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Advance Directive Warning
Approx. 1:30 Saturday morning, December 18, 2010
“I think I need help!”
Mom was standing outside my bedroom door, panting and writhing in pain. He said he waited an hour before waking me up.
(Backstory: When I arrived last night, Mom told me that sometimes she felt “uncomfortable” at night. Knowing that she had a heart attack a few months ago, I prayed that I would be there when it happened again.)
We called 911 and I gave them the information. They told 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 seemed like 10 minutes, I called back to 911. “They’re at the door,” said the dispatcher.
There were two paramedics and four firefighters, including the captain of the Fire Department. Some gave first aid, others asked about Mom’s Advance Directive. I found it and pointed out that it doesn’t say that he should not be treated.
We arrived at the hospital, a renowned treatment, research and teaching facility. Dr. C. (a cardiologist) and Dr. N., as well as many other staff members, took care of Mom.
They are very worried about his Advance Directive. Again, I pointed out that it didn’t say that he wouldn’t be treated unless he was in a coma, and he wasn’t.
“He is very, very ill,” they said. “What does he want?”
Crying, I told 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-grandchildren are coming to visit next month. She doesn’t want to go anywhere.”
I showed one of the doctors part of his Advance Directive that said he did not want to be kept in a coma or vegetative state with no hope of recovery. “He’s not in a coma,” I said. He looked meaningfully at her motionless form, carried by the machines.
If I had my wits about me, I might say something like, “If they brought in a 20-year-old football player who just had a massive heart attack and you administered morphine, how sensitive would you be?” what do you think he will do. Can you? And can you write him quickly?” But I can’t form these thoughts, let alone express them. I just have a feeling that there is a mistake in the doctor’s reasoning.
They talked about the possibility of surgery to save his life.
I will call my brother, Jamie, and his wife, Shelly (a geriatric nurse). Shelly thought Mom would die without surgery. So are doctors. Jamie and I agreed.
Jamie and Shelly arrive at the hospital.
Doctors decided against surgery. It’s too risky. We agree.
Dr. wants N. to discuss the options right there, in front of Mom. But I’ve read that comatose–or seemingly comatose–patients sometimes stop and die when they hear a negative prognosis.
I say “Not in front of him,” and we go to the Quiet Room. Dr. explained again. C. that surgery is not an option. We agree.
Dr. wants N. to stop medical treatment (IV drugs). He told us about an experience in medical school when the professor made it difficult for the students to breathe, and recounted his horror. He believes that he is suffering and is certain that he “will never regain cognitive function.”
I want him to see his grandchildren and great-grandchildren, some on the way and some here in town. “He doesn’t know them,” said Dr. N.
“Are you sure?”
He was sure.
He spoke more about his suffering. I don’t remember the words, but I think there was some indication that he was in a vegetative state.
Jamie and I gave permission to stop medical treatment because Mom was probably suffering too much and would never regain consciousness. Before giving final approval, I look to Heaven for wisdom and believe the answer I hear is yes.
They kept the same dose of blood thinners but lowered the dose of Mom’s blood pressure medication.
[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 dropped. We gathered to sing and pray. Through her mask, Mom said, “I’m so grateful.”
“Thanks for coming with me,” he said to each of us—Jamie, Shelly and me.
“I love you, Mom” I said.
“I love you too,” she replied.
We read the 23rd Psalm. When we get to “Surely goodness and mercy shall follow me all the days of my life,” joined Mother. (He remembered this later.)
The chaplain sang “Be Thou My Vision,” Mom’s favorite hymn.
We will sing “Amazing Grace” and “Jesus Loves Me.”
I recited 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 apologized through the mask.
“Yes, you can,” I replied. “You just said, ‘I can’t speak very clearly.’ ” He laughed. (Mom remembered this later.)
We watched as Mom’s blood pressure stabilized, then began to rise. My nephew came. Mom thanked him for coming. His sister came. He and Mom chat for a while.
Jamie and Shelly’s friend arrived. They joked about the last time he came to see her in the hospital, and made her lie by the window.
The mask is uncomfortable and no adjustment can make it right. The staff replaced the mask with prongs.
Mom sat down and chatted freely. I was joking. He laughed, and the monitor showed deepening breathing.
He wondered why everyone was so sad (he remembered it later), and… could he have breakfast?
After tea with toast and jam, Mum was moved upstairs to a cardiac unit. My husband, our daughter and our son came. Mom was happy to see them, but sad that she was worried about them. Another one of our girls phoned and she and Mom had a nice chat. Mom was happy, but just disappointed that my brother couldn’t get the family’s Nicaraguan connection on Skype.
He can’t regain mental function… he can’t recognize them.
In the afternoon, he was transferred to another ward. When we were leaving for the evening, Mom said, “I had a great time.”
On Sundays Mom will enjoy many visitors and a crossword puzzle in the newspaper.
Last Monday Dr. A, another cardiologist, rotates. I asked him, “If a 90-year-old man had a massive heart attack like Mom had, would you say that he would never regain cognitive function, just based on his age and the severity of the attack?” attack?”
He seemed surprised by the question. “A complete loss of cognitive function? Did someone tell you that?”
Yes, I answered without elaboration.
No, he replied, he couldn’t predict that. In fact, Mom could be home for Christmas, and should continue to live in the same situation.
He and I enjoyed a Christmas carol concert at the hospital in the afternoon.
That night, he finished proofreading his grandson’s introduction to his Honors thesis. He found some minor mistakes and looked forward to reading the paper when it was finished. Mom wondered if the picture of the man my nephew had written was useful. He found one on the Internet last year, but he couldn’t remember the website. I noticed 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.
he doesn’t know them
On Tuesday a medical student informed us that there was no significant new heart damage from this, Mom’s second heart attack.
Mom was discharged on Wednesday afternoon. He delivered thank you cards to the cardiac ward and the Emergency Department.
Pity the poor Emergency clerk. Although Mom gave her the card in what was clearly a greeting card envelope, the girl thought it was her Health Care card. (Do you think they don’t get a lot of thank you cards in Emergency?)
My concerns with the Advance Directive, at least as we write it, 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 our loved ones are. would like to.
2. In a slightly different case, I had a friend who watched helplessly as his father breathed. Apparently the staff interpreted an earlier oral instruction not to use a feeding tube to mean “no intervention”; so they ignored my friend’s request to give him oxygen. She finally called 911 and paramedics gave her father oxygen at the hospital. He died a week or so later, apparently quite comfortably.
We will never know if this man was allowed to suffer as he did (no evidence, obviously) because the staff really believed that no feeding tube meant no oxygen, or if they just felt that he is an old man with advanced Alzheimer’s whose time has come.
My own father died in the same palliative care facility. He was prescribed “unheroic measures” and given a feeding tube and oxygen as well as painkillers. I believe he died of physical comfort. Maybe it depends on who is working that night, or if the patient has Alzheimer’s, or who they are with at the time. Dad’s mind remained clear and he was able to communicate verbally and in writing until he finally fell into a coma. Also, his very careful old nurse daughter-in-law was at his side, along with the rest of us.
I once spoke to a nurse who said she refused oxygen to patients who pointed to the mask, clearly asking for it, because of prior instructions. He said he just held these people in his arms and tried to comfort them as they died.
It appears that even a carefully written 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 full contact information to make timely decisions.
In any case, we should be very careful if our loved ones cannot speak for themselves.
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