When You Least Expect It

Abstract

My brother Jeff's voice on the cell phone said, Julie, it's Mom. It was one of those calls you never want to receive. Some people think that being a physician insulates us from the impact of such a call, but when it involves your own family, the emotional shock still runs very deep. My mother had end-stage Alzheimer disease. She had been in a nursing home for four years and virtually noncommunicative for the past three. She and my father had had several conversations over the years about how they wished to live the final days of their lives, usually sparked by the death of one of their parents or an event in the news. She was a vibrant, intelligent woman who never would have wanted to end up in a state of severe dementia, completely dependent upon others, being spoon-fed, unable to wear her Isaac Mizrahi fashions because they were impractical nursing home attire--clothes too fashionable to be stained by the drippings of mashed food that might not successfully stay in her mouth. She was unable to read any of the books that were constantly piled on her night table, nor any of the multiple Chicago newspapers she had once read every day. She would never have wanted to be in a situation where she could not interact meaningfully with her family. My son was born last year, and she did not know he existed. In her current state, and based upon her clearly expressed wishes, my father had the physician sign a do-not-resuscitate order. When I received the call from Jeff about our mom, I was on vacation with my family. We had just arrived at the swimming pool. My husband could tell from my face that I needed some time on the phone, so he splashed with the kids while I spoke with my brother. Ironically, my father was also on vacation, taking the trip of a lifetime, hiking in New Zealand. He was the primary decision-maker for my mother, living near the nursing home and visiting her regularly. He paid attention to every detail to ensure that she received the best care. Jeff, who also lived near our mom, was watching over her in my father's absence. He told me that over the past few days she had developed a fever. The staff nurse at the facility had asked Jeff over the phone if she should send Mom to the hospital for evaluation, but this clinical pattern had occurred many times before without incident and without necessitating a hospital visit. He expected a routine, self-limited illness like anyone might experience. When he walked into her room that morning to visit, he found her skin warm with a low-grade fever. She appeared to be asleep in the bed made with sheets from home, neatly tucked, beneath selected pictures of our family and her earlier travels. Jeff saw that the staff were now giving her oxygen through a tube in her nose. had asked again when he arrived if she should be sent to the hospital, but they gave him no indication that this illness was any more serious than her previous ones. By the time I received Jeff's phone call, he had been home from his visit for a few hours. He told me that he had just received another call from the center, and that Mom had deteriorated. Her fever was higher, and her breathing increasingly labored. The staff were not able to wake her. Again, they asked for authorization to send her to the hospital. Jeff wanted my help with this decision. Our father was twenty-one hours away over the International Date Line on his hiking tour, and my brother's copy of his itinerary showed that he was not scheduled to reach a hotel where we could contact him for another two days. They said her oxygen level is 65 percent, Jeff told me. I gasped. Jeff is an attorney, a very smart man, with a general working knowledge of many medical issues, but from his tone I could tell that he did not understand the life-threatening implications of this number. Was her breathing really failing so rapidly? Was she in shock? I told my brother that if that number was true, then her death would come very soon. …