I met Beatrice (not her real name) a little more than 2 years ago. She had just turned 90, and her daughter brought her in because she had been feeling a little more tired and short of breath lately. As she put it, she was having problems "getting going" in the morning. She had rarely been to a regular medical doctor, preferring homeopaths, in line with her beliefs as a Christian Scientist.
Up until a year before, she had been living for 19 years in Ojai, CA, 9 of them with her husband who passed away 10 years earlier of lung cancer. She had been active and doing yoga up until 1 year earlier when she fell and broke her arm. Ever since then, she had been living in an assisted living facility closer to her daughter. She had also been developing signs of Alzheimer's dementia over the past 4 years.
Beatrice was a pleasant and cheerful woman who acknowledged having some memory problems but kept repeating over and over again how “grateful” she was for her life so far. She proudly told how she was one of the first female bank tellers before she became a permanent homemaker. She also mentioned how throughout her life she never liked to take medicine or see doctors.
After examining her, I discovered that she had atrial fibrillation causing mild congestive heart failure, which was also the cause of her shortness of breath and fatigue. She also scored 13 out of 30 on her Mini-Mental State Exam, consistent with moderate dementia. Beatrice went home without any medications because her daughter wanted more time to think about what to do next. This first visit took 90 minutes.
After a series of e-mail communications and a follow up visit, we agreed to start Beatrice on some medication to help her breathe better. Over the next few months, she gradually improved with medication to the point where she was breathing comfortably again. Her daughter told me that while Beatrice couldn’t remember anything about what we had talked about, she did remember me and liked me.
I would see Beatrice several times for follow up over the next 12 months, and even though she couldn’t remember what she had for breakfast, each time she would smile and say how “grateful” she was for everything. That seemed to be the one thing she would never forget. She remained stable as far as her breathing but her dementia continued to worsen ever so slowly, and eventually she started having trouble with agitation and even remembering who her daughters were sometimes.
Unfortunately, this happens all too often with many elderly patients in this day and age. Even as you wonder if this is the kind of life they, or anyone, would want to have, it is often too hard to stop giving medications that you know are helping to keep someone alive.
In a typical busy doctor’s office, there just isn’t enough time to talk about what is really important to her or her family. It would just be assumed that we should just do our best to keep her heart from going into rapid A-fib and developing congestive heart failure, and to do otherwise would be unmerciful. And so, Beatrice would continue to take her Digoxin and Lasix, and her mind would continue to gradually wither away, losing bits and pieces of herself as time went on.
And eventually she would get a stroke and lose her ability to walk, speak or feed herself. Or she would fall trying to get out of bed in the middle of the night and break her hip. And she would end up bedridden and develop pressure ulcers on her fragile skin. And finally, if she didn't die of something else first, she would end up in a “persistent vegetative state”, her self-awareness gone, left with only a thin, frail body curled up in a nursing home bed, kept from malfunctioning further with well-intentioned medications, waiting to die.
That is, she would have if she had received care as usual.
Instead, I had long discussions with Beatrice’s two daughters that started 9 months ago, in person, by phone and by e-mail. We discussed the likely outcomes of continued treatment along with that of stopping treatment. We discussed adding medications to treat her agitation and anxiety and their potential side effects. We discussed what Beatrice valued in life, what her preferences would have been and what she would have chosen for herself, if she were able. We discussed their concerns that their mother not suffer.
After 4 months of discussion and reflection, her daughters decided that a palliative approach was what their mother would have wanted and started inquiries into hospice programs. A month later, she had enrolled with a hospice program, and I stopped directing her medical care, since the hospice program already had a physician.
Yesterday, I received an e-mail from Beatrice’s daughter saying that, after a few weeks of terminal agitation, her mother had passed away peacefully.
I’d like to think that Beatrice was grateful to go this way.
I'd be grateful if every primary care physician could be given the time and paid for the time to do the right thing for their elderly patients, rather than give "care as usual".