Wrong Medicine: Doctors, Patients, and Futile Treatment

2. Why It Is Hard to Say No

CHAPTER TWO Why It Is Hard to Say No Ethics consultations take many forms. They range from nocturnal phone calls from resident physicians worried about the legal risk of accepting a patient’s request for a Do Not Attempt Resuscitation (DNAR) order, to bedside discussions in the intensive care unit (ICU) with distraught or resigned patients, to strained and lengthy conferences involving every combination of patient, families, doctors of varying specialties, nurses, psychologists, social workers, lawyers, and hospital administrators. Inevitably, intense emotions become interwoven with philosophical reflections, activities in the human repertoire that moral philosophers have traditionally tried to keep apart. By the time we are called to assist in a medical decision, there is rarely an obvious “right” answer. The situation is beyond a simple fix. Instead, the ethics consultant, together with the health care team, face options that are charged with irrational hopes at best, intolerable outcomes at worst. And yet so often, by the time we are called, decisions have already been made to press on with certain treatments , despite a general acknowledgment that the better choice would have been an entirely different approach. Why does this happen? Why is it so hard 24 Wrong Medicine to say no to treatments that are clearly providing no benefit and are only prolonging suffering? Alicia M. was a 14-year-old girl who had leukemia. The disease had relapsed several times over the past few years despite chemotherapy. Even though Alicia was legally a minor, the medical team was impressed that she had a full understanding of her illness and treatments. As her condition took a decisive turn for the worse, she began to express a preference for narcotics and other measures that would maximize comfort as opposed to chemotherapy, antibiotics , and transfusions, treatments aimed at prolonging her life. But her parents, avid bodybuilders and physical fitness buffs, kept urging her not to give up. They persuaded her and the medical team to attempt a bone marrow transplantation despite the low odds of success. This treatment required ablating her immune system first with total-body irradiation and chemotherapy. Her postoperative period was punctuated by several near-fatal episodes of shock and sepsis. Finally, she developed large areas of open, painful, and easily contaminated skin wounds and required a ventilator to assist her breathing. Prodded by the nurses, the doctors finally agreed among themselves that continuing ventilator treatment in these circumstances was futile and that Alicia had no realistic chance of overcoming her present condition. All they were doing was prolonging her suffering. After consulting with one of us to gain reassurance about ethics and the law, the physician in charge of Alicia’s care presented the facts to the family. He strongly urged that Alicia be kept comfortable with sedation and narcotics and be allowed to die without any further efforts at resuscitation or life-prolongation. The parents resisted at first, then agreed. But as they sat by their sleeping daughter’s bedside and watched her breathing become weaker and more irregular, they abruptly changed their minds and demanded that vigorous measures be reinstituted to treat her faltering heart and blood pressure and assist her breathing and combat infection. So fiercely did the parents express themselves that the doctors relented and resumed aggressive measures at life-prolongation, placing Alicia back on the ventilator and starting IV medications to stimulate her heart, raise her blood pressure, and combat infection. But these measures served only to keep her alive and miserable three more days. For months afterward, in the dining room, in the nursing stations and corridors, in fact almost everywhere doctors and nurses gathered, the young girl was the subject of anguished discussions . Why had they let that happen? Why had it been so hard to refuse Why It Is Hard to Say No 25 the demands of Alicia’s parents for treatments all the health providers had come to agree were futile? In this chapter we briefly present some of the reasons for the difficulty in saying no that we have encountered in our clinical ethics work. In later chapters we discuss them in more detail. Some of the factors are inextricably linked to the human psyche; some reflect our contemporary medical culture and the training of physicians and nurses; others arise out of “real-world” legal and political considerations. Human beings resist death. This fact is so self-evident that we consider it unnatural—pathological—when...