Back when I was a college student, Elisabeth Kubler-Ross’s book, “On Death and Dying” was required reading for my adult development class. I read it cover-to-cover, very quickly and at the end of the semester I did not sell it back. I still have it and have not re-read it as I thought I might. The book is so powerful that it has stuck with me these fifteen years. I can’t imagine wanting to ever read it again, but I also can’t imagine forgetting enough of it to think I should.
Kubler-Ross is the person who suggested that there are stages the dying go through, starting with denial and ending with acceptance. And her book started a national conversation about how people with terminal illness are treated and should be treated. Apparently, in the middle of the last century, patients didn’t have a widely-respected right to discontinue treatment in the face of terminal illness as we do now. Now we all have the right to request only palliative treatment (hospice), to refuse any treatment we have been offered; We all have the right to just go ahead and die already. And it’s a good thing, but I am beginning to wonder if the pendulum hasn’t perhaps swung too far in the opposite direction.
My father-in-law lived for many years (I don’t know how many) with Hepatitis C. That’s one of the untreatable forms of Hepatitis and there is no vaccine. He fought it from the moment he was diagnosed up until about the last few days of his life. The disease destroyed his liver (that’s what it does), but he still had hope for treatment. The treatment may have hastened his demise, certainly it had a negative impact on his quality of life. I spoke to him before he got so sick about people discontinuing treatment for cancer and he condemned such behavior in shockingly strong terms. I wasn’t expecting that. I thought everyone agreed that sometimes that was for the best, or at a minimum that we ought not to judge anyone for making that decision.
He spent the last two months of his life in the hospital. He was in and out of the intensive-care unit. I worried about him but I also worried about my mother-in-law. She lived at the hospital. They had sent him to a hospital far away from home, so she could not go home at night and sleep in her own bed. “Why don’t they just face the inevitable?” I thought. I think the hospital staff wondered the same thing after about the first week or two. Hospice was suggested, and shot down. My parents-in-law were unprepared for the eventuality that he might die soon. Even one of my sisters-in-law suggested they were being selfish for continuing to try to preserve his life.
But why? Was it wrong to continue to try? Have we moved so far away from the medicine that tries to preserve life with no consideration of its quality that we can’t allow the possibility that someone might choose to spend their final hours in the hospital? I will admit to having had a hard time with this personally. I visited him in the hospital, in the ICU specifically and I thought that it was no place to be. I felt that my in-laws should just accept fate and bring him home where he and my mother-in-law would have been more comfortable. They could get hospice in there and he could face the end in a familiar and comforting environment. But that was not how they wanted it. Not only that, but they don’t seem (as far as I could tell) to have prepared themselves emotionally to face his end. And fighting tooth and nail gave them time and space to do that.
Has compassion failed us? Did Dr. Kevorkian make his point so well that we feel we must show our compassion for the dying by telling them that their lives are worthless now anyway? Don’t get me wrong, the Right-To-Die movement was needed and has value, but has Right-To-Die become Obligation-To-Die? We don’t know how we ourselves will feel when or if we are faced with this decision in our own lives. As Christians, we believe that we are going home, “to see our loved ones gone before us one by one” and to dwell with our Lord and Savior. But not everyone believes the same thing, and not everyone’s faith is so strong.
Anyway, I am asking questions about all of society, but the truth is my own, personal compassion faltered, and that troubles me. I know my in-laws faced this the best way they could. Now my mother-in-law faces each day the best she can. As do all of us.
How about you? Does anything I’ve talked about ring true in your experiences? Would you care to share?
SleeplessinSummerville 