Improving quality of life and end-of-life care: Standardizing goals of care notes in EHRs

INDIANAPOLIS – It is important that a healthcare team is aware of and understands a patient’s goals of care, both medical and personal. But that information, if documented, typically is not placed in a standardized location and is difficult to find within a patient’s voluminous electronic health record (EHR).

A new study by researchers from Regenstrief Institute, the Indiana University School of Medicine and Indiana University Health presents the standardized goals of care note they developed, deployed and evaluated as a quality improvement initiative at IU Health, a large, statewide healthcare system. This searchable note, placed in an easy-to-identify location in an EHR, makes this key information conveniently accessible to the clinicians providing care.

“The goals of care conversation is one of the most important types of conversations that we have with our patients because it addresses the question of what is most important to you, the patient,” said study senior author Alexia Torke, M.D., M.S., of Regenstrief Institute and the IU School of Medicine. “We really need to deeply understand a patient's goals, and this is especially the case when a patient has a life-threatening illness or when there are difficult decisions about what kinds of treatment to pursue.

“These conversations need to be documented where other clinicians can find them -- when a patient comes in for an appointment, visits the emergency department or is admitted to the hospital -- so they know what is most important to the person they are treating. That’s why we developed goals of care notes.”

Complementary to advance care planning directives, goals of care notes provide real time details, often during a health crisis, to guide medical decision making.

The study team’s newly developed goals of care notes, which can be continually updated, reference the person’s wishes, values, needs, beliefs and what is more important to each individual, or if the patient is unable to convey this information, to family members. The communication of patient preferences and values is essential to ensuring both quality of life and the quality of end-of-life care, Dr. Torke observes.

In the first year following implementation of the goals of care tool, 944 patients had this documentation in their EHRs. The authors took a detailed look at a random selection of notes from palliative care clinicians and random selection from other clinicians to see if there were differences in what was documented, given the expertise of palliative care clinicians in leading and documenting goals of care conversations. Even though there were no significant differences in demographic characteristics between patients with palliative care clinician goal of care notes versus notes by other clinicians, the content and outcomes goals of care conversations differed between trained palliative care clinicians versus other clinicians.

The study authors report:

• Palliative clinicians documented patient preferences, values and religion more often than other clinicians in goal of care notes (75 percent versus 32 percent).
• Palliative care clinicians documented a patient capacity to make medical decisions more often than other clinicians (74 percent versus 33 percent).
• Palliative care clinicians identified the patient’s legal decision maker more often than other clinicians (70 percent versus 32 percent).
• Hospice was discussed more by palliative care clinicians than other clinicians (50 percent versus 27 percent). Palliative care discussions yielded higher hospice enrollments, indicating selection of comfort care before death (50 percent versus 35 percent).
• Among the patients who died during the study, other clinicians wrote goals of care notes closer to death compared to palliative care clinicians (4 days before death versus 19 days). Late goals of care conversations may provide less time for patients and families to prepare for the end of life.

Intensive care unit clinicians and hospital medicine clinicians were the next most likely to document goals of care after palliative care clinicians.

“Patients and families facing serious illness have to process a lot of information and they often have to make difficult decisions they have never faced before and are uncertain of what goals to focus on such as extending life or providing comfort care,” said Dr. Torke, a palliative care physician who describes the care provided by palliative care clinicians as having three core elements. “We manage symptoms, for example, pain or shortness of breath. We provide emotional and spiritual support to patients and families when they're experiencing serious illness. And we help with communication and medical decision making.”

Palliative care services are growing across the U.S. Nearly all large health centers and many smaller ones offer palliative care. For those facilities without palliative care clinicians, telehealth, such as the IU Health virtual palliative care services which reach patients throughout the state, has become an important resource.

“Patients and their families are increasingly navigating a complex healthcare environment with multiple specialties. The electronic health record is a tool to bridge gaps in communication. By creating a standardized location within the EHR for documenting seriously ill patients’ goals of care that includes medical, social and spiritual needs amongst others, we strive to both bridge gaps in communication and respect patient preferences and values,” said study first author Shilpee Sinha, M.D., of IU Health and the IU School of Medicine, a palliative care physician and a cofounder of the Indiana Network for Hospice and Palliative Care. “This study will inform us as we embark on our next phase in continuing improvements in delivering patient-centered care.”

The study was supported by IU Health and the IU School of Medicine.

“Implementing Goals of Care Notes in a Statewide Health System: A Quality Improvement Initiative” is published in The American Journal of Medicine.

Authors and affiliations as listed in the paper:

Shilpee Sinha, MD, FACP, FAAHPM^1,2; Shannon Countryman, MBA-HM, RN, CHPN¹; Ami Patel, MD^1,2; Chelsea Powell, RN, CHPN¹; James E. Slaven, MS, MA³; Amber R. Comer, PhD, JD^5,6; Alexia M. Torke, MD, MS^1,2,4.
¹Indiana University Health, IUH Department of Palliative Care.

²Division of General Internal Medicine and Geriatrics, Indiana University School of Medicine.

³Department of Biostatistics, Indiana University School of Medicine, Indianapolis, Indiana, USA.

⁴ Indiana University Center for Aging Research, Regenstrief Institute.

⁵Indiana University School of Health and Human Sciences

⁶ American Medical Association.

Alexia Torke, M.D., M.S.
In addition to her appointment as a research scientist with the Indiana University Center for Aging Research at Regenstrief Institute, Alexia Torke, M.D., M.S., is the inaugural chief of the Section of Palliative Medicine within the Division of General Internal Medicine and Geriatrics and a professor of medicine at the Indiana University School of Medicine. She also directs the Daniel F. Evans Center for Spiritual and Religious Values in Healthcare at Indiana University Health.