“Let her go in peace,” was my bottom-line message.
ER trips, IV antibiotics, bulb syringes … all had become extraordinary measures … in my view.
A woman called me out of the blue yesterday. A hospice worker had given her my Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness. I am not exactly sure what she wanted from me as she talked rapidly and pretty much constantly through our close to an hour on the phone.
This never-married woman was the primary caregiver for her 96-year-old mother. The old lady had suffered strokes and dementia was advancing. Because of the swallowing difficulty the daughter was forcing food into her mother’s mouth with a bulb syringe. This is a rubber device, shaped like a tear drop. You suck food into the bulb then stick the narrow end into the patient’s mouth and force the contents out.
It sounds like the medical professionals in both hospice and the hospital have encouraged the daughter to slow down. But she has sent her mom to the ER three times over the last several weeks. “Maybe if they just give her some IV hydration she would start eating better,” her logic went.
Having listened for about a half hour I asked her, “What is the future for your mother?”
“She is dying.”
Bingo. She said what I was hoping for. In hundreds of such conversations over the years I have asked questions to help caregivers come to their own conclusion about the big picture.
Dying people stop eating and drinking at the end of life. Dying people probably will dehydrate leading to a more peaceful and compassionate death. Dying people talk less and sleep more. Dying people can get aspiration pneumonia once known as “the old man’s friend.”
Then the lady moved into my chaplain’s area. “I feel so guilty all the time.” She wept.
“Guilty? For what?” Caregiver guilt is not uncommon.
Once, when she mentioned to a doctor she felt guilty for not doing enough, he said, “If you want to feel guilty about something, feel guilty for doing all this to your mother.” I wouldn’t have said it that way. But basically I suggested she start doing less.
I recommended that if she wanted her mother to have a peaceful death at home she not call the rescue squad, she not use antibiotics for aspiration pneumonia, and maybe stop using the bulb syringe. Oh…and she stop feeling guilty.
I actually have little hope she will stop feeling guilty as it has been her constant companion since childhood she told me. But I did tell her, “You can never make a wrong decision. You do the best you can with the information you have at the time. That is all we can ask of anyone. Maybe later will you look back and see how things could have been done differently. But in the moment you just do the best you can.”
Here is an article reviewing a This American Life radio program featuring a hospice nurse and an HBO special about a hospice in a prison. Well thought out observations about both identifying with dying patients and NOT identifying with them.