Last October I lost my mother at the age of 88. Like most elderly people, both she and my father wanted to die at home–not in an acute care hospital bed. Indeed, throughout my political career senior advocates have supported legislation to create “durable powers of attorney” and “advance directives” for exactly this reason.
I remember a point in her gradual decline when we went to see her physician because she was having increased muscle pain. Lab work had been done to find the cause of this pain which was being treated with low dose steroids. One of the laboratory results that came back was a high erythrocyte sedimentation rate, a nonspecific indicator of inflammation. It was not just high, it was extremely high, and one of the possible reasons was an undetected cancer.
The workup to find out exactly what was going on would have been very invasive–including endoscopes, colonoscopies, and possibly a biopsy. My mother was not interested in any of these aggressive therapies because even if a tumor were discovered her question was “what were we going to do about it in a frail 88 year old woman?”
At this point my mother made a conscious distinction between “cure” and “care.” She was interested in being comfortable and enjoying whatever time she had left. She did not want to spend her remaining time in the hospital or recovering from various invasive diagnostic procedures.
She decided to forgo this extensive workup, at which point her doctor said: “OK, we’ll just check your lab work every few weeks and see how you do.” I asked, “Why?” There followed a silence in which I said, “If we keep checking the lab work on an 88 year old woman, we will keep finding abnormalities. And if we have already decided not to run them all down, why do the lab tests in the first place?”
So Mom went home and the quality of her life improved remarkably. She and my father had been “living around the lab”–around visits to the physician, around diagnostic studies; going down to get blood work drawn and then waiting to hear the results. What was the blood count, the sed rate, the coumadin level? What would this mean in terms of medications that had to be adjusted, added or subtracted?
In other words, the whole focus of her life had been centered on her illness, her disability and her aging. But then she let go of that part of her life she could not control–the fact that she was mortal and was getting older–and, instead, she started to focus on what she could control … the blessings and joys of her 65 year old marriage to my father.
My mother lived at home for another four months. She never went back to the physician’s office and was never admitted to the hospital. Fortunately, we had the resources to bring in caregivers–to help with ambulation, meals and housework–which made her desire to stay at home possible. When she eventually died of congestive heart failure, she was in her own bed, with my father beside her and her family around her. It was sad to be sure, but it was also what she wanted and that made it very caring and beautiful at the same time.
Medicare would have paid to have my mother’s ‘labs’ checked every few weeks. It also would have paid hundreds of thousands of dollars to hospitalize her for congestive heart failure or any number of other conditions for which she could have legitimately been diagnosed in the last six months of her life. And it would have paid for the ambulance to take here there.
But Medicare will not reimburse a provider to spend an hour with an elderly person explaining the difference between ‘care’ and ‘cure’; to discuss what they want the remainder of their life to be like; where they want to spend it; who they want to be involved and how that can best be accomplished; to explain the limitless number of things modern medicine can do ‘to you’ but not necessarily ‘for you.’ And Medicare will not pay $18 an hour for a caregiver to help you stay in your own home.
If we truly want to reform our health care system we need to move the debate beyond how much we spend. The real question that we need to ask related to Medicare is not “how do we protect this program” but, rather, “what are the real health and health care needs of an aging population and how do we best ensure that care is available and accessible?”
But even if the quality of life at life’s end is enhanced, we still will need to deal with the fear of “losing Medicare.” To help us with this and other challenges, please participate in our dialog. The best way to help is to join or start an Archimedes chapter in your community.
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