I had been asked to see a new patient, a 99-year-old resident of the board and care unit of the nursing home. She was a retired high school physics teacher whose eyes and mind were still sharp. Her physician had retired. She had interviewed five physicians before deciding on our practice group. (One of the physicians interviewed had mistakenly addressed her by her first name, rather than Miss S. as she had preferred. She asked him to leave immediately!)
At the end of my first visit, I had asked her to think about the kind of care she wanted to receive at this time of her life. What were her values and her goals for care? If she were to become quite ill, how aggressively would she want us to pursue symptoms and treat disease? I gave her time to think about it and explained that we could discuss this on my next visit.
When I arrived the next month, she asked me to retrieve the list that was carefully placed on her dresser. The cryptic five phrases were numbered. She glanced at these notes as she explained each of her wishes to me. "First of all," she said, "If I were to be unable to feed myself, I would want to be fed here in my room. It is so undignified and distressing to see these poor souls in the dining room with food being shoveled into their mouths. I don't need people to see me like that." She paused and considered me carefully before she continued. "Secondly, I would like die here in my room. I know that they want us to move upstairs (to the skilled unit) to do that, but I've been in this room for 10 years. It is my home now. I would like to die at home." She paused again, as if to weigh my reaction, or determine if I would protest at the impossibility of these requests.
She continued slowly through the remainder of her list. All of the items dealt with issues of comfort and maintaining dignity. None of her listings gave viewpoints on CPR, antibiotics, hospitalization, or tube feedings. She related to me that she recognized we would use our good judgment as to what would be best for her in those areas. Looking at me closely she said, "I know that you would always discuss things with me first."
She died a year later, in her room on board and care, of chronic lymphocytic leukemia. For the last 3 months of her Ufe she was fed meals in her room. Hospice and friends filled in some of the gaps in the nursing care available on the board and care area. It was no simple task trying to fulfill her advanced directives. But she was able to die with the dignity she had so treasured.
Sometimes in our efforts to complete the line items on the chart or form (whether someone wants CPR, hospitalization, or tube feedings) we miss the opportunity to find out what older adults value or treasure at the end of life. Many of the nursing homes residents I see are not the articulate, thoughtful person I found in Miss S. She spoke of her wishes from her heart and taught me an important lesson about true advanced directives for health care.