At 2:17 am last Saturday, my wife and I knew the end was near. My mother-in-law was resting in her hospice-provided hospital bed in our extra downstairs room. My wife lay on a couch feigning sleep on one side, while I tried to rest on a futon on the other side. My mother-in-law suddenly made a loud noise, then vomited a small amount of liquid, just enough to stain her pajamas and pillow case. My wife and I got up, looked at the clock, looked at each other, turned on the lights, and silently went about the task of changing her pajamas and pillow case. Her breathing was more gurgled. She remained minimally responsive, except for some grimacing when we turned her.
Shortly after changing her, she vomited again, this time more extensively. It went everywhere. Including into her lungs. Her breathing grew coarser, and she began having several seconds of apnea. We changed her clothes and pillow once again, and turned on all the first floor lights. My wife and I were numb with sadness, numb with a loss that had been developing over many months, numb with fatigue, numb with relief.
We watched her mother for 10 minutes or so, then my wife, an ICU nurse by vocation and avocation, said I want to know her blood pressure. I got the BP cuff from upstairs. 120/72, much lower than her usual. Pulse 65. Not terrible. But her breathing was visibly slowing, and the apneic periods were increasing.
Call my brothers, said my wife. It was almost 3:30 am. Her sister was out of town, and had already said her goodbyes, in case something happened while she was away. I dialed one brother, wondering what he would think when he saw who was calling. Caller ID has eliminated the anticipation we used to feel when the phone rang. He probably would have known who it was anyway. Who else would be calling at that hour. I told him it seemed she would die soon. Shall we come now, he asked? Yes, I said, though as I watched my mother-in-law’s breathing continuing to slow, I thought he and his wife would not arrive in time. They lived a half hour away. I dialed the other brother. He was already awake, getting ready to go to work. He said he would call his job and cancel the shift. He and his wife also lived a half hour away. Too late, I was sure.
My wife and I sat on either side of her mother, holding her hands. We told her to hang on, that her sons were on their way. Once or twice I wondered if she squeezed my hand back. Probably just my imagination. We said little, though we did say a little. Recalled some of the trajectory of her illness, as she was taken down by one small stroke after another. Her last six months had been very hard, on her, on the family, on her friends. On almost a weekly basis, she would lose a bit more function, a bit more cognition. Maybe three months earlier, while still able to communicate clearly, she told her children that she had changed her mind about wanting to die in the hospital, as she had put in her Advance Directive. She told the family she wanted to die at home.
My wife and I wondered whether her brothers and their wives would arrive in time. We discussed whether to give more morphine, but decided not to. She did not seem to be in discomfort.
One brother arrived at 4:30. Mom’s breathing was slowing more. We told her to hang on until her other son arrived. She made no response. Had she heard us? Perhaps, because she kept breathing.
I want to know her blood pressure, said my wife. 76/50. Pulse 64.
The other brother arrived about 5:30. Her breathing was even slower. We sat by her bedside for the next hour and a half, talking with each other. We also talked to her and, we hoped, with her, telling her we loved her, how good a mother she had been. Tears fell, but did not stain. I went out and made coffee, hoping nothing would happen while I was in the kitchen. We sat around her, sipping coffee, our last communion together.
I am not one to be superstitious, and am probably the most rationalist member of the family. So I was surprised when, shortly after 7:00 am, the room we were in suddenly became very cold, so cold I had to put on a sweater. Everyone noticed the falling temperature.
Her breathing slowed more.
At 7:07, the gurgling that had accompanied each breath stopped though her chest still rose and fell slowly. We all knew what came next. We hugged her, said our last goodbyes, and she took one last breath. At the same moment, there was a slight twitch of both eyebrows and what seemed like a slight shrug of her shoulders. And then she was gone.
While it was sad to see her go, her death was a good one. She had very little pain and anxiety. She died in a comfortable bed. Her family was at her side, as close as could be. Perhaps she sensed our presence. We certainly sensed hers. And we were able to share and bond with her for her final hours.
Several days have now passed, and I keep thinking about how my mother-in-law had a good death. So many people do not have that option. They may die unexpectedly, with no chance to say goodbye. They may die alone, or in pain. Their surroundings may not be comfortable and peaceful. My mother-in-law died as she had requested, at home, surrounded by family, without pain.
And even though my principal thoughts and emotions currently center on my wife, our family, and our loss, I also am more deeply reflecting on the important role we physicians need to play in our patients’ lives as they approach their own deaths. We can help them have a good death. We need to be more consistent in asking our patients and their families to think about how they want to die. While there is no one right way, most people say they would prefer to die at home. Yet two thirds die outside the home. This is a problem, and we physicians can help solve it. We need to do a better job of advance care planning with our patients. Doing so makes it more likely their wishes will be honored. A good death is a beautiful culmination of a life well lived. While there are no guarantees, physicians can help give our patients a better chance at reaching this goal.
Richard Fleming, MD