Lilly has a story to tell. It is her story. She sits comfortably in her hospital bed, with a nasal cannula under her nose providing a steady stream of oxygen. She says she really does not need it now but is more comfortable with it. She straightens the hem of her hospital gown. She folds her hands and places them carefully on her lap. This diminutive, carefully groomed elderly woman, a widow for 7 years, likes to be presentable when she has a guest.


 “Please sit down,” she says, pointing to the chair. She would be no more inviting if we were in her own living room.
 “You’re in the hospital. What happened?”
 “Heart problems”, she says. “Heart failure. I’ve been sick for years. I’m old, my heart is old. When it gets bad I have to struggle to breathe.”
 “Is that what happened this time?”
 “I didn’t know it was happening this time,” she says with some surprise. “I am very active. I go out every day, I do my shopping, cooking. I like to cook. I was walking. It started. The hill is very steep from the avenue to my house so I made nothing of it. Out of breath. I took my time, rested and then walked again. It was also hard for me to walk up the four flights to my apartment. I stopped every few steps. So what? An old lady getting tired and out of breath. Nothing new about that. I missed all the signs. Sonya didn’t. She’s a neighbour and when she saw me she said what she was seeing wasn’t right. I don’t know what she saw. I do know how I felt. I was getting sick again.
 I remember the ambulance, the siren, having a real hard time getting air in, and then nothing until I heard my nephew’s voice through the fog from all the medicine they gave me. They said I was trying to pull out the tube that connected me to the respirator. They tell me I had been in the ICU for 2 days when Anthony finally got to the hospital.”

Senior medical residents care for critically ill patients in intensive care units. They are always there; there is always something to do. The tempo lessens on weekends and especially at night when senior doctors are no longer making rounds and families have gone home. It is Saturday evening, a quiet time, and Lilly, who is in the unit on a ventilator and receiving intravenous drugs to get her out of heart failure, is starting to respond to the treatment. She is restless, pulling at her lines. She motions to the hard plastic tube in her mouth. She wants it out. She reaches for it. She will do it herself. The doctor grabs her hand. The nurse increases the sedation. She needs to be on the respirator until the heart failure, congestive heart failure, is under control. It is only then that she can safely be removed from the machine.

Lilly’s nephew appears at the hospital at 9:30 in the evening. He insists that he be brought to his aunt even though visiting hours are over. She is critically ill, in intensive care, he has just arrived from Texas, where he lives, and has to see his aunt now.

Anthony, in his mid-50s, with a burly chest, thick neck and a working man’s hands, bursts into the intensive care unit, an envelope in hand, and asks to see his aunt. It takes no more than a second before he demands that the doctor remove the ventilator. “I am my aunt’s proxy,” he says, as he removes the document from the envelope and hands it to the doctor.

What to do? It is 21:30 on a Saturday and this man is asking the medical resident to do something that may immediately result in a patient’s death. Calls are made, first to the consultant for the hospital’s ethics committee and then to the patient’s private doctor. Nothing should be done tonight. Sedation may be the cause of the patient’s current lack of capacity. When she comes off it she may be able to make her own decisions. It is premature for the proxy to make decisions. And if there comes a time when we turn to the proxy, he will have to give informed consent and that means a discussion with Lilly’s private doctor. Nothing will happen before the morning, when the doctor will be in the hospital and will examine her.

Anthony will have none of this. The moment he knew his aunt was in hospital he made arrangements to be there. It was his promise to Lilly. “You will be so far away,” she said when he told her he was moving to Texas. “What if I get sick?” was her worry, now that she was 80-years-old and was starting to have problems with her heart. “Nothing is so far that I can’t be here in a day.” This was what he promised his aunt and he has her proxy in his hand. He tells the doctors that he knows what she wants and what he is seeing in the intensive care unit is not it. Tomorrow is not soon enough. Do it now. Remove the ventilator now. He knows the law, he knows Lilly’s rights and the rights she conveyed to him by completing a health proxy. “No is not an answer.” He is a nurse, he says, his sister works for an agency that accredits hospitals, we are wrong, we will be held accountable, he wants to speak to whoever is in charge!

Saturday, now 23:00, visitors have long since gone, and there are critically ill patients needing constant care; there is neither time nor patience for Anthony, who will not relent. The nursing supervisor and the night administrator, the people in the hospital who are in charge, and the administrators they have paged when an issue must be dealt with immediately hear the story and support the decision; the patient will not be removed from the respirator at this time. At 02:00 Anthony leaves the building. He is enraged that his aunt’s wishes are being ignored. He will come back on Sunday and get done what should have been done tonight.

Lilly, in her hospital bed, becomes more animated as she retells the drama of Saturday night. “I remember,” she says, “that my nephew came and told them to what to do and when they wouldn’t, he told them a thing or two. Do I know what it was about? Of course. That machine, he wanted them to take the damn thing off.”


 “The doctor took the tube out on Sunday. He came, asked me questions and then asked the same questions again and when I wouldn’t give him any other answer, he finally turned off the machine and took the tube out. What questions? Stupid questions. Do I know where I am and why I’m here? Do I know what the machine does? Do I know what could happen without it? Do I understand that I could die without it? Yes, yes and yes. It’s my heart that has ten percent left that works, not my brain.”
 “Well, you’ve made it. No machine and you are alive ”
 “So I am.”
 “What next?”
 “A little rehab and then I want to go back home. I’ll need someone to help me with shopping and taking care of the apartment.”
 “It seems like you’re very much in this world. I’ve enjoyed speaking to you, and it seems you with me.”
 “Absolutely.”
 “So the respirator was a treatment, not something you’ll need forever. Your doctor thought you needed the help breathing until the medicine got you out of heart failure. What do you want the doctor to do the next time you run in trouble?”
 “The same thing I wanted him to this time.”
 “And that is?”
 “I don’t want to be on the respirator.”
 “But look at you Lilly. You are still so much alive and all it took was three days on the machine.”
 “I love life, and I’m not afraid of death. Ten percent, that’s all that’s left of a very old and sick heart. No respirators. This will happen again and the next time it happens, they can give me everything but don’t put me on anything. My time is coming and that will be the end. I’m ready for it and you and the doctors have to be ready for it too.”