Surprising reasons for continuing futile treatment

Emotions run high on both sides

The reasons for providers continuing futile life-sustaining treatment are primarily emotional, such as guilt, grief, fear of legal consequences, and concerns about the family's reaction, according to a recent study which surveyed intensive care unit (ICU) and palliative care clinicians.1 "The reasons and motives that the clinicians gave for performing futile treatment amazed us," says Ralf J. Jox, MD, PhD, the study's lead author and an assistant professor at the Institute for Ethics, History, and Theory of Medicine at the University of Munich in Germany. "We thought they would all highlight the unrealistic treatment wishes of patients and relatives. Instead, they presented a variety of very personal and emotional reasons."

If a certain treatment is ethically unjustified, even the strongest emotions shouldn't change a provider's ethical assessment, argues Jox. "On the other hand, these emotions should be taken very seriously. They show us how we could, and must, improve the provision of health care in hospitals," he says.

Patti White, PhD, Esq, a San Diego-based psychologist who has consulted on end-of-life hospice care, says providers should remember that nothing prepares a family member to make a life-ending decision for a loved one, and that providers themselves experience many of the same emotions. "The natural tendency for some is to delay making the decision; for others, to altogether refuse to make it," she says. "Guilt, grief, fear of legal consequences, or concerns about family reactions are to be expected, anticipated, and compassionately understood."

Jox notes that some ICU providers have started to use patient diaries, allowing clinicians to express their perceptions and experiences with a patient in a narrative style. "Such interventions may reduce the psychological burden on professional caregivers and, thereby, also help them to do what ethics and law require them to do," he says.

Be prepared for conflicts

While competent patients are generally entitled to make their own decisions, even if these conflict with those of the family or physician, decisions regarding medical futility often involve patients who are no longer competent or are only competent on an episodic basis, notes Gary E. Jones, PhD, JD, a professor in the Philosophy Department at University of San Diego (CA).

"In such cases, it is hoped that the patient executed an advanced directive while competent, especially a directive that is sufficiently specific in regard to the kind of treatment decisions at hand," he says.

Even if the patient has executed an advanced directive, the physician will often be interacting with the patient's adult family members and/or the patient's advocate as determined by a durable power of attorney or its equivalent. Jones says that physicians should emphasize that while certain courses of treatment may be futile, medical care is never futile.

"Physicians should allay fears that the patient will be abandoned," he says. "It should be emphasized that the patient will receive palliative care, pain control, and treatment that is respectful."

If physicians believe a certain treatment is futile, Jones says they must engage in an in-depth discussion of the relevant treatment options and indicate the reasons they feel that the treatment is futile, in terms of the likely outcome and the probable wishes of the patient. "In most cases, an agreement can be reached regarding the patient's probable wishes regarding treatment," he says.

In cases in which resolution is not possible, the physician should consider referring the case to the institution's ethics committee, consulting with other providers, or, in extremely difficult cases, transferring the patient to another facility. "This situation, however, poses a significant ethical problem," says Jones.

The family might be adamant that the patient receive all possible treatment, including treatment that is painful and will last over a protracted period of time, for example. If the physician believes that the treatment is not only futile but also not in the patient's best interest, he or she might conclude that legal intervention is required.

"The physician may reasonably conclude that merely allowing the family to attempt to find another physician who will agree with their opinions is insufficient," says Jones. "In such a case, the appointment of a legal guardian by the court may be the only manner in which to protect the interests of the patient."

Reference

  1. Jox RJ, Schaider A, Marckmann G, et al. Medical futility at the end of life: The perspectives of intensive care and palliative care clinicians. J Med Ethics 2012;38:540-545.

Sources

Cynthia Griggins, PhD, Assistant Professor of Neurology, University Hospitals — Case Medical Center, Cleveland, OH. Phone: (216) 844-1852. E-mail: cynthia.griggins@uhhospitals.org.

Gary E. Jones, PhD, JD, Philosophy Department, University of San Diego (CA). Phone: (619) 260-4089. Fax: (619) 260-7950. E-mail: garyj@sandiego.edu.

Ralf J. Jox, MD, PhD, Assistant Professor, Institute for Ethics, History and Theory of Medicine, University of Munich, Germany. E-mail: ralf.jox@med.lmu.de.

Medical futility policy should include these steps

Gary E. Jones, PhD, JD, professor in the Philosophy Department at University of San Diego (CA), says that all health care institutions, whether large or small, should adopt a policy on medical futility, and that policies on medical futility should follow a due process approach with these seven steps:

  1. Earnest attempts should be made in advance to deliberate over and negotiate prior understandings between patient, proxy, and physician on what constitutes futile care for the patient and what falls within acceptable limits for the physician, family, and, possibly, also the institution;
  2. Joint decision-making should occur between patient or proxy and physician to the maximum extent possible;
  3. Attempts should be made to negotiate disagreements if they arise, and to reach resolution within all parties' acceptable limits, with the assistance of consultants as appropriate;
  4. Involvement of an institutional committee, such as the ethics committee, should be requested if disagreements are irresolvable;
  5. If the institutional review supports the patient's position and the physician remains unpersuaded, transfer of care to another physician within the institution may be arranged;
  6. If the process supports the physician's position and the patient/proxy remains unpersuaded, transfer to another institution may be sought and, if done, should be supported by the transferring and receiving institution;
  7. If transfer is not possible, the intervention need not be offered.

What is futility? Definition unclear

There are many ethical challenges involving medical futility, but possibly the biggest one is a lack of agreement among medical professionals or among ethicists about how futility is defined, says Cynthia Griggins, PhD, an assistant professor of neurology at University Hospitals — Case Medical Center in Cleveland, OH.

"There have been attempts to quantify the definition such as defining a treatment as futile if it has not been successful in the last 100 patients. But for various reasons, this has not been accepted," says Griggins, nor has a more general definition been accepted, such as futility being defined as no reasonable chance that the treatment will improve the patient's condition.

"If the medical profession cannot even agree on a definition, then providers are going to be extremely reluctant to label something futile, especially in the face of disagreement from the family," says Griggins.

On the providers' side, obstacles to labeling a treatment futile include fear of being sued for not providing treatment, discomfort with conflict, the wish to preserve hope, and the provider's own discomfort with accepting death, says Griggins. Providers might believe that the patient and family always have a right to any treatment they request, that it is the provider's duty to "do everything" to preserve life, or that in the face of no definition of futility, then nothing is futile and every treatment is appropriate, she says.

"Because no one has agreed on a definition of futility, I think physicians are better off thinking of when they should not honor requests from the patient or family," says Griggins. "They should always be weighing possible harms and burdens against possible benefits. If the harms seriously outweigh the benefits, then they should not be providing that treatment."

Physicians aren't necessarily supposed to provide a treatment just because a patient or surrogate for the patient requests it, she underscores. "We generally think of autonomy as a 'negative' right — 'Keep your hands off me unless I give permission' — and not a 'positive' right — 'You must give me whatever I request,'" says Griggins. "If it looks like the patient is going to be harmed with no chance of benefit, then the physician shouldn't be providing it, even if the patient or family insists."

Griggins notes that her institution defines futility in a very strict manner: That there is no reasonable chance that a proposed treatment will do what it is supposed to. "This is a medical call. For example, a family requests a particular antibiotic be given to a patient and we know that he has an infection that is resistant to that antibiotic. We know it won't work," she says. If the treatment will do what it is supposed to do, but not improve the patient's overall condition, then one has to ask if the overall condition is acceptable to the patient or family, says Griggins.

"This is a question of values, not medicine, and we usually let the family decide," she says. "So if a feeding tube will maintain a person in a persistent vegetative state, and that state is acceptable to the family, then generally we don't label the feeding tube as futile."