At a glance, Mrs. Brown did not look so bad. Something about her face seemed odd, but the breathing tube distracted from that. Her body had no open wounds or oozing punctures. It was not blown up with fluids and there was no foul smell. Everything looked normal, but the first touch told a different story.
I touched her wrist to feel her pulse. It was like touching a piece of wood. Mrs. Brown had advanced sclera-derma, a progressive disease that causes the gradual thickening of the skin. It was as if she were made of wax – frozen fingers, elbows, knees. There could not have been much blood circulation. I do not know how the tissues remained intact. I looked more closely at her face. It was as if she was wearing a mask or even as if she had been dead for a couple of days already. Her lips were dry and leathery, her cheeks flat, frozen and tight. The disease attacks the internal organs too, thickening, stiffening. Mrs. Brown could no longer breathe on her own and was therefore in the MICU for ventilator management. She was fading fast and was on IV pressors to keep her heart beating.
As I took care of her through the day, the opinions were all equivocal. She would not last long; hours to days. The family took everything in, nodding quietly. I explained the basics of the ventilator to them, letting them know the implications. Her brother listened intently, but seemed to be drawing his own conclusions inside.
As I left the hospital at the end of my shift, I met the brother again in the parking lot. “Is she getting better?” he asked. After all that had been explained to him, I was surprised at the question. I told him gently that she was still declining. “It is really not too soon to start thinking about when you might want to say enough is enough.” The brother thanked me politely and headed back into the hospital. I went home feeling the family’s strangeness was deeper than I had first thought.
The next day in group report we heard that Mrs. Brown’s condition had continued to deteriorate through the night. Her final code was expected sometime during the next shift. I requested the assignment again. As I approached her room I heard an exchange between the night nurse and the resident. “She is not oxygenating. You are not going to be able to do anything for her,” said the nurse. “But the pulse-ox is reading 98%,” protested the resident. “Listen, I can make it read whatever you want it to,” replied the nurse (he had presumably rigged it to read high so that he would not have to listen to alarms all night. You could not really get a proper pulse-ox reading on Mrs. Brown).
A little later, another resident called the family. “I really feel that all we are doing is prolonging her suffering now. Please let us stop.” I have never heard a resident be so direct, before or since, but the call ended with the resident frustrated and disturbed. “I am sorry, but we cannot do that,” was all she could get out of them. I have seen a devout catholic woman with brain cancer spend her last months in a deep coma while the family refused to withdraw care out of religious conviction, but this was something else. This Mrs. Brown’s family seemed to believe that she was going to get better somehow. I contemplated and in my mind saw the family sitting on Sunday in church as the minister went on about God’s miracles and Mrs. Brown. It is all speculation of course, but I do not have another explanation.
On rounds the doctors discussed Mrs. Brown’s predicament. There was nothing more to do. The family was not coming. When the time came to code her we would push epi and atropine to show a response, but we would not do more than that. It was so clearly hopeless; there was not much need to make a show.
Mrs. Brown must have heard them somehow. As the doctors moved on to the next patient, Mrs. Brown’s heart stopped. Maybe she was waiting for her family to show up and gave up when she heard they were not coming. They did not come after she died either. The resident called the family to give them the news. They hung up on her. A few minutes later they called me to ask about her condition. “Mrs. Brown has expired.” (CLICK). She let them down I suppose.
We tagged and bagged the body and pushed it on the stretcher through the old tunnel to the old elevator and rode up to the 11th floor - the morgue, or as we liked to call it, the MICU annex.