Like all other healthcare providers who document in the medical record, ethicists will need to write their notes while keeping in mind who might read them as a result of the Cures Act, which requires hospitals to provide immediate access to electronic medical records.1

“It’s likely to give most ethicists pause to give patients access to all of their notes,” acknowledges Tim Lahey, MD, MMSc, director of clinical ethics at University of Vermont Medical Center.

Ethics notes include evaluations of patient decision-making capacity, surrogate decision-maker motivations, and other similarly delicate issues. “Yet if our multidisciplinary conversations have been robust and open, there should be no surprises in our notes,” Lahey says.

The Cures Act allows healthcare institutions to blind patients to some aspects of the electronic health record. “But it seems paradoxical to be less transparent about ethics consultation notes compared to other aspects of the medical record,” Lahey observes.

It may make sense to preserve the privacy of such deliberations in rare circumstances. “But we should not define the routine process around edge cases,” Lahey says.

In complex cases, the best ethics notes are teaching tools as well as consultation notes, says Kenneth W. Goodman, PhD, FACMI, director of the University of Miami (FL) Miller School of Medicine’s Institute for Bioethics and Health Policy. In reading the ethics notes, clinicians often glean insights on how the ethics service contributes to patient care. Patients, along with their surrogates and proxies, will be able to learn from such consultations. “Though it will be unsettling at first, we now must join our colleagues in medicine, nursing, social work, and other clinical practices in writing better, clearer, and more informative notes,” Goodman offers.

For some ethicists, this may be a good time to reassess the goals of ethics notes. “We have a rare opportunity to reimagine the ethics consult note and ensure it helps make clear the essential role of ethics in clinical care,” Goodman explains.

Ideally, ethics notes describe conflict without judgment and state facts without prejudice, with recommendations explained in simple terms. “This can educate and inform those who read them why we reach the conclusions we do,” Goodman says.

Sharing ethics notes electronically could help patients to comprehend clinical ethics concepts.2 “Most patients and families are not familiar with ethics consultation services and would benefit from being aware that such services exist and might be of useful assistance to them,” says Marion Danis, MD, head of the section on ethics and health policy in the department of bioethics at the National Institutes of Health Clinical Center. Ethicists will need to “find a way to be candid and honest while also being sensitive to the way that patients may perceive their notes,” Danis adds.

Patients gaining access to ethics notes is “part of a broader conversation on how much access, in general, patients should have to their charts,” says Lydia Dugdale, MD, MAR (ethics), associate director of clinical ethics at NewYork-Presbyterian Hospital/Columbia University Irving Medical Center. Most healthcare providers support a certain amount of transparency, but problems can arise.

Dugdale says the two main issues are when patients identify errors in documentation, and when patients do not understand medical jargon and want an explanation. Dugdale’s patients sometimes bring medical records to office visits and ask that mistakes be fixed, without realizing doctors are not authorized to correct someone else’s documentation errors. Also, a 20-minute appointment hardly provides enough time to address the patient’s medical concerns, let alone questions on previous documentation.

“It’s easy to see how the ideal of transparency and open access becomes difficult to make reality,” says Dugdale, director of the Columbia Center for Clinical Medical Ethics.

There are additional concerns when it comes to ethics notes that describe familial discord or complicated social situations. “I have consulted on the question of unsafe hospital discharges for patients whose home environments might be intolerable for most, whether it’s hoarding, filth, or poor sanitation,” Dugdale reports.

Patients might be upset this information (or descriptions of substance use disorder, prison time, or harmful relationships) is in their medical record. Ethicists will want to keep this in mind when documenting.

“I don’t believe they need to write their notes for a non-medical audience, but they should attend to sensitive issues with prudence and compassion,” Dugdale suggests.

Not all ethicists are aware of the new requirements. “It’s unclear to me whether clinicians understand just how much of the medical record is available to patients under the Cures Act,” Dugdale says. “Most of us are so busy with the pandemic that we aren’t putting much thought into tailoring notes differently because patients have access to them.”

Ethicists may not place any formal consult note into the patient chart. “They likely take notes, but don’t place either the notes or a summary in the chart. I have heard of some keeping a ‘shadow’ chart separate from the main medical record,” says Charles E. Binkley, MD, director of bioethics at Markkula Center for Applied Ethics at Santa Clara University.

With patients accessing medical records, it is a good time for ethics to change those outdated practices. “Ethics consult notes absolutely need to go in the chart,” Binkley stresses.

Some ethicists may be concerned about legal liability with particularly contentious cases if the family can view the notes. However, says Binkley, “accurate and soundly reasoned documentation is actually protective.”

Just as with any other note in the medical record, the potential vulnerability is if there are recommendations made that are not based on solid ethical reasoning. “This really speaks to the need for solid training for everyone who is involved both in conducting and in documenting clinical ethics consults,” Binkley says.

Ethics notes provide a summary of the encounter and the rationale for recommendations. It is the same kind of information the family can review on the clinical side, but ethicists typically use more of a narrative approach. Sometimes, it turns into several pages of text.

“A more succinct note is more likely to be read and understood,” Binkley suggests. “Ethicists probably need to write notes like clinicians write notes.”

If ethics notes mirror the way clinicians chart, it gives a consistent picture of the care provided. “As professional ethicists move into the clinical realm, they need to understand that they have to chart according to medical standards,” Binkley explains.

The ethics notes will not include a physical exam or lab results, but should contain a good history, assessment of religious and social needs, family dynamics, decision-making capacity, the ethical question, and options for resolving it. “It’s important to give the reasoning behind the recommendation and how it takes into account the patient’s values,” Binkley says.

A good clinical note reflects the fact shared decision-making took place. “In the same way, the ethics note should reflect some level of shared decision-making with the team, and also with the patient,” Binkley says. “It’s not, ‘This is what you should do,’ it’s ‘Here are some ethical options.’”

REFERENCES

  1. HHS.gov. HHS extends compliance dates for information blocking and health IT certification requirements in 21st Century Cures Act final rule. Oct. 29, 2020.
  2. Mangino DR, Danis M. Sharing ethics consultation notes with patients through online portals. AMA J Ethics 2020;22:E784-E791.