In 2006 I helped my Mother through the final stages of her cancer to her death; the weeks we spent in the hospital at the end of her life were degrading and something she didn’t deserve.
We were brought to a hospital other than the one her GP was associated with due to the ambulance being diverted by a dispatcher. We had no choice but to go where we were sent.
At this new hospital, my mother was forced to wait for 40 hours sharing a room with a naked man who seemed to be suffering from a mental disturbance and was getting as little help as she was.
Once in a hospital room, we were told that her multiple melanoma had become aggressive and that she was dying. My father and I discussed how to break the news to my mother with the doctor; we decided I’d take the lead.
We got back to her room just as the doctor, who was walking ahead of us said to her sternly “are you resigned to die?†those are his exact words. Both she and my father burst into tears.
The rest of the week was a nightmare during which my father and I had to work in shifts round the clock to defend my mother from ill-informed nurses who kept trying to make mom get up, talked to her as if she were senile, and kept trying to change non-existent diapers. We never got any information about her condition or the progress of her decline without digging for it with repetitive questions and sometimes resorting to camping in offices at the hospital. One nurse in particular dragged mom out of bed and we found the two of them hauling down the corridor to a washroom. The nurse was scolding my mother that she shouldn’t expect hotel service with regard to bed pans. When I got her away from the nurse and back into bed mom had the courage to try to make a joke; she said ‘they never tell you going out is such hard work!†I suggested we did it some other time, she said she wished we could. This was a day and a half before mom died.
At one point I realized that mom’s intravenous had been removed without orders by anyone and when I asked the nursing staff they told me it had been out for several days. I knew she hadn’t had an water orally so reckoned she was likely in distress – I wrote an affidavit that I made the nurses sign so that I had witnesses to when it was realized she’d had no fluids for a dangerous length of time. After that I learned that the doctor had been relieved and the hospital refused to cooperate with my efforts to keep him in touch with mom’s GP.
We could not, for some bureaucratic reason, transfer mom to her regular hospital so that she could have direct care from people who knew her. We finally got a spot in the hospital’s palliative ward where we found more compassion and she eventually died only three hours after I whispered to her that if it was too hard to keep fighting, it was OK to let go. Mom’s courage through all this derided the incompetence that had caused her and my father so much pain.
I came out of this experience with a renewed understanding of the value of a patient’s advocate. There was a patient’s advocate office in the hospital but they were basically powerless. A person in a hospital, even one that is characterized by professionalism and competence, needs someone to speak for them. For a patient in a hospital such as the one we were in, the need is dire.