I completely agree with you. A little over a month ago, my brother was admitted to a hospital in Trenton, with the unexpected diagnosis of widely metastatic lung cancer. He was very weak, unable to provide even the least bit of care for himself, and was in a lot of pain. He needed help to move his legs, about every 15 or 20 minutes. Ringing the nurse call button often resulted in someone entering the room 30 minutes later, depending upon how busy they were. Yet, here they, too, questioned the advisability of one of us staying with him, stating we needed to get administrative clearance. On the day that I drove up there to be with him, his nurse thought I had not gotten advance permission, and would have to leave. I told her I was staying, and basically was prepared to physically fight with security if someone tried to make me leave.
My brother thought it was amusing, that "his sister, the doctor" was being treated like an ordinary human being. Any time that we suggested our desire to meet with the nurse manager, to discuss issues such as pain relief, etc, he asked us not to, as he was afraid the nursing staff would "take it out" on him.
That is something I hear A LOT. Even among the families of our pediatric patients. Somehow people feel they are at the mercy of the health care providers and don't want to point out how things could be better, because that will surely make things worse.
This is a journey we must all be on. Patients MUST DEMAND to be treated better, and those of us in a position to make health care better, more humane, and patient and family centered must do so.
My brother died after 20 days in the hospital. The last 2 days were spent in the in-patient hospice area, where family were welcomed, without question, and he died with 4 children and one daughter-in-law at his side. It was a wonderful way to die. We should make all of our patient care areas work like that.