This week marks a nationwide celebration of health information technology (IT), and those of us in health care can quote almost verbatim the arguments for health IT: It improves care coordination; it decreases gaps in care; it empowers patients with greater access to their personal health information; and so on, but rarely do we hear about what it can do for end-of-life care.
Quite frankly, it can do a lot.
Documentation Is Key
As a health care provider and advocate for advance care planning, I encourage patients to not only discuss their end-of-life care goals and treatment wishes with their loved ones, but also to record those wishes with the appropriate documentation – an advance directive, or ‘living will,’ a health care power of attorney or, if the patient has a serious, advanced illness from which he/she is not expected to recover, a Physician Orders for Life-Sustaining Treatment (POLST) document.
In the best of scenarios, patients complete these documents and let their loved ones know where to find them when they’re needed and let their health care providers know that these documents are in place. In doing so, their loved ones are not left to make difficult decisions regarding their end-of-life care, and their providers know precisely how to proceed with their treatment.
Unfortunately, in health care, we don’t always see those best-case scenarios. More often, our patients have not completed any advance care planning, and their loved ones aren’t sure what they would and would not have wanted. Often, too, even when advance care planning has been initiated and completed, these documents are out-of-date or not readily available, particularly in emergency care settings and during transitions of care.
But there is a solution, and health IT is that solution.
Moving Beyond Paper
As health care becomes increasingly digitized, we are slowly coming to realize the role of health IT in advance care planning. More and more providers are transitioning from paper-based charts to electronic health records (EHRs), and this transition provides a unique opportunity to improve the availability of advance care planning documents within and between care settings.
Historically, according to the U.S. Department of Health and Human Services (HHS), less than 36 percent of the adult population has completed advance care planning, and those with serious, advanced illnesses have done so at only a slightly higher rate. Further, HHS data shows that physicians are largely unaware of their patients advance care planning documents and for the most part, don’t discuss end-of-life care planning with their patients.
But EHRs provide a mechanism capable of changing that simply by requiring information about whether or not the patient has any advance care planning documents in place and featuring easily-navigable access to scanned copies of those documents.
Further, as EHR technology has evolved, they are capable of recording changes to these documents as the patient’s condition and preferences change as well as related data such as contact information for the patients’ health care representatives, and records of previous advance care planning documents. In addition, EHRs can alert a patient’s primary care physician when it’s time to update or review the patient’s advance care plan or when the patient loses his/her decision-making ability.
Case in point: In 2002, one of the community health care systems in LaCrosse, Wisconsin, launched an advance care planning-focused application within its EHR system. It stores advance care planning documents electronically and enables physicians to add notes about their patients’ care plans and to access these notes and documents within 10 seconds of opening their patients’ EHRs.
The incorporation of advance care planning with EHRs has been so successful there, in fact, that approximately 96 percent of people who die in LaCrosse have an advance care planning document in place, compared to a national rate of about 30 percent.
The possibilities are endless, but the fact is, the documentation of a patient’s end-of-life care goals and treatment wishes is just as important as the documentation of his/her allergies and medications.
Advance care planning does not have to start and end with EHRs. When health care began its technology-based transformation several years ago, the idea was to implement EHR systems among health care providers and then to connect those systems and providers via a central health information exchange (HIE).
We are now beginning to see this connectivity and the many benefits it brings with it in terms of improved quality of care, but we must not forget that end-of-life care is a quality issue as well.
HIEs, by their very nature, are central repositories of patients’ health information, but over the last few years, they have advanced into something more than bi-directional data exchange. Today’s HIEs feature analytics platforms and clinical integration solutions capable of ‘drill-down’ data mining and population health management support.
With that level of innovation and technology in effect, HIEs can also serve as central repositories for patients’ advanced care plans.
Bridging The Gap With Health IT
There are dedicated electronic registries for advance care planning documents. The U.S. Living Will Registry, for example, offers advance directive filing and storage, and many states have similar services in place. However, although timely access to these documents is critical to the families who must make decisions about their loved ones’ care, they cannot be accessed without knowledge of the documents’ location and the username and password.
But HIEs represent an opportunity to bridge that gap, and in some places, they already are.
In LaCrosse, Wisconsin, advance care planning information that has been documented in a patient’s EHR is shared with Regional Health Information Organizations (RHIO) to ensure its availability to other health care providers across the care continuum.
In Oregon, patients’ POLST documents are stored within a database that enables health care providers – including emergency responders - to call and confirm the patient’s identity by providing specific, key information, and retrieve instructions from the patient’s POLST form on how to proceed with treatment in less than two minutes.
In Rochester, New York, the Rochester RHIO HIE, which serves a 13-county region, offers a secure patient portal that allows patients to upload PDFs of their own advance care planning documents to ensure their accessibility to authorized providers.
In Virginia, the West Virginia Health Information Network (WVHIN) features an online, comprehensive advance directive registry, which can be accessed as part of WVHIN’s HIE or as a stand-alone service. Other states – Virginia, Idaho and Montana, for example – have created similar registries with plans to connect them to their statewide HIEs.
Thus, the technology is in place to drive advance care planning to improve the quality of care at the end of life. We need only take advantage of it.
And there’s no time like the present to start.