What rights do I have of inquiring with the Doctor? My Mum suffered dementia and a degree of parkinsonism. During the last couple of years, TIA's also made their appearance, although Mum being Mum, bounced back for the most part after each one. I checked with Mum, whom I spent 5+ hours with every day of her life at the Nursing Home, that she was ok within herself, that she hadn't had "enough". Each time she told me she wanted to live. Even to the very last (she passed away on 6th June 2016), she said she wanted to live. To outsiders, quality of life would have been low. To Mum, she obviously still enjoyed what she perceived to be quality of life. I think this latter is something that has been completely ignored, both by her attending GP and the Nursing Home staff (who of course have a major amount of power, given that it is THEIR reports that the Doctor, who spends a snapshot of 5 mins time on any given visit, relies).
I was not informed on the eventful day the Doctor completely changed her drug prescriptions. I was at the Home, but my time was consumed with meetings (battles) to advocate on day-to-day care issues. My sister was there. She had joined in on a Court Case by the Home against me, seeking to ban me from visiting Mum. That's a whole other story involving lies on the part of the home, bullying by the home, twisted truths and exaggerations. But that's aside for the purpose of my post here, save that my sister 'won' the role of sole Medical Power of Attorney, something that if I'd contested (and I had good grounds to) the Home would have pursued its battle to ban me from visiting Mum - it was my fear for Mum that had me backing off there.
Suffice to say that neither the Doctor nor my sister informed me of any particular event that day that had Mum's drug regime complete changed to Midazolam and Morphine (injections).
I saw that Mum was 'different'. I expressed my concern to an RN who said "didn't your sister tell you? Your Mum's in palliative!" Mum was able to speak to me the next day and she could understand what I said to her. I saw that speech was not easy for her and we agreed on a signal of eye blinks for "yes" and "no" in the event of times when she might not be able to speak (thinking ahead of time as at that time I had no idea where this was heading). She said that day "what's the matter with me?" (wondering why all of a sudden, the throngs of visitors, grandkids - who hadn't visited before, or very rarely, had all bundled in). So even Mum didn't feel anything was the matter, that there should have been change. She wanted still, to live. I told the Doctors, Nurses, executive Nursing Home staff, my siblings of this. I told them I have recordings of Mum expressing the will to live. I begged them to give her a chance, even just to let Mum decide when she'd had enough. But no one listened.
By the next day, Mum's speech ability had deteriorated. We used the blinking signals and I was able to communicate with her a bit that way.
A week later, Mum passed away. I had stayed with her in the last days and nights and I was with her when she passed. She'd awoken, distressed and afraid. I had been holding her hand all this while before, as she slept and as her breathing laboured. I sensed her and turned - she was looking, making eye contact with me. She was in complete respiratory arrest. I held her, spoke with her, and she passed.
Mum didn't have anything wrong with any of her organs, save for very mild deterioration in kidney function. She was otherwise very healthy. She didn't have breathing issues before all this began.
Is this a case for coronary? I do believe the drugs used contributed to Mum's death, a death she wasn't ready for, not psychologically prepared, and didn't think necessary. Her time was near - I knew that, sensed it, saw it. But this was brought on suddenly and was too soon for her.
Do I have the right to ask for a copy of the Doctor's report made on that day that he changed Mum's drug regime?
I chose "Elder Law" as the topic for this post. But it could go to "Elder Abuse", depending on the real truth of this story. Given events that have occurred at the hands of the Nursing Home staff, Elder Abuse could be relevant.
Once, some years ago now, I was happy to go over the records with the sister of a sweet little girl with a bad mitochondrial disorder who we had taken care of at my hospital; the mom had given permission and asked me, because she really needed to know that things had been done right for her, and was able to show her they had been. It was an unusual thing to agree to at the time but I was very glad to do it. I'm not sure what would happen if you asked someone to go over records with you now - you can always ask. But, you do have to be prepared to learn that Mum was not in such good health as you are thinking she was - "multiple TIAs" often add up to vascular dementia and are very typically associated with heart and peripheral vascular disease as well. Her not wanting to die and your not wanting her to die could not have kept her alive forever, as deeply as we all would wish for our loved ones.
I was also with my mom when she passed and it was hard, but I hope it was a blessing to her - she had told me she did not want to die alone. I think you did your best and your devotion made a difficult time a little better.
Somebody has to make medical decisions. In your mother's situation the person who had the authority to make the decisions was your sister.
You sister, the doctors, and the staff, had no obligation to inform you of the medical decisions being made. (If you were my sister, I would have told you, but obviously your family and my family are quite different.)
Your mother had fatal conditions. Dementia is terminal. It is terminal whether the person who has it wants to continue to live or not. The medical staff and the person authorized to make medical decisions decided that the dying process was starting and it was time to activate palliative care.
As to what rights you have, that is best answered by an attorney. Are you considering a malpractice suit? An experienced attorney can advise you about your chances regarding that.
"Mum didn't have anything wrong with any of her organs, save for very mild deterioration in kidney function. She was otherwise very healthy. She didn't have breathing issues before all this began." Mom had something severely wrong with a highly critical organ -- her brain. The most common official cause of death in dementia is bronchopneumonia. Even if they did not have breathing difficulties before the final stage, at the end the brain could no longer control their breathing.
What will you gain from all this turmoil? You say yourself your mother's time was near. You can't change anything that was done. You've already lost court cases regarding your mother's care. Do you really want to drag this out?
How wonderful you were able to be with her at the end, and to spend so much time with her. Cherish that.
Both Mum's attending GP and also Palliative Care (who came in late in the piece) confirmed Mum's organs were healthy - this is something that the GP often commented on with surprise, given her age.
Although it might sound like it, no, it was not me who was clinging to her life. In fact, it was hard on me for all that I gave and endured during the course of her last years of life in the Nursing Home. Lowered income; social life limited. Not that I'm complaining - I'm darned glad and proud I gave what I gave.
I guess I'd like closure to knowing what REALLY happened on that day. Mum may have had another TIA like she has before. I'd like an answer as to why 24 hours wasn't given to see what "bounce-back" there would be. And, assuming it was a TIA, there was bounce-back (despite the drugs introduced). This was evident to me 24 hours later.
I merely advocated for her. I'm the only one who truly did. I'm mostly filled with sorrow at the fact that Mum wanted to try, but that she wasn't given the chance to try, to know, to accept. Even palliative care team said "she wants to go psychologically, but the body isn't yet willing". That's the point - Mum's wishes were ignored. Dignity of choice denied. Mum wasn't psychologically ready. And to me, that's just plain cruel.
No - I don't plan on a malpractice suit. But I have witnessed many atrocities that goes down at Nursing Homes. Wrong, misleading reports that Doctors rely on and upon which they determine what drugs to give. Sometimes when I know myself that drugs are not necessary. What will I gain from all this turmoil? I want to know the truth. Was the respiratory arrest solely the side-effect of the Midazolam?
Yes - I lost court cases to my siblings. Based on lies. Because the Nursing Home didn't like that I got to see what I saw. Speaking to an RN on a medication error, she said "much worse things than that occur and get swept under the carpet".
What I want is a greater transparency all round.