An Open Discussion of the Impact of OpenNotes on Clinical Ethics: A Justification for Harm-Based Exclusions from Clinical Ethics Documentation.

The OpenNotes (ON) mandate in the 21st Century Cures Act requires that patients or their legally authorized representatives be able to access their medical information in their electronic medical record (EMR) in real time. Ethics notes fall under the domain of this policy. We argue that ethics notes are unique from other clinical documentation in a number of ways: they lack best-practice guidelines, are written in the context of common misconceptions surrounding the purpose of ethics consultation, and often answer questions of a different nature than other documentation. Thus, we believe the clinical ethics community would benefit from clarification on when the withholding of ethics notes is justified. We provide recommendations for excluding information from ethics documentation based on the likelihood and magnitude of harm that may occur with particular disclosures and suggest approaches to decrease the potential harms that may occur. We define and explain six types of reasons to exclude information from ethics notes based on significant harms that are not addressed in the ON policy: (1) harmful revelations from a protected chart note; (2) negative emotional effects on patients or families; (3) the purpose of the consultation is undermined by harmful consequences; (4) avoidable negative impact on interpersonal dynamics; (5) inappropriate labeling or disclosure of medical, social, or financial information; and (6) inclusion of biasing or otherwise unfair information. We also suggest approaches to mitigate harm when excluding, including, reframing, or delaying release of information that is perceived to be relevant to an ethics case. Overall, we hope our analysis and recommendations will initiate a much-needed discussion about the impact of the ON mandate on clinical ethics documentation.

A Place of His Own: Applying Dignity of Risk to Bioethics Consultation.

Hospitals have both a regulatory and an ethical mandate to craft a safe discharge plan for all patients. These plans can become a source of conflict between clinicians and patients when they have differing conceptions of safety and best interests. In bioethics principles this conflict can be characterized as the tension between the patient's right to make medical decisions in accordance with their values, or autonomy, and the clinician's obligation to provide best care to their patients, or beneficence. Employed independently, these principles can be limiting and may not accommodate the nuanced narrative of patients who lack decisional capacity but have expressed clear preferences about where they wish to live. Utilizing case-based discussion, this article explores how the inclusion of Robert Perske's dignity of risk principal in bioethics consultation can support clinicians in expanding their conceptions of beneficence and safety, providing the team with the freedom to craft discharge plans that keep the patient at the center of the narrative.

Learning from Covid.

Mrs. Clark's case was an ordinary consult in an extraordinary time. She was refusing dialysis, but the psychiatric unit had concluded that she lacked capacity for such decision-making. The only difference between Mrs. Clark's current hospitalization and the last two was that it was April 2020 and a virus called Covid-19 had overtaken our hospital. As the chief of Montefiore Medical Center's bioethics service, when I received a consult before the virus, I always saw the patient. Whether the patient had been in a vegetative state for a day or for years, it didn't matter. I would lay my hand on a leg or an arm and observe. But Covid-19 enforced physical boundaries between my team and our patients; I would not be able to meet Mrs. Clark. Our hospital responded to the attack on human connection by getting creative. We asked ourselves, which tools are still available to us? Answering this involved, in part, finding new ways for our team of clinical ethicists to support the clinicians caring for Mrs. Clark.

Should Dialysis Be Stopped for an Unrepresented Patient With Metastatic Cancer?

Unrepresented patients (also referred to as unbefriended, patients alone, patients without proxy, or isolated patients) are among the most vulnerable persons entering the health care system. Legislation concerning these patients varies across the United States, resulting in disparities in care. For example, the statutory definition of who is unrepresented varies. In some states, clergy or close friends may act as surrogates; in other states, they cannot do so. Available end-of-life options also differ, creating significant disparities in end-of-life care for these patients.

It's All Relative.

In this issue of the Hastings Center Report, Daniel Brudney suggests that clinicians have an overly deferential attitude toward their patients' surrogate decision-makers that is rooted in a wrongful investment of moral authority. He maintains that surrogate decision-makers have no moral right to decide for their loved ones and that their value in the decision-making process is limited to their knowledge of their loved one's preferences. If operationalized, Brudney's framework would ease the way for clinicians to remove a surrogate who cannot provide information relevant to the patient's preferences and to resort to a paternalistic model of decision-making. Brudney fails to consider that the value of the surrogate does not flow from the surrogate, but rather from the patient's moral claim to have decisions made for him or her by a loved one. This claim recognizes that surrogates have intrinsic value through their relationship to and knowledge of the patient. Bioethics consultation services can assist clinical teams in engaging with the human crowd that surrounds each patient and navigating conflicting values and goals. This relational approach embraces the "mire and blood" that is endemic to relationships and clinical encounters.

Empty Spaces.

"I'm Jewish, you know, and my mother said, 'Always trust the rabbis.'" I never heard Mr. Weisman's refrain from his own lips. I never heard him say any words all. By the time I met him he was in a vegetative state, a man on the precipice of invisibility-white hair, thin pale limbs, melting into sheets of the same color. When I think about Mr. Weisman, I see empty spaces-the absence of his voice, the too-large bed for his shrinking frame, the always-empty chair by his bedside, and most of all, the myriad gaps in his life story. He was what in hospitals is often called a "patient alone": someone who lacks decisional capacity and has no surrogate to make medical decisions for him. Mr. Weisman's aloneness prompted his primary team to consult our bioethics service in order to formulate goals of care for him, including the possibility of hospice care.

A Good Death.

A good death is hard to find. Family members tell us that loved ones die in the wrong place-the hospital-and do not receive high-quality care at the end of life. This issue of the Hastings Center Report offers two articles from authors who strive to provide good end-of-life care and to prevent needless suffering. We agree with their goals, but we have substantial reservations about the approaches they recommend. Respect for the decisions of patients and their surrogates is a relatively new and still vulnerable aspect of medical care. For thousands of years, patients and surrogates had no say in medical decision-making. Today, standards support shared decision-making, but these articles both carve out exceptions to those standards, limiting the rights of patients and families in decisions about specific end-of-life treatments. As bioethics consultants in an acute care setting, we frequently confront conflicts similar to those described by Jeffrey Berger and by Ellen Robinson and colleagues. In such cases, our service emphasizes redoubled efforts at communication and mediation. Focusing on goals and values, rather than interventions, produces the best possible collaboration in health care decision-making. Cases in which we would overturn a surrogate's recommendations regarding palliative sedation or do-not-resuscitate orders are rare and require careful processes and clear evidence that the surrogate's choice is contrary to patient values.