EXECUTIVE SUMMARY

Half of patients with a completed advance care planning legal form had no explanatory discussion documented, found a recent study. Other findings include the following:

• About half of patients engaged in some form of advance care planning.

• Discussions were recorded as free text, making them difficult to find.

• Goals of care changes were not recorded using dedicated note templates.


Half of patients with a completed advance care planning legal form had no accompanying explanatory discussion documented in the electronic health record (EHR), found a recent study.1

“This is important because contextualization of wishes documented in succinct legal forms is essential to interpreting them appropriately,” says Evan Walker, MD, the study’s lead author.

The 2015 Institute of Medicine report, Dying in America, emphasizes the need for standardized and frequent advance care planning documentation in the EHR.2 However, how often discussions are actually documented in the EHR was unknown.

“Better understanding of documentation practices will hopefully lead to quality improvement initiatives to ensure patient safety so that patients’ wishes are honored,” says Walker, chief resident at the University of California, San Francisco.

Researchers analyzed EHR documentation of 414 patients from the primary care clinics of the San Francisco VA Medical Center, all at least 60 years old with multiple medical conditions. About 51% had engaged in some form of advance care planning in the past. Notably, the VA provides dedicated note titles and templates to facilitate standardized recording of patients’ wishes. But 55% of discussions were not recorded in this manner, the researchers discovered. “Instead, they were buried as free text in other notes, often years-old, making these documented wishes much more difficult to find when needed at the point of care,” says Walker.

Goals of care changed during a subsequent discussion for 18% of participants with completed legal forms. Seventy percent of these changes were not recorded using the dedicated note templates, making them difficult to access in the EHR. This is a patient safety issue, says Walker: “Future providers could mistakenly rely on outdated forms and provide care misaligned with patient wishes.”

Conversations Get Lost

Another group of researchers developed a set of recommendations to improve the state of advance care planning documentation in the EHR.3

“There remains a significant deficit when it comes to transmitting this information through the EHR,” says Daniela Lamas, MD, the study’s lead author and a pulmonary and critical care physician at Brigham and Women’s Hospital in Boston.

Researchers interviewed 18 clinicians, a hospital administrator, a health plan project manager, and a data scientist on the strengths and weaknesses of EHR documentation systems for advance care planning. All of the participants were actively involved in the process of improving advance care planning documentation.

“Conversations get lost. Scanned records never make it into the system. Key patient goals and values are buried at the end of progress notes,” says Lamas. All of this means that when it comes to extracting essential information about patient goals and values in the midst of a crisis, “we are often lost,” says Lamas.

The researchers wanted to make information about patient goals and values as easily retrievable as a record of allergies. Some key recommendations for clinicians include the following:

• Ensure documentation is complete and available through effective use of advance care planning functionalities.

• Use advance care planning functionalities to clearly record patients’ goals and preferences, to record clinical decisions, and to access and continue past discussions, as needed.

• Conduct high-quality advance care planning conversations with appropriate patients.

• Develop clinical action plans to actualize the goals identified by the patients and record these plans in the EHR.

“What was most surprising was how pervasive this problem is,” says Lamas. Advance care planning information is difficult to access across health systems, specialties, and care settings. “From critical care doctors to emergency medicine practitioners to internists working in the outpatient clinics, we struggle with regularly recording and retrieving key information about patient goals and values,” says Lamas.

It is well-established that patients with serious illness should have the opportunity to discuss their goals and values. “Yet there are few regulations to make sure that this information is easily recorded and retrievable throughout a patient’s course,” says Lamas.

There typically is no system to make sure the record of these essential conversations follows patients across their trajectory of care. This is a concern both in terms of patient safety and ethics, says Lamas: “As we encourage these conversations, we should also build systems to support patients ultimately getting the care that they desire.”

REFERENCES

1. Walker E, McMahan R, Barnes D, et al. Advance care planning documentation practices and accessibility in the electronic health record: Implications for patient safety. J Pain Symptom Manage 2018; 55(2):256–264.

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

3. Lamas D, Panariello N, Henrich N, et al. Advance care planning documentation in electronic health records: Current challenges and recommendations for change. J Palliat Med 2018; 21(4):522-528.

SOURCES

• Evan Walker, MD, University of California, San Francisco. Phone: (415) 221-4810 ext. 2129. Email: evan.walker@ucsf.edu.

• Daniela Lamas, MD, Brigham and Women’s Hospital, Boston. Email: dlamas@mgh.harvard.edu.