Years ago, my family’s matriarch, Grammy Anne, lay in intensive care. The family was shocked and confused. Just last year this dignified, spunky 86 year-old had been taking college courses. Now, she was connected to tubes from every orifice, delirious and barely speaking; she had “crashed” after surgery successfully repaired an intestinal blockage.
A wise pulmonologist told us, “You all need to decide what you are trying to achieve here, because there is pretty much always something more we doctors can do, and that is not necessarily what your family member wants.”
We discussed what Grammy Anne would have wanted. We agreed that she would not want to live like this. We decided that we would not authorize any life-extending treatment if she did not improve. She did not. Her attending physician apparently did not understand us—he inserted a feeding tube—in direct contradiction to our wishes. Grammy spent the next four months in a nursing home, never once having a moment of calm or pleasure. We all felt terrible about her suffering, and outraged that her wishes were not respected.
In the years since this sad episode, I have learned much about medical treatment and decision-making. I wished that my family had help to advocate for Grammy Anne’s values and choices. I have learned that weighing burdens and benefits of treatment is a very individual matter, but one that belongs to the patient and family. I have accompanied thousands of elders and their families and helped them to make decisions based on their unique values and goals. And I have advocated, both systemically and individually, to ensure that their choices were respected.