“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.”
It is so easy to theorize about what you would do. What if you were on life support with the prospect of spending the rest of a long life as a quadriplegic on a ventilator. Would you say “good bye” to your wife who is carrying your unborn child and ask them to turn off the vent?
That is exactly what Tim Bowers did. Click here for the ABC telling of the story.
Just over a week ago Bowers was hunting and fell sixteen feet to the ground from a deer stand. He fractured three vertebrae and damaged his spinal cord. The medical team advised his family that he would be paralyzed from the shoulders down and probably dependent on machines to breathe for him for the rest of his life. The family wanted to see if the patient could participate in the decision-making process.
When he woke up from the sedatives that had kept him unconscious he could not speak but could answer yes-and-no questions. “Do you want this?” they asked, meaning “Do you want to be kept alive on this machine?” He shook his head “No.” They removed him from the ventilator and he died a day after the accident.
This is what we in the medical community have been advocating. NOT that people be allowed to die. What we want is for patients to be involved in the decision-making that might end his or her life. They woke Bowers up and asked and he essentially said, “Let me die.”
As soon as I read this story I thought, “I know many paralyzed people on vents who might say he made the wrong decision.” Think Stephen Hawking. Sure enough I found one blogger who is paralyzed who took issue with how this case was handled.
Perhaps the decision came too soon after the injury. Law professor Thaddeus Pope wonders whether Bowers had “sufficient decision making capacity at the time he made the decision?” In states where physician assisted suicide is legal there is a waiting period from the first request for life-ending medication to a second and final request. Pope asks whether or not Bowers was fully informed about the “options and possibilities of life as a paralyzed individual.”
I tend to agree. Give a little time. If the patient persists in his request to be taken off the machine, by all means, comply.
Years ago I was called to the beside of a heavily sedated man on a ventilator after a heart attack. His wife explained that he had been on a vent before with his heart condition and wrote a living will so he would never be on a breathing machine again. I told the ICU nurse about my conversation and she said, “It is too soon to think about that.”
Well, he was able to get off the vent and out of ICU. I visited him a few days later. He was walking around his hospital room gathering things as he prepared for a transfer to another hospital to have a defibrillator implanted in his chest. I asked him, “How do you feel about being on a ventilator again?”
He said, “I am so glad they did?”
There you go.