Moral distress was originally described by Andrew Jameton as knowing the morally correct course of action but failing to act. Extensive literature has focused on healthcare providers' experience with moral distress. (See "Mitigating Moral Distress in Nursing" from the November/December 2017 issue.) However, how a patient's family members cope with this distress has been far less explored. This article aims to raise healthcare providers' awareness of moral distress in family members and offers supportive strategies.
Shifting definitions
Jameton coined the term moral distress in 1984. He noted that moral distress "expresses a decision point, a moment of emotive immobility, where ambivalence needs to be resolved toward a choice. Once the choice is made and action is undertaken, the psychological elements of distress tend to diminish." Moral distress in healthcare providers is typically multifactorial and may include various institutional barriers, conflict between coworkers or between the provider and the patient or the patient's family members, intimidation, or fear of retribution. Someone experiencing moral distress knows the correct course of action, yet is in a state of action paralysis. This distress typically resolves itself after a decision is made.
However, there are nuances that we must consider. The traditional definition of moral distress has been questioned for being overly restrictive, with detractors arguing that moral distress isn't only experienced by healthcare providers and caused by institutional barriers. Further, moral distress doesn't merely have to mean a failure to act. Often, it can be caused by a caregiver's unresolved emotions regarding an event, such as a medical decision or a poor patient outcome.
Merlinda Weinberg states that moral distress may manifest when no "correct" course of action is identifiable to the decision-maker. It seems reasonable then that moral distress can also follow an unsatisfactory decision, as well as being caused by uncertainty and inaction.
For example, a recently published case report stated that the patient, a baby born at 23 weeks' gestation with a high likelihood of lung hypoplasia and immature lungs, was provided with maximum respiratory support for more than a week. Cranial ultrasounds evidenced hemorrhaging and other complications, and the healthcare team unanimously agreed that death was imminent. When the attending physician brought the dire news to the parents, the mother straightforwardly told the physician, "Please don't expect me to say that it will be okay to turn off the ventilator support." The physician reported that the parents made it abundantly clear that they understood the thinking of the healthcare team, but they didn't want to be asked to agree with changing the therapeutic goals from life-prolonging to palliative. They didn't want to assume responsibility for this choice, but they were willing to accept the physician's decision.
This example demonstrates the type of decisional paralysis that moral distress can cause in families. Unfortunately, there's little research on the moral distress experienced by families in a healthcare situation. Moral distress in healthcare workers is largely recognizable by feelings of anger or frustration, but less outwardly noticeable signs, such as feelings of belittlement or unimportance, can also manifest. For family members, it seems plausible that these signs may also be present, but more research is needed.
Supportive strategies
Strategies for helping nurses deal with moral distress abound, yet the application of these strategies for patient family members is scant in the literature. Nonetheless, they may be transferrable, although more empirical research is needed. Such supportive strategies include the 4 A's approach developed by the American Association of Critical-Care Nurses.
First, ask whether the family member is feeling distressed. Second, affirm that distress is present. Third, assess the source of the distress. Fourth, create a plan of action.
Further, knowing about support services that can help families when facing moral distress, such as a clinical ethicist or chaplain, is helpful.
Helping each other
There's much left unknown about the moral distress experienced by family members. The healthcare team must work together to recognize when patients' family members-who often function as healthcare decision-makers-are experiencing moral distress and provide much-needed support.
Bonus content
Head to http://www.nursingmadeincrediblyeasy.com for additional resources on moral distress.
Mitigating moral distress in nursing
https://journals.lww.com/nursingmadeincrediblyeasy/Fulltext/2017/11000/Mitigatin
REFERENCES