My mom just died in hospital hospice at Westerly Hospital. It was a horrible, horrible experience.
I will lead with the worst part. I spent the last 72 hours straight with my mom, on a chair next to her bed (I was with her before that as well, but was especially careful to stay with her towards the end). On the morning of her passing I saw that she had stopped breathing. I knew not to say anything since I have seen that hospitals want to hustle people out as fast as possible at that point. They do not care that there are studies showing that heart stoppage and brain stoppage are not the same at all. It can take days for brain cells to die. People who went into cardiac arrest and who were revived have had memories of the experience that lasted up to two hours after their heart stoppage.
So, after forty minutes, a nurse came in and checked her. She looked at me, and I nodded.
About fifteen minutes later the doctor came in; a woman in her 60s. She checked my mother's heart rate at turned to me and said "Your mother is dead."
I said to her, "Can we step outside the room and talk about this." She replied that there was no need to because my mother was dead. She said this LOUDLY. I told her that it was my preference, and also that there was a lot of data that people's brains still worked for a period after their heart stopped. She said NO, YOUR MOTHER IS DEAD. THERE ARE ONLY TWO PEOPLE IN THE ROOM NOW, YOU AND ME, BECAUSE YOUR MOTHER IS DEAD."
I handed her my smart phone and showed her the 2023 NYU Langone study on the persistence of brain function (and memory of brain function, after the person was revived) after heart death. She looked at it and said "I don't care about that, that is not how I practice medicine, that is not our system, YOUR MOTHER IS DEAD." She was very angry, and very loud.
She then left the room and I followed her out and continued the discussion with her in front of the staff at the nursing station. I pointed out that her view of medical reality was not even relevant; I was the daughter and I had made a request concerning talking in front of my mother and she did not honor it.
She then left and another doctor showed up. He was familiar with the Langone study. He still didn't think it meant that my mother needed more time in the room. I pointed out that the whole point of knowing about such studies is that they can be taken into account even before standard practice has changed. In any case, I managed to keep my mom's body in the room in the company of loving friends and relatives for the next four hours, and she did not have to hear some terrible person repeating loudly that she was dead while her brain was still functioning.
I have to wonder why that doctor was so committed to discussing my mom's death in front of her, even after I had repeatedly asked her not to. Why it mattered so much to her that heart death equalled brain death, and why it angered her so much to have this questioned.
The day before my mother died, I stepped out of the room and told the nurse who was administering my mother's meds that I was hoping to have the morphine given as needed rather than on a schedule, because it was drugging her out and keeping her from the possibility of recognizing friends and relatives. The nurse replied that that was the "doctor's order." I told her that that meant that I would like to talk with the doctor about it. She was affronted and said to me "I'm trying to work with you," and headed off.
A major point of hospice is that family members have input into this sort of thing. Also, it is not the role of nurses to "gate keep" medical decisions.
When I returned to my mom's room the head of nursing was there, and a social worker. The head of nursing told me that I was "interfering with" my mother's medical care. I was astounded and told him that I would be happy to discuss the matter with him if the conversation were recorded and on video. He went off and made phone calls (I could see him doing so in the distance) and came back and apologized. So, the authoritarian nurse had sicced the head of nursing and the social worker on me to bully me. The head of nursing and I then discussed the substance of the matter and came to an agreement about the timing of the morphine.
For the first two days in "hospital hospice" my mother was still very much enjoying food. She ate pudding cups and yogurt cups (the latter I had to buy her from the cafeteria) and little bits of chocolate. But if I had not been there she would not have gotten them. I asked a nurse and she told me that they would feed my mother if my mother asked them to. But they would not offer. They would just let her lie there, hungry, I feel terribly, terribly sorry for anyone who is in there who does not have a loved one to give them that kind of care.
There was still more that was really awful but word count here is limited. read more
