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Advance Directive Warning

Around. 1h30 Saturday morning, December 18, 2010

“I think I need help!”

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

(History: When I arrived last night, Mom told me she sometimes felt “uncomfortable” at night. Knowing that she had suffered a major 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 the animals are safe and the door is open. I say, “I can’t leave my mother’s side.”

After what feels like 10 minutes, I call 911 again. “They’re at the door,” the dispatcher says.

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

We arrive at the hospital, a renowned treatment, research and teaching centre. Dr. C. (a cardiologist) and Dr. N., along with many other staff, look after Mom.

They are very concerned about his advance directive. Again, I point out that it doesn’t say don’t treat her unless she’s in a coma, and she isn’t.

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

In tears, I tell them: “I know what she wants. He is a very happy person. She loves life. She’s going to my brother’s for Christmas. His great-grandchildren are coming to visit him next month. all over.”

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 in a vegetative state with no hope of recovery. “She’s not in a coma,” I said. He glances meaningfully at his motionless form, connected to machinery.

If I had a cool head, maybe I could say something like, “If they brought in a 20-year-old football player who had just had a massive heart attack and you gave him morphine, how do you think he would And would you be so quick to write him off? But I cannot form these thoughts, much less express them. I just feel like there’s something wrong with the doctor’s reasoning.

They talk about 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 operation. 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 on the spot, in front of Mom. But I’ve 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 into the quiet room. Dr. C. again explains that surgery is not an option. We agree.

Dr. N. wants to end medical treatment (IV drugs). He tells us about an experience in medical school where the professor made it difficult for the students to breathe and tells of his terror. He thinks she is in pain and is sure that she “will never regain her cognitive functions”.

I want her to see her grandchildren and great-grandchildren, some on the way and some here in town. “She won’t know 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 believe there were indications that she was already in a vegetative state.

Jamie and I give permission to end medical treatment on the grounds that Mom is probably in severe pain and will never regain her cognitive functions. Just before giving final permission, I look to heaven for wisdom and believe the answer I hear is yes.

They maintain the same dose of blood thinner, but decrease the dose of drugs that keep 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 gather to sing and pray. Through her mask, mom says, “I have so much to be grateful for.”

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

“I love you, mom” I said.

“I love you too,” she replies.

We recite Psalm 23. When we get to “Surely goodness and mercy will follow me all the days of my life,” Mom joins us. (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,” mum 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 level off, then start to rise. My nephew is coming. Mom thanks him for coming. His sister arrives. She and Mom briefly chat.

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

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

Mom sits and talks freely. I’m making a joke. She laughs and the monitor shows deepening breaths.

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 are arriving. Mom is happy to see them, but sorry to have worried them. Another one of our girls phones and she and mom have a good chat. Mom is happy, but just a little disappointed that my brother can’t get the family’s Nicaraguan connection on Skype.

She will never regain her cognitive functions… she will not know them.

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

On Sundays, Mom enjoys more visitors and a crossword puzzle in the newspaper.

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

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

Yes, I answer without elaborating.

No, he replies, he wouldn’t predict it. In fact, mom might just be home for Christmas and should be able to continue living in the same situation.

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

That evening, she finished proofreading her grandson’s introduction to his honors thesis. She found a few minor errors and is looking forward to reading the document when it’s finished. Mom wonders if a picture of the man my nephew is talking about might be helpful. 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 grandkids and great-grandkids 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 has been no new significant heart damage from Mom’s second heart attack.

Mom went out on Wednesday afternoon. She distributes thank you cards to the cardiology department and the emergency department.

Have pity on the poor emergency clerk. Even though mom hands her the card in what is obviously a greeting card envelope, the woman thinks it’s her healthcare card. (Do you think they might not get a lot of emergency thank you cards?)

My concerns with the advance directive, at least as we have written it, are:

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 our loved ones would like.

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”; so they ignored my friend’s pleas to give him oxygen. She eventually called 911 and paramedics administered oxygen to her father in the hospital. He died about a week later, apparently in relative comfort.

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

My own father died in the same hospice. He had specified “no heroic measures” and had been given both a feeding tube and oxygen as well as painkillers. I believe he died in relative physical comfort. It may depend on who is working that night, or if the patient has Alzheimer’s disease, 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 fell into a final coma. In addition, his very vigilant geriatric nurse daughter-in-law was at his side, with all of us.

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

It seems that even a carefully crafted advance directive can lead to unnecessary suffering and untimely death.

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

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

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