Caring for friends and their family members can be a challenging tight rope to walk, and the degree of difficulty increases when dealing with end-of-life issues.
I've been caring for a friend's mother for several years now beginning with a major stroke that left her severely debilitated and in a long term care facility. Over the course of the past few years she's had other strokes, the occasional pneumonia, and urinary infections and with each illness becomes less and less responsive to the outside world.
As I've come to know the patient's husband we've talked about what our goals of care should be and starting to transition to more of a palliative approach, but here clearly hadn't reached the point where he was ready to let her disease take its natural course. We would start to get close agreeing on a comfort care approach and then she would develop a cough and fever and insist she be sent to the ER for IV fluids and antibitiotics. When I talked to my friend about his mother, he didn't want to see her suffer either, but couldn't bring himself to tell his father that it's time to let mom go.
Last week she spiked another fever and I ordered a chest x-ray, blood count, and urinalysis as had become our routine. It looked like the urine this time and after checking with the patient's husband I went ahead and started oral antibiotics. She didn't respond. I didn't want to have her transported to the ER, but I knew it's what her husband wanted, so reluctantly I did.
Yesterday I went back to the nursing home to check on the situation and was appalled to find an IV in her arm connected to a bag of fluids, a catheter in her bladder, and for the first time in years she winced in pain into a deeper fetal position as I would take her hand. This was the definition of medical futility. The only emotion I can describe is anger. How could we do this to this poor woman?
Her husband walked into the room and we sat down together at the bedside with his wife. I think he knew what I was going to tell him as he started to tear up before I said a word. I explained how I believed his wife was suffering and everything we were doing was contributing to it. From what I knew about his wife I didn't think this is what she would want. I put my arm on his shoulder and told him I didn't think his wife would want him to suffer like he is either. He knew I couldn't make her better, but I promised to try to make her more comfortable.
He knew it was time, but I needed to give him permission. He needed the doctor to tell him what he knew was the right thing to do. We disconnected the IV and I ordered liquid morphine for her pain. We agreed not to put her through another transport to a hospital. It was time to let this disease that she had lived with for years take its natural end.
I went over to my friend's house and sat down with him to tell him what his father and I had decided. His eyes welled up and he thanked me. He admitted that he needed to be told it was time too. He needed permission to let go too.