Quality care and a good death.

We are a family of doctors, lawyers, and professional observers. When my mother had a massive stroke we were hopeful about her condition and the care she would receive, but we were realistic as well. She had been vacationing on an island off the coast of New England during the 4th of July weekend. She had gone to bed after enjoying a pleasant dinner and lively discussion with family, and was found in the morning in a clearly incapacitated state. The first step was evaluation and stabilization locally, then transfer to a major academic medical center on the mainland. We knew that the hospital has a good reputation, but we are hospital administrators ourselves, and we know about the complexities of delivering quality care and the many opportunities for miscommunication among staff and between patients, staff, and families. We know about well-intentioned efforts to improve quality, manage risk, and provide patient-centered care and family education; but we also know that the 4th of July weekend may not be the best time to experience those ideals in real time. As it turned out, the treatment we received from the first moments we arrived in the emergency department was thoughtful and compassionate. When they said that something would take 10 minutes and we should step out of the room, we were actually welcomed back in 10 minutes. When a series of tests might take hours and we were encouraged to get something to eat or arrange for a hotel room, it was just the right time to do those things. These small but considerate actions were harbingers of the deeper and more powerful communication that took place over the course of the next 24 hours. It was quite late at night when Dr K., the stroke fellow, met with us. He reviewed all of the findings, showed us the images, and explained in detail the extent of the damage. It all made sense intellectually, but we wondered to ourselves why he looked so serious. His concern went beyond what we were able to process at that moment, but it became much clearer when he asked what my mother “would have wanted” in this situation, or in the event that the breathing tube should “fall out” or her heart stop beating. My father, a 90-year-old still-practicing physician, speaking about his wife of 65 years, said that they had discussed these matters extensively and had signed all the appropriate papers. “But,” he added, “We signed them when we were well, not when we were sick.” Dr K. heard the words and noted the quaver in his voice and responded softly, “We don't need to make these decisions right now. For the meantime she'll be a full code.” In the morning, our immediate family gathered in the neuro ICU. I greeted my siblings and said that Dr R., the attending in charge, wanted to meet with us later in the day. We would have decisions to make. At the appointed time we were ushered into a conference room and joined by the attending, the stroke fellow, a neurology resident, and the nurse taking care of my mother. The entire team spent a full hour with us. Impressively, not one beeper went off or interruption took place—coverage of their other patients must have been painstakingly arranged. Dr R. led off with an open question, signaling where we were heading, but was so sincere and gentle in tone that some of the family didn't see his implications at first: “What kind of woman was your wife?” We spent the next hour talking about the quality of life she had experienced before the stroke and what could be expected if she survived. The contrasts were so stark and her desires so clear, but he took us through the discussion bit by bit and ever so gently, going over each of the questions, thoughts, facts, and feelings, until a decision seemed to emerge on its own. We would spend some time alone with her and—when we were ready—they would take out the tube. When the time came, the nurse guided us into a waiting room while they removed the tubes and lines and tidied her up. When we returned, a comfy looking blanket had been placed on her. After a few hours the nurse said that my mother would be moved into another room so that we could have more “privacy.” I thought cynically that the purpose for the move was probably more a matter of appropriate utilization of an ICU bed rather than for our comfort, but in fact it was just the right thing to do for the family. They brought us into a private and well-appointed room with views overlooking the city. The room was as quiet and peaceful as we tried to be, watching the morphine drip and listening to her breaths as they became more irregular and shallow. After my mother died just a day after experiencing a stroke, we were as stunned and heartbroken as any family might be. What made the experience bearable and left us feeling grateful, however, was the treatment we all received at that hospital. I communicated my thanks to Dr R., who told me that part of his job is to help patients have “a good death.” I deeply appreciate his skills and compassion and see him as the key figure in facilitating that outcome. I also know that the values he embodied must be part of the culture of that hospital, since every nurse, physician, receptionist, and technician treated us with the kindness and respect that allowed the death to go so well. Much has been promulgated about quality of care and indicators of good performance, but I haven't seen a measure for the deep feelings that patients and families experience when they are receiving such special care. While suffering a great loss, my family was also touched by grace—the sense that excellent medical care was delivered to our loved one and to her family in an exquisitely thoughtful manner. The medical protocols, advanced imaging, and high tech monitors were elements of the quality of care, but the fact that a culture of kindness, respect, and clear communication was delivered at the reception desks, in the waiting rooms, and at the bedside was the most impressive feat of all.