Good Intentions Are Not Always Helpful
by Dr. Amanda Mullen,
Clinical Psychologist and PAC Mentor
Recently, my mother was hospitalized for several days for a medical condition. While she is not living with dementia, she was experiencing increased confusion due to her illness. I spent much of my time by her side, documenting instructions and feedback from her doctors, and reassuring her. When she was first admitted, I noticed that she had a roommate who I would come to know as Pat.
Pat was a petite woman who I eventually learned was in her early 90s. She was asleep when we arrived, but it was not long before she woke up and got out of bed to use the bathroom. That’s when the bed alarm started to screech, and nurses came from all directions to see what was happening. Pat was told to Get back in bed! You are going to fall! while she repeated with urgency, I have to use the bathroom! A few moments later, Pat fainted. The nurses were there to support her and get her back into bed. When she awoke, they explained to her that it was not safe for her to get out of bed on her own. I suspected that this was not the first time that Pat had heard these instructions, nor would it be the last.
As I sat by my mother’s side, I came to really like this roommate of ours. She had a great sense of humor, at times asking for a shot of vodka with her prune juice. She told stories about her big extended family to those who would listen. As I observed her interactions with the staff, I noticed that Pat was showing signs of brain change. Short-term memory was a challenge, and she clearly did not retain what the nurses had told her after they left the room. Doctors doing rounds would come to talk with her, and while she could recount the details of her fall (the story was the exact same every time), she could not tell them what had happened while she was in the hospital. She was scolded many times throughout the day for trying to get out of bed, and she informed whoever would listen that her doctors had told her that she could go home.
On the second morning of my mother’s stay, a nurse came to see Pat. The interaction went as follows:
Nurse: You are going to be discharged to a rehab facility this afternoon.
Pat: I am going home?
Nurse: No, you are going to a rehab facility.
Pat: Well, I have to get dressed and ready!
Nurse: No, you are not going until this afternoon. You can stay in bed for now.
For most hospital patients, the news of discharge is cause for celebration. There is a flurry of activity involving discussion of plans, discharge summaries, and signing of lots of paperwork. In Pat’s case, I am sure that the nurses, who had listened for days to how badly she wanted to leave, were thrilled to tell her about her upcoming discharge. Unfortunately, for Pat, this news seemed to send her into a spiral of anxiety.
When the nurse left the room, Pat immediately tried to get out of bed. I went over to her, and she told me that she had to get ready to go. Her daughter was going to arrive to pick her up to go home, and she wasn’t dressed yet. I told her that I would look into it, but meanwhile, her hospital gown was quite fashionable. We laughed, and she told me that whoever designed it had terrible taste. I told her that the nurse wanted her to stay put in bed for now, and she relaxed a bit. We talked some about her grandchildren, and eventually she settled back into bed.
It was clear that, due to Pat’s brain changes, she was unable to hold on to the details of what was happening. What she could hold on to was the sense of urgency that she was going somewhere, someone was coming to get her, and she needed to get ready. Throughout the rest of the morning, nurses, doctors, and discharge specialists cycled through to talk to Pat, each saying, I hear you are getting discharged! After each interaction, Pat became insistent that she needed to get up and get dressed, she attempted to get out of bed, and the nurses came rushing in to be sure she wouldn’t fall. It was eight more hours before Pat was transported to the rehab facility.
I wondered if the hospital staff had considered Pat’s cognitive state when they decided to inform her of her discharge with such advanced notice. Was this simply a routine protocol, or had they thought this through? By sharing this news with her, they repeatedly elicited the behavior that they were trying to prevent…getting out of bed. Pat had a terrible afternoon, filled with confusion and anxiety. The nurses spent loads of extra time responding to her each time she tried to get out of bed. I wondered what it would have been like for everyone if the staff had waited to tell her about the discharge until they were prepared to support her in getting dressed, organized, and on her way. Did Pat benefit from knowing the plan ahead of time, or did it do more harm than good? Perhaps a one size fits all approach to planning should be reconsidered for people living with brain change.