What Time Did Monday Night Football End Last Night Advance Directive Warning

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Advance Directive Warning

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

“I think I need help!”

Mom is standing outside my bedroom door, gasping and writhing in pain. She says she waited an hour before waking me up.

(Story: When I arrived last night, my mom told me that she sometimes feels “uncomfortable” at night. Knowing that she had a massive heart attack a few months ago, I was praying 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 cannot leave my mother.”

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 directive. I find and emphasize that it does not say that it is not treated.

We arrive at the hospital, a renowned facility for treatment, research and teaching. Dr. C. (cardiologist) and Dr. N., as well as numerous other staff, attend to mom.

They are very concerned about her Advance Directive. Again, I point out that he does not say that she should not be treated unless she is in a coma, which she is not.

“She is very, very ill,” they say. “What would she want?”

In tears, I tell them: “I know what she wants.” She is a very happy person. She loves life. He’s going to my brother’s 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 does not want to be held if she is in a coma or vegetative state with no hope of recovery. “She’s not in a coma,” I say. He looks significantly at her motionless form, attached to the machines.

If I had enough brains, I might say something like, “If they brought in a 20-year-old football player who had just had a massive heart attack and gave you morphine, how reasonable do you think he would be?” And would you be so quick to write him off?” But I can’t form those thoughts, let alone express them. I just have a feeling that something is wrong with the doctor’s reasoning.

They discuss the possibility of surgery to save her life.

I’m calling my brother Jamie and his wife Shelly (a geriatric nurse). Shelly thinks mom will die without surgery. So are the doctors. Jamie and I give permission.

Jamie and Shelly arrive at the hospital.

Doctors decide against surgery. Too risky. We agree.

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

Dr. N. wants to stop treatment (IV drugs). He tells us about an experience at the medical school when the professor made it difficult for the students to breathe and recounts his terror. He believes she is suffering and is sure she will “never regain cognitive function.”

I want him to see his grandchildren and great-grandchildren, some on the road and others here in town. “She won’t know them,” says Dr. N.

“Are you sure?”

He is sure.

It’s more about how she suffers. I don’t remember the words, but I believe there were indications that she was already in a vegetative state.

Jamie and I give permission to stop treatment on the basis that Mum is likely to be suffering intensely and will never regain cognitive function. Just before I give my final permission, I ask heaven for wisdom and I believe the answer I hear is yes.

They keep the dose of blood thinners the same, but reduce the dose of the drugs that keep mom’s blood pressure down.

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

“Thank you for being here with me,” she says to each of us – Jamie, Shelley and me.

“I love you, Mom,” I say.

“I love you too,” she replies.

We say the 23rd Psalm. When we get to “Surely goodness and mercy shall follow me all the days of my life,” Mom chimes in. (She remembers it later.)

The priest sings “Be Thou Mi 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 (“Whoever 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 it later.)

We watch as Mom’s blood pressure stabilizes and then begins to rise. My nephew is coming. Mom thanks him for coming. Her sister is coming. She and mom talk briefly.

Jamie and Shelly’s friend arrives. They joke about the last time he came to see her in the hospital, and gave her a bed by the window.

The mask is uncomfortable and no amount of adjustment can fix it. The staff replaces the mask with teeth.

Mom sits and chats freely. I’m joking. She laughs, and the monitor shows deeper and deeper breathing.

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

After tea with toast and jam, mum is moved upstairs to the cardiology unit. My husband, our daughter and son are coming. Mom is delighted to see them, but sorry for worrying them. Another girl of ours is on the phone and she and mom are having a nice conversation. Mom is happy but just a little disappointed that my brother can’t get the family’s Nicaraguan Skype connection.

He will never regain cognitive function… he will not know them.

Later in the afternoon, she was transferred to another ward. When we leave for the night, mom says, “I had a wonderful time.”

On Sunday, mom enjoys more visitors and the newspaper crossword puzzle.

On Monday, Dr. A, another cardiologist, makes his rounds. I ask him, “If a 90-year-old person had a heart attack as severe as mom’s, would you say she would never regain cognitive function, just based on her age and the severity of the attack?”

He seems surprised by the question. “Complete loss of cognitive function? Has anyone told you that?”

Yes, I answer without details.

No, he replies, he wouldn’t have predicted that. In fact, mom could be home for Christmas and should continue to live in the same situation.

She and I enjoy a Christmas carol concert at the hospital in the afternoon.

That evening, she finishes proofreading her grandson’s thesis introduction. She found a few minor errors and looks forward to reading the paper when it is finished. Mom wonders if a picture of the man my nephew writes about might be useful. She found one online last year but can’t remember the website. I notice the proposal on my nephew’s paper.

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

she will not know them

On Tuesday, the medical student informed us that there were no significant new heart damages from this, Mom’s second, heart attack.

Mom was discharged on Wednesday afternoon. She presents certificates of appreciation to the cardiology department and the emergency room.

Pity the poor Ambulance Officer. Although her mom hands her a card in an obvious card envelope, the woman thinks it’s her health card. (Do you think maybe they don’t get many thank you notes at the ER?)

My concern with the previous directive, at least as written, is this:

1. A doctor who advocates premature termination of the elderly (my term) can interpret terms such as “in a coma”, “in a vegetative state” and “without heroic measures” in a way that neither we nor our loved ones would like.

2. On a slightly different note, I have a friend who watched helplessly as her father gasped. Apparently the earlier verbal instruction not to use a feeding tube was interpreted by staff as “no intervention”; so they ignored my friend’s pleas to give him oxygen. She finally called 911 and paramedics gave oxygen to her father at the hospital. He died a week later, apparently in relative comfort.

We’ll never know if this man was allowed to suffer as he apparently did (no evidence, apparently) because the staff truly believed that a feeding tube also meant no oxygen, or if they simply felt he was an old man with advanced Alzheimer’s whose time has come.

My own father died in the same hospice. He cited “no heroic measures” and was given both a feeding tube and oxygen, as well as pain medication. I believe he passed away in relative physical comfort. It may depend on who is working that night, or whether the patient has Alzheimer’s disease, or who is with them at the time. Dad’s mind remained clear and he was able to communicate orally and in writing until he fell into a terminal coma. In addition, his very alert geriatric nurse daughter-in-law was at his side, along with the rest of us.

I once spoke to a nurse who said she was refusing oxygen to patients who were pointing at the mask, clearly asking for it, because of prior instructions. She said she was just holding those people and trying to comfort them as they died.

It appears that even a carefully written Advance Directive can lead to unnecessary 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 fly.

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

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