She was worried. She had lost 20 pounds in a matter of months, her blood pressure was elevated and her blood sugars were out of control. Her worry had led her to walk into the office without an appointment. As abnormal blood sugar can be dangerous in the short term (especially if it is low) this was what I focused on first.
“What have your blood sugars been?” I asked.
“I don’t know, they have been all over the place,” she replied.
“Do you have the numbers with you? Did you write them down?” I asked, hoping for some data I could rely on.
“I don’t have them with me, I left them at home,” was the discouraging answer.
The remainder of the visit was even more discouraging, which did not surprise me. I knew her answers would be unreliable. I had diagnosed her with early dementia months earlier. At that time I had my staff call her son and ask him to come for the next visit. That visit had occurred a month before the day she walked in without an appointment. At that time I shared with them that I did not feel it was safe for her to live alone any longer. I told her son the she had not remembered to get blood tests done ordered a month prior and that it seemed her forgetfulness was worsening. Since she was a on over 10 medications for nearly as many diagnosis, I was very concerned about her safety. She clearly needed help.
When she walked in worried about her blood sugars I had not heard anything from either her or her son for over three weeks. The blood tests had still not been done, so I was in the dark about her long term diabetic control, kidney function, thyroid levels and blood chemistry. All I had to go on was what she told me and that was completely unreliable. She was also still living alone.
She was truly concerned and worried about her blood sugars and I felt I needed to communicate that I wanted to help her but I needed more information. I told her I could not make any changes to her medical treatment because I could not be certain that she was taking all of the medications as prescribed. I did not know what changes to make because I did not know that her current status was.
I gave her instructions and wrote them down as simply as I could. I told her to get the blood work done in the morning and then to return to the office two days later. I asked her to bring her medication bottles and her blood sugar measurements when she came. I stressed the importance of each instruction as clearly as I could. She had an elderly friend with her and I stressed it with her as well. After she left I had the office call the son so I could share my concerns with him. They reached his voice mail but left a message asking him to call us back right away.
A week later she called the office. The blood work had still not been done and she had not come in for the follow up visit. Her son had not called us back either. This was disappointing but not surprising. What was surprising was the reason she gave to the receptionist for not coming back- “I know Dr. Barrett never wants to see me again.”
It seemed her memory was worse than I thought! Apparently my words that "I can't treat you without more information" had been remembered as "I can't treat you."
We tried again to reach her son. He did not return our calls, but his wife did. Unfortunately the patient had never given permission to discuss her care with anyone but her son, so I could not speak with her daughter-in-law. The staff told her to have her husband call as soon as possible. When 24 hours passed without a call I organized an impromptu office meeting to discuss what we could do to help her. I had one receptionist call the medical group to see if we could urgently send a social worker out to her home. My other receptionist, who had worked for years in a neurology office, suggested we call Adult Protective Services to see if they could help. “Do it!” Was my reply.
Within a few minutes I was on the phone with the APS case worker. I told her that my patient was a diabetic who lived alone, that I was worried about her taking her medications correctly, that she was demented and I was concerned for her safety. I told her that I had left a message for her son and had not heard back for a week. She said they would send someone out within a day. I hung up the phone thinking I had done all I could.
The following day I learned that that not everyone agreed with me.
Her son walked into the office the next morning, seething with anger. I was not in the office, so he proceeded to loudly tell the receptionist that I had abandoned his mother by telling her that I did not want to see her any longer. He said I had committed malpractice and that he was going to report me to the medical board. Not knowing what to do, the staff called me at home. I asked them to put him on the phone, hoping I could calm his anger. I attempted to explain the misunderstanding and my concern for his mother but his mind was made up. As far as he was concerned I was an arrogant and prideful doctor who had abandoned his mom. After over 10 minutes on the phone and multiple insults and accusations I gave up, finally telling him that his anger did not change the fact that I thought his mother was a wonderful lady and I was concerned about her. He made it clear that I would never see his mother again and hung up the phone.
Although they had dismissed me as their physician I made several phone calls over the next few days making sure that the social worker made it to the home and that her new doctor would see her as soon as possible. I made the calls with a great deal of sadness.
I wish I could say her son's words did not effect me but they did. On several occasions in the days that followed I found myself replaying events in my mind, wondering if there was anything I could have done differently or better. While I do not know what I could have done to better resolve this patient's situation I have gained a greater understanding of the importance of supportive and accepting families in the care of those with dementia, and of how denial can complicate matters.
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