In the last few years alone, we have seen numerous, heartbreaking stories of childhood deaths from diabetes due to a misdiagnosis or from parental hesitance to accept the diagnosis and to start insulin therapy.

Most recently, the media highlighted a case of a young boy’s parents who turned to an herbalist, who advised them their son with type 1 diabetes did not need insulin.

What’s wrong with this picture?

We know very well that lack of speedy diagnosis is very common with type 1 diabetes, with up to 40% of children presenting with diabetic ketoacidosis (DKA), a life-threatening condition by the time a diagnosis is made. Undoubtedly, routine screening needs to become commonplace, as advocated by the Test One Drop campaign.

However, why is it that some parents (or patients) hesitate to believe their health care practitioner when a diagnosis is made? Why ignore medical advice and turn to “natural remedies” in the face of a deadly disease?

Perhaps the issue lies deep in the general lack of trust of the health care system.

Distrust of the Health Care System

One survey study found that “Distrust of the health care system is relatively high in the general population in the United States and is strongly associated with worse self-reported health.”

Experts note that

“Trust in health care relationships is a key ingredient of effective, high-quality care. Although the indirect influence of trust on health outcomes has long been recognized, recent research has shown that trust has a direct effect on outcomes of care.”

Is distrust in the health care system in the U.S. today contributing to the reluctance of parents and patients to seek timely health care, and moreover, to accept diagnoses and follow the prescribed treatment plans?

A high level of avoidance of medical care, even when concerning symptoms are present have been described. It appears that sometimes barriers like access (e.g., cost) are the main reasons. However, in other instances, a “low trust in doctors” and/or emotional factors (like denial) are believed to be at the root of the issue.

Medical Malpractice Now Third Leading Cause of Death?

Strikingly, a recent report suggests that medical errors are now the “third leading cause of death in the U.S.”

Some experts believe that the number of deaths attributed to medical error is a considerable overestimation. Of course, this measure is inherently difficult to accurately quantify, but such reports certainly do not inspire trust in today’s health care system; nor do the continued stories of parents pushing for an appropriate diagnosis to save their child’s life in the nick of time.

The explicit reasons behind the concerning rates remain to be fully elucidated, as experts call on more research to identify the most relevant factors and take the appropriate steps to address this issue.

Conclusions

Of course, trust is only one issue when it comes to a lack of timely and appropriate health care. There are more traditional barriers to seeking appropriate health care, including high cost or lack of education or understanding about a particular condition, that may predispose somebody to seek alternative options. Very sadly, seeking “alternative care” for type 1 diabetes has proven to be lethal more than once in recent history.

While more research and appropriate policy change are certainly warranted, what can be done today to attempt to improve the misdiagnosis and death rates from untreated diabetes? Will social media campaigns pave the way? Please share your thoughts on the matter in the comments.

Read more about children with diabetes, diabetes diagnosis, diabetes management, health care, insulin, Intensive management.