>She was 36, by far the youngest in the assisted living facility. She was everybody’s “pet” driving her motor chair in a zig-zag path down the corridor, stopping to personally greet each old woman or man along the way. I met with her and her husband. She laughed brashly, smiled charmingly, and showed a vital interest in, well, everything. After he left, she told me, He has a girlfriend. That’s ok, she said. I have a boyfriend here too. She was kidding. She had a wry sense of humor.
She had the bad luck of a rapidly progressive case of multiple sclerosis. She had moved into the assisted living facility about 12 months before, at a time when the decision to pay for the level of care she needed was more affordable than bringing full time care into the home. And so, this couple lived separately, consuming more than 50% of his salary for her care. I had been asked to visit her because, in addition to the MS, she had a cardiomyopathy–a weakness of her heart muscle–that had required placement of a pacemaker about 10 years prior. At her last pacemaker checkup, she was told that she would need to have it replaced in the next few months–the battery was nearing its end of life. And if I don’t replace it? she had asked.
By the time I met with her, her mind was set, this was not a “counseling” session, she told me firmly, she did not need to discuss the decision itself. Her mind was made up. Her husband too felt that her decision was solid, well considered, and one that we would have to respect. It was not what he wanted, but he accepted that what she wanted mattered most. She had spoken to her cardiologist. She had talked to her primary care doctor. They were reluctantly in agreement that she had the right to make this decision, although they had each tried, in their own way to talk her out of it. She told me that she had given this plenty of thought. She said that this was not depression speaking, it was very much what she thought was the best path for her. In fact, no one thought she was depressed. There was nothing really complex to discuss.
She did have questions. What will happen? How long will it take? Could we keep her comfortable? Could she die here, where she now called home? What did she need to do to make sure that no one could override her decision?
She made the visit easy for me in that sense. I got her a bracelet with DNR/DNI engraved on it. She signed a living will, which we had witnessed and notarized. She and I both signed a Physician’s Orders for Life Sustaining Treatment (POLST) form clearly indicating her wishes. No CPR. No intubation. No tubes. I reviewed her advance directive and “do not hospitalize” order with the director of the facility and discussed how we could arrange end-of-life care there. I made copies of all of the forms and sent them to all of her doctors, placed a set in her facility record. She held the originals. I agreed to visit periodically and to order hospice care as soon as there was any sign of the pacemaker failing. For now, she would continue to live her life as fully as possible, given her disability. She expressed intense relief when these tasks were completed. I have more important things to do, she said.
She made the visit easy for me. In that sense. And she broke my heart.
“[We are] torn between the hope of living forever and the fear of never dying”
–Jose Saramago, in Death with Interruptions
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