Author: This touching story was written by a St. Cloud doctor about her own father. She has given us permission to share her words.
A Mild Hip Fracture
My father recently entered the health care system after a mild hip fracture. He was very healthy and on no medication except for medication for Parkinson’s. He had been diagnosed with mild cognitive decline a few months prior to the fracture. He had been reading books and watching movies. He enjoyed time with friends and family.
Health Care System Drastically Failed Him
Our health care system drastically failed him as a person with dementia. He was very healthy for an 82-year-old and the surgery and rehab went great. However, he decided to give up on life two months after the fracture as a result of the follow up maltreatment from the health care system he entered.
The very first night after being admitted with the fracture, he did not want treatment. He was a consenting adult at this point. He was forced into restraints and drugged with sedating meds. The hospital did not attempt to contact or let his family know that this was happening, and he was unable to figure out how to contact us. He had no advocate.
The family was given no option and did not even see the orthopedic surgeon or anesthesia to discuss options until moments just before the surgery. An advocate for him could have let us know about options safer for him.
He a had short period of post-operative confusion common in older hip fracture patients. Apparently, he was pulling on monitor wires that we felt to be unnecessary if his DNR had been properly reviewed on his admission. Again, an advocate for him could have prevented this unnecessary monitoring. Instead of evaluation for any other options or even a visit by the person ordering them, he was again placed in restraints. His arms and his legs were also tied down by booties. There are about 10 other options at this point instead of tying someone down, and none were even tried. No further evaluation was done for 24 hours. Even though he was awake and no longer pulling after an hour, he was kept in restraints. After about 10 hours of being awake and restrained for no reason he became very upset and even though my mother begged to have them removed and was watching him constantly, they were not removed. The nurses told my mother it was, “doctor’s orders”, when in fact it is policy that they should take them off when not needed and they had 100 percent control. My parents could have really used an advocate at this point. After this treatment, he was constantly agitated and had periods of confusion where he thought people and police were out to get him. I will never forget the painful wail I heard coming from my father when the nurses were placing compression booties on his feet and he thought they were trying to tie him up again a few days later.
He had a prolonged stay in the hospital because of his new agitation from the maltreatment. He went to a hospice house where for the first time he had advocates and felt safe. He was there a week for respite and he felt safe there without agitation in a place of caring nurses.
He then went to a rehab facility to get stronger. Again, this was complicated by his agitated state from the original maltreatment and mismanagement. He never again read books or watched movies.
He went home for a while. He was too weak after a few weeks for my mother to care for him and entered a new memory care unit with poorly trained staff.
No Communication Among Providers
He was in the same health care system the whole time. However, none of the providers communicated with one another nor could they see each other’s notes or just did not bother to. Each one tried something to help him, but no one knew what had been tried or what did not work the previous time. An advocate to manage communication between providers and with knowledge about these situations and medications may have prevented his early death. His family tried advocating many times but with each provider starting over, it was not effective.
Advocacy Needed for Dementia Patients
Advocacy for dementia patients is so important. Clearly the dementia care system in St. Cloud is either not knowledgeable or just doesn’t care.
The very first person to advocate for my father was a hospice nurse. Hospice should not have to be the first person to help a dementia patient that enters the health care system.
My father was also mistreated in the emergency room. He had been unable to walk since his surgery. He had one of his episodes of confusion and agitation which usually lasted about 10-20 minutes. His family dealt with these episodes of maltreatment fear by talking to him about past enjoyable times to distract him. The inexperienced aid in the memory care unit did not know what to do so he called the ambulance. The episode was over by the time my father reached the emergency room and he was calm. Despite this, he was held in a room near psychotic patients screaming and security people with guns. For a person so traumatized by his initial treatment at the hospital, this was hell. This environment for this type of patient was completely inappropriate. He sat there with my mother with no treatment or evaluation for 15 hours and was finally just brought back to the memory care unit. This was devastating for a man who had worked to improve the treatment of the vulnerable and mentally ill in institutions for the majority of his working career. After this event, he quit eating and drinking and died a few days later.
My father was an intelligent, kind and caring person who devoted his life to making the lives of others better. He worked for respectful treatment of the mentally ill and incarcerated. Our hope is that the system changes for better treatment and understanding of dementia patients as my father advocated to improve systems for others during his life.
Clearly a system that causes people to want to die is broken.