Patients’ end-of-life wishes often not included in EHRs
Executive Summary
Electronic health records (EHRs) often do not contain advance directives, documentation of the advance care planning process, or other information that can help guide decision-making at the end of life. To ensure patients receive the care they want, bioethicists can:
• Enter data on patients’ goals and wishes.
• Encourage patients and families to participate in the advance care planning process.
• Train clinicians in conducting and documenting advance care planning.
Advance care planning process not accessible to providers
Often, providers fail to ask seriously ill patients about their wishes for end-of-life care. Other times, providers do inquire about the patient’s wishes, and include this information in a visit note. "But that information can get lost among all of their other clinic notes," says Jennifer S. Temel, MD, clinical director of thoracic oncology at Massachusetts General Hospital in Boston. "Documenting patients’ goals and wishes and advance directives ensures that they receive care in accordance with their preferences."
Patient wishes often aren’t accessible to providers via the electronic health record (EHR). "Including sections in the EHR to enter data about patients’ goals and wishes and advance directives would ensure that patients who have communicated these preferences to their clinicians receive the care they desire," says Temel.
Adequate documentation of the advance care planning process offers the opportunity to help ensure that patients receive the care they want at the end of life, and that family members are provided with the support and information they need when placed in the difficult position of being a surrogate decision-maker for a loved one, says J. Randall Curtis, MD, MPH, director of the UW Palliative Care Center of Excellence at University of Washington in Seattle.
A 2013 study assessed how well electronic prompts can encourage oncologists to document a patient’s code status in the outpatient EHR. Of 100 patients with advanced lung cancers who agreed to participate, 34% had a code status documented in the outpatient EHRs, compared to 14.5% previously.1
"The findings were encouraging that oncologists can alter their practice behaviors, initiate conversations, and document patients’ resuscitation preferences," says Temel, the study’s lead author.
Data automatically added to EHR
Worchester-based UMass Memorial Healthcare partnered with a technology firm to develop an Internet-based tool to allow patients to share their values, goals, and medical wishes with the people of their choosing, and automatically publish this information in the EHR. "This documentation will be able to be updated at any time after discussion with their physician, a change in health status, or perhaps change of mind. We are aiming to roll this out in the coming months," reports Suzana Makowski, MD, assistant professor of palliative medicine.
EHRs are traditionally repositories for clinician documentation, while advance directives are principally completed by patients, she notes, "and the variation on the design of these forms makes it difficult for health systems to automate the input into the EHR," she says.
As patient-reported data become more important and patient portals become more prevalent, Makowski anticipates EHRs will address the need to integrate end-of-life directives into the record. "Unfortunately, when a patient is unable to express those wishes and their directives are unknown, medical decisions are made without the patient’s guidance," she says.
Lack of EHR integration of the patient’s directives harms the patient due to unwanted medical procedures performed at the end of life, burdens the health system with providing unwanted and often costly procedures, and imposes despair and moral distress on health care providers and family members, says Makowski.
Importance of planning process
EHRs typically contain information about whether patients report that they have advance directives, as a result of the Patient Self-Determination Act passed by Congress in 1990, which requires hospitals to ask patients this question and document the result during a hospital admission. "However, it is much less common that the medical record contains the actual advance directive, or information that can help guide decision-making," says Curtis.
The process of advance care planning is often more important than the advance directive itself, adds Curtis. This offers patients and their families the opportunity to place the patient’s values and goals into the context of treatment preferences and potential treatment decisions.
"Since most patients don’t know exactly what decisions they and their family will be facing when they get sick, this process allows patients and their families to be prepared to make the best in-the-moment decisions," says Curtis.
Including advance directives in the EHR is important and increasingly occurring, says Curtis. However, advance directives are limited by the fact that many patients can’t predict exactly what decisions they will be making and what their preferences might be in that context.
"Some EHR systems are finding ways to capture the advance care planning process by documenting patients’ goals and values as well as treatment preferences," says Curtis, "This can inform family members and physicians when decisions need to be made."
- Temel JS, Greer JA, Gallagher ER, et al. Electronic prompt to improve outpatient code status documentation for patients with advanced lung cancer. J Clin Oncol 2013;31(6):710-715.
- J. Randall Curtis, MD, MPH, Director, UW Palliative Care Center of Excellence, University of Washington, Seattle. Phone: (206) 744-3356. E-mail: [email protected].
- Suzana Makowski, MD, Assistant Professor, Palliative Medicine, UMass Memorial Medical Center, Worcester, MA. Phone: (508) 334-8630. E-mail: [email protected].
- Jennifer S. Temel, MD, Clinical Director, Thoracic Oncology, Massachusetts General Hospital, Boston, MA. Phone: (617) 726-8743. E-mail: [email protected].
