Making Advance Care Planning Information Interoperable at the Point of Care: The Next Step to Genuinely Promoting Dignified Dying


Keenan, G. (Feb, 2017). Making Advance Care Planning Information Interoperable at the Point of Care: The Next Step to Genuinely Promoting Dignified Dying. Online Journal of Nursing Informatics (OJNI), 21(1).  Available at

Introduction and Background

It is estimated that more than 25% of adults, including those over the age of 75, have given little or no thought to their end-of-life care preferences, with many of those who have thought about their wishes failing to document or express these to others (IOM, 2015). In the absence of preference identification for end-of-life care, many unnecessary and costly procedures may be performed that severely compromise the dignity of the dying patient. To date, the major barriers to communication about patients’ end-of-life care preferences have been 1) the reluctance of patients and families to explore death and dying, and 2) inadequate structural support for such conversations including clinician training, payment and record keeping. In 2016, Medicare began reimbursing face-to-face visits for advance care planning for patients with their physicians or other qualified health professionals such as nurse practitioners (CMS, 2016). This service provision, for which there are no visit number limits, is well overdue and is expected to dramatically increase opportunities for patients to make their end-of-life care wishes known for the purpose of promoting dignified dying. Advanced care planning encompasses discussions and written documents in which individuals clarify their values and related goals and preferences for end-of-life care ideally with a trusted health care provider and family members. The advanced care planning process can start at any time and be periodically revisited to update goals and preferences as a person’s health status changes (IOM, 2015; Patrizi, Thompson & Spector, 2011).

The new Centers for Medicare & Medicaid Services (CMS) reimbursement policy for advanced care planning visits is acknowledged as an important solution component to ensure dignified dying in this country (CMS, 2016). It is also important for clinicians to be properly prepared to effectively carry out the advanced care planning process with patients. To this end, there are a number of excellent training modules available to adequately and effectively meet this educational need (Patrizi et al, 2011). The fragmentation of our health care system combined with the poor quality of our documentation systems, however, remain a serious barrier to ensuring that the formalized patient preferences identified through advanced care planning will be easily accessed, understood, and actionable when needed (CMS, 2016). Patients generally see multiple care providers across the continuum of care that are oftentimes unaware of what others are doing in the absence of accessible patient records that contain consistent information needed to properly coordinate care. This situation is compounded in the last few months of patients’ lives by an increase in the number of medical crises that often inappropriately result in multiple hospital and intensive care stays, with enrollment in hospice care often occurring in the last few days of life (IOM, 2015).

Although advanced care planning is designed to avoid inappropriate care at the end of life, patient preferences are not likely to be honored if the information about the patients’ wishes is not immediately accessible when needed. Without such information, clinicians unfamiliar with the patients will fear taking actions that have not been previously formalized in the patient’s record. This is often true even if the patient is coherent and family members are aware of a patient’s preferences. Clinicians who do not know the patient can inadvertently sway patients away from their true preferences when typical unit protocols do not match these preferences. This situation is exasperating for patients, their families and the clinicians who care for them (IOM, 2015).

A Proposed Solution for Producing Interoperable Advanced Care Planning Information at the Point of Care

A logical next step to enable dignified dying, therefore, is to ensure that advanced care planning information is immediately available at all points where care is provided to dying patients. To be useful, the information must be readily understood by the clinicians and actionable at the precise time needed. Given the state of our current health records and systems, there is no mechanism to guarantee that key information such as advanced care planning will be available when and where it is needed. There are likely many solutions that could be devised to address this gap and the following is one.
At the core of this proposed solution is a single standardized care planning module that would attach to all electronic health records (EHRs) regardless of vendor and setting. The look and operation of the module would be exactly the same regardless of the health care setting. Information could be entered in the same way and formatted consistently when retrieved so clinicians could easily update and interpret advanced care planning information as opposed to being confused by a variety of methods and formats. The comprehensive advanced care planning information (including forms) entered across time by clinicians at different locations would be stored in a central registry. The registry would allow immediate and secure access by clinicians to the most up-to-date standardized advanced care planning information available on a patient from any health care setting location. This aspect is key to ensuring that the information is immediately available when and where it is needed. Another important feature is that the care planning system would support choice in the selection and tailoring of advanced care planning to ensure the process and completed documents represent the patient’s preferences. Robust high quality clinical decision support would also be readily accessible to help clinicians understand, interpret, and take action on advanced care planning information. Finally, an added benefit of this solution is the capability to create and deploy standardized updates from a central source rather than expecting each system to devise and pay for these updates separately.


The new CMS (2016) reimbursement policy of advanced care planning visits for Medicare patients is an important step toward implementing care that honors the dignity of all dying patients. In the absence of interoperable documentation systems that enable the standardized collection, storage, retrieval and updating of advanced care planning information, dying patients remain at high risk of their preferences not being carried out. A simple vendor-neutral standardized care planning system that can be attached to all EHRs, with a central registry for storage and easy retrieval, is proposed to remedy the gap. This setup would not only address the documentation deficits but provide a means to cost-effectively and continuously update and improve the advanced care planning system. The solution provides a feasible and simple method of delivering advanced care planning information at the point of care when needed and also avoids the prohibitive cost of separately integrating the advanced care planning system into various EHRs.


Gail M. Keenan, PhD, RN, FAAN, is a professor and the Annabel Davis Jenks Endowed Chair of the College of Nursing, University of Florida, Gainesville,


Centers for Medicare & Medicaid Services (CMS). (2016). Frequently asked questions about billing the physician fee schedule for advance care planning. Retrieved from

Institute of Medicine (IOM). (2015). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.

Patrizi, P., Thompson, E. & Spector, A. (2011). Moving palliative care upstream and institutionalizing its practice. RWJF: Retrospective Series: Improving Care at End of Life. Retrieved from