As nurses, we all remember the first time we encountered terrible suffering. As a nursing student, I took care of a patient in his 60s who came to us with a severe respiratory tract infection and multiple comorbidities. He'd had both legs amputated above the knee because of ulcers and had a pressure ulcer on his sacrum with visible bone. He was nonverbal, not alert, and had a tracheostomy and a percutaneous endoscopic gastrostomy tube. We soon discovered that the bacteria strain responsible for his infection was resistant to antibiotics. He was on the unit for many weeks, his condition slowly worsening. Since he lacked apparent capacity to make his own health care decisions, the surrogate decision maker was his daughter. She wanted her father to remain a full code, with all possible medical interventions implemented.
The nurses were familiar with his prognosis and suffering, and I heard many times during report that this patient was “full code, but a slow code.” I found this situation morally distressing. A slow code implies that CPR and other lifesaving measures will be performed less aggressively in the event that the patient suffers cardiopulmonary arrest. The concept raises a multitude of ethical issues, as health care professionals are covertly acting against the patient's chosen code status or, in this case, that of the surrogate. In so doing, they are acting in opposition to the patient's right to self-determination, as described in provision 1.4 of the American Nurses Association's Code of Ethics for Nurses with Interpretive Statements. Addressing the practice of slow codes directly, the American College of Physicians Ethics Manual states, “Because they are deceptive, half-hearted resuscitation efforts (‘slow codes’) should not be performed.”
After a number of weeks, a physician finally had a discussion with the patient's daughter about her father's poor prognosis. His code status was changed to do-not-resuscitate, the goals of care shifted from restorative to palliative, and within a matter of days, the patient died. While I am grateful that a slow code was never actually performed, there were a series of missed opportunities for the health care team to act in the best interests of this patient. First, the code status discussion with the patient's daughter happened far too late. For weeks, the patient was in a terrible limbo. The medical treatments he was receiving were futile, and an earlier goals of care discussion could have alleviated his suffering by leading to earlier implementation of palliative measures.
Why was the disparity between the understanding of the health care team and the patient's daughter allowed to persist so long? Nurses have a vital role in ensuring that situations like these don't happen. The best approach is to engage in early and honest conversations with the patient or the patient's family; surrogate decision makers should be given all the details of a patient's prognosis before decisions are made. It is also important to distinguish code status from goals of care—nurses should encourage collaborative discussions with physicians, patients, and families when determining a treatment plan.
Once made, the decisions of patients and/or family members should be supported. In some cases, the nurse will continue to experience moral distress—possible options at this point include seeking an ethics consult; speaking with the nurse manager; or, for students, a clinical instructor's involvement.
While most agree in principle that slow codes are unethical, they still happen. Difficult conversations with patients or families regarding goals of care or code status should never be deferred, especially when death may be imminent. A health care team's passivity can lead to the prolongation of patient suffering. We are responsible for the most vulnerable—the elderly, the disabled, and the dying—and it is our duty to act proactively on their behalf.