An end-of-life directive is one of the most sensitive, emotional decisions ever made by a patient. Even when documented, not all are followed, however. Sometimes, patient end-of-life preferences are not pursued because providers and caregivers can't find the patient's instructions in the electronic health records, according to a Minneapolis StarTribune article.

At the heart of this issue is that not all of the records — including the patient's end-of-life directive — are always located in a single, specific place within the EHR. Thus, it is essentially lost because caregivers do not know how to access it.

As the newspaper reports and as those familiar with EHR technology understand, EHRs often can store advance directives, but where these instructions are located are often not in the same place in every system. Or they're stored in more places than one or in more than one location. Thus, finding this information — as important as it is — is often a difficult task.

According to the StarTribune, one patient featured — who had a tumor and who filled out a Provider Order for Life Sustaining Treatment (POLST) and added it to her EHR — ended up in her hospital's emergency department with cardiac arrest: "Although the POLST said that the patient should not be resuscitated in the event of cardiac arrest, she was resuscitated anyway because the POLST could not be found in the EHR."

The newspaper reported that the patient was "treated in the emergency department by a physician who had missed training on where advance directives documents were located in the electronic record. They originally were placed in a file under 'administrative' and then moved to a file named 'media.'"

Apparently, advanced directives give caregivers a better understanding of patients' wishes will help reduce the cost of care at end of life while improving quality and satisfaction of patients and their families. Essentially, they are designed to let the patient express their advanced wishes prior to anything devastating takes place.

Minneapolis-based Lumināt, which develops care planning tools, integrates patients' end-of-life directives into their electronic health records.

"Unwanted end-of-life healthcare services can have a significant emotional and financial impact on patients and their families," said Tom Valdivia, M.D., chief executive officer of Lumināt, in a recent news release. "It's estimated that $40 to $70 billion in unwanted healthcare services will be delivered at patients' end of life in the next decade. Advance care plans should not be viewed as a 'nice to have.'

"Up to this point, patients completed the advance care directive on paper and submitted it to their physician to be filed away," he added. "As a result, the instructions weren't accessible by all providers and were left open to interpretation from doctor to doctor."

Additionally, because many EHR systems are incompatible with each other, the software used by the patient's primary care provider may not communicate with another provider's software — leaving staff unaware of the patient's wishes.

However, some EHR systems have implemented a dedicated advance directive tab in patients' records, which makes the information easy for providers to find in an emergency. Health IT company Cerner has gone so far as to launch a website that allows patients to upload their forms so their doctors can access them when needed.