Medical Futility
Another key ethical dilemma was the feeling of providing futile care for L.J.. "Medical futility" is a complex concept as there is no universally accepted definition. Some view care as being futile if the goals of treatment are not achievable or when a seriously ill patient has an extremely low likelihood of meaningful recovery. A study by Sibbald et al used semistructured interviews with physicians, nurses, and respiratory therapists in an ICU to develop a working definition of "futility" that was ultimately summarized as using considerable resources without a reasonable hope for recovery to a state of relative independence and interaction with the environment. When participants were asked why medically futile care was offered and provided, the 3 most common themes were demands from family or decision makers, lack of skilled and timely communication, and lack of consensus among team members. Although each theme can be viewed separately, it is truly the blending of all 3 that creates the perfect storm of difficult decision making in emotionally charged conditions.
Health care providers often find themselves in critical situations where choice of treatment seems to lie in the hands of the patient's family or surrogate decision maker(s). In many of these cases, individuals dictate care without any previous health care knowledge and insist on treatments that may or may not be supported by the medical teams involved. In certain states, an agreement between 2 attending physicians that a case is "medically futile" may be enough to legally cease unnecessary, sometimes harmful, interventions. In the states that do not have this legal support, families are left with the burden of making choices based on their understanding of an extremely complex situation. Although decisions to pursue futile care against medical advice may be driven by cultural or religious beliefs and lack of critical care knowledge, one must not forget that even with a knowledgeable decision maker, sometimes choices are made in hopes of having a few more moments with their loved one. L.J.'s husband verbalized understanding of his wife's poor prognosis and did not want to see her suffer, as demonstrated by his agreement to place the "do not resuscitate" order. Regardless, his desires to continue the current measures and escalate care to a certain point were largely driven by his emotional dedication to his wife. This aspect of decision making cannot be ignored.
Gaps in understanding may be filled by initiating clear and timely communication with patients and families throughout the disease trajectory. Unfortunately, this does not happen routinely, and critical care teams are tasked with breaking bad news to patients and family members in a crisis situation. Communication is also essential between different team members to ensure that a unified message is being presented to the patient and family. This is especially crucial when a consensus on the plan of care has not been reached between providers, including the many consulting teams who can fall into a pattern of focusing on specific organ systems rather than the total patient. Differing messages from care teams can contribute to the patient's and family's feelings of mistrust for the medical system and create barriers to communication later in the ICU course. Frequent discussions and family meetings should be held with all involved parties to outline different perspectives that avoid medical jargon.
Whether clear and timely conversations could have prevented a prolonged death in the ICU for L.J. is unclear; however, dialogue should have been initiated between the ICU nurses and medical team caring for this young patient. Unfortunately, the ethics and palliative care teams were consulted late in the case when the focus of concern was primarily L.J.'s goals of care. The case also happened to take place at the beginning of an academic year when new medical residents and fellows were just becoming oriented to the hospital system. Because of this, steps were not taken to communicate with the nursing staff to get their daily perspective on patient care.