This question came up recently at work with one of our "chronically critically ill" children. The patient is waiting for a heart transplant and is in severe heart failure. The patient has been on our unit for three months and on the transplant list for two months. The months prior when the patient was home sound like they were miserable according to the family. I believe it too since now this patient is being managed on maximal HF support including continuous diuresis, milrinone & dopamine and is still miserable. The patient was recently intubated for an infection but is extubated now and the doctors were pushing to wean the patients ativan.
My question is this. This patient is miserable. All day long. Wretching, gagging, thirsty but aspirates everything that goes in, irritable, restless, can't sleep, can't be awake, has very little quality of life. Family is at their wits end trying to keep their child entertained and comfortable and yet here we are taking away the ativan, which wasn't really doing anything anyways and keeping the patient in this miserable life. What about quality of life? I had been considering talking to our team about out hospitals palliative care team to see if they would have any recommendations for us but our doctors can't stand them so before I do that I wanted to hear what others had to say. Is this typical life for a two year old in heart failure? How can we manage these symptoms of discomfort better? Because lets be serious, every day without a transplant is one day closer to death. We cannot prevent that but don't we have an obligation to make these days as comfortable and manageable as possible?