Advance Directive Warning

Approx. 1:30 a.m. Saturday morning, December 18, 2010

“I think I need help!”

Mom is standing outside my bedroom door, panting and writing in pain. She says that she 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 had a major heart attack a few months ago, I prayed that I would be there if it happened again.)

We call 911 and I give them the information. They tell me to make sure the pets are 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,” the dispatcher says.

There are two paramedics and four firefighters, including the captain of the Fire Department. Some give first aid, others ask about mom’s advance directives. I find it and point out that she doesn’t say don’t treat her.

We arrive at the hospital, a renowned center for treatment, research and teaching. Mom is cared for by Dr. C. (cardiologist) and Dr. N., as well as many other staff members.

They are very concerned about your advance directive. Again, I point out that she’s not saying don’t treat her unless she’s in a coma, and she’s 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’s a very happy person. She loves life. She’s going to my brother’s house for Christmas. Her great-grandchildren are coming to visit next month. She doesn’t want to go.” anywhere.”

I show one of the doctors the part of her advance directive that says she doesn’t want to be kept if she’s in a coma or vegetative state with no hope of recovery. “She’s not in a coma,” I tell him. He looks meaningfully at her motionless form, connected to the machines.

If I had my wits about me, maybe I could say something like, “If they brought in a 20-year-old football player who had just had a major heart attack and put him on morphine, how sensitive do you think he would be? And would you be as quick to dismiss it? But I can’t form these thoughts, much less express them. I just have a feeling there’s something wrong with the doctor’s reasoning.

They discuss the possibility of surgery to save his life.

I call my brother, Jamie, and his wife, Shelly (a geriatric nurse). Shelly thinks mom will die without the surgery. The doctors too. Jamie and I give permission.

Jamie and Shelly arrive at the hospital.

The doctors decide not to operate. Too risky. We agree.

Dr. N. wants to discuss the options right there in front of Mom. But I have read that comatose, or apparently comatose, patients sometimes give up and die when they hear a negative prognosis.

I say “Not in front of her” and we go to the Quiet Room. Dr. C. explains again that surgery is not an option. We agree.

Dr. N. wants to finish the medical treatment (intravenous medications). He recounts an experience in medical school in which the professor made it difficult for the students to breathe and recounts his terror. He believes that she is suffering and is certain 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.

He talks more about how she 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 basis that Mom is likely to be in severe pain and will never regain cognitive function. Just before giving 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 the medicine that keeps Mom’s blood pressure up.

[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 gather to sing and pray. Through her mask, Mom says, “I have a lot to be thankful for.”

“Thanks 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 recite the 23rd Psalm. When we get to “Surely good and mercy will follow me all the days 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 (“As many as 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 see how mom’s blood pressure stabilizes and then begins to rise. my nephew is coming Mom thanks you for coming. her sister is coming. She and Mom chat briefly.

Jamie and Shelly’s friend is coming. He jokes about the last time he came to see her at the hospital and got him a bed by the window for her.

The mask is uncomfortable and no adjustment can correct it. The staff replaces the mask with spikes.

Mom sits and chats freely. I make a joke. She laughs and the monitor shows deeper and deeper breaths.

She wonders why everyone looks so sad (she remembers later), and… could she have some breakfast?

After tea with toast and jam, Mom is moved upstairs to a cardiac unit. My husband, our daughter and our son arrive. Mom is delighted to see them, but she’s sorry she worried them. Another one of our girl phones and her and mom have a nice chat. Mom is happy, but just a little disappointed that my brother can’t get the family’s Nicaraguan connection on Skype.

It will never regain cognitive function…it won’t recognize them.

Later in the afternoon, she was moved to another room. When we go to sleep, her mom says, “I had a great time.”

On Sunday Mom enjoys more visits and a crossword puzzle from the newspaper.

On Monday, Dr. A, another cardiologist, is doing his rounds. I ask him, “If a 90-year-old had a heart attack as severe as Mom’s, would you say he would never regain cognitive function, based solely on his 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 could very well be home for Christmas and she 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, she finishes proofreading her grandson’s introduction to his honors thesis. She has found some minor errors and looks forward to reading the document when it is finished. Mom wonders if a picture of the man my nephew is writing about might be helpful. She found one on the Internet last year, but she doesn’t remember the website. I take note of the suggestion in my nephew’s paper.

Mom writes Christmas checks for the grandchildren and great-grandchildren, and asks Jamie to bring the solution to the crossword puzzle tomorrow.

she won’t know them

On Tuesday, a medical student informs us that there was no significant new heart damage from this, Mom’s second heart attack.

Mom is discharged Wednesday afternoon. She delivers thank you cards to the cardiac ward 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. (Think maybe they don’t get many thank you cards in Emergency?)

My concerns regarding advance directives, at least as we had them written, are as follows:

1. A doctor who favors the premature termination of the elderly (my term) can interpret terms like “in a coma”, “in a vegetative state” and “without heroic measures” 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, staff had interpreted an earlier oral instruction not to use a feeding tube to mean “no intervention”; therefore they ignored my friend’s pleas for oxygen. She eventually called 911 and paramedics administered oxygen to her father at the hospital. He passed away a week later, apparently in relative comfort.

We’ll never know if this man was allowed to suffer as he apparently did (no evidence, obviously) because the staff really believed that not having a feeding tube also meant no oxygen, or if they just felt like he was an old man with Alzheimer’s. advanced whose time had come.

My own father passed away in the same hospice. He had not specified “heroic measures” and was given both a feeding tube and oxygen as well as painkillers. I think he passed away in relative physical comfort. Maybe it depends on who’s working that night, or if the patient has Alzheimer’s, or who’s with them at the time. Dad’s mind remained clear and he was able to communicate orally and in writing until he fell into his final coma. Also, his daughter-in-law, a very caring geriatric nurse, was by his side, along with the rest of us.

I once spoke with a nurse who said she refused oxygen to patients who pointed to the mask, clearly asking for it, due to advance instructions. She said that she just hugged these people and tried to comfort them as they died.

It seems that even a carefully written Advance Directive can result in needless suffering and premature death.

The solution my brother and I are considering is simply a list of agents with full contact information so decisions can be made on the spot.

In any case, we must be very, very vigilant when our loved ones cannot speak for themselves.

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