The Need for Diabetes Advance Directives to Support the Care of People With Diabetes

Abstract

It is time to adopt an advance directive specific to diabetes management. Research shows that people with diabetes in the hospital are often removed from existing diabetes self-management, resulting in poorer outcomes. Diabetes advance directives, which outline preferred diabetes self-management in scenarios such as hospitalization or outpatient procedures, are key for enabling patients with diabetes to continue successful diabetes management including use of existing diabetes technology. A diabetes advance directive is a new concept for both patients and providers that can improve clinical outcomes and patient-reported outcomes. Given the risk of harm in the absence of such a document, diabetes advance directives can be a useful new tool for patients and providers and to aid in the discussion, care planning, and self-management with diabetes technology.

It is time to create a new standard for diabetes management in hospitals and outpatient settings: one in which, wherever possible, people with diabetes are able to retain existing self-management of diabetes, including use of preferred diabetes technologies. One such way to achieve this is by creating and adopting an advance directive specific to diabetes management, known as a diabetes advance directive. Diabetes advance directives, which can outline preferred diabetes self-management both for routine times and also for scenarios such as hospitalization or outpatient procedures, are key for enabling patients with diabetes to continue their diabetes management (usually self-management) and use of diabetes technologies whenever possible, both in outpatient procedures and also in inpatient hospital settings.

Research has shown that patients with diabetes in the hospital are often removed from their existing management, and often with poorer outcomes. According to the Institute for Safe Medication Practices (ISMP), a study in 2008 showed that insulin was the leading drug involved in harmful medication errors, representing 16% of all medication error events with reported harm. ¹ Another study that ISMP cites found in 2010 that the most common medical errors in critical care patients were insulin administration errors. In some cases, providers in hospitals revert to sliding scale insulin, despite data showing that it is ineffective for managing hyperglycemia in the hospital setting. Sadly, the reasons for choosing these therapies for patients with diabetes are in some cases due to the perceived “convenience” of the provider, ² rather than on what is optimal for the patient. This happens even with optimal care provider staffing levels and is thus likely further exacerbated during staffing shortages such as during various waves of the COVID-19 pandemic.

In the United Kingdom, the National Health Service (NHS) has led a campaign on insulin dosing errors in the hospital, citing data that errors involving using the wrong insulin product, omitted or delayed insulin dose, and wrong insulin dose accounted for 60% of 16,600 insulin-related adverse drug events (including six deaths) reported in the United Kingdom between November 2003 and November 2009. ³ The National Specialty Advisor for Diabetes to the NHS in the United Kingdom felt it was important recently to call out on Twitter ⁴ a reminder that people with diabetes should be allowed self-management of insulin, unless they are incapable or choose to delegate.

A small minority of hospital encounters for people with diabetes are for hypoglycemia or hyperglycemia/DKA, which often requires healthcare providers to appropriately administer IV insulin or glucose or otherwise take over blood glucose management. But the vast majority of health care encounters are for issues not directly related to blood glucose. The ongoing and rapid pace of development of diabetes technologies resulting in new technology such as automated insulin delivery (AID) systems, which many providers may be unfamiliar with, further exacerbates these situations where providers may be prone to remove technology that they are less experienced and familiar with. However, early research into both open source and commercial AID shows successful use of AID and diabetes self-management with technology in scenarios such as pregnancy and delivery,^5-8 surgery,^9,10 and other outpatient procedures.

In those inpatient and outpatient procedure settings situations where the encounter is not directly related to blood glucose, it is inappropriate for self-management to be automatically revoked and people with diabetes to be removed from their insulin pumps or put on IV insulin, because “generally, patients know more about the practicalities of their insulin treatment than healthcare professionals with intermittent involvement.” ¹¹

In between the extremes is a gray area that is another common source of substandard care for people with diabetes: medications that might affect blood sugars. In certain cases, like with steroids, a medication has a large and well-known effect on blood glucose, requiring a change in therapy to safely handle the interaction. But in other cases, providers often inappropriately modify care for people with diabetes because standard care “might” affect blood sugars. In those cases, it is important for patients to be able to express their wishes, in advance directive language that providers will understand, as to what approach they would like health care providers to take. Advance directives are documents used by patients to articulate their decision preferences and to enable them to continue to participate in shared decision-making should they become incapable of making care decisions. They are often used to express choices near the end of life. ¹²

As a result of all these common issues, many people living with diabetes avoid hospital care or delay necessary care, out of fear of the impact on diabetes management. This has been further exacerbated by the COVID-19 pandemic. ¹³

We could change this, in part by creating, distributing, and sharing a diabetes-specific advance directive template that patients could fill out and bring with them to the hospital or clinic, just like any other advance directive they may choose to create.

A diabetes advance directive could lay out their current therapies and tools; their preferences for self-management (or not); their delegate or proxy such as a child, partner/spouse, or parents who they authorize to take over diabetes management decisions; and their wishes for glucose targets and management in varying scenarios. For example, for an adult with type 1 diabetes who prefers diabetes self-management even when hospitalized (where possible), they could articulate their preference to continue use of their own insulin pump and continuous glucose monitor, their own BG meter when a fingerstick BG is required, and their typical “sick day” procedures and glycemic targets that may be more flexible than standard glycemic targets. With regard to diabetes technologies such as AID systems, the diabetes advance directive could also describe what situations the system likely could and could not manage directly, given the specific version of technology.

A diabetes advance directive would give patients a framework for initiating a dialogue at intake at a hospital or outpatient procedure setting to establish their wishes and plans for self-management (or not). The language of “advance directive” is something that clinical teams already understand and have a framework for. Thus, a diabetes advance directive would easily fit into clinical pathways and existing documentation frameworks for clinical teams to reference and use.

Many clinical providers work with patients with diabetes to not only establish daily diabetes care plans, but also a “sick day plan” or “sick day rules,” a template or guidelines for a patient can use for diabetes self-management when they are ill at home. A diabetes advance directive for hospital or procedural care would therefore be a natural companion to this discussion, where health care providers could inform patients about the option to also create a diabetes advance directive and provide templates or examples, and support patients in developing their diabetes advance directive and helping them understand when and how to present it to future clinical teams to better facilitate the continuity of their diabetes self-management plans.

While advance directives may not be widely known outside their use for end of life care, ¹⁴ a diabetes advance directive leverages the known language of “advance directive,” meaning the document would have an existing place to be recorded in the electronic medical record, and clinical teams would be trained to access the document and potentially use it.

A diabetes advance directive is a new concept for both patients and providers, but given the risk of harm to people with diabetes without such a document to aid in the discussion, care planning, and retaining of the right to self-management of diabetes whenever possible, it is time to establish the use of diabetes advance directives as a tool for patients and providers to communicate to help improve both clinical outcomes and patient-reported outcomes.