Non-interoperable directives: End-of-life wishes and EHRs don't yet mesh

Dr. Nancy Girard, a solo family physician in Alexandria Bay, N.Y., broaches the subject of end-of-life care preferences with her patients by cracking a joke about “death panels.”

But she then earnestly collaborates with interested patients to draft their advance directives using an online system called eMOLST. The form is available electronically to other healthcare providers. “As you're having the conversation, you're just checking boxes,” she said. “It's really easy.”

What's not easy, though, is getting area hospitals to consult the directives. “It's a great frustration if you take the time to talk to a patient and find out what they would want in certain circumstances, and note that in a directive, (but then) no one looks at it when a patient gets into those circumstances,” Girard said.

Most Americans want their preferences for end-of-life care known, respected and shared with their healthcare providers, and most clinicians want to know and honor their patients' choices. Proponents of advance directives say the documents can improve patients' and families' end-of-life experiences and reduce costs for futile care.

Advance directives could be available to all caregivers through interoperable electronic health-record systems. But for a majority of patients and providers, it's not happening. Often, directives are not electronically accessible to emergency physicians, emergency medical technicians, and nursing home or hospice staff when they need them. Few EHR developers have templates in their systems to create, store and exchange end-of-life directives.

Many barriers that obstruct interoperability with other types of health information also affect directives. These include a lack of common IT standards, financial incentives that discourage information sharing and providers' reluctance to make critical decisions based on records from providers they don't know. In addition, efforts to make directives more accessible electronically face political sensitivities that remain from a 2009 controversy over what conservative leaders inaccurately claimed were “death panel” provisions in the healthcare reform legislation.

“The systems really aren't there yet,” said Katherine Dowling, director of health information management practice excellence at the American Health Information Management Association.

Healthcare organizations are struggling to store and retrieve their patients' end-of-life directives even within their own health IT systems, she said. For most, the directive is only viewable in the provider's own EHR. If the patient and provider are lucky, the EHR might have a built-in alert informing the provider that a directive exists. There is no mandate for transmission and sharing of directives, she said.

Still, developers of smartphones and cloud-based systems are rolling out niche products to facilitate sharing of end-of-life directives.

Last September, the Institute of Medicine issued a report entitled Dying in America, which said that comprehensive end-of-life care should provide “coordinated, efficient and interoperable information transfer across all providers and all settings.” The IOM called for the government to require interoperable EHRs that “incorporate advance care planning to improve communication of individuals' wishes across time, (care) settings and providers.” But in January, when federal health IT policymakers released an interoperability “road map,” there was only a brief mention of interoperability for advance directives.

Near the Twin Cities, many healthcare organizations participate in a collaboration called Honoring Choices Minnesota to improve end-of-life care. The effort calls for regional interoperability of electronic directives. But providers are a long way from achieving that, even in a market dominated by one EHR vendor, Epic Systems Corp. “Our journey with Epic has been long and painful, but they are getting there,” said Sue Schettle, executive director of the Honoring Choices program.

Among Epic customers, different releases of the software are used across the region. So “advance care planning and storage of those documents is not standard within Epic itself,” said Heidi Meyers, advance care planning coordinator for Fairview Health Services, Minneapolis. “There is definitely room for improvement.”

Epic spokeswoman Erika Koch said the company is working to develop an advance care planning module for release this summer. That should help “standardize how information is collected across organizations,” she said. State and organizational requirements for the documents vary, and “standards for exchanging end-of-life plans are still relatively immature.”

In Texas, Dr. Robert Fine, director of the office of clinical ethics and palliative care for Baylor Scott & White Health, wrestles with multiple interfaces in a health system that inherited dozens of EHRs after a 2013 merger. Most of Fine's patients are elderly and have an advance directive. A tab in the GE Centricity EHR he uses tells him if there is an advance directive for a patient. “If my staff has done its job right, it's there,” he said. But finding that patient's directive with an EHR of a different healthcare system is a problem. “In my opinion, none of the currently available comprehensive medical records do a particularly good job in advance healthcare planning or making it easy to store and retrieve directives,” Fine said.

There are islands of progress, however. Rochester, N.Y.-based Excellus Blue Cross and Blue Shield offers interoperability through an end-of-life directive form for terminally ill patients called Medical Orders for Life-Sustaining Treatment, or MOLST, known in other states as Physician Orders for Life-Sustaining Treatment, or POLST. In 2011, Excellus launched the Web-based registry, eMOLST, to make the directives accessible online.

“What's cool about our system is it not only creates a copy of the (MOLST) form, but it also creates documentation of the discussion” leading up to the document's creation, said Dr. Patricia Bomba, vice president and medical director of geriatrics for Excellus and eMOLST program director. Because it is Web-based, staff at nursing homes or skilled-care facilities without an EHR can still access the information through any computer with an Internet connection.

One drawback to a stand-alone, Web-based registry like eMOLST is that it disrupts clinicians' workflow by forcing them to log into the registry's website to search for a patient's record there. But building interfaces between eMOLST and the hundreds of EHRs on the market would be complicated and expensive.

Beth Israel Deaconess Medical Center, Boston, has implemented a system to scan signed, paper-based healthcare proxies and MOLST forms into its EHR called the Web Online Medical Record. Beth Israel was part of an Institute for Healthcare Improvement project on end-of-life care called Conversation Ready. The hospital has created links within its system to find and retrieve physician's notes on patient conversations about end-of-life issues, said Dr. Lauge Sokol-Hessner, Conversation Ready's team leader.

The scanned documents “ought to ultimately be transferred” through health information exchange networks, Sokol-Hessner said. But “I don't think we're there yet.”

In LaCrosse, Wis., Gundersen Health System and Mayo Clinic Health System-Franciscan Health Care have collaborated to create an advance care planning model called Respecting Choices. Both systems have reliable ways of storing and retrieving directives in their own EHRs. Gundersen uses an EHR from Epic, while Mayo uses a Cerner Corp. EHR.

Still, the two providers can't share the directives between their EHR systems, said Bernard “Bud” Hammes, director of the Respecting Choices program at Gundersen. Staff must call providers at the other system and request that directives be faxed over. Many local nursing homes, however, can access Gundersen's EHR and read patient directives.

Some healthcare organizations are turning to outside vendors to solve the problem. Coordinated Care Oklahoma, a five-state health information exchange based in Norman, is about to sign an agreement with MyDirectives in Richardson, Texas, to serve as its central repository for end-of-life directives, said Dr. Brian Yeaman, chief administrative officer for the exchange.

MyDirectives went live in 2013 with a cloud-based service offering advance directive creation, storage and retrieval. MyDirectives accounts can be created free of charge to the consumer, while providers and health plans pay subscription fees to use its database service. The company released an iPhone app in January.

Ensuring that clinicians have the most recent copy of a patient's directive is critical, said Yeaman, who also serves as chief medical information officer at Norman (Okla.) Regional Health System. He likes that MyDirectives date- stamps any directive revisions, presenting the most recent version to clinicians. He also likes its iPhone app, which allows patients to record a video statement detailing their end-of-life preferences.

Jeff Zucker, CEO of MyDirectives, said the website and app help users create a login and password, and then takes them through a set of questions to build their advance directive entirely online. If users already have a POLST, they can upload that, too.

A hospital can request and pull a patient's directive from the MyDirectives database into its EHR system if the provider has a contract with the company. Patients also can send their directives to the hospital through the MyDirectives link. But Zucker said they do not yet have enough direct interfaces with provider EHRs.

Cerner, which provides IT services to Oklahoma's HIE, considered building its own repository for end-of-life directives, said Bob Robke, vice president for interoperability strategies and solutions. But when Cerner leaders learned what MyDirectives had built, they decided not to “reinvent the wheel” and chose instead to interface with MyDirectives. “They've got a really good model, and they have the technical infrastructure to do all the connectivity,” Robke said.

Follow Joseph Conn on Twitter: @MHJConn