How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years. I have written endlessly on the subject. I have lectured up to eight hours in a single day on topic.
One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.
A story became a metaphor.
“I’ve got to make a life-and-death-decision about my mother by Thursday,” the teary-eyed woman said to me on a Monday morning. She volunteered once a week at the nursing home where I was chaplain. She wanted me to help her.
We found a place of quiet. “Tell me what is going on?”
“My mother is in a hospital in Virginia Beach and is on dialysis. My brothers and sisters and I have to decide whether or not to withdraw the treatment and let or die.”
“Has you mother been sick for a while or did she all of a sudden go into kidney failure?”
“Oh, her health has been going down for some time. She has had two strokes in the last two years and now her kidneys are shutting down.”
“What do the docs say? Is the treatment doing any good?”
“They don’t think it is doing any good at all.”
“Did you mother ever give any indication what she would have wanted in a situation like this?”
“Mom said she never wanted to be on dialysis.”
I am thinking, “What’s wrong with this picture here?” In my mind the obvious choice was to remove the patient from dialysis. I told the woman as much.
I said, “This is not a hard decision. Of course, you take your mom off dialysis for all the reasons you just gave me. This is the end of a long decline in her health. The docs say the treatment is not doing any good. And your mother said she never wanted to be on dialysis. Of course you take her off.”
I wanted to know more. “What is going on here that makes this decision so difficult?”
At that point she began to cry, “I think I am feeling guilty because I haven’t visited mom enough.”
When she said “guilty” I knew she was moving into my area. . . . I’m a Baptist. I know we think we have more guilt than other persuasions. Of course, there are the famous Catholic and Jewish forms of guilt. Fair or not, religions often encourage guilt feelings. Although she did not say her religious beliefs led her to feel guilty, I felt more at home as a chaplain in the face of such deep emotion.
The metaphor the story became is this: For patients and families end-of-life decisions have little to do with medicine, ethics, law, religion, or morality. For them these decisions are primarily emotional and spiritual in their nature.
It is not that medicine, ethics, law, religion, and morality have no part in medical treatment decisions. They are a huge part, especially at the end of life. As we enter our final days or months often the resolving of these issues points toward withholding or withdrawing certain treatments. Then the big question for the patient or family is “can I let go?”