Mary’s father died last month. Mr B was an uncomplicated man who treated most ailments with an aspirin and a beer. This time, however, the ailment was worse and the therapy less benign. His lymphoma went into remission, but chemotherapy caused complications: congestive heart failure, bowel obstruction, ascites, and eventually sepsis and adult respiratory distress syndrome. Mary, a nurse for 20 years, attended her father’s clinic visits and sat at his bedside; she was his ambassador to the medical system that dominated his life. Her clinical experience, however, was not enough to prepare Mary for the debacle of her father’s death.
For Mr B the end began quickly, but it did not end quickly. Hospialized with multisystem failure, he became confused, so treatment decisions were turned over to his wife. Mary’s mother was not ready to stop treatment as long as there was hope for recovery, and no physician told her otherwise; it seemed too much like euthanasia. Two “successful” resuscitations prolonged his death, allowing him to spend his last weeks on a ventilator, rarely coherent.
Hospital staff touted Mr. B’s physician as one of the best in the world. And indeed he maintained all the right physiologic parameters. But Mary thought him less than zero. When it came time to turn off the ventilator, he assured the family that Mr B would be asleep, and it would all be over in less than 15 minutes. At the appointed time, Mr B’s family gathered at his bedside, said their good-byes, and steeled themselves for the imminent death of a husband and father. Hours later, the physician finally came back and said, “It’s too late in the day; we’ll do it tomorrow morning” …and left. Mr B’s family went home for a sleepless night and resumed their deathbed vigil in the morning. The physician came in and said, “See, he’s sleeping; he won’t know a thing,” and disconnected the ventilator. Mr B’s eyes flew open; he looked panicked. The physician laughed-laughed!-and said, “Well I guess that did get his attention.” Without further comment, he wheeled the ventilator from the room, never to be seen or heard from again. One of Mr B’s other physicians stuck his head in the door around midday and said, “Oh, he’s still holding on” …and then left. He also was never seen or heard from again.
Mary’s father gasped and looked about the room for 9 hours. No one sedated him or treated his respiratory distress; instead, he was merely given modest doses of pain relievers. And so the family waited…and watched…for 9 hours. Finally, he died.
Neither of the physicians contacted Mr B’s family after his death. A consultant peripherally involved in Mr B’s care sent a hand-written note saying what a special man Mr B had been, as witnessed by the loving and caring family he had raised. Mrs B cherished this simple caring gesture immeasurably. Why, she wondered, did none of the other physicians care for her husband in this way?
The end began quickly. The scars will last forever. Mary does not question the management of her father’s lymphoma. She knows that medical science cannot always provide a cure. But she never imagined that technologically skilled physicians would be so inept in the art of medicine. Contemporary end of life care guided by basic compassion and caring could have spared Mr B’s family the legacy of a botched death. Instead, their grief is intertwined with a profound sense of violation. Mary’s tears stemmed more from her helplessness than from the sadness of losing her father. Despite her nursing experience she could not protect her father and family from technology run amok, from incompetence in the fundamentals of palliative care of one of the best physicians in the world, or from the relational negligence of those entrusted to care for her father. Mr B’s death will live forever in Mary’s memory for all the wrong reasons.
When will we recognize this as malpractice?