Approx. 1:30 a.m. on Saturday, December 18, 2010
“I think I need help!”
Mom is standing outside my bedroom door, panting and writhing in pain. He says he waited an hour before waking me up.
(Backstory: When I arrived last night, Mom told me that she sometimes feels “uncomfortable” at night. Knowing that she had suffered a serious heart attack a few months ago, I prayed to be there if it happened again.)
We call 911 and I give them the information. They tell me to make sure pets are properly secured and the door is open. I say, “I can’t leave my mother’s side.”
After what seems like 10 minutes, I call 911 again. “They’re at the door,” says the dispatcher.
There are two paramedics and four firefighters, including the captain of the Fire Department. Some provide first aid, others ask about Mom’s advance directives. I find it and point out that it does not say not to treat her.
We arrived at the hospital, a renowned treatment, research and teaching center. Dr. C. (cardiologist) and Dr. N., as well as many other staff members, care for Mom.
They are very concerned about your advance directive. Again, I point out that it does not say not to treat her unless she is in a coma, and she is not.
“She is very, very sick,” they say. “What would she want?”
With tears in my eyes, I tell them: “I know what she wants. She is a very happy person. She loves life. She is going to my brother’s house for Christmas. Her great-grandchildren will come to visit us next month. She does not want to. go anywhere. “
I show one of the doctors the part of her advance directive that says she does not want to keep her if she is in a coma or in a vegetative state with no hope of recovery. “She’s not in a coma,” I tell her. He looks meaningfully at her immobile form, connected to machines.
If I had my wits about me, maybe I could say something like, “If they brought in a 20-year-old soccer player who had just had a serious heart attack and was given morphine, how smart do you think he would be? quick to dismiss it? “But I can’t form these thoughts, much less express them. I just have the feeling that something is wrong with the doctor’s reasoning.
They talk about the possibility of life-saving surgery.
I call my brother Jamie and his wife Shelly (geriatric nurse). Shelly thinks Mom will die without surgery. Doctors too. Jamie and I give permission.
Jamie and Shelly arrive at the hospital.
Doctors decide not to operate. Too risky. We agree.
Dr. N. wants to discuss the options right there in front of Mom. But I’ve read that comatose, or seemingly comatose, patients sometimes give up and die when they hear a negative prognosis.
I say “No in front of her” and we head to the Silent Room. Dr. C. explains again that surgery is not an option. We agree.
Dr. N. wants to finish medical treatment (intravenous medications). He tells us about an experience in the medical school when the professor made it difficult for the students to breathe and recounts his terror. He believes that she is suffering and is sure that “she will never regain cognitive function.”
I want you to see your grandchildren and great-grandchildren, some on the way and some here in town. “She won’t recognize them,” says Dr. N.
“Are you sure?”
He is sure.
Talk more about how he is suffering. I don’t remember the wording, but I think there was some indication that she was already in a vegetative state.
Jamie and I give permission to terminate medical treatment on the grounds that Mom is probably in severe pain and will never regain cognitive function. Just before I give final permission, I look to heaven for wisdom and I think the answer I hear is yes.
They keep the same dose of blood thinner but reduce the dose of medicine that keeps mom’s blood pressure high.
[I’m calling what happened next a miracle, but may never know, at least not in this life, how it happened. Perhaps Dr. C. didn’t want to disagree with Dr. N. in front of us, but quietly went ahead and did what he knew was right. Or perhaps–and this may be more likely–they maintained the one medication and only lowered the other one in order to give Mom a quiet passing, without another cardiac event that would clearly upset the family. However it happened, I believe that I heard “yes” not because it was the way to go regarding treatment, but because the answer satisfied Dr. N. and made way for what followed.]
Mom’s blood pressure drops. We meet to sing and pray. Through her mask, Mom says, “I have a lot to be thankful for.”
“Thank you for being here with me,” he says to each of us: Jamie, Shelly, and me.
“I love you, Mom,” I tell her.
“I love you too,” she replies.
We pray Psalm 23. When we get to “Surely kindness and mercy will follow me every day of my life,” Mom joins in. (She remembers this later).
The chaplain sings “Be Thou My Vision”, Mom’s favorite hymn.
We sing “Amazing Grace” and “Jesus loves me.”
I recite John 3:16 (“For God so loved the world …”) and John 1:12 (“All who received him …”)
“I can’t speak very clearly,” Mom apologizes through the mask.
“Yes, you can,” I reply. “You just said, ‘I can’t speak very clearly.’ “She laughs. (Mom remembers this later).
We watch Mom’s blood pressure stabilize and then start to rise. My nephew is coming. Mom thanks you for coming. His sister is coming. She and Mom talk briefly.
Jamie and Shelly’s friend is coming. They joke about the last time he went to see her at the hospital and got her a bed by the window.
The mask is uncomfortable and no adjustment can correct it. Staff replace the mask with tips.
Mom sits and talks freely. I tell a joke. She laughs and the monitor shows deeper and deeper breaths.
He wonders why everyone looks so sad (he remembers later) and … could he have something for breakfast?
After tea with toast and jam, Mom is put on a cardiac unit. My husband, our daughter and our son arrive. Mom is delighted to see them, but she is sorry she worried them. Another of our girls calls and she and Mom have a nice chat. Mom is happy but a little disappointed that my brother can’t get the family’s Nicaraguan connection on Skype.
She will never regain cognitive function … she will not recognize them.
Later in the afternoon, he moved to another room. When we leave at night, Mom says, “I had a great time.”
On Sunday Mom enjoys more visits and a newspaper crossword.
On Monday, Dr. A, another cardiologist, is doing his rounds. I ask her, “If a 90-year-old had a heart attack as severe as Mom, would you say that they would never regain cognitive function, based solely on their age and the severity of the attack?”
He seems surprised by the question. “A total loss of cognitive function? Did someone tell you that?”
Yes, I answer without giving more details.
No, he replies, I wouldn’t predict it. In fact, Mom might as well be home for Christmas and should be able to continue living in the same situation.
She and I enjoyed a carol concert at the hospital in the afternoon.
That night, he finishes editing his grandson’s introduction to his honors thesis. He found some minor bugs and is looking forward to reading the document when it is finished. Mom wonders if a photo of the man my nephew is writing about might be helpful. Found one on the internet last year, but can’t remember the website. I write down the suggestion on my nephew’s paper.
Mom writes Christmas checks for grandchildren and great-grandchildren, and asks Jamie to bring the answer to the crossword tomorrow.
she won’t know them
On Tuesday, a medical student informed us that there was no significant new damage to the heart from this, Mom’s second heart attack.
Mom is discharged Wednesday afternoon. Give thank you cards to the cardiology room and the emergency department.
Pity the poor ER employee. Although Mom hands her the card in what is obviously a greeting card envelope, the woman thinks it is her health care card. (Do you think they might not get a lot of thank you cards in Emergencies?)
My concerns with the advance directive, at least as we had it written, are as follows:
1. A doctor who favors premature termination of the elderly (my term) may interpret terms like “in a coma”, “in a vegetative state” and “no heroic measure” in a way that neither we nor our loved ones would want.
2. In a somewhat different case, I have a friend who watched helplessly as her father gasped. Apparently, the staff had interpreted an earlier oral instruction not to use a feeding tube to mean “no intervention”; so they ignored my friend’s pleas for oxygen. He eventually called 911 and paramedics administered oxygen to his father at the hospital. He passed away a week later, apparently in relative comfort.
We will never know if this man was allowed to suffer as he apparently did (no evidence, obviously) because the staff actually believed that not having a feeding tube also meant there was no oxygen, or if they simply felt he was an elderly man with Alzheimer’s advanced whose time had come.
My own father passed away in the same hospice. He had specified “no heroic measures” and was given both a feeding tube and oxygen as well as painkillers. I think he passed away in relative physical comfort. It may depend on who is working that night, if the patient has Alzheimer’s or who is with him at the time. Dad’s mind remained clear and he was able to communicate orally and in writing until he slipped into his final coma. Also, his very vigilant daughter-in-law geriatric nurse was by his side, along with the rest of us.
I once spoke to a nurse who said she was refusing oxygen to patients who pointed to the mask, clearly asking for it, due to prior instructions. He said that he simply hugged these people and tried to comfort them as they died.
It seems that even a carefully crafted advance directive can result in unnecessary suffering and premature death.
The solution my brother and I are considering is simply a list of agents with complete contact information so that decisions can be made at that time.
In any case, we must be very, very vigilant when our loved ones cannot speak for themselves.
