A Life Full of Value: Finding A Sense of Control Until the Very End

unnamed[5]Mrs. Koch was the retired Director of the IUPUI Office of Gerontology, a mother, and grandmother.  Her severe lung disease made it physically impossible to do much, but it could not hold her spirit and humor back.  By the time we met Mrs. Koch during her final hospital stay, she had already come to terms with the fact that she was reaching the end of her life, with no chance that her lungs would heal.  This was something that she seemed to accept without resignation or depression.  She possessed the hard earned perspective of one who had lived a long and beautiful life, a life that had clearly included ample self-reflection.  

When I met her, I was struck by a vibrancy undeterred by frequent drops in her oxygen level.   She received a very high flow of oxygen, but not unlike many medical therapies, the device which delivered it proved to be far less than perfect. For Mrs. Koch, it did not prevent profound attacks of shortness of breath. While barely keeping her oxygen levels normal, the device would not permit her to go home.   

Mrs. Koch’s days were filled with visits from doctors and other healthcare workers interspersed with visits from many family members and friends.  This would be a dizzying experience for the most social amongst us.  Meaningful moments mixed with moments of annoyance and pain, and perhaps some moments brought all three.  I witnessed suffering outweighed by her grace.  In the quiet of the nights, exhaustion would set in and she became especially prone to her oxygen drifting down to dangerous levels.  She quickly reached a point where death ceased to feel dangerous.  At one time in her life it was presumably a foe, but now it became a friend.  The danger she fought was not death, but the fear of suffocation in the transition.

We could not fix Mrs. Koch’s lungs or liberate her from medical technology.  Life would never return to normal, and she knew this before some of her doctors.   How could she maintain control over how she lived her final days, ensuring that she would not suffocate? This was the most important question.  With her daughter’s advocacy and support, Mrs. Koch decided to let go of any illusion of recovery.  We asked her to paint the picture of her final few days.  Her requests were simple and, with hope, achievable:  1.  Wait for her son to arrive from Switzerland and 2. Have a last family meal in her hospital room.

The morning after her son and his partner arrived, she and her family finalized plans for dinner.  She wanted take-out from one her favorites: Outback.   She wanted to try champagne again for the first time in many years.   Curiosity had clearly served Mrs. Koch well in her life, and why should she let go of this now? Her family decided not to wait until the evening meal, instead opting to have dinner at 11 am, complete with celebratory champagne and birthday cake for her grandson, who came with a gift for her.  He told her it was ok for her to die on his birthday, and that memories of her would be gifts for him on future birthdays.  Days already marked for celebration seem off limits for death, with fear that death might taint the day with sadness.    Mrs. Koch’s grandson will experience some sadness in the future on his birthday, and gratitude for his grandmother’s life will press down on the other side of the emotional scale.  Can we make a choice about the meaning we give to life’s events? 

A few hours after dinner, it became clear that Mrs. Koch’s condition was likely to deteriorate whether we removed her high flow oxygen or not.  It was time to release her from medical technology.  With the right medications, we slowly turned down the vapotherm.  She slept.  Grief presented itself to her family as uninvited yet expected- something to radically accept without battle.   Sadness and peace settled in our hearts.   

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