Mom passed 5/26/20 -hospice in-patient in hospital - too weak to move.
Directives declined artificial nutrition and hydration, DNR, pain meds as needed if it it shortened life...
Requested medical records so I could better understand diagnosis, hospice referral/decision/ death process...( once comfort care was started - all meds stopped..no eating and drinking as within 1-2 days she was semi or fully unconscious due to morphine / 2 occasional doses of haldol and systems shutting down...died 6 days after starting "comfort care". Records from hospital arrived...no dosage notes on morphine/haldol, other meds, etc..only list of routine meds prior to comfort care. I had been concerned that she was given too much morphine which caused sedation - thus no eating/drinking/medications, etc. ( though she was having swallowing issues and was hardly eating a week before hospital admission.). Medical summary from hospitalist noted ativan given. No one asked/told me anything about ativan ...to make matters worse, if it was administered, Mom was clearly allergic to it - hospital notes mention "no ativan" - negative reactions. When she had been given it before in the hospital, they had to call me to come stay with her and calm her down as she thought she was a dog chained in a cage and was crying,,etc...I calmed her down and stayed with her all night in a chair until it wore off.
Hospice should have known not to give Ativan - it was clearly in medical notes. I was never told - only told about morphine and 2 doses haldol over 6 days. How do I get the morphine/end-of-life meds used and dosage frequency? How can I find out if Ativan was administered w/o my permission if it is not in the records? Mom had looked with terror at me at one point and said, "Laura, help me!" I did not know what she wanted; did not know what the problem was ; could not help her --just hugged her and tried to calm her down. If they had given her Ativan, that explains it...
I am upset and angry - I was just starting to live with the fact that meds, etc. were stopped...and that the morphine kept her pretty much sedated for 5-6 days until death ( that had not been explained to me when comfort care was started...then they said if they stopped, she would be in excruciating pain...)
All I want is the truth - to understand what she was actually given - how much- doses-etc. Doctors won't review/discuss/answer any additional questions for me...
Advice - All I want is the knowledge to answer my questions and resolve what I watched happen. Pondering getting an attorney to help me get the records ... thanks for the input...Laura
I can understand your frustration and concern. You could contact an attorney just to get the records, but expect to spend several hundred dollars for the cost of copying. And if there were inaccurate doses or other issues, how would you handle that? I don't see grounds for a lawsuit, and you might only end up blaming yourself for not forcing the issue earlier.
I think there's another way to look at the situation. Your mother was in hospice, and it was expected that death was on the horizon. If erroneous doses were given, or other issues occurred, would that have prolonged her death? And if so, would she have been uncomfortable or suffered more? Would you have wanted that? For me the answers would be possibly yes, another possible yes, and no.
Ask yourself specifically why you feel the need to explore these issues, how it/they would have made a difference, and what your intentions are to do anything about the situation. I understand your concern, but I'm not sure you could benefit from getting answers, and I'm not even sure that stonewalling wouldn't occur and you'd be frustrated by resistance from the facility where she died.
And you may need help to let it go.
Getting the details of the medications given to your mother will not change her death. When my step dad was dying, he was on morphine and out of it. We did not worry about it, he was in distress without the medication. I did not double check on the nurses charting. He was also given another medication via eye drops, for when his breathing became wetter and more laboured.
Now the Ativan is a concern. Was a sign put up at her bed regarding allergies? I know at my local hospital large signs are put over a bed if a patient has an allergy. Although I am not allergic to it, I refuse Erythromycin, due to terrible side effects. I ensure there is a sign about that at my bed, in my wallet and on my wrist when I am in the hospital.
Contact the hospice and ask for a support group and you will find others in similar situations.