Boulder, Colorado (August 2, 2011)
I am here visiting my mother who is closer to the end of life with Alzheimer’s. We moved her here from Tampa a year ago so my sister could be an “in-town” caregiver. My brother and I travel to Colorado every few months to see mom and support my sister, he from Florida and me from Virginia.
I say “closer” which is not such a helpful term as we all are closer to our dying than we were. So we are all “dying.” Every one of us will die sooner or later. But thinking of us all as “dying” may not be helpful in making treatment decisions.
We make different medical choices for the young and healthy than we do for the old and infirm. When we are young and otherwise healthy, aggressive medical treatment to cure a cancer caught in its early stages seems quite appropriate. Wait a minute! I thought I said we are all dying so why would we treat a dying person to cure cancer. See . . . thinking that we all are “dying” is not so helpful in making treatment decisions.
So mom, age 92, has been going through the stages of dementia for at least seven years. We have taken over her finances, her medical treatment decisions, even the move to Boulder was all ours. We didn’t even pretend that she had a say in the matter.
When do we say she is dying? I have observed in my years as a healthcare chaplain that we reserve the word “dying” for the last hours or days of a person’s life. Sometimes we even say a patient is “actively dying” which is a strange oxymoron. Often this type patient is nonresponsive, not eating nor drinking . . . doing nothing . . . and we say actively dying. What’s that about?
I now characterize my mother’s condition and those like her as being in “the last phase of life.” This phase can last from hours to years. Like my father before her, my mom indeed has been in this phase for years. Being in the “last phase” informs our decisions about her care. Our goal for her at this stage of life, following her instructions, is to prepare for a comfortable and dignified death.
My friend Dr. Joanne Lynn instructs her physician colleagues to ask themselves, “If I heard that this patient had died in the next six months, would I say to myself ‘I am not surprised’?” If someone’s death would not be surprising then they are in the “last phase.” In addition, they probably would qualify for hospice.
Decisions are easier in the last phase when we are looking to prepare for a comfortable and dignified death. Hospitalization, CPR, surgery, a feeding tube . . . all highly unlikely to be compatible with a comfort goal.
Medical decisions may be easier but the emotional and spiritual work continues. It has been hard to watch our once vital and fun-loving mother wither into a shell of her former self. We have been grieving. But we are very much at ease with the goal of comfort care in this last phase of life.