Clinicians and hospital leaders report high-intensity end-of-life care remains the “default” at their organizations, according to a group of researchers who conducted a qualitative study.1
“Ethicists can help by assisting in developing hospital policies and crafting ethics committees in a way that doesn’t pose unnecessary bureaucratic challenges or prevent physicians from acting in the patient’s best interest,” asserts Elizabeth Dzeng, PhD, MD, MPH, MPhil, the study’s lead author and an associate professor in residence in the division of hospital medicine at the University of California, San Francisco.
Compared to other countries, the United States uses ICUs much more frequently before death.2 “We don’t see any clear evidence [indicating] this is beneficial to patients or their families,” says Jason N. Batten, MD, MA, a critical care fellow at UCLA.
Survey respondents described the considerable time and effort necessary to de-escalate from the default use of life-sustaining treatments at the end of life. “As a system, we err on the side of overtreatment,” Batten says. “But what we see as normal and unavoidable is not necessarily how things have to be. In other countries, some of the treatments provided by default in the U.S. are not even offered for similar patients, even when they are available.”
Dzeng, Batten, and colleagues conducted 113 in-depth interviews with clinicians and administrators at three hospitals in California and Washington from 2018 to 2022. Some key findings:
• Institutions varied in the intensity of end-of-life care provided. Hospitals were selected for inclusion in the study based on metrics of end-of-life care from the Dartmouth Atlas. Two hospitals provided lower-intensity end-of-life care, while one provided higher-intensity end-of-life care. This variation in end-of-life treatment intensity is not entirely explainable by patient preferences, Batten notes.
The authors suggested hospital culture is a key factor in provision of potentially non-beneficial interventions at the end of life. “Some hospitals are better able to resist the default trajectory toward aggressive care,” Batten says. “Some provide an environment that makes it easier for the clinical team to de-escalate away from that, and some make it harder to do that.”
• Respondents observed specific policies and practices either encouraged or discouraged de-escalation. For example, achieving consensus within care teams helped de-escalate treatment. This allows clinicians to present a unified message to families.
Conversely, respondents reported attempts at de-escalation of nonbeneficial high-intensity treatments sometimes were undermined by external entities. These included hospital administrators and ethics committees.
• Respondents viewed ethics committees as playing a central role in determining treatment intensity at their institutions. Respondents at the high-intensity hospital described the ethics committee as prioritizing patient autonomy. Ethicists at those hospitals placed additional hurdles on clinicians seeking to de-escalate.
“At the high-intensity institutions, ethics committees were sometimes described like going to trial: The clinicians present their side, and the family presents their side,” Batten explains.
In contrast, at the two lower-intensity hospitals, ethics was perceived as helpful, supportive, and working in conjunction with the clinical team. At those facilities, ethics acted as a force that could come alongside the clinical team and aid them in de-escalation.
“Ethics consultations can contribute to high-intensity care, or it can be a force to help lower the intensity of care,” Batten says, adding that ethics consultants should reflect on two questions:
• In the name of autonomy, am I facilitating the delivery of high-intensity end-of-life care that might not be provided at a similar institution?
• When it is clinically and ethically appropriate, how can I make it easier for the primary clinical team to move things along toward de-escalation?
De-escalation is not always appropriate. “It is possible that the team is doing groupthink on this issue — and that what the family is requesting in terms of aggressive intervention near the end of life is actually reasonable,” Batten says.
Part of the ethicist’s role is to ask everyone involved to pause and reflect on whether de-escalation truly is appropriate. “That is a very important function of the ethics team,” Batten says.
However, it is problematic if ethicists put roadblocks in the way of clinicians acting in the patient’s best interest. “Emotionally, these cases carry long-lasting impact,” Batten says.
Many survey respondents recounted at least one difficult case where aggressive care clearly was harmful to the patient. The clinicians worked hard to convince everyone to agree it was time to de-escalate care, but high-intensity treatment continued anyway. Those clinicians reported making a decision against making the effort in future similar cases.
“If you’ve been thwarted enough times, essentially you just kind of give up,” Batten says. “It takes only one or two extreme cases for clinicians to shift the way they approach of all these cases.”
Essentially, clinicians adopt the attitude “Why even try? It’s what the family wants, so we’ll just keep going.”
“That really represents, in my view, clinicians neglecting their role to provide medical recommendations to the family based on the values and preferences of the patient as well as what is in the patient’s best interest,” Batten says.
For busy clinicians, embarking on a complex process involving multiple people to achieve a consensus to de-escalate care that is judged to be futile or potentially inappropriate can be perceived as burdensome. Taking the extreme step of imposing a treatment limitation over the objection of the family at the end of that process also puts many additional burdens on the clinician. “That kind of process is only invoked in the most extreme cases, and when it is, it’s uncommon it goes all the way to completion,” says Batten. “But there is a lot of ICU-level care provided near the end of life that clinicians feel is unreasonable, yet never triggers these sorts of processes.”
Ethicists could offer other alternative approaches to facilitate de-escalation.
“Ethicists should consider how they can make it easier for individual clinicians to de-escalate, given that the whole system is bent toward escalation and intensity, even when clinicians believe it’s inappropriate,” Batten says.
One way ethicists can help is by examining hospital policies and practices. At the low-intensity facility, policies and practices supported clinicians’ efforts to de-escalate. “Ethicists could be asking themselves: ‘How can we design a system or a clinical environment that makes it easier for conversations about de-escalation to happen?’” Batten suggests.
REFERENCES
1. Dzeng E, Batten JN, Dohan D, et al. Hospital culture and intensity of end-of-life care at 3 academic medical centers. JAMA Intern Med 2023;183:839-848.
2. Abuhasira R, Anstey M, Novack V, et al. Intensive care unit capacity and mortality in older adults: A three nations retrospective observational cohort study. Ann Intensive Care 2022;12:20.
Ethicists can help by assisting in developing hospital policies and crafting ethics committees in a way that does not pose unnecessary bureaucratic challenges or prevent physicians from acting in the patient’s best interest.
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