It's never what you think it will be

I have the 'advanced directives' discussion with my patients every day in the office. What I usually hear is some variation of: "if I get to the point where my life is not worth living, I will not want to keep living". (Or, more actively, "I will have a plan for ending things"). They want to be certain that I understand.

What I have really come to understand is that the future never plays out exactly as you anticipate. The most definite, strongly held views today will be different in the future. Relationships change, unforeseen circumstances occur, life never follows a predictable path. The moment of decision so clearly anticipated in the abstract is never quite so definite in reality. The feeling of surety today, even when placed in legalese on the living will, is often quite ambiguous at the real moment. What seems to be a single point of decision is blurred and not completely clear. The definition of 'a life worth living' becomes a moving target.

I've begun to incorporate these thoughts into my discussions of living wills with patients. I've come to believe that the term 'living will' is not just a will that is made when one is living, but also a will that lives...that represents a process, not just an abstract statement of intent for a set of circumstances that may not happen. A conversation that is ongoing, not signed and sealed in the lawyer's/doctor's office.

My mother-in-law is one of strongest life forces I've known. Her mind is a tour de force. She has had 2 husbands unfortunate enough to develop Alzheimer's dementia. She has always said that if her mind goes, she will end her life. She is a member of the Hemlock Society. She's had a full tank of helium in her home for years, a stash of barbiturates in her freezer ready for 'the day'. At 93, lonely and with all of her friends and contemporaries dead, she met someone she knew 75 years ago. He, too, was a lonely life force with no living contemporaries. They are like the two last survivors on the island. Now 96, she worries that her mind is going. She has trouble remembering, and doing her beloved crossword puzzles. But the helium and barbiturates remain in the closet and freezer. She wants to spend each day, and each next day, with her companion.

My father had a severe stroke 3 months ago. His life has changed radically. He can no longer swallow and depends on a tube for nutrition and medication. Years ago we had the discussion I referenced above. I'm the doctor in the family. He wanted to be sure that I would not let him exist the way he is currently existing. But he since remarried. He fell deeply in love... perhaps the deepest of his entire life. His definition of a life worth living changed. Now, if he can awaken tomorrow and see Rosie, his wife, one more time, his life is worth living. If, 10 years ago, he could see the facts of his existence today, he would say 'No." Today, in the evening, Rosie gives him a kiss goodnight and says "See you in the morning", and he says:" I hope so".