Patients Are Reading Ethicists’ Documentation

By Stacey Kusterbeck

Patients can now view ethics documentation in real time, just as they can view the notes of other clinical providers, as a result of the “Open Notes” requirement in the 21st Century Cures Act (implemented in 2021). This has caused some ethicists to re-evaluate the way they document.

For a long time, ethicists wrote notes with clinicians in mind. “But it’s always been the case that the medical records are the patient’s medical records. And, perhaps, patients always should have been an intended audience as well,” says Mathew David Pauley, JD, MA, MDR, a regional ethicist at Kaiser Permanente Northern California in Oakland.

In Pauley’s experience, transparency has been a successful approach. Pauley usually concludes interactions with family members by explicitly telling them what he intends to recommend. In one recent case, clinicians were unwilling to start dialysis in a patient who was near death due to complications from pneumonia. The patient’s family still wanted the intervention. After a family meeting, Pauley explained that he would be writing a recommendation, and that it was not what the family was seeking, and that he would, to the best of his ability, convey the family’s point of view.

Some surrogate decision-makers have been unavailable during previous attempts to reach them by phone or did not agree with the clinical team’s recommendations. There is no reason to document anything disparaging in these cases, emphasizes Pauley. “I cannot think of a reason not to be respectful at every single interaction we have,” he says. Instead of charting something like, “Surrogate is argumentative,” ethicists could put it this way instead: “I believe that the surrogate is fearful of her husband dying and feels disrespected because clinicians recommend discontinuing treatment.”

In theory, what the ethicist documents should not be affected because a patient or surrogate is looking at the chart, says Ariel Clatty, PhD, a clinical ethicist at UPMC Presbyterian Shadyside Hospital. “The biggest concern may be the timing of the note,” says Clatty. When clinicians first contact ethicists about a case, the patient and family probably do not know ethics is getting involved. Sometimes the ethicist offers some guidance to the clinician and feels it is unnecessary to speak with the patient or family. The clinician and the ethicist document the interaction. The patient or family sees the documentation and wonders why they were not consulted. “Sometimes, it can hinder the patient/physician relationship,” says Clatty.

From the patient’s perspective, it could appear that clinicians are hiding something. Ideally, clinicians explain the situation and what the ethics consultant was able to help with, so the patient feels comfortable having the ethics team involved. In other cases, the ethicist does need to speak with the patient. The patient might need an explanation about the role of ethics in their care. Clatty suggests a statement such as, “I am here because it seems that you may be wanting this chemotherapy treatment. However, the teams suggest that it cannot be provided because it will hasten your death. How do you feel about this? What are your concerns? What did you want to achieve out of chemotherapy? What is your goal or focus?” “The resolution may be further discussion and clarification that a team cannot offer something harmful to the patient,” says Clatty.

One patient expressed anger toward the ethicist and the clinical team after reading documentation stating that the patient was manipulating the system to receive treatment that was felt to be inappropriate. The opposite has also occurred. Disputes have occurred after ethicists documented that clinicians recommended that the patient refused to discuss certain treatments. The patient insisted that these discussions never happened. “Sometimes it becomes a losing battle of he said/she said,” says Clatty. To avoid these situations, ethicists should strive to document factually without bias or judgment.

Many ethicists worry that the information they document will be misconstrued in some way and will end up damaging the trusting relationship between the patient and the clinical team, according to Olivia Schuman, PhD, a clinical ethicist at Norton Healthcare and assistant professor in the Department of Philosophy at the University of Louisville.

“Oftentimes, the ethicist is called in for concerns or frustrations the team has about the patient, family, or other colleagues,” notes Schuman. That kind of information could come off as accusatory to the named individuals. The clinical team might think that the patient’s decision-makers are unreasonable or irresponsible for requesting high levels of intervention. Sometimes, clinicians feel that the family does not understand, or is not willing to accept, that their loved one is dying. Even just the fact that there is an unexpected ethics consult requested might make some families feel the medical team thinks they are doing something wrong or does not like them. “It could disrupt and harm relationships and communication that are essential to appropriate care. That basically undermines the entire purpose of the consult and could even make medical staff reluctant to place ethics requests. That would not benefit anybody,” says Schuman.

Ethicists have good reason to hesitate before including certain pieces of information in the medical record. Ethicists might not want to write a note that the team suspects the patient’s decision-maker is motivated to keep the patient alive in order to collect their Social Security checks, for example. Extremely sensitive information like that might need to be conveyed in person or over the phone.

“It’s reasonable that the patient is not privy to every single exchange that providers might have about the patient. If that were the case, providers would just self-censure and not fully communicate with one another. That’s ultimately worse for patients,” asserts Schuman.

Some ethicists circumvent the issue by simply protecting their notes from being viewed. “They do this under the assumption that their note meets the conditions of potentially causing substantial harm. But doing so to prevent undermining the patient-medical team relationship is unlikely to satisfy the legal exceptions for shielding a note,” cautions Schuman.

Schuman coauthored a recent paper on the ethical considerations involved with quoting patients in the medical record.¹ “Just because you are quoting something verbatim does not imply that it is a neutral portrayal of the situation or that you are not responsible for how you have described the encounter,” warns Schuman.

A quote standing on its own, such as, “None of you care about my family member,” can be misleading. Ethicists should attempt to provide some context to explain the surrounding circumstances and what the person really meant to convey. Otherwise, unjustified negative and harmful judgments about the patient might follow the patient via a copied chart note. The single inflammatory quote could result in many future providers being biased against the patient, far into the future. “It’s a fine balance between quoting so that we have a clear, unfiltered record of the patient’s preferences and framing and paraphrasing an encounter so that it is respectful and doesn’t perpetuate bias,” concludes Schuman.

REFERENCE

1. Schuman O, Romero HG. Using patient quotations in chart notes: A clinical ethics perspective. J Clin Ethics 2023;34:352-355.