Many ethics consults involve conflicts between clinicians and families about end-of-life care. After speaking with the various parties, ethicists sometimes realize that the root of the issue is differing views of what constitutes “futile” care.
“Most of us, as we journey from our birth — ‘Point A’ — to our death — ‘Point Z’ — desire a healthy, fulfilling, meaningful life,” says Abenamar Arrillaga, MD, FACS, FCCP, associate trauma medical director at Good Samaritan University Hospital in West Islip, NY. However, some people reach a point — which Arrillaga calls “Point Y” — where quality of life is no longer possible. “If we become sick and we are in between point A and Y, most of us want to find a cure, at best, or want to prolong our life with quality as second best. However, as all practitioners of medicine know, there are many times when a person reaches point Y,” says Arrillaga.
At that point, continued aggressive care, rather than prolonging life, instead prolongs the dying process, explains Arrillaga. Individuals vary as to when they conclude that this point has been reached. However, clinicians may come to a different conclusion. “There may be a gap between what providers feel is a futile situation vs. what laypeople, who are not in the healthcare field, feel is futile,” explains Arrillaga.
Arrillaga and colleagues conducted a research study to explore this gap.1 Study participants were divided into two groups: 36 physicians (emergency medicine attendings, trauma surgeon attendings, and emergency medicine residents) and 30 non-healthcare workers (patients and their families in a waiting room of an outpatient trauma clinic). The researchers gave participants a questionnaire based on three scenarios involving treatment plan decisions. For two of the scenarios, there were futility gaps. A significantly larger percentage of physicians stated that they would not pursue treatment that was potentially futile compared to non-healthcare workers who were more supportive of continuing treatment.
In the third vignette, there was no significant difference between physicians and laypeople on whether to surgically remove a cancer in an elderly woman with advanced dementia. However, more physicians (91.7%) felt that the patient’s advanced dementia was an important factor in the decisions, compared to laypeople (63.3%). “This indicates that for physicians, quality of life is important when making these medical decisions. I would say for laypeople it is true, but not as much,” says Arrillaga. Other key findings:
- For both groups, likelihood of recovery was the most important factor in treatment decisions.
- Physicians placed greater importance on the potential for futile treatment to harm patients than non-healthcare workers.
- Non-healthcare workers prioritized patient satisfaction and fulfilling family wishes more than physicians.
For clinicians, the “futility gap” raises some important ethical considerations. “Clinical decision-making is complex, involving many factors — medical, cultural, societal, economic, legal, and humanitarian,” notes Arrillaga. Clinicians’ conclusion that a point of futility has been reached must be communicated to the patient or surrogate. During this conversation, providers can bear in mind that there likely are differences in perceptions of what constitutes futile care. “There is an opportunity for improved communication and more realistic decision-making,” offers Arrillaga.
Few healthcare providers are also clinical ethicists. “However, we do get a modicum of ethical training, and throughout our practice are confronted with ethical decisions on a daily basis,” says Arrillaga. Thus, clinicians may conclude that a point of futility has been reached earlier than patients or surrogates do. “All of us, ethicists included, can benefit from increased training and knowledge about ethics as it relates to medical decision-making,” asserts Arrillaga.
Most healthcare providers explain treatment recommendations to patients and families in terms of medicine. Ethical principles, such as preservation of life, salvageability, nonmaleficence, autonomy, justice, or societal impact, typically do not come up during those discussions. “By the time the presence of futility is being discussed at the bedside, it is usually too late to apply ethical principles to change mindsets and decisions,” says Arrillaga.
A more proactive, comprehensive approach is needed, suggests Arrillaga. That includes policymakers, administrators, insurance providers, members of the judicial system, pharmaceutical manufacturers, the media, and laypeople.
“All of us as a society — as a group of professionals in the medical field, as administrators, as lawmakers, as family members — can make contributions to decreasing the futility gap,” concludes Arrillaga.
REFERENCE
- Trtchounian A, Neville C, McCabe Z, et al. Perception differences regarding futility of treatment between physicians and non-healthcare-workers. Am J Emerg Med 2023:74:178-180.
Many ethics consults involve conflicts between clinicians and families about end-of-life care. After speaking with the various parties, ethicists sometimes realize that the root of the issue is differing views of what constitutes “futile” care.
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