An unconscious, critically ill woman, age 82, hovers near death in the intensive care unit. The physician tells her family she has no chance of survival and continued interventions would be futile. Yet her son insists the healthcare team do everything possible to keep his mother alive.
Such a situation is among the most challenging and emotionally charged you’ll confront, posing difficult medical, ethical, and legal problems. Family members are under extreme stress as they struggle to accept what seems to be the inevitable outcome—that their loved one will die. Healthcare providers, for their part, are obligated to act in the patient’s best interests. They must uphold their professional duty to relieve suffering and help maintain the patient’s dignity. But they’re not obligated professionally, legally, or ethically to offer futile interventions.
Defining medical futility
Most medical ethicists and scholars define a medically futile situation as one in which interventions are extremely unlikely to produce a significant patient benefit. A medically futile treatment is commonly defined as one that:
• won’t achieve the patient’s intended goal (if known)
• serves no legitimate goal of medical practice
• is ineffective more than 99% of the time
• doesn’t conform to accepted community standards.
Types of medical futility
One medical ethicist has proposed four types of medical futility:
• physiologic (quantitative) futility, where the likelihood that an intervention will achieve the desired physiologic effect is extremely low
• disproportionate futility, where an intervention offers no value to the patient and causes burdens disproportionate to any benefits it could produce
• statistical futility, where a given intervention has less than a 1% chance of achieving a worthwhile treatment goal. Treatment goals may be determined by the patient through informed consent, a healthcare proxy, or an advance directive; controversy can arise if the patient is unconscious or incompetent and lacks an advance directive or proxy.
• nonvalidated but plausible futility, where an intervention is based on scientific theory but hasn’t been validated by research.
Except for physiologic futility, these types of futility involve value judgments and a subjective determination by healthcare providers, the patient, family members, and in some cases other parties (such as hospital administrators, the facility’s ethics committee, and even the courts) as to whether an intervention’s possible benefits outweigh the potential for pain, discomfort, treatment failure, and expense.
Other ethicists distinguish between two types of medical futility:
• quantitative futility, where the likelihood that an intervention will benefit the patient is exceedingly poor
• qualitative futility, where the quality of benefit that an intervention will produce is exceedingly poor.
What constitutes a patient benefit?
Despite these attempts to define medical futility and distinguish its subtypes, healthcare professionals, ethicists, policymakers, and the public can’t agree on a clear definition of medical futility applicable to all situations. That’s partly because of differing views on what constitutes a patient benefit in an end-of-life situation. A treatment that merely produces a physiologic effect on the body doesn’t necessarily provide a patient benefit.
Seeking guidance for difficult decisions
Several states have formulated policies on medical futility and many healthcare facilities are developing their own policies. However, guidelines and policies offer little guidance as to what standards are adequate when treatment is deemed medically futile but the patient, family, or healthcare proxy insists that it continue.
What’s more, many people believe such guidelines reflect a paternalistic approach to health care in a timewhen patients want their voices to be heard. In the past, patients and families generally accepted the physician’s decision without question. But today, patients seek autonomy and self-direction. The Patient Self-Determination Act of 1990 requires healthcare facilities to ask patients if they have advance directives and stipulates that patients receive written information about their right to make decisions regarding treatment refusal or acceptance.
Codes of ethics
The American Nurses Association (ANA) Code of Ethics and the International Code of Ethics for Nurses provide guidance for practitioners coping with end-of-life dilemmas. The first two provisions of the ANA Code are particularly relevant. The first acknowledges the patient’s right to self-determination as the basis for informed consent. It emphasizes that all patients have a moral and legal right to decide which treatments they receive, as well as the right to receive accurate, concise information to help them make sound decisions about treatment options (including the choice to forego additional interventions if desired). The provision also states that “the nurse should provide interventions to relieve pain and other symptoms in the dying patient even when those interventions entail risks of hastening death.”
The second provision in the ANA Code addresses the nurse’s commitment to the patient, family, and community. It emphasizes that the patient’s interests are primary; when these interests conflict with others’ interests, the nurse should help resolve the conflict. If the conflict can’t be resolved, the nurse must remain committed to the patient.
The International Code of Ethics for Nurses states that nurses have four fundamental responsibilities—encouraging health, preventing disease, returning patients to health, and alleviating pain and distress. When disease can’t be prevented or the patient can’t be returned to health, the nurse must give highest priority to relieving pain and distress.
Understanding your role
As patient advocates, nurses play a major role in promoting communication among all parties in end-of-life situations. Typically, we have the closest contact with the patient and family. We also carry out most of the decisions regarding end-of-life care.
Before discussing specifics with the patient or family, collect all available facts and consult expert opinions as resources. If your patient has no chance for recovery, provide opportunities for the patient and family to meet with the physician, other healthcare team members, and clergy to help clarify misconceptions. For example, family members sometimes believe that despite a loved one’s poor prognosis, they just need to keep the patient alive until technology catches up enough to provide a cure or treatment. Provide information to help them understand technology’s limitations.
Also offer education to help them come to terms with the patient’s status and prognosis so they can make decisions based on valid, informed reasoning. As appropriate, discuss such topics as whether treatment is likely to benefit the patient or cause discomfort. Update family members frequently on their loved one’s condition. When explaining complex or unfamiliar medical terms, use simple language and repetition, as needed.
Remember that family members must wade through many emotions, which may include grief, guilt, and anger. If they refuse to allow withdrawal of life support for an incapacitated patient with no hope of recovery, encourage them to consider the patient’s life, beliefs, and values before the illness. Ask what views the patient expressed on the desired quality of life. Urge them to ask themselves, “Would my loved one want to be on long-term ventilatory support through a tracheostomy?” or “Would my loved one still enjoy life while bedridden and in pain?”
Keep in mind that some family members may have unfinished emotional business with the patient, which can cloud their judgment. To help them clarify their thoughts, feelings, and decisions, bring them back to the critical question: “What would my loved one want?” This can help them put aside their own emotions and beliefs and focus on the patient’s wishes and best interests instead.
Here are other suggestions for navigating end-of-life situations:
• Don’t let your own ethics, values, and beliefs skew your clinical judgment—and don’t project these onto the patient or family.
• Be open and honest when talking with the patient and family about interventions the healthcare team wishes to withhold or withdraw. Explain the rationale for withholding or withdrawal.
• Convey compassion. Instead of telling the patient or family, “There’s nothing more we can do for you (or your loved one),” state, “We’ll do everything possible to promote comfort and dignity.”
• Avoid the term “futility” when talking to the patient and family. Instead, discuss treatment benefits or burdens and the patient’s or family’s goals of care.
• As appropriate, consult your facility’s medical futility policy, ethics committee, or medical ethicist to help clarify your professional responsibilities.
• Follow the appropriate chain of command in carrying out end-of-life care measures.
• Always maintain a professional demeanor.
Confronting end-of-life issues with patients and families is never easy, and caring for a medically futile patient can be extremely frustrating. But as a nurse, you can help ensure that every patient has a chance to determine his or her quality of life—however long or short that life may be.
American Nurses Association. Code of Ethics for Nurses with Interpretive Statements. Available at: http://nursingworld.org/MainMenuCategories/EthicsStandards/CodeofEthicsforNurses/Code-of-Ethics-For-Nurses.html. Accessed December 19, 2006.
International Council of Nurses. The ICN Code of Ethics for Nurses. Available at: www.icn.ch/icncode.pdf. Accessed December 13, 2006.
Miles SH. Medical futility. Law Med Health Care. 1992;20(4):310-315. Available at: www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=11651551&dopt=Abstract. Accessed December 30, 2006.
Pamela S. Anderson, MS, RN, CCRN, is a staff nurse in the intensive care unit at Ball Memorial Hospital in Muncie, Ind. and a recent graduate of Ball State University’s Nurse Practitioner Program. Dara Commons, BSN, RN, CCRN, is a critical care nurse at Ball Memorial Hospital.