Families Are Confused, Skeptical About ‘Inappropriate’ Treatment
Many, if not most, ethics consults involve conflicts over withdrawal of life-sustaining treatment at the end of a patient’s life. Yet families are likely to be quite confused by commonly used terms such as “futile” and “potentially inappropriate,” according to the authors a recent study.1
Previous guidelines recommended intensifying public engagement efforts on end-of-life conflicts between families and clinicians.2 To learn more about the community perspective on futile treatment, researchers held focus groups with 39 participants. Most had never heard the terms “futile” or “inappropriate” applied to medical treatments, and struggled with comprehending this concept. Some thought the terms referred to malpractice.
“They did understand the concept after hearing a case example, about an elderly, comatose person with metastatic cancer being kept alive on machines,” says Thanh Neville, MD, MSHS, the study’s lead author. These themes emerged:
- Participants noted it is difficult for laypersons to understand what physicians are telling them. One put it this way: “[Physicians] say things that might be over [our] head, and we just needed somebody to break it down for us.”
- Participants were skeptical that medical treatment could ever really be inappropriate.
- Participants feared if physicians believed treatment was futile, the physician might withdraw care or refuse to offer it, undermining patients’ and families autonomy.
“Participants felt strongly that families should be the only ones to make the ultimate decision,” Neville reports.
This surprised the researchers, because the participants agreed that nonbeneficial treatments were inappropriate. Yet they still firmly believed family members should be able to choose such treatments for their loved ones if they wanted to, regardless of the medical recommendation. “Such cognitive dissonance makes goals of care discussions and shared decision-making challenging,” says Neville, an assistant professor at UCLA’s division of pulmonary and critical care.
Taken as a whole, the study’s findings reflect a society that deeply values autonomy over the common good. “The American public would benefit from a thorough discussion of the goals of medicine, which is a societal good,” Neville offers.
The results lead Neville to believe more work is needed to introduce the concept of futile or potentially inappropriate treatment to the American public. This includes extensive education and deliberation on how citizens can make justifiable societal decisions despite fundamental disagreements. Neville adds it is crucial for clinicians to be clear with families when treatments are nonbeneficial, will not change patient outcomes, and could prolong suffering. “Now, while we are confronted by an imbalance of needs and resources and anxious about our health, may be a good time to jumpstart the discussion,” Neville suggests.
The percentage of patients perceived to be receiving critical care considered inappropriate (treatment that may prolong the dying process but is not thought to result in meaningful benefit to the patient) dropped by 40% over a five-year period, according to the results of a recent analysis.3 Neville and other colleagues surveyed critical care physicians daily for four months in 2017, and asked if patients were receiving inappropriate, probably inappropriate, or appropriate critical care.
Of 10,105 assessments made by 55 physicians on 1,424 patients, 6.6% of respondents received at least one assessment of “inappropriate” critical care. This, compared to 10.8% in 2012.4 “Over the years, there has been more public awareness and literature that may have brought attention to the issue,” Neville says.5
Researchers were curious to see if there were changes in the frequency of inappropriate critical care at the same healthcare system over time. There were no obvious answers as to what caused the decrease. “But our analysis demonstrated that the change is real. Patients were equally sick; mortality was the same or higher,” Neville says.
There were no obvious differences in the patient population evaluated, or the clinicians who participated in their care. Neville attributes this to improvements in professional behavior.
Ethicists can educate clinicians on ethical principles for inappropriate care and the procedures that are necessary in situations of conflict. “Real-time ethics consultations can be very helpful,” Neville notes. “But they must be expeditious and also clinically sound.”
- Neville TH, Tarn DM, Pavlish CL, Wenger NS. The community perspective on potentially inappropriate treatment. Ann Am Thorac Soc 2020;17:854-859.
- Bosslet GT, Pope TM, Rubenfeld GD, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med 2015;191:1318-1330.
- Neville TH, Wiley JF, Kardouh M, et al. Change in inappropriate critical care over time. J Crit Care 2020;60:267-272.
- Huynh TN, Kleerup EC, Raj PP, Wenger NS. The opportunity cost of futile treatment in the ICU. Crit Care Med 2014;42:1977-1982.
- Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US); 2015 Mar 19. PMID: 25927121.
Many, if not most, ethics consults involve conflicts over withdrawal of life-sustaining treatment at the end of a patient’s life. Yet families are likely to be quite confused by commonly used terms such as “futile” and “potentially inappropriate.”
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