The prestigious medical journal, Archives of Internal Medicine, published a study last month showing that a significant portion of Medicare expenditures for people with advanced dementia is spent on aggressive treatments that could have little clinical benefit. Researchers found that 30 percent of Medicare expenditures for people with advanced dementia were for hospitalizations during their last year of life.
A few days after reading this research study, I visited a man caring for his wife, terminally ill with Alzheimer’s disease, at their suburban Chicago home. Ten years ago, at age 61, she began showing symptoms of her disease. She had tried desperately to hide her memory impairment from others. However, she had a high profile job and eventually was forced to take disability leave. For his part, the husband tried to deny the seriousness of her problems until she wandered away from home and got lost for many hours. He sought out the best medical care but after a couple of years, he realized the limits of medicine. He concluded that medicine might actually hasten her decline with unnecessary tests and ineffective treatments. He chose instead what one might call a “soft approach” to her disease.
He learned to accept her symptoms and create meaningful moments for her through simple, pleasurable activities. Instead of focusing on elusive medical treatments, he focused on giving her the best possible care. His goals were to make her happy and to give her the best quality of life. He also began to take care of himself, understanding that his own welfare affected her, for better or worse. He joined a church choir and played lots of golf. He downsized to a smaller, less expensive home. And he hired two caregivers who shared his goals for his wife. One of the caregivers, a compassionate woman in her 20s, was present during my visit. She happily recounted many ways they had found to connect with her over the years, despite progressive decline in her abilities.
The woman with Alzheimer’s disease was now bedridden. She had not spoken a word in more than a year. She had been enrolled in hospice for nearly two years, long after she was expected to die. Her breathing had become labored in recent days but measures were being taken to keep her comfortable. The husband said that no extraordinary steps would be taken to sustain her life. Admission to a hospital was not necessary. Long ago he had given up on aggressive medicine in favor of comfort care. He and the caregivers were at peace with this choice. He wished for her to die with dignity in the safety and comfort of their home. He got his wish just two days later.
Whether people with advanced dementia remain in their own home or reside in a care facility, it is possible for them to live and die in comfort. It takes a concerted effort on the part of many people to make this a reality. In this case, the husband had the courage to lead this great effort to its peaceful end. I was privileged to witness his love in action.
Daniel Kuhn, LCSW is Community Educator for Rainbow Hospice and Palliative Care, based in Park Ridge.