Partners in Treatment
The challenges of providing diabetes care vary greatly across countries, cultures, and systems of care. Past editorials have highlighted the uncertain future of those with diabetes in the developing world. A recent experience reminded me of some of the challenges we face here in the United States.
My new patient Greg (not his real name) is a 30-year-old man who was diagnosed with type 1 diabetes in grade school. He's recently had problems with severe and disabling hypoglycemia and has also experienced periods of severe hyperglycemia associated with nausea and vomiting. Unfortunately, I found Greg to have high blood pressure, protein in his urine, and markedly decreased kidney function. He was unaware of blood pressure targets and recommendations for regular screening for diabetic nephropathy.
Greg gave a history of frustration with his previous providers because they simply weren't listening to him. Because treatment regimens were not designed with his unique needs in mind, they were doomed to failure. He therefore effectively jumped ship and managed on his own as best he could. The fact that he was self-employed and had difficulty obtaining affordable health insurance didn't help. He's now struggling to find a road back to some sense of normalcy and some control over his future.
Unfortunately, stories like Greg's are not uncommon. Why aren't we doing better given our advanced knowledge and modern treatments? Part of the answer to that complicated question lies in the fact that we often fail to listen to patients' perspectives and experiences. A critical opportunity to involve patients as valuable collaborators in their own care is therefore lost.
We've taken a different approach in working with Greg to design a new treatment regimen that fits his lifestyle and his risk for hypoglycemia, taking into account the challenges he faces in his daily life. He's been involved in discussions about the pros and cons of different treatments and in the selection of a treatment plan. His contribution to the decision-making process was considered equal in value to that of others.
Greg's life has become more predictable and he can get through his workday with less fear of an impending crisis. He knows he's doing what he can to prevent or delay the progression of complications. He checks his blood glucose regularly and comes to his clinic appointments. Had Greg been continuously educated and empowered to actively participate in his own care from the time of his diagnosis, he may have been able to manage his diabetes better and to avoid the complications he now faces.
How can you establish a collaborative relationship with your providers? Start by telling them you want to play a more active role. Don't be shy about talking about your day-to-day difficulties in managing your diabetes. For example, if you have trouble remembering to take your medications, you may be a candidate for medications that are taken once daily or single tablets that combine two medications. If you're having trouble with medical costs, there are usually lower-cost alternatives or opportunities for assistance you may not be aware of. Even if you just have some nagging concern that's keeping you from getting the most from life, talk about it. These are just a few examples of the important contributions you can make to the collaborative process.
Admittedly, our fast-paced system of care makes finding time for these discussions difficult. Without this human interaction, the latest science and technology is of limited value.