Ed is a 45-year-old man admitted to the intensive care unit with sepsis and failure to thrive. He was badly injured in a motorcycle accident two years ago, resulting in multiple medical problems that have left him dependent on a ventilator. The vent makes communication difficult, although Ed can usually make himself understood by mouthing words. He often complains of pain and shortness of breath. His prognosis is very grim.
Ed has been divorced for many years and has no children. He is generally alert and has capacity to make decisions. He has designated his mother as durable power of attorney for healthcare, and she has had to make decisions for him on several occasions since his accident. She appears to be distrustful of the staff and dissatisfied with his care, despite efforts to involve her.
Recently, despite several months of aggressive treatment, both Ed’s prognosis and his quality of life have worsened. It is difficult to control his symptoms adequately, especially his feelings of shortness of breath. When alone, Ed repeatedly tells staff members that he wants to stop all measures except the ventilator and be allowed to die comfortably. However, his mother insists on full treatment to keep him alive as long as possible, and in her presence Ed recants his wishes to die. She is dismissive when told about his request for comfort care, and even after being assured that a psychiatrist has assessed her son as having decisional capacity, she says, “Ed isn’t in his right mind.” Ed seems to truly want to stop life-sustaining treatments but seems to be equally unable to hold onto his wishes under the influence of his mother. Staff members are concerned that if Ed is given comfort care per his request, once his condition declines further, his mother will reverse the goal of care. They are also concerned about the threat of a lawsuit.
Meetings with Ed and his parents are difficult, as repeated exposures to his mother’s cajoling seem harmful, and Ed tires easily from the effort of “talking” on the ventilator. His father remains passive, in effect supporting his wife. Opportunities to limit his parents’ visits, change surrogate decisionmakers, or record his wishes in writing have been offered to Ed, but he always declines. Ed and his parents also decline support from the chaplains.
During one emotional family meeting, Ed acknowledged his desire to die to his mother, saying, “I have suffered long enough.” Later that afternoon, his parents presented a document to be placed in Ed’s chart affirming Ed’s wish to accept all life-sustaining measures. It bore Ed’s signature.
