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“As a person physically gets closer to the end of life the body begins to shut down,” said Mohana Karlekar, M.D., director of Palliative Care at Vanderbilt. “You eat less, drink less and eventually you stop eating and drinking all together. By this time, you’re not making as much urine or having as many bowel movements. You get sleepier and sleepier. And at some point what will happen is that the amount of time spent asleep is more than the time awake.
“Eventually, you sleep and you sleep and your breathing patterns change… You breathe and breathe and pause. That pause stretches out and stretches out and eventually there isn’t a next breath. That is the natural progression of death.”
Although the majority of deaths follow this natural progression, about 10 percent to 15 percent experience terminal delirium, an agitation that occurs at the end of life. Medications are provided to calm the patients, allowing them to sleep.
“There is a real science to managing someone’s pain, fatigue and insomnia,” added Elam. “We are learning more and more about the anxiety people experience and how best to help them. There is much more science developing around stress management and the molecular biology of stress.”
Another area of scientific interest is the wasting away process often seen in cancer, end-stage organ failure and burn patients. Cachexia causes severe weight and muscle loss due to severe protein and calorie malnutrition.
“Fatigue, loss of energy, decreased muscle and strength make up cachexia,” said Karlekar. “One predictor for survival is functional outcome or performance status. So if your cancer is really bad, but you have great functional status — you can eat, drink, bathe, walk 100 feet — you are going to do better with your cancer and someone is more apt to treat you.
“But let’s say that your cancer is not as aggressive and you can’t get out of bed and your functional status is poor, someone is less apt to treat you.
“If you can find something to treat cachexia … you might be able to make some really big changes and people will feel better. If you can offer a treatment early on in the disease where it can make an impact — whether that is on a patient’s quality of life, treatment or nutritional status — if it makes the patient stronger, then it’s probably worth doing,” she said.
The art
The art of dying has been around for centuries, said Karlekar. Finding what is right for each person requires one thing — listening.
“If you listen to what patients and families are saying about their values and beliefs, then you can formulate a plan that is consistent, that makes medical sense, and is not going to over treat someone,” she said. “But you have to listen and that takes time. And in this day and time, it is a lot easier to order a test and do something than to have that conversation.
“For most patients, it actually allows you to live better,” she said. “Imagine being so worried about what is going to happen at the end of your life that it consumes you. Then you figure it out and you can actually focus on what you want — those things that give you the most meaning.”
Dana Allen, of Nashville, knows what it’s like for someone to live their last days with meaning. She knew when she left Tennessee for a trip to Maine last year with her husband, John, that it was the last time they’d vacation together. His battle with cancer was coming to an end.
“It was a vacation from the chemo,” said Allen. “But we both knew that there was not going to be any more chemo. We never talked about it. Deep down we both knew (it was the end). It was unspoken.
“When he came out to sit with me that last full day of our vacation, I knew,” Allen said. “There was nothing medical or scientific. It was just a feeling I had.”
Throughout their five-day stay, the signs of death were increasing. His episodes of withdrawal grew. He would sit for hours watching TV with his eyes closed. He ate less and less. He grew more fatigued.
“I had read all the books. Right before we left the hospice doctor said to me — ‘You understand that he won’t be coming back with you.’”
John died that week.
Soon after praying with a minister at his bedside, Allen told her husband that she loved him. He mumbled he loved her too. Although they were his last words, he lingered.
Then Allen spoke one last time to her husband of eight and one-half years.
“I told him that his girl was going to be OK,” she said. “He didn’t want to die without knowing I was going to be all right. I would never lie to him. I made a promise.”
Within minutes, John Allen, 67, died.
According to Karlekar, that is a very common scenario.
“You won’t find this information in medical literature,” said Karlekar. “But if you look at it clinically, people need permission to die, just as they need the will to live. Your will plays a very strong role in when you die.
“There are those who wait for either a specific family member to arrive or to tell them it’s OK (to die). Or they wait for news that certain things are in order,” she said. “Then there is a whole group of people who wait for that one moment in time where they get a break from family members. It has a lot to do with their emotional preparation. It’s different ways to control when they die. The human spirit plays a strong role whether you are awake and alert or lethargic.” <<back continued>> |
