Ethicists’ Role if Clinicians Disregard Documented End-of-Life Wishes
After clinicians realize a patient was resuscitated wrongfully, what is the next step? “Individual ethicists may be helpful with communication with the family. They may have a sense of how this mistake happened,” says Trevor M. Bibler, PhD, assistant professor of medicine at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston.
Consultants might suggest the most ethical path forward. For example, even if the patient’s heart began beating again and they were intubated, terminal extubation still might be possible. “If we assume that a patient has been resuscitated against their wishes, since refusing intubation, shocks, vasopressors, and chest compressions would constitute a Do Not Attempt Resuscitation order, these can be stopped,” Bibler says.
An intubated patient could be extubated just like any other patient who the team is planning to terminally extubate — likely, after the family has had time to say goodbye. “This is a setting that healthcare professionals often feel quite comfortable with, since they have a great deal of control over the situation,” Bibler notes.
In Bibler’s view, the family or surrogate would have to be informed of the mistaken resuscitation. The patient or their surrogate made an informed decision to refuse a life-sustaining technology. The team, either intentionally or unintentionally, failed to abide by this informed decision. “This is an error. I would never recommend hiding something like this from family,” Bibler cautions. “The team should be reaching out as soon as they discovered it happened and know the cause.”
Going forward, ethicists can find ways to try to prevent such events from happening again. For example, ethicists could provide education to units about basic ethical concepts, such as the right to bodily integrity. “The ethicist might work with others on the unit to provide a space for shared reflection,” Bibler suggests.
The ethicist also might look for the root cause. Was it poor documentation? Was there a miscommunication between the patient and the team? Did someone intentionally disregard the patient’s obvious wishes? “Depending on the cause, minimizing harm via education may be the best way to obviate future failures,” Bibler offers.
Endotracheal intubation often is part of resuscitating critically ill patients. Thus, it is not typically feasible for ethicists to intervene early in these cases, says Evan Mahl, MD, attending physician in the division of pediatric emergency medicine and the department of emergency medicine at Maimonides Medical Center in Brooklyn, NY. “Although a planned terminal extubation is often a tenable option, it would be rare for that to be expedited in the emergency department, given the gravity of the decision and the need for measured adjudication,” Mahl notes.
Nevertheless, early involvement of the ethics team in these cases can be helpful. Mahl suggests following an initial assessment of the case, the patient’s healthcare team should arrange a family meeting with surrogates, clinicians, the ethics team, social workers, and other appropriate individuals (e.g., clergy). This should happen as soon as possible, no later than the following day.
The ethics team should facilitate an honest and compassionate discussion about the plan to best honor the patient’s end-of-life decisions. Mahl says the goals of the meeting should be first, to clarify the patient’s choices in the advance directive; secondly, to identify the interventions performed that disregarded those directives; and finally, to find a way to retroactively respect them. This may involve a terminal extubation and/or the withdrawal of life-sustaining cardiac and vasoactive agents.
“Through my conversations with emergency medicine physicians who must make real-time decisions, several recurring issues have emerged,” Mahl reports.
First, electronic Medical Orders for Life-Sustaining Treatment (MOLST) often are unavailable. Thus, clinicians still rely on hard copies of patients’ documents, which may be missing. “If these documents are unclear or perceived to be outdated, many clinicians may disregard them and opt to resuscitate the patient, leaving the ICU teams to handle the consequences,” Mahl says.
Regular education provided to ED staff is crucial to maintain understanding of the structure of MOLST forms and how to evaluate other forms of advance directives. “Unfortunately, as many ethicists can attest, a surprising number of patients with serious illness never engage with their clinicians in discussing end-of-life decision-making,” Mahl notes. “Even among professionals who work with the dying, talking about death remains taboo.”
Mahl says the bulk of the work to avoid wrongful prolongation of life situations remains with primary care physicians (gerontologists in particular), oncologists, surgeons, and palliative care doctors.
“Continued innovation in the digital storage of advance directives is also needed to avoid the loss of paper documents and to have a fully vetted document with no ambiguity,” Mahl adds.
Early involvement of the ethics team can be helpful. After an initial assessment, the healthcare team should arrange a family meeting with surrogates, clinicians, the ethics team, social workers, and other appropriate individuals (e.g., clergy). This should happen as soon as possible, no later than the following day. The ethics team should facilitate an honest and compassionate discussion about the plan to best honor the patient’s end-of-life decisions.
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