is not always applicable in the day-to-day management of diabetes. Indeed, it is actually contrary to what most patients and families have experienced in their past relationships with healthcare professionals. After the diagnosis of a life threatening disease, families rely on the healthcare team to outline detailed and specific treatment plans that should be followed as closely as possible to obtain the best possible outcomes. This is true for all illnesses; however in the treatment of diabetes there is a huge dichotomy. We often "manage by committee" and allow (encourage) gradual independence and autonomy for our patients and families. This certainly is not the case in a disease such as leukaemia wherein the oncology team (after consultation with the family in terms of treatment modalities and chemotherapeutic regimens) follows specific protocols that generally do not deviate.
After diagnosis of new onset diabetes, the next step is intensive diabetes education or "survival skills." At Children's National Medical Center, diabetes nurse educators provide the initial instruction. After discharge, our patients (caregivers) call our nurse educators daily during the week and our physicians on weekends for insulin dosage adjustments. The concept that our nurse educators are given the responsibility and autonomy to make these dosage adjustments without direct supervision from the physician is often surprising to patients and families. (Of course the initial insulin regimen has been discussed and approved by the physician and family after explaining the various options appropriate to the family's lifestyle.) It may be several months after diagnosis before the child and family have their first outpatient visit with a physician. Thus, in the management of diabetes, there is frequent interaction between various members of the diabetes team (nurse educators, psychologist, social worker, and dietician) as well as the physician. The caregivers and child with diabetes are clearly the most important members of the joint care-giving team and are the drivers of communication. Over the next few weeks, there is a great deal of education that flows in a two-way dialogue between caregiver and educator. Patterns of blood sugars are identified and insulin dosages are therefore adjusted based on these patterns. It is hoped, and indeed, expected, that family caregivers will begin to comprehend how to make those changes after frequent communication with the diabetes team.
The big question then, after the initial diagnosis of new-onset diabetes is when do we, as diabetes educators, slowly wean our patients from daily communication in terms of insulin dosage adjustments? When is it time to allow our patients to begin to assume autonomy? The general team consensus is after our families have attended Concepts Class (averaging one month after survival skills class). However, we have noticed that not every family is ready to assume this responsibility. As such, our team has asked ourselves the following question, have we enabled our families to become autonomous? Since day one, have we encouraged independence and the ability to problem-solve with our support, rather than enabling our patients and families to passively rely on us? When does "hand-holding" become stifling and suffocating preventing independent thought? These are just a few of the queries we face as we try to develop improved methods of patient education and satisfaction with our program without sacrificing care.
I would appreciate any input from the HealthCentral community.
Published On: May 31, 2011