I am back in the clinical setting, and boy howdy has there been some moral distress on the unit in the past days. When a patient is extremely frail or ill and does not respond to all available therapy, when they’ve reached the end of their rope, the limits of modern medicine, further curative care (which often is invasive and painful) becomes futile. The medical team calls a conference with loved ones to decide the course of action. Read below from the Jecker article and bear with me.
From Medical Futility, Nancy S. Jecker, PhD, University of Washington School of Medicine.
What is “medical futility”?
“Medical futility” refers to interventions that are unlikely to produce any significant benefit for the patient…Futility does not apply to treatments globally, to a patient, or to a general medical situation. Instead, it refers to a particular intervention at a particular time, for a specific patient. For example, rather than stating, “It is futile to continue to treat this patient,” one would state, “CPR would be medically futile for this patient.”
Why is medical futility controversial?
While medical futility is a well-established basis for withdrawing and withholding treatment, it has also been the source of ongoing debate. One source of controversy centers on the exact definition of medical futility, which continues to be debated in the scholarly literature. Second, an appeal to medical futility is sometimes understood as giving unilateral decision-making authority to physicians at the bedside. Proponents of medical futility reject this interpretation, and argue that properly understood futility should reflect a professional consensus, which ultimately is accepted by the wider society that physicians serve. Third, in the clinical setting, an appeal to “futility” can sometimes function as a conversation stopper. Thus, some clinicians find that even when the concept applies, the language of “futility” is best avoided in discussions with patients and families. Likewise, some professionals have dispensed with the term “medical futility” and replaced it with other language, such as “medically inappropriate.” Finally, an appeal to medical futility can create the false impression that medical decisions are value-neutral and based solely on the physician’s scientific expertise. Yet clearly this is not the case. The physician’s goal of helping the sick is itself a value stance, and all medical decision making incorporates values.
This paternalistic bend on discussion with patients and caregivers–that whether or not an intervention is futile is a call to be made by a medical or inter-professional team–well I’m not a fan. She suggests that the use of the words “medically futile” might disrupt the discussion. In my experience doctors and nurses may tailor language to be more or less jargon-y based on a patient/family member’s experience and education, but there is no reason be opaque when if comes to describing that an intervention will not, in the HCP’s opinion, be of benefit. And it may cause pain and harm. “Medically inappropriate” sounds snobby and skirts the issue–what are we doing here? What would your loved one want? Here is what we can offer (palliative options, less invasive options, what have you). And most importantly the decision is in the hands of the patient or their proxy. For better or worse. (This exempts surgeries, etc, where a level of medical stability is required).
We owe it to them to paint the full picture then allow them the right to choose. In my experience people can handle a lot more than we give them credit for.
The place to make the change is not at the ICU bedside where grief has a hold of the wheel. Encouraging end-of-life preparation for those who are sick and those who will be tapped as caregivers should be normalized in the primary care setting (which, ehem, was sacrificed to pass the ACA).