Edward Dunn, MD, ScD, MBA, MPA, MPH, makes a point of never using the word “futile” with patients or their families. “It is a word that may elicit negative reactions from people and that can be emotionally charged in difficult situations,” explains Dunn, an associate professor of palliative medicine at the University of Louisville School of Medicine and medical director of palliative care and Ethics Committee chair at Jewish Hospital of Louisville.
Families may interpret the word “futile” to mean that clinicians are just giving up, that the patient is not important enough to continue the current level of care, or even that clinicians are trying to clear the bed for a more deserving patient. “No one can agree on what the word ‘futile’ means. In terms of benefit to a patient, does it mean 50% chance of recovery? Ten percent? One percent?” asks Dunn.
That kind of probabilistic language also is problematic. “Most people cannot relate to probabilities and will often ask for a more practical interpretation of the numbers,” Dunn explains. Families and patients ask, “Is he going to make it?” or “Am I going to die?” When discussing a highly unlikely recovery from a medical illness, clinicians might say there’s a 1% chance of survival. To this, many people would say, “I’ll take it.” “I find this language unhelpful when trying to work with a family of a critically ill patient,” says Dunn.
Clinicians must establish a plan of care that is medically indicated. That plan must be acceptable to the patient or family. “Medical indications must be in balance with patient autonomy,” says Dunn. If a patient or family requests medical treatment that is not medically indicated, clinicians do not provide that treatment. This scenario came up frequently during the pandemic with patients with pneumonia on prolonged ventilator support. The patients’ lung function had been irreparably injured, such that it was incompatible with life without mechanical ventilator support or extracorporeal membrane oxygenation support. “Those were cases in which we knew the critical care support was no longer benefiting the patient, because there was no path to recovery,” Dunn explains. Continuing the same level of critical care was no longer beneficial, because it subjected the patient to harm and there was no achievable goal. “It simply prolongs the dying moment,” says Dunn.
Conveying respect to families is of the utmost importance. Family members with anticipatory grief may feel as though their loved one no longer has a voice in the discussion. Some make comments like, “The doctor has dismissed us.” “This is a very real dynamic — and another reason to avoid the ‘futility’ term,” says Dunn. Dunn uses the terms “non-beneficial” or “ineffective” to describe treatment that is likely to do more harm than good. Occasionally, family members imply that physicians do not really care about their loved one. Clinicians should respond with empathy and compassion. “Emphasize the wish to mitigate human suffering — and reinforce the poor prognosis, which is an unfortunate reality. We must always return to reality, regardless of how painful it is for the family to accept,” advises Dunn.
Dunn routinely talks with medical students, residents, fellows, and the clinical team of nurse practitioners, nurses, social workers, and chaplains about how to communicate with patients and families. Hopefully, this prevents some conflicts over whether end-of-life care should be continued or withdrawn. “But experience is the best teacher. Most of this is simple human communication, and sensing where patients and families are emotionally,” offers Dunn.
Clinicians tend to think in terms of “appropriate” or “inappropriate” medical treatment, says Wayne Shelton, PhD, MSW, professor of bioethics and medicine at Albany Medical College’s Alden March Bioethics Institute. If a family is requesting treatment that is non-beneficial and could likely cause unnecessary harm to a patient, it could be construed to be inappropriate. “Generally, doctors are not required to provide treatment that tends to cause more harm than good for the patient,” says Shelton.
For clinicians, it is important to distinguish between qualitative futility and physiological futility. If a patient has reached the point where it is physiologically impossible for medical treatment to be effective, then there is no obligation to provide the treatment. In Shelton’s experience, cases where there is disagreement usually involve qualitative futility. For example, a patient in a vegetative state could live for many years with a feeding tube. From a physiological standpoint, the intervention is effective — it provides nutritional support. Whether it is an acceptable quality of life is another matter. “That’s the point of qualitative futility — it’s value-laden. And we generally provide more flexibility in granting surrogates what they want based on their own values,” says Shelton.
Clinicians must empathize with what it is like to be a family member being asked for direction on how to proceed. “Surrogate family members, understandably, aren’t rational onlookers in these situations. They don’t have that detachment and objectivity that doctors have,” says Shelton. Family may think a miracle will happen or that the patient will recover against all odds. The challenge for the care team is to give the family time to acclimate to the facts and get beyond the shock of the situation.
“A lot of decision-making is based on how the doctors interpret the situation medically, how severe the injury or the disease is, and what the reasonable options are for managing it,” says Shelton. Shelton says ethicists can guide the family in answering complex questions such as: Is this person going to be bedridden and unconscious or have multiple acute medical problems for the rest of their lives? In short, what kind of lives are they going to have? Will it be a quality of life they would want?
Conflicts are not always about families wanting to continue non-beneficial treatment. Sometimes it is the opposite — the family wants to withdraw treatment, but the care team disagrees. This can happen if a patient has some cognitive impairments immediately following a stroke. The patient may have indicated in the past that they would never want to live with those types of deficits, so the family wants to stop life support. Yet clinicians believe there is a possibility of meaningful recovery, so further discussion continues.
Regardless of the facts of the case, clinicians are obligated to give an accurate picture of the patient’s current clinical situation and prognosis. At the same time, clinicians must help families from an emotional perspective. “Console them, support them — and explore if they really believe their loved one would want this, and if continued treatment is in their best interest,” says Shelton.
Families may interpret the word “futile” to mean that clinicians are just giving up, that the patient is not important enough to continue the current level of care, or even that clinicians are trying to clear the bed for a more deserving patient.
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