During the nearly five years that my mother was in assisted living and memory care facilities, I learned a lot about how hard it can be for patients in her position to get the end-of-life care they want. The default tends to be that the facility sends sick or injured residents to the emergency room, regardless of their wishes. As a retired emergency medicine physician, I can say confidently that most of the time, that’s the worst thing you can do.
In the ER, there may or may not be a POLST form with the patient; it’s even less likely that their advance directive came with them. The ER is chaotic, confusing and can leave disoriented patients unsupervised. It takes a strong advocate to say, “No, my loved one has said she doesn’t want this — we just want her to be kept comfortable. We don’t want all these interventions. We want to be there with her,” to prevent these unnecessary and even harmful trips to the hospital for people with dementia.
In my mother’s case, her wishes for her end-of-life care were honored because I knew what they were, and I stood firmly by them.
Mom’s passion was looking out for her community, be it through church or school or elsewhere in her small Wisconsin town. She and Dad visited people in the nursing home every Sunday after church. They held welcoming parties for newcomers, especially new school teachers. Even after my mom retired as the school secretary, she poured herself into raising money for the school through a huge development project. She was very giving, always smiling and laughing, fond of music and dancing and gatherings with family and friends.
When Mom was in her mid-80s, my sister and I noticed that she was getting somewhat forgetful and tended to repeat the same stories over and over, but we didn’t see how debilitated she really was. After my father died of congestive heart failure in April 2016, a friend of my parents came up to me and said, “You know your mother’s having trouble, don’t you? You know she can’t live alone.” They gave me several examples: Mom had been driving erratically, showing up at different places at inappropriate times, things like that. We had no idea. She had been getting by in large part because of the support of her community.
So we took her for testing, and it was clear she had dementia. Within three or four weeks of my father’s death, it had become plain that Mom would need to move to an assisted living facility closer to me in California.
In early 2017, Mom fell and broke some teeth and ended up having a five-hour dental procedure done. After that, she underwent a significant change for the worse. Now she started running away from her facility. One time I got a call from the Orange County sheriff’s department: “We’ve got your mother here; she’s on the I-5 on-ramp looking for a ride to Wisconsin.” After she escaped again despite wearing a proximity monitor, in May 2017 we moved her to a locked memory care unit in the Sacramento area.
Over the next two years, her memory worsened. She started sundowning — experiencing increased confusion and agitation in the late afternoon and evening. She fell and fractured her humerus, and when she had recovered from that, she started running away again. In 2018, we moved her to what would be her final home, a facility right down the street from me. This initiated a period of stability. She liked the new place a lot, with her nice room and excellent staff who worked well with her. I visited almost every evening, walking the block from my house and just sitting with her, looking at picture books and family photos with her, calming her during sundowning and watching TV until she fell asleep.
Then, in 2020, COVID-19 hit. The only visiting I was allowed to do was through the window, which was very frustrating to my mother. “Come in; why can’t you come in?” she would ask. I wasn’t able to regularly reorient her like I had been in our in-person visits. When that all went away, it wasn’t long before she didn’t recognize me much anymore. Thus began the more acute decline in her condition.
The final straw was Thanksgiving 2020. I pleaded with her facility to allow us to have her over to my house with just me and my wife, and thankfully they relented. At first, when the staff member brought her to the door, she said, “I don’t know these people.” But then I talked to her, and she seemed to recognize me, so we ate together and she had a good time.
That evening she returned to the facility. In the next few days, a staff member who had been exposed to COVID infected a number of people, including my mother.
I went down to southern California to be with my daughters for the rest of Thanksgiving week. When I hadn’t heard from Mom, I called the facility to check in. They said, “Oh yes, she got sick a couple of days ago, and we’re planning to send her to the hospital.” I said, “No, she’s got a no transport order. What’s going on?” They said, “Oh, she’s having trouble breathing. She’s not really responding; she’s not eating or drinking. So we’re not sure what to do.” I said, “Call hospice,” and I flew home the next morning.
Years earlier, my parents had created advance directives that specified they did not want to have their lives sustained by tube feeds or other mechanical interventions if there was no hope of survival otherwise. That was established and pretty clear to me and my sister. Yet even though my 91-year-old mother’s assisted living facility was aware that she had a “no transport without permission” order in place, they would have sent her to the emergency room if I hadn’t stopped them.
When I arrived, I gowned up and went into her room to assess her. She wasn’t responsive and was quite dehydrated. She was breathing hard; they already had her on oxygen.
I was able to be there at her bedside at the end, giving her comfort care, making sure she received her medications and was getting rotated. I got her clergyman to be on the phone with us to give her a final blessing. Any of the interventions that she had specified she didn’t want, she didn’t get. We were able to make the transition easy for her.
My experience with my mother only underlined the concern I had developed during my years as a practicing physician for patients like her. Often, it’s like they have no voice or say in the treatments they receive. But if they have had conversations about what they want with their loved ones and their regular doctors, then those people can be their advocates when they are unable to advocate for themselves.