By Stacey Kusterbeck
Some of the most challenging ethics consults involve conflicts about withdrawal of life-sustaining therapy (WLST). “Some families may need more time to come to terms with the patient’s prognosis or to feel certain that withdrawal is the right thing to do,” says Aimee Milliken, PhD, RN, HEC-C, a clinical ethicist and associate professor of the practice at the Boston College Connell School of Nursing. Others want time to accommodate family members who may want to see the patient before they pass. In most instances, clinicians agree to make reasonable accommodations to facilitate these requests for a short period of time, such as 24 or 48 hours. “It can be helpful to involve an ethicist in these cases, especially if the request for extra time is challenging to fulfill, either practically or clinically,” says Milliken.
The medical team will make an effort to respect the patient and family’s wishes regarding the timing of withdrawal. “However, when the care being provided becomes non-beneficial, the physician has a duty not to continue such care for a prolonged period of time,” says Edward Dunn, MD, an associate professor of palliative medicine at the University of Louisville School of Medicine and medical director of palliative care and ethics committee chair at Jewish Hospital of Louisville.
Clinicians may give the family members enough time to allow for visitation with other family members and friends. “That time period is often a matter of minutes to hours but should not extend more than a day or two. We must be cognizant of the nursing and allied health staff providing care for the patient,” says Dunn.
Understandably, an intensive care unit (ICU) nurse providing non-beneficial care to a patient naturally will ask, “Why are we continuing to do this?” “For the nurse, continuing care in terminally ill patients with no hope for recovery is a common cause of moral distress. Too many cases like these can often lead to burnout for nurses,” says Dunn.
One group of researchers looked at how clinical factors can influence WLST decisions and post-injury outcomes for traumatic brain injury (TBI). The researchers compared 164 individuals who underwent WLST with severe TBI with 164 who did not undergo WLST.1 “The findings were surprising in several areas,” says Varun Mishra, BS, the study’s lead author and an MD candidate at Virginia Tech Carilion School of Medicine. Some key findings:
- Radiographic markers that traditionally are viewed as indicators of poor prognosis (such as midline shift and bilateral grade three diffuse axonal injury), did not reliably predict poor functional outcomes.
- Palliative care consultation was associated with the decision to WLST in the adult patient population, but not in the geriatric population. “This finding may reflect provider biases. It highlights the subjectivity in prognostication and underscores the risks of premature decision-making in the absence of clear evidence-based guidelines,” says Mishra.
- Several patients with significant abnormalities on neuroimaging survived to be discharged and achieved moderate to good functional recovery. “Adult patients exhibited a remarkable rate of good functional outcomes,” says Mishra. Although geriatric patients typically had poorer functional outcomes, many who were discharged without WLST had moderate disability — an acceptable outcome for some patients. If a poor prognosis is declared too early, there is the potential for WLST in patients who otherwise may have had good or acceptable functional outcomes, warns Mishra. Recent studies indicate that in cases of severe TBI, clinicians should exercise caution when suggesting a high likelihood of permanent severe disability within the first two weeks post-injury.2
WLST decision-making for patients with disorders of consciousness raises some additional ethical concerns because of an evolving understanding of recovery chances and new technologies. Most clinicians believe that neurotechnologies are essential for evaluation of patients with disorders of consciousness, found a recent study.3 “These findings point toward growing recognition of a phenomenon called covert consciousness, or cognitive motor dissociation. Patient levels of consciousness, we have learned, may exceed that which might be detected at the bedside,” says Michael Young, MD, MPhil, a neurologist and researcher in the Division of Neurocritical Care at Massachusetts General Hospital (MGH) and associate director of the MGH Neurorecovery Clinic.
Young and colleagues surveyed 92 clinicians about novel neurotechnology used to identify levels of consciousness, particularly covert consciousness. For evaluation of disorders of consciousness following brain injury, more than 70% of clinicians saw standard bedside behavioral examination as insufficient. Almost 60% viewed advanced neurotechnologies as essential for optimal evaluation of these patients. “The finding of covert consciousness and the ethical, clinical, and philosophical implications, to date, have been greatly unexplored,” says Young. Clinicians reported these ethical considerations:
Concerns about the validity of test results. Like any other medical tests, neurotechnologies have some false-positive rates and some false-negative rates. “It is important to avoid the tendency to consider such tests as infallible. More work is needed to engage in multicenter validation studies to be sure testing is performed rigorously and results are interpreted responsibly,” cautions Young.
The challenges of communicating test results to family. “Communicating test results, especially those pertaining to consciousness, requires careful, consistent, and ethically grounded messaging,” explains Young. Ethicists can guide clinicians on how to approach these conversations, ensuring sensitivity to the family’s values and needs. Both pre-test and post-test counseling often are necessary to help families process the information and its implications. For example, although a positive test result on task-based functional magnetic resonance imaging (fMRI) or electroencephalogram (EEG) is suggestive of covert consciousness, a negative test result does not establish that a patient is unconscious or incapable of recovering. “These nuances are deeply important to counsel families about with care,” says Young.
For some families, the finding of covert consciousness is a welcome, exciting finding that introduces new optimism into the situation. Other families may be distraught to learn their loved one is aware but unable to interact with the world. “The impact of these findings on families vary, depending on patient and family values, culture, and context. These are underexplored issues that are only beginning to be uncovered,” says Young.
How to make decisions when there is prognostic uncertainty. There may be uncertainty over the diagnosis and a patient’s level of consciousness, and, additionally, uncertainty over the prognosis as to what the future might hold for a patient. “This layered uncertainty, of prognostic on top of diagnostic uncertainty, can create profound challenges for surrogate decisionmakers. They’re often in high-intensity situations where loved ones may be incapacitated after an acute severe brain injury,” says Young. In the case of a previously healthy adult who remains behaviorally unresponsive a week after a high-speed car crash, clinicians might be unsure if the patient is consciously aware. Additionally, clinicians also may be unable to predict the chances of meaningful recovery. This leaves everyone to wonder if the patient is benefitting from ongoing therapies. “Ethicists can guide families in these heart-wrenching scenarios,” says Young.
Ethicists can work with the care team to present the family with a clear account of what is known and unknown. Ethicists can ensure the patient’s values anchor the conversation, translate risks and benefits into plain language, and facilitate the sharing of new data (such as advanced tests of covert consciousness) at key checkpoints, such as before family goals of care meetings. “When facts are clarified, values foregrounded, and the process kept transparent, surrogates can reach decisions that are both ethically grounded and clinically sound,” says Young.
Unequal access to technologies. “We have learned that clinicians are seeing a clear need for further research and implementation science work focused on democratizing access to these critical techniques, and a need for education on how to use these technologies and how to interpret the result,” says Young.
Not all patients have access to cutting-edge techniques that may reveal levels of function undetectable through routine bedside evaluation. This is an ethical concern for clinicians who are aware of recent guidelines recommending the use of these techniques. “The gap between what clinicians ought to do and what clinicians can do — given the practical and logistical limitations — particularly, limitations around access, poses significant ethical challenges. Ethicists play a key role in helping clinicians and families navigate these challenges responsibly,” says Young.
Ethicists can help to develop policies outlining when testing for covert consciousness is appropriate or policies on transferring patients to other centers if such testing is not available at their institution. “Ethicists can collaborate with clinicians and administration to develop clear frameworks and guidelines for how to navigate these situations,” says Young.
“By partnering with clinicians and hospital leadership, ethicists bring structured, value-sensitive analysis and community engagement skills that can propel science and policy forward for the benefit of patients with disorders of consciousness worldwide. For those new to such work, the simplest first step is to raise key questions early, and ensure that ethical considerations are proactively considered,” says Young.
The finding of covert consciousness is not just diagnostically informative — it also is prognostically informative. Patients with covert consciousness seem to be more likely to recover to independence at later time points.4 “This is a finding that can, indeed, influence early impressions of likely outcomes and may sway decision-making. And yet, most clinicians around the world lack access to these techniques and make decisions in what is essentially a vacuum. There is a critical need here to bridge that gap between what is possible and what is available to patients and clinicians around the world,” says Young.
Young and colleagues developed an ethical framework to improve access to neurotechnologies.5 One possible model is data that are acquired locally, then sent to a centralized hub for analysis and interpretation. Another possibility is for a new technology to be developed that renders the assessments more accessible to clinicians. For example, point-of-care tools that are not prohibitively costly and do not require specialists to process and interpret results could be used to detect covert consciousness.
“There is a need for greater public awareness and resource allocation to this incredibly vulnerable population, particularly where the underlying insult is not necessarily a progressive one. For some, it might be the beginning of the process of dying. For others, it might be the beginning of their recovery,” says Young.
Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.
References
1. Hennessey E, Martin T, Turrentine B, et al. Racial and ethnic differences in withdrawal of life-sustaining treatment and hospice referral in severe traumatic brain injury. J Racial Ethn Health Disparities. 2025; May 16. doi: 10.1007/s40615-025-02476-9. [Online ahead of print].
2. McCrea MA, Giacino JT, Barber J, et al. Functional outcomes over the first year after moderate to severe traumatic brain injury in the prospective, longitudinal TRACK-TBI study. JAMA Neurol. 2021;78(8):982-992.
3. Bhardwaj T, Edlow BL, Young MJ. Ethically translating advanced neurotechnologies for disorders of consciousness: A survey of clinicians’ perspectives. Neurocrit Care. 2025;42(3):757-771.
4. Egawa S, Ader J, Claassen J. Recovery of consciousness after acute brain injury: A narrative review. J Intensive Care. 2024;12(1):37.
5. Young MJ, Koch C, Claassen J, et al. An ethical framework to assess covert consciousness. Lancet Neurol. 2025;24(3):195-196.
