Four myths about death

Currently I see myths about death and dying in the United States. These myths are very strong and lead to a disconnect between medical personnel and non-medical. The medical personnel talk about end of life and want the answers to certain questions. But we often fail to address the persons deep fears and concerns because medicine sees them as myths, and so there is a disconnect between what the patient and the medical person see as important about the discussion of death.

Here are the four questions and fears:

1. How can I avoid being kept alive on a machine?
2. How can I avoid dying in pain?
3. How can I avoid having too much done, too many resources used, and dying in a hospital?
4. How can I avoid dying of starvation or thirst?

1. How can I avoid being kept alive on a machine?

The myth here is that we can keep someone alive on a machine. We almost never can. Comas are extremely rare. There are a very few people who survive a high spinal cord injury, like Christopher Reeves, and can be kept alive for a period on a ventilator. Or people with a disease that leads to the failure of the breathing muscles: Steven Hawkings with ALS has outlived all predictions.

But for the most part we can’t. I have tried: I have had two patients in 25 years with brain death who had signed organ donor cards. When brain death is established, an organ donor team will fly in to a rural area. Meanwhile, I was to attempt to keep the patient’s body alive. One lived long enough and the other did not. I could not stop the death with machines or drugs and that person was already on a ventilator.

Part of this myth is fear relating to hospital settings. ICUs, intensive care units, frighten people. There are alarms going off and machines with blinking lights and it is brightly lit and quiet and alien. Why? If a person is on a ventilator, they are sedated. Otherwise they will automatically pull the breathing tube out or the urinary catheter or the iv or all of them. It is instinctive. They are sick, may be delirious or injured, they are not in their right minds, they are not logical. So they are sedated. Most of the alarms are rightly ignored by the nurses: most alarms are going off because the patient has moved and the machine is not picking up. The nurses learn to filter automatically which alarms are trivial and which alarms do need attention and are an emergency.

I wanted to see an elderly aunt. When I arrived, my cousin said I couldn’t because she was in the emergency room. I said that I am pretty comfortable in emergency rooms and thought I could talk my way back to see her, since I am a physician. We had to wait in the lobby for a couple of hours, but then they let me back.

Part of the drama and horror that shows up in ICUs is the family’s feelings. Family members may feel guilty or angry or afraid and they often lash out at each other. Families are both at their best and their absolute worst when someone is critically ill. I have a friend who still doesn’t speak to a sibling after their father died in hospice three years ago, because they disagreed so strongly on how he should be cared for. The hospital staff and nurses and doctors and maintenance people and laundry people and dietitians are used to families crying or arguing or even yelling at each other. We try to support the patient and the family. But we cannot make them agree and don’t try.

We will return to the “in hospital” death later.

2. How can I avoid dying in pain?

Wear your seatbelt, wear helmets, don’t drive in blizzards, change the batteries in your smoke alarm, don’t text while driving….

That seems like a joke, but not really. Accidents are in the top ten causes of death in the United States currently. People do die in pain if shot, in car accidents, in falls. If we can’t get to them and get pain medicine on board in time.

When death is coming, the fear is that we will die in pain from, for example, cancer. However, most people that I have seen dying of cancer DECREASE the pain medicine rather than increase. There are at least two reasons. One is that they want to be awake. As the kidneys fail, the pain medicine lasts longer. They may not need as much. If they are in hospice and have family present, my experience has been that they say “Turn it down. I don’t want it. I don’t need it.” They want to be awake with their family.

The second reason is that it really may hurt much less. When people stop eating and go into ketosis, some pain receptors are turned off. This is very interesting. I have been using it in clinic: my patients with osteoarthritis who try a ketotic diet say that the joint stops hurting when they become ketotic. One patient said that when her right hip stopped hurting entirely, she realized that the muscles from the left hip were very sore from limping. “After two weeks, I tried one piece of bread,” she said, “And the right hip joint pain came right back.” So a person with end stage cancer or end stage dementia, who does not want to eat, may have little pain or different pain.

Lastly, the most important pain when there is not a sudden violent death, is emotional pain. We may not want people to feel it, but it is better if we can stay present and let them. Stay present, stay kind, listen, do not shut them off. If we shut them off, it is because of our OWN fears.

3. How can I avoid having too much done, too many resources used, and dying in a hospital?

First, fill out a POLST form: Physician orders for life sustaining treatment. The first question is the one medical people want you to answer: if your heart and lungs STOP, and you are dead, do you want us to try to revive you? If someone is over 80, I don’t want to do CPR. I will break their ribs and if we DO get them back, they WILL have damage. People often say, “Bring me back if I will be ok.” I joke that we don’t have the little turkey pop up that says “Too late. Done.” But it is minutes until brain death. If you want to be revived, your best bet is to die in the emergency room in front of the emergency room staff. They can move very fast. The security guards in Las Vegas are also very very good at putting AEDs on people who drop dead from a big win or a big loss.

Living wills are better than nothing, but they often say “If two doctors agree that I am terminal within six months, no extraordinary measures.” This is entirely too vague. What do YOU mean by an extraordinary measure? A ventilator? Aspirin? An iv? No one has ever defined what an extraordinary measure is.

The other questions on a POLST form ask specifically about resources. Hopefully the medical person will explain a little: what is a ventilator, when would we use it, would oxygen be ok, are antibiotics ok, have you talked to your family about this? The POLST form can’t cover everything but it does give us an idea of what someone wants when they can’t talk to us. And it takes some of the burden off the family: father DID say what he wanted and it is in writing and he talked to his doctor about it. If you are the family, how are you going to decide what an extraordinary measure is?

Now: dying in a hospital. Our culture currently pays lip service to dying at home. Sort of. A survey of Veterans revealed THREE DIFFERENT IDEAL DEATHS. One: the Hallmark death, in hospice, at home, surrounded with friends and family making peace with the world. Two: Sudden death, no warning, no attention. Three: fight to the death. This person won’t go, will fight, a miracle is possible and they are NOT at acceptance. Do EVERYTHING.

And dying in a hospital. In residency in Portland I had two patients dying on my medicine rotation. One was a young man in his 20s, surrounded by family and friends, of HIV. He was in the hospital because that is where he felt comfortable and safe and could get immediate help. The friends asked if our team was tired of wading through a crowd to check on him each day. I replied, “No. I am so glad you are here. I have another person dying, and he has no one, an elderly man. He is alone except for me and the staff.” So we, the hospital staff, are the ones who try to comfort the elderly alcoholic dying, the cancer patient estranged from her family, the lost and depressed and solitary and addicted. And we don’t care what they did to get there, the sins committed, the regrets, the mistakes. We try to help as much as we can. I do addiction medicine in part because I felt so sad watching people with addiction die alone. So dying in the hospital is NOT a failure. Sometimes it is where the person feels safest or they don’t have anyone. And not having anyone is a failure of our culture, not of medicine.

4. How can I avoid dying of starvation or thirst?

When someone is dying of cancer or dementia or another slow disorder, they want to stop eating at some point. Sometimes the family gets them to continue eating and the patient will do so out of love for their family. They have no hunger or thirst. Renal failure sets in and the rising creatinine takes them into a gentle coma and then into the great mystery. This looks like a kind death to me: the brain is quietly sedated and put to sleep by the body, by the rising creatinine. Let them go. We will offer food and drink to anyone, but sometimes they are letting go….let them.

And here is a book I want and haven’t read yet:

Talking about death 2

“But,” you say, having read Talking about death, why should I do a POLST form if I am young and healthy?”

Because of accidents and comas.

How do you feel about comas? Would you want to be fed and kept alive by a machine if there were an accident? Let’s make it an accident where you are the heroine or hero: a bank robber is escaping with money and a child hostage and your best bud trips her (the robber is female) and you grab the little boy and run with him to safety. The ceremony where the mayor pins medals on both of you is really fun but even though the robber was caught, the getaway driver wasn’t. You are leaving the ceremony and a car driven by the getaway wench hits you and you are in a coma…..

The fourth and last question on the Washington State POLST form is the key one for this: do you want long term feeding or not? Would you want short term if you were going to get better? Does long term fill you with horror? Ok, the odds of ending up in a coma are really really really small, but not zero. Most of my patients choose the middle road but some say “No tube feeding or iv feeding EVER!” They may have had family or a friend that were kept alive for longer than they think was right. I do have the rare person who wants feeding and everything forever….and that is ok too. It helps to know that.

Back to question one: for a healthy fifty or sixty or seventy old, I advise them to ask to be resuscitated. That is the default anyhow, to do everything. You don’t have to do a POLST if you want everything done. But if you DON’T, then it is worth filling out and it’s helpful to talk to your family as well as your doctor. And I am often surprised by what people want. It helps me to know a bit more about them as their doctor.

One woman in her upper 80s said, “I don’t want to think about this.”

I replied, “If you don’t want to you don’t have to. But, if you don’t say what you want, your daughter and I will have to guess when something happens.”

She then said what she wanted. In her age group I talk about stroke: some strokes are lethal. Some are not and the person looks horrible. However, they improve after the first 48 hours, as brain swelling goes down. The key that makes a stroke survivable is whether the person can swallow or not. If they can’t protect their airway, they aspirate and get pneumonia.

Think if all our elders knew that, that after the stroke they will improve in 48 hours. Wouldn’t it be less terrifying? And we aren’t going to “unplug” them in the first day, because the amount that they improve is not totally predictable. Nothing in medicine is, really….

I am careful to say to a healthy sixty year old that this form is to be filled out as if something were to happen NOW, this week. Not to think of the form as for being when they are much older and very sick. The form has update slots on the back: we are supposed to revisit it at intervals when a person’s health changes. And people change what they want.

I had a lady in her upper 80s who was on coumadin for atrial fibrillation, to prevent stroke. The family was going through a rough patch with the death of a small child. She said, “I don’t want to take this.” She denied depression but she didn’t want to do the regular blood tests. We switched her to aspirin. Coumadin lowers the stroke risk by 1/2 and aspirin by 1/4.

A year later she said, “I think I want that coumadin again. Things are better.”

Sometimes things are better.

Talking about death

We are not very good at talking about death in the United States, but we are slowly getting better.

I have had families call me in a panic because their loved one’s “Do Not Resuscitate” form was changed to “Do Resuscitate” when the person went into the hospital or went into a nursing home. Often this is because of very little training in discussing end of life code status combined with fear and/or religious beliefs and/or confusion. I have checked with the nursing home and the rumor is that the patient is asked “Do you want to die?” when they are admitted and if they answer “No.” the code status is changed.

I use a POLST form to discuss end of life wishes and plans. Here: The conversation goes something like this:

“Mrs. Elder, you have transferred care to me. I see that you have had four heart attacks, three bypass operations and two cardiac arrests. You have a living will but I would like to discuss what your wishes would be if you got sick or live another five years and are over 100.”

“Talk louder. Are you really a doctor?” says Mrs. Elder.

“Living wills are written by attorneys. They say that if two doctors agree that you are terminal and might die within 6 months, don’t do too much. This has two problems. One is that doctors are not very good at predicting the 6 month thing and the other is that no one ever has explained what “don’t do too much” means.”

“Ok.” says Mrs. Elder. She bangs her walker on the floor. Her son rolls his eyes.

“The most common cause of death is the heart. If someone drops dead, two doctors will agree that they are dead, but what they really want to know is whether the person wants a natural death or wants to be resuscitated.”

“I don’t want to die yet.” says Mrs. Elder. “That new mailman is cute.” She cackles.

“This is a POLST form. It is to go with the living will. The first question is about a person who has no heart beat and is not breathing. They are dead. If your heart stopped, would you want a natural death or would you want us to try to revive you.”

“Bring me back if I’m gonna be ok.” says Mrs. Elder.

“We don’t know that. You don’t have a little pop up thing like the turkey that says “Too late.” If someone drops dead at 40 and we get them back quickly, they are fine. But at 95 if your heart stops, it’s like a stoke and you won’t be fine.”

“I don’t want a stroke. Also I don’t want to wake up with that scar on my chest again. It hurts.”

“Ok, so natural death.”

“Of course.”

“Next are questions if you have a heart beat and are breathing, so not dead.” I am using the Washington State form:
Would you want a breathing machine if you were really sick?”

“No, I had that once.”

“Would you want to be moved to a bigger hospital if you had a heart attack?” We are rural and have a 25 bed hospital. “We can give you medicine but we are too small to have a heart surgeon and too small to have a cardiologist.”

“I don’t like that heart surgeon who did it last time. Stay here.”

“We gave you antibiotics last month. Would you want antibiotics if you were going to get better?”

“Yes, sure.”

“The next question is about feeding. If you were really sick and couldn’t eat, would you let us feed you through a tube?”

“I don’t know.”

“This question is really about comas. Most people are willing to be fed for a little while if they are going to get better, but not long term. Some people don’t want it at all. You are 96 pounds and if you got pneumonia, you might not get better if we didn’t feed you.”

“I want whiskey if I’m dying. A shot a day, that’s my secret.”

“We can request that.”

“No feeding. I’m ready.” She signs the form.

“I will photocopy and put it in your chart and send a copy to the hospital. You take the green copy home and put it on your fridge. Any questions?”

“What is the new mailman’s name?” She grins at her son, who is looking very relieved.

“Remember that we only use the form if we can’t talk to you or if you are too sick to answer questions or if you lose your memory. Otherwise you can change your mind.”

“Ok. Can we go now?”

“Yes. You are so healthy, Mrs. Elder, that I think we can go six months before I see you again. Ok?”

“Ha. I’m healthier than him,” she says, nodding at her son, “He doesn’t exercise. I walk out to the mailbox every day.”

I try to do POLST forms not just on my 95 year olds, but on everyone, especially everyone over 50. It does not cover every contingency, but it really does say to the family that the person has had a conversation and it gives better guidance than the living will. It was developed at OHSU, in Portland, Oregon, which is where I had my Family Practice residency. Hooray for OHSU! The last time I looked at the map: it was in 8 states, but it’s busily spreading all over the United States. The POLST form is designed to be redone every few years as people’s health status changes.

Take the burden off your family and do your POLST form.