Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [71]
Deidre told us that her father felt “paralyzed,” and although he was the health proxy, he was so distraught that he could hardly speak.
Mr. Quinn couldn’t stay and watch his wife die. “It was too hard for Dad,” Deidre said, “so I told my brother to take him home. Not to worry. We girls would be with her.” One of Deidre’s sisters went to her car and got the rosary beads that Mary had given her as a child. Another sister had brought the handkerchief that Mary had embroidered for her and she had carried all through her growing years.
“It’s funny how you revert,” Deidre said. “We all sat there with Mom. It was as if we were all back in elementary school together. My sister started saying the rosary, and my other sister held on tight to the hanky. We all grew up in the same house, the three of us shared a room, and we were all there together.
“We decided together to take her off the ventilator,” Deidre told us. “Now that we knew that the cancer was back in force and she was unconscious. The conversation with the oncologist helped clarify things for us.”
Mary was still unconscious when she was taken off the ventilator. Within a minute, her chest began to heave and she was gasping for air. The nurse gave Mary morphine. “If you had asked me five years ago, could I be in the room and watch my mother die, I would have said, No. But somehow I found I was able to do that, even though it was horrific. When they took the tube out, I heard those noises, Mom gasping, her arms flailing. It was so horrible. I could do nothing but weep. But that was very cathartic. So that surprised me on a personal level.” Over the course of several hours, the gasping slowed. Mary died just as the sun was setting.
After Mary’s death, Deidre spent much time reflecting on what had happened. We asked her if another loved one became seriously ill, would she handle things any differently from the way things had gone with her mother? “I want to shout out and say, ‘Yes!’” Deidre replied. “We thought we had had the conversation, but we hadn’t. We thought we agreed on no heroics—that everything would be clear. But it wasn’t. It was such a struggle for me, and looking back, I feel guilty that I never had an open conversation with Mom about palliative care, instead of one more procedure to try and poke a hole in her liver, and drain it and get rid of the infection. My biggest struggle personally is that that kind of conversation was never held.”
A study published in 2010 in the New England Journal of Medicine evaluated the potential benefit of early introduction of what is called “palliative care.” This involved “specific attention” to assessing “physical and psychosocial symptoms, establishing goals of care, assisting with decision making regarding treatment, and coordinating care on the basis of the individual needs of the patient.” All these patients had newly diagnosed metastatic lung cancer. They were treated at Massachusetts General Hospital but weren’t hospitalized. Rather, they were living at home. The patients were randomly assigned either to receive usual care or to receive usual care and palliative care. Those assigned to the palliative care group met at least monthly with specialized physicians or nurses. The results of the research showed that patients receiving palliative care chose less aggressive therapies but nonetheless lived longer, some two to three months, and had somewhat better quality of life. In the editorial accompanying the article, Drs. Amy Kelley and Diane Meier of Mount Sinai Medical Center in New York noted the “salutary effect” of additional time with and attention from physicians, nurses, and other health care professionals.
The need to provide more individual attention and spend more time with very sick patients will collide with a modern medical system that increasingly rewards “efficiency.” Prominent health policy planners, and even some physicians, envision the hospital and its clinic as a factory and assert that medical care should be delivered