Commentary

Abstract

In the last 20 years, progress has been made to develop resources for advance care planning (ACP). Several ACP delivery tools have demonstrated progress, but more are needed to improve ACP delivery systems. Providers continue to indicate that increasing patient volume, increasing patient complexity, and an increasing paperwork burden have adversely affected quality ACP delivery. An increasing and ubiquitous use of health information technology, such as electronic health records and electronic health record–tethered patient portals, affords opportunities for innovation to streamline communication methods between providers and patients. In a medical culture that provides only limited time for physician and patient interactions, physician-patient communication using electronic health record–tethered patient portals may provide a time-efficient, low-cost mechanism for effective ACP.

Advance care planning (ACP) refers to the process of creating a clear plan for future medical decisions in the event that an individual is no longer able to communicate, and it includes the completion of advance directives.^1,2 ACP is intended to assist patients in reflecting on their goals, values, and beliefs; considering future medical treatment preferences; appointing a surrogate; and documenting their wishes regarding future medical treatment. ³ ACP delivery has been shown to lead to improved patient satisfaction with care, improved patient quality of life at end of life, and better psychological outcomes of grieving family members after patient death.^3-5 ACP delivery has also been linked to increased hospice referrals and decreased intensive care unit use, which may be associated with an overall decrease in health care costs. ⁶

Several policy organizations, including the Agency for Healthcare Research and Quality and Assessing Care of Vulnerable Elders, have emphasized the importance of consistently integrating ACP into outpatient clinical practice, especially in patients over 65. Recent changes in federal health policies, such as the annual Medicare physical, have increased the need for primary care ACP delivery tools. ⁷ There are new opportunities for clinicians to provide reimbursable ACP services, and these services may be included in future evaluations of quality of care. ⁸

ACP Delivery Success and Failures

While the importance of ACP has been emphasized, specific practice guidelines have yet to be well defined.^9,10 Rates of ACP documentation remain low, even for patients with advanced illness. ¹¹ The Patient Self-determination Act was implemented as federal law in 1991, and it requires health care institutions to provide information to patients about advance directives upon admission. Twenty years later, the act has neither increased documentation of advance directives within the medical record nor altered patient decision-making trends regarding resuscitation. ¹² Studies continue to demonstrate poor baseline rates of documented ACP, not exceeding 31%, even in patients with metastatic cancer with an expected survival of about 4 months.^11,13,14 Additionally, concerns exist about the clinical utility of state-supported legal advance-directive forms routinely used to provide guidance in ACP. ¹⁵

Quality of ACP in the e-Era

Consistent ACP documentation in the medical record must be maintained to avoid propagating erroneous patient wishes. Many patients have ACP wishes outlined in advance directives or a living will, but wishes are often not communicated to physicians and other providers ¹⁶ (ie, patient is full-code status when an existing do-not-resuscitate order is at home). Additionally, an advance directive is often inadequate to describe a patient’s full-scope end-of-life care goals.^12,17-19

Researchers at Pennsylvania State University have been working to develop an electronic decision support tool that patients can use in the determination of their wishes, goals, and preferences for end-of-life care.^2,20 This tool helps an individual consider several potential medical scenarios to create an individualized advance directive. However, this novel method for advance directives completion requires the patient to give the resulting documentation to the provider for addition to the medical record and provider inclusion in ACP discussion.

The use of the electronic health record (EHR) has become more ubiquitous in the current practice of medicine. In 2009, the Health Information Technology for Economic and Clinical Health Act was passed as part of the American Recovery and Reinvestment Act and was designed to promote the adoption and meaningful use of health information technology. The new federal policies stemming from the act will only increase the future use of EHR and other health information technology.

EHR has been linked to an increase in advance directive documentation, including DNR orders and orders to limit life-sustaining treatments. ²¹ However, EHR use has also yielded an increase in inaccurate advance directive documentation from labeling errors made in transfer of information to the EHR. ²² ACP delivery methods have not widely adapted to EHR. To achieve tractable results, the electronic ACP process must be reengineered.

Trends in Patient-Managed Health Record Systems

Current health care policy trends necessitate providers to give patients greater access to personal medical information. The Health Information Technology for Economic and Clinical Health Act has spurred the use of EHR and increased the role of patients in the management of health information. ²² Google and Microsoft have entered the EHR market to offer stand-alone health information system (ie, Google Health and HealthVault), a type of patient-managed health record where medical information is entered and managed by the patient without provider input. In this model, providers are granted ability to view medical information by the patient. Within the institutional model, patients and providers can have a shared contribution to the patient managed health record through patient portals tethered to the institution’s EHR system. Most EHR providers (Epic, GE, Siemens, etc) offer a type of tethered patient portal, which allows patients to not only view their medical information but also communicate with providers electronically, schedule appointments, request refills on medications, view test results, and track their medical care. This functionality is made available to patients by the operating institution.

In 2008, the Markle Foundation conducted a large nationwide survey to assess public perceptions of patient-managed health records. ²³ The results of this survey indicated that 46.5% of adults were interested in using some form of an online patient-managed health record, yet only 2.7% of adults actively participated in such a program. Of those that did not use online personal health record management, 40% kept paper records of health information, and 53.7% did not keep any form of health records. In a 2010 Markle Foundation study, ²⁴ the number of adults who reported having electronic patient-managed health records increased to 10%. Additionally, 9% of physicians surveyed reported offering an EHR-tethered patient portal. The new federal mandates for the increased use of EHR by individual providers and hospitals and the requirement that all patients be provided with electronic medical summaries upon request ²⁵ are likely to increase the use of EHR-tethered patient portal.

The Ohio State University Medical Center currently uses an EHR system that offers an EHR-tethered patient portal, called OSUMyChart, to patients in the ambulatory clinics. All primary care physicians are required to offer patients access to this portal per departmental policy. Data collected by the IT department of the medical center shows a distinct upward trend of adoption of OSUMyChart. Between June 2010 and May 2011, an average of 1190 new OSUMyChart accounts were created each month by providers, and an average of 795 accounts were activated by patients (66.8%).

Opportunity for EHR-Tethered Patient Portal Use in ACP

Based on nationwide surveys, approximately 78% of Americans use the Internet and 61% seek health information online. ²⁶ Given these statistics and the need to reengineer the ACP delivery process, the EHR-tethered patient portal may provide the vehicle for improvement. This tool engages patients in personal management of health; several studies point to the success of EHR-tethered patient portals in patient care.^27-30 A study done at Washington State ²⁸ randomized patients who were required to monitor blood pressure at home to 1 of 3 groups: (1) usual care; (2) home monitoring with access to a secure web portal allowing ability to upload data, request medication refills, view test results, request appointment services, and receive online educational materials; or (3) the same abilities as the second group but with an additional ability to communicate electronically with physicians and pharmacists for help with care management. The study demonstrated that improvement in outcome occurred only when care delivery was supported by communication and feedback from the provider. The study results demonstrated no significant decrease in blood pressure between the first and second groups.

However, there was a significant decrease in blood pressure in the third group. The improvement in outcome occurred only when care delivery was supported by communication and feedback from the provider.

The EHR-tethered patient portal may provide an opportunity to further individualize ACP in the context of the patient’s medical circumstances while addressing several of the traditional system-specific barriers that inhibit ACP. Many studies point to the lack of informed consent in the process of ACP or obtaining advance directives in the hospital setting.^31-33 Incomplete and inaccurate advance directives or do-not-resuscitate orders arise from poor communication among providers, patients, and/or families. Communication failings include overuse of technical language by physicians, ambiguous discussion of outcomes, and limited discussion of intervention risk. ³³ An EHR-based tool for ACP may alleviate some of these issues by providing patients with individualized educational materials.

Given previous research and the current challenges associated with ACP delivery, we believe that an EHR-tethered patient portal-based communication tool can provide an opportunity for improving the ACP process for patients and physicians, especially in the outpatient setting. This ACP tool could offer patients educational materials, provide templates where patients can complete their documentation and have it automatically reflected in the EHR, provide discussion points for talks with potential health care agents, and facilitate electronic communication between patients and providers.

To develop a successful EHR-based method for ACP, an extensive review of the literature is required to understand the current methods, challenges, and lessons in ACP accounting for disease-specific and general approaches to ACP. This type of review, coupled with collaborative efforts between providers and health policy experts, would allow researchers to integrate successful EHR-based ACP delivery systems into a primary care model.

Conclusions

The increased use of the EHR-tethered patient portal-based communication for ACP would enhance continuity of care between the patient and the primary care provider. Through thoughtful and innovative development of such a tool, primary care ACP could start even within limited time and staffing resources. The documentation can be started in an outpatient setting but may be updated at any time by either the patient or other providers. This design allows ACP dialogue to transition from the outpatient to the inpatient setting.

This proposed method for ACP education and documentation would work best when inpatient and outpatient care is within the same hospital system. The current shift toward hospital-owned outpatient practices provides a prime environment for an EHR-tethered patient portal-based ACP delivery system.