Isn’t There Something Else You Can Do?
I met Miriam and her husband over thirty years ago, when they came to me for primary medical care. They were devoted to each other, always in close proximity, Miriam hooking Eddy’s arm as he moved ahead of her on the way to my office, pulling him back next to her heart. They finished each other’s sentences, and made sure the other came clean with their answers to my medical questions, sometimes jabbing each other in a loving, comical way, clearly putting on the Miriam and Eddy show to entertain their young doctor.
I smiled each time I saw their names on my daily appointment list. After I closed my primary care practice to concentrate on hospice and infectious disease, I lost touch with them. Years later, I closed one circle when Eddy died in our hospice.
Several years passed before I reconnected with Miriam. Her children called me to her bedside to discuss options around hospice care after her hip fracture was followed by a series of five hospitalizations for congestive heart failure and episodes of confusion caused by dehydration and urinary tract infections. But, Miriam was still not ready to call it quits. Even in her mid-nineties, with an almost conspiratorial twinkle in her eyes, her response to questions about hospice was to announce, “I’m not done yet.” Besides, her children could not agree about limiting their mom’s treatment to comfort rather than life-prolonging care. Fortunately, Miriam could afford 24-hour caregivers.
Another year went by before I heard from her children again. Sitting at Miriam’s bedside at Tucson Medical Center, they explained that she had fallen again, this time hitting her head and requiring sutures to her scalp. Although CT scans revealed neither brain nor neck injuries, Miriam was now too somnolent to participate in our hospice discussion. Her heart and kidney function had deteriorated, and there had been a dramatic loss of weight since I had last seen her. This time, her son and daughter achieved consensus to transfer Miriam to hospice that very day. As often happens, each still had a different understanding of “comfort care.”
Jerry, the older sibling, who had flown in the day before, immediately requested that we schedule regular doses of morphine to stay ahead of the pain. Rebecca, who lived in Tucson and was responsible for organizing her mother’s care, demanded that we postpone narcotics and sedation to see if Miriam would wake up. She felt that if Miriam could begin eating and drinking, she could live a while longer. Rebecca did not ask my opinion about whether her mother would awaken, so I kept my mouth shut and served as mediator, reassuring them that we could keep mother relatively comfortable while we waited to see if she came back to consciousness.
For the next five mornings, both children waited for me at Miriam’s bedside. Their mother had not re-awakened, and had continued to decline, solely emitting moaning sounds when our team turned her from side to side to prevent bedsores. Jerry continued to ask for higher and more frequent doses of pain medication. His eyes only saw his mom’s suffering. His sister’s suffering eluded him. Without saying as much, his tone implied that his sister was selfishly, and unrealistically, holding on to hismother. He muttered comments about quality of life.
Each morning, Rebecca asked me the same desperate question, “Isn’t there anything else you can do for my mother?” Each morning, I would explain that we could transfer Miriam back to the hospital for IV fluids and diagnostic testing, because there was almost always something else we could do with current medical technology. I would also explain that at the end of life, no matter from cancer or heart disease, strokes or liver failure, our bodies eventually become incapable of taking in food and fluid, and that this is Nature’s way to give us the least uncomfortable death. I also felt obligated to explain that giving IV fluids to someone so close to death often worsened symptoms, as the fluid cannot stay in the vascular space, instead leaking out into the tissues and lungs, causing bloating of the body and making breathing more difficult.
After nearly thirty years of hospice care, I know that this scientific explanation gives solace only to those ready for death to come, and can even sound manipulative and self-serving to those who are not. Fortunately, Rebecca knew that I loved her mom, so she was able to listen without anger, or too much skepticism. Each morning, Jerry would remind his sister of Miriam’s more recently stated wishes, “I’m ready to have this over with.”
By the sixth morning, Miriam’s condition was grave. Her breathing was deep and rapid, her brain ordering the lungs to blow off carbon dioxide to correct the critical accumulation of acid in her body from days of dehydration, kidney failure, and low blood pressure. When Rebecca asked her question on that morning, I told her that her dear mom would not be able to survive in any medical facility. It was too late for any further intervention. Miriam was dying. Rebecca’s eyes filled with tears.
As I looked back and forth between Jerry and Rebecca, a thought came to mind that very soon mother would be gone, but brother and sister would likely be alive for years to come. I pondered out loud, “Even with her discomfort and pain, how long do you think your mom would stay alive in order for you both to come to terms with her death? How long would she stay alive so that you, Rebecca, didn’t feel that your brother was killing her in order to get home sooner to his work and family? And Jerry, how long would Mom endure for you to see that your sister is not selfishly putting her through unnecessary torment, but rather struggling with being left alone in the world?”
Jerry and Rebecca looked at each other. Jerry got out of his chair and, for the first time that week, sat next to his sister on the sofa. Taking her hand, he looked at me and said, “Our mother would stay alive for another month to be sure that we would get back to loving and respecting each other. We both love our Mom.” In response, Rebecca rested her head on her brother’s shoulder. Eyes filled as all three of us quietly honored this remarkable woman.
Then, after a deep breath, Rebecca turned to me. “Just make sure that ourmother is comfortable.” Miriam died a few hours later.