Why Is My 1 Year Old Waking Up At Night Advance Directive Warning

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Advance Directive Warning

Approx. 1:30 Saturday morning, Dec. 18, 2010

“I think I need help!”

Mom is standing outside my bedroom door, gasping for breath and writhing in pain. She says 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’d suffered a major heart attack some months ago, I prayed that I’d be there if it happened again.)

We call 911 and I give them the information. They tell me to make sure that pets are secured and the door is open. I say, “I cannot 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 Directive. I find it and point out that it doesn’t say not to treat her.

We arrive at the hospital, a renowned treatment, research and teaching facility. Dr. C. (a 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 it doesn’t say not to treat her unless she’s in a coma, and she isn’t.

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

In tears, I tell them, “I know what she wants. She’s a very happy person. She loves life. She’s going to my brother’s for Christmas. Her great-grandkids 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 maintained if in a coma or vegetative state with no hope of recovery. “She’s not in a coma,” I say. He glances meaningfully at her motionless form, hooked up to machines.

If I had my wits about me, perhaps I could say something like, “If they brought in a 20-year-old football player who’d just had a major heart attack and you administered morphine, how sentient do you think he’d be? And would you be so quick to write him off?” But I can’t form these thoughts, let alone express them. I just have a feeling that there’s something wrong with the doctor’s reasoning.

They talk about the possibility of surgery to save her life.

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

Jamie and Shelly arrive at the hospital.

The doctors decide against surgery. 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 “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 terminate medical treatment (IV medications). He tells us about an experience in medical school when the professor made it hard for the students to breathe, and recounts his terror. He believes she’s suffering and sure that she “will never regain cognitive function.”

I want her to see her grandkids and great-grandkids, some on their way and others here in town. “She won’t know them,” says Dr. N.

“Are you sure?”

He’s sure.

He talks more about how she’s suffering. I don’t remember the wording, but I believe 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 suffering intensely and will never regain cognitive function. Just before giving final permission, I look to Heaven for wisdom and believe that the answer I hear is yes.

They maintain the same dosage of blood thinner but lower the dosage of medication that’s keeping 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 around to sing and pray. Through her mask, Mom says, “I have so much to be thankful for.”

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

“I love you, Mom” I say.

“I love you too,” she answers.

We recite the 23rd Psalm. When we get to “Surely goodness and mercy shall 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 counter. “You just said, ‘I can’t speak very clearly.’ ” She laughs. (Mom remembers this later.)

We watch as Mom’s blood pressure stabilizes, then starts to rise. My nephew comes. Mom thanks him for coming. Her sister comes. She and Mom chat briefly.

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

The mask is uncomfortable and no adjusting can make it right. Staff replace the mask with prongs.

Mom sits up and chats freely. I crack a joke. She laughs, and the monitor shows deepening respirations.

She wonders why everyone looks so sad (she remembers this 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 sorry that she worried them. Another of our girls phones and she and Mom have a nice chat. Mom’s happy, but just a little disappointed that my brother can’t get the Nicaraguan connection of the family on Skype.

She will never regain cognitive function… she won’t know them.

Later in the afternoon, she’s moved to another ward. When we leave for the night, Mom says, “I’ve had a wonderful time.”

On Sunday Mom enjoys more visitors and a newspaper crossword puzzle.

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

He seems surprised at the question. “A total loss of cognitive function? Did someone tell you that?”

Yes, I answer without elaborating.

No, he answers, he wouldn’t predict that. In fact, Mom could well be home for Christmas, and should be able to continue living 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 introduction to his Honors thesis. She’s found a few minor errors and is looking forward to reading the paper when it’s finished. Mom wonders if a picture of the man my nephew is writing about might be useful. She found one on the Internet last year, but can’t remember the website. I note the suggestion on 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 damage to the heart 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 clerk on Emergency. Even though Mom hands her the card in what is obviously a greeting card envelope, the woman thinks it’s her Health Care card. (Do you think maybe they don’t get many thank you cards on Emergency?)

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 such as “in a coma”, “in a vegetative state,” and “no heroic measures” in a way that neither we nor or our loved ones would want.

2. In a somewhat different case, I have a friend who watched helplessly as her father gasped for breath. Apparently staff had interpreted an earlier oral instruction not to use a feeding tube to mean “no intervention”; thus they ignored my friend’s pleadings to give him oxygen. She finally called 911 and paramedics administered oxygen to her father in the hospital. He passed away a week or so later, apparently in relative comfort.

We will never know whether this man was allowed to suffer as he apparently did (there’s no proof, obviously) because staff truly believed no feeding tube also meant no oxygen, or whether they simply felt that he was an old man with advanced Alzheimer’s whose time had come.

My own father passed away at the same palliative care facility. He had specified “no heroic measures” and was given both a feeding tube and oxygen as well as painkillers. I believe he passed away in relative physical comfort. Maybe it depends who’s working that night, or whether 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 slipped into the final coma. In addition, his highly vigilant geriatric nurse daughter-in-law was at his side, along with the rest of us.

I once spoke to a nurse who said that she refused oxygen to patients who pointed at the mask, clearly asking for it, because of prior instructions. She said she just held these people and tried to comfort them as they died.

It appears that even a carefully written Advance Directive may 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 at the time.

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

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