What is futile care, and why does it pose such an ethical dilemma for patients, families, nurses, and other health care professionals?

Futile care is treatment given to a patient whose condition leaves no possibility of medical benefit from it, making no difference in the outcome for the patient and placing a greater burden on the patient and/or the family. The stress for nurses occurs when they know the right action to take, insofar as acting as an agent for their patients, but are unable to take that action. The nurse feels powerless in these situations.

Likewise, families are left in a quandary not knowing what to do for their loved ones. They want to make the best decisions, but often receive contradictory information or are given options they cannot choose among because they do not have the knowledge within the context to do so. They feel powerless as they attempt to sort through information to make an informed and contextual decision. Futile treatment places an unfair burden on a patient and the family.

A typical decision that families are called upon to make is whether to resuscitate (CPR) or not resuscitate (DNR).  It is postulated by Blinderman, Krakauer, and Solomon (2012), that asking families to make CPR or DNR decisions in the face of almost certain death causes unnecessary harm to them. It creates a decision-burden for the family that they did not need. This decision-burden would not change the outcome (death), yet would likely trouble them for the rest of their lives. It is time to change the approach to the dying and to their families. Families and patients may still be asked this question, but the context has to be the guide.

Let’s consider next the insertion of a feeding tube, which can help stabilize a patient and improve his or her quality of life for a time. Many treatments are known to help patients and prolong their lives without causing undue pain and suffering. However, inserting a feeding tube for a patient who is in the final stage of pancreatic cancer is causing harm, prolonging death, and/or making the death more difficult by extending suffering. The immediate individual context must provide the foundation for a decision.  A decision made out of the context can only be ethically correct by accident.

“There are worse things than death.”  This statement, as harsh as it sounds, needs to be factored into the decision about what to do, namely to treat or not to treat. Allow the course of the illness to determine what happens, or intervene by giving fluids, for example, which is appropriate in one context and detrimental in another. A medically useful treatment includes the expectation of a benefit that can be perceived by the patient and/or family as such.

Justice is an important part of futile care decisions. Justice is concerned with benefit and harm. Should we ask patients to endure treatment with only a slight chance that it will improve their situation? What rational being would choose care that fails to provide a benefit?

Our book talks about agreements that each professional has with his or her patient and the patient’s family. And that agreement is to benefit, not place additional burdens on the family or the patient.

For more on this topic and on the role of bioethical decision making in health care, see Bioethical Decision Making in Nursing, Fifth Edition, which includes a new chapter on moral distress with a discussion of futile care.