My husband, who has been diagnosed as being in a persistent vegetative state, has been on a ventilator for eight months. Doctors say there is no hope. He can still communicate; he nods yes when I ask if he’s in pain or distress. We never talked about what to do in such a situation. Years ago, when our dog became old and blind, I talked about putting him down. My husband did not wish that and said: “Will you do that to me if I lose my functions?” I am torn. How do I decide whether to remove him from life support?
This is a very tragic circumstance. Before making a decision, you need more medical certainty. If your husband is in a persistent vegetative state, he would not be able to communicate. You need to determine how much of your husband is truly in that hospital bed.
According to Arthur Schafer, professor and director of the Centre for Professional and Applied Ethics at the University of Manitoba, you are in difficult emotional struggle because you have been put in the position of having to decide for him, rather than represent his wishes.
“I think most Canadians probably don’t know what their spouse or their parent or their loved one would want in a circumstance like this, when they are not capable of communicating any longer,” Prof. Schafer said.
Compounding matters is a prognosis that is not clear in your mind.
“You want to establish consensus and certainty with the medical team about what his level of awareness is and what his prognosis is,” said Stephen Workman, an internist at the QEII Health Sciences Centre in Halifax who has an interest in end-of-life care. “She needs to know those two things.”
Dr. Workman said you should ask the doctors what the chances are of your husband waking up.
You may also want to ask your physician about a sleeping pill called zolpidem. It has had a paradoxical effect of waking some vegetative and minimally conscious patients for short periods. In a few, it has made a profound difference, while in others it has had no effect. Ask your doctor if it’s worth trying.
Once you have that answered, you will have to determine whether your husband would want all these medical interventions he is receiving, including the ventilator, even if there is a chance he could wake.
“If she knows with certainty that her husband would not want to go on like this, she needs to find people to help her speak for him and accept what he wants and come to terms with his death,” Dr. Workman said. “Your heart and your mind have to be in the same spot to go ahead with this.”
Before making any final decision, you may want to speak to family, friends, a social worker or chaplain. You may even want to talk to a lawyer with expertise in end-of-life cases.
Do not feel you need to rush this process. Ideally, you want to see this as something you are doing for your husband, not to him. With such a fraught decision before you, getting professional counsel is crucial.
The Patient Navigator is a column that answers reader questions on how to navigate our health-care system. Send your questions to firstname.lastname@example.org.