This post is about another study, my friends, but this one is more personal for me. A report in the February 25 issue of Archives of Internal Medicine titled “Study examines antibiotic use among nursing home patients with advanced dementia,” reminds me of a situation with my mother-in-law.
Alice was in a very good nursing home and flourishing. Before she was admitted, her life in her condominium - no matter how much attention and care we gave her - had become unsustainable. She was afraid and paranoid. She couldn’t look out the windows because she imagined bad things, so she kept her shades drawn all day. She was even afraid to retrieve her newspaper from the hallway. She wouldn’t go out.
Once she entered Rosewood, she blossomed. It was like she remembered she was an individual. She felt safe. She started playing the piano again. I visited every day, but she also made friends and things were good all around. Then she got pneumonia.
Regular care wasn’t pulling her out of the illness. Normal antibiotics didn’t work. The doctors had one more big gun. It was a series of five shots of a powerful antibiotic saved for these cases. The doctor had ordered this series and she had been given one shot by the time they got in touch with us. I had no one to ask, and said I supposed that was the best approach. Well, it worked. Sort of.
Alice came out of the pneumonia, but never returned to her pre-pneumonia state. Mentally and physically she had declined to the point of no return. She lived two more years, but her quality of life was so diminished that I always wondered if, though well-meaning, giving her that last round of antibiotics was the right decision.
In previous times, pneumonia was called “the old people’s friend.” People are going to die of something. There are worse ways to die than from pneumonia. Yet, we are programmed to cure people. That is why, even in the last weeks of life for a person with dementia or other severe illness, the procedure is often to keep them going with antibiotics.
We now know that over use of antibiotics has become a huge problem for us all, and is putting even healthy people at risk. The report about the study mentioned above says: “Antibiotics appear to be frequently prescribed to individuals with advanced dementia in nursing homes, especially in the two weeks before death.”
The report goes on to quote statistics. Then comes this quote: “This extensive use of antimicrobials and pattern of antimicrobial management in advanced dementia raises concerns not only with respect to individual treatment burden near the end of life but also with respect to the development and spread of antimicrobial resistance in the nursing home setting,” The results support “the development of programs and guidelines designed to reduce the use of antimicrobial agents in advanced dementia.”
There is an editorial comment at the end of the report that stresses what I, myself, believe. Antibiotics should not be “categorically” denied to “the severely demented elderly,” or even limited. However, their use should be determined on a patient by patient basis, and balanced as they would other decisions about treatment such as “resuscitation and major surgery.”
Ultimately, it’s about the individual, his and her family, and the quality of life the person will have if he or she should survive a few more days, weeks or months. Even though Alice lived two more years, I still wonder if we did her a favor. Maybe just keeping her comfortable while the pneumonia took her would have been kinder.
I’m not judging anyone, including myself, about the decision made. It was made with love. She was a wonderful, kind, loving person. We wanted the best for her. What haunts me, at times, is that she was kept from a peaceful, natural death to live two additional, difficult years. Was this right? We certainly meant well. Once done, you can’t go back. But I do question the decision.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.