Should Ethicists Hide Consult Notes from Patients?
Patients routinely view clinical notes thanks to the “open notes” provision in the 21st Century Cures Act, potentially including notes from ethicists. However, ethicists’ notes pose some unique considerations.1 “Ethics consult notes are different from other medical notes in both content and structure,” argues Holland Manon Kaplan, MD, a clinical ethics fellow and assistant professor of medicine at Baylor College of Medicine in Houston.
Kaplan and colleagues reported there were no guidelines or consensus in the field of clinical ethics on when to protect ethics consult notes from patient viewing.2 The authors included clinical ethicists from multiple institutions around the country. “We found that everyone had struggled with this problem, and many of us had managed it in different ways,” says Kaplan, adding the group agreed creating some clear guidance would be helpful.
The Cures Act includes a “preventing harm” exception. That allows blocking of documentation if there is a reasonable belief that withholding the information will substantially reduce the risk of harm. However, “harm” is narrowly defined as endangering the physical safety or life of the patient or another individual, or incurring “substantial” harm to patients or others. “Substantial harms” are not defined further.
“We feel that there are ‘harms’ that may occur with release of clinical ethics documentation in certain situations that are ethically ‘substantial’ and justify withholding the notes from patient viewing in those situations,” Kaplan asserts.
Ideally, ethicists at any given institution will decide on particular circumstances under which to hide an ethics note, based on institutional guidelines.
“The lack of organizational or legal guidance right now may make this challenging,” Kaplan says.
Kaplan and colleagues acknowledged there are some overlapping concerns surrounding the release of certain sensitive clinical and ethics notes. Unfettered access to all medical information makes greater shared decision-making possible, but also can significantly harm patients.3
“From my perspective, this is about being thoughtful and respectful of patients,” says Jason Fogler, PhD, assistant professor of pediatrics and psychology at Harvard.
Fogler and colleagues offered guidance for pediatric psychologists to mitigate risks (e.g., educating patients about the purpose of clinical documentation, “modularizing” sensitive information by protecting it until the provider has the chance to discuss it with the family). The central concern, whether it is ethics notes or clinical documentation, is patients will become distressed if they learn information without the appropriate context.
“But that can be offset by thoughtful and considered communication from the provider,” Fogler says. “We’ll need to adjust our practice, no doubt about it, but we needn’t fear OpenNotes.”
Kaplan and colleagues argued there are certain aspects of ethics documentation that must be considered separately. One important example is ethics notes are not used for billing purposes. “There are no requirements for what does or does not need to be included in any given note,” Kaplan says. “Even the primary function of the ethics note has been debated.”
There are questions on how much ethics documentation should be dedicated to education vs. providing recommendations. “Ethicists encounter a large number of conflict-laden situations, perhaps more so than other fields of medicine,” Kaplan adds.
One purpose of the OpenNotes mandate is to improve transparency in medical care for patients and families. “As ethicists, we, as do all clinicians, have an obligation to balance the principles of transparency and right to know with nonmaleficence,” Kaplan says.
An overarching concern is the field of ethics is undergoing the process of professionalization. “Many patients and families will not be aware of the role of clinical ethics, and may have misconceptions surrounding our field,” Kaplan notes.
There are several ways an ethicist’s documentation could be misinterpreted or even outright harmful. An ethics note might reveal prognostic information or treatment options the ethicist has discussed with the medical team that have not been addressed with the family. Certain language, such as describing a patient as “difficult,” can be stigmatizing. “Finally, we are often seen as the ‘ethics police,’” Kaplan reports. “Our mere involvement in cases may prompt defensiveness or even hostility if patients and family members do not understand the purpose of our service.”
Ethics consults often are accompanied by conflict, intense emotions, sensitive or controversial topics, and disagreements about values. “Our notes tend to incorporate more narrative and explicit analysis than other clinical notes,” says Laura Guidry-Grimes, PhD, HEC-C, associate staff bioethicist at the Cleveland Clinic Center for Bioethics.
Depending on the situation, ethicists could be documenting in the chart without the family previously knowing about their involvement. Despite all these issues, Guidry-Grimes says that for the sake of transparency, it makes sense to give access to ethics notes.
“Instead of shielding notes, we should consider excluding details that are likely to cause harm,” Guidry-Grimes suggests.
Ethics notes that might cause harm include those with inappropriate disclosure, those that perpetuate bias, and those that undermine the appropriate process for addressing disputes. Generally, patients and family viewing clinical notes has triggered many concerns and complaints.
“If anyone has written a note that includes any comment that may be construed as insulting by the patient or family reading the note, all sorts of unpleasantries may ensue,” says Evan G. DeRenzo, PhD, former senior clinical ethicist at the John J. Lynch, MD Center for Ethics at MedStar Washington Hospital Center in Washington, DC.
In DeRenzo’s experience, that holds doubly true for ethics notes. “When it comes to ethics consult notes, specifically, it has always seemed to me that these notes have a particularly high probability of upsetting patients and families,” DeRenzo observes.
For example, it is unlikely cardiology or hematology notes will offend patients, since those center on medical facts and treatment recommendations. “But ethics notes often include more than medical facts,” DeRenzo notes.
Ethicists may speculate on why family members object to recommendations for end-of-life care. Such documentation can cause hard feelings or turmoil within the family, or between the family and clinicians.
“By the time these disagreements turn into an ethics consult, various members may be so angry or hurt that any recommendations the ethicist makes can be like lighting a match to an already smoldering wood pile,” DeRenzo cautions.
To prevent these negative outcomes, some clinical ethicists make notes while mindful of the fact patients might read them. Thus, they avoid specifics that could cause misunderstandings. The problem is vague charting is incomprehensible to clinicians looking for explicit ethics recommendations.
For instance, clinicians would appreciate a note such as, “ethics recommends no escalation of life-extending technologies should be provided.” However, if the patient dies, and the family retrieves this patient’s medical record and reads this chart note recommendation, they might jump to the wrong conclusion. The family might conclude, inaccurately, there were treatments that could have saved their loved one. In reality, there were no such interventions, only treatments that were technically feasible, but none that presented any reasonable prospect for clinically meaningful benefit.
Similarly, clinicians appreciate the clarity of a note stating, “ethics recommends writing a do-not-resuscitate order” or “this is a case in which the surrogate is ignoring the patient’s autonomously written advance directive.” If the family sees those statements later, it could cause much resentment. “It is likely to ignite family divisions that may simmer for months and years to come, regardless of the cogency of any supportive reasoning,” DeRenzo says.
It is understandable that ethicists are thinking about patients and families reading their notes. “But the primary audience for chart notes is the clinician group caring for the patient,” DeRenzo stresses. “The inclination to water down the clarity of recommendations should be avoided.”
1. Howe EG. Should ethics consultants make their findings transparent? How important is “intimacy” between patients and care providers? J Clin Ethics 2022;33:259-268.
2. Kaplan H, Guidry-Grimes L, Crutchfield P, et al. An open discussion of the impact of OpenNotes on clinical ethics: A justification for harm-based exclusions from clinical ethics documentation. J Clin Ethics 2022;33:303-313.
3. Fogler JM, Ratliff-Schaub K, McGuinn L, et al. OpenNotes: Anticipatory guidance and ethical considerations for pediatric psychologists in interprofessional settings. J Pediatr Psychol 2022;47:189-194.
Ethics consults often are accompanied by conflict, intense emotions, sensitive or controversial topics, and disagreements about values. Ethics notes tend to incorporate more narrative and explicit analysis than other clinical notes. For the sake of transparency, instead of shielding notes, consider excluding details that are likely to cause harm.
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