augmenting a living will

For the Ragtag Daily Prompt: anticipate. Anticipate can mean thinking ahead.

I wrote this in 2009 under the title “Better than a living will.” I think both living wills and POLST forms help families. Do you have one?

A living will is better than nothing, but unfortunately they are written by lawyers and don’t answer key questions. The number one cause of death in the United States is heart disease. The living will usually says “if two doctors certify that I am terminal within six months, don’t use extraordinary measures.” This has three main problems. One is what constitutes an extraordinary measure? Two, doctors are usually somewhat in denial and aren’t very good at saying when someone has only six months to live: for hospice people are often referred within days of death. Three: the most common cause of death is heart disease. Think about heart disease: if you are having a heart attack, the two doctors haven’t a clue whether you are terminal in the next 6 months. Actually your heart could stop in the next 5 minutes and then they would be very comfortable saying that you are dead, but the real question is “Do you want a natural death?”

People say they want a natural death but when confronted with a form, they often are a bit squeamish. In the state of Washington we have a POLST form: Physician Orders for Life-Sustaining Treatment. This is much more helpful and practical than the living will and it is meant to augment it, not replace it. It has four questions. The first is “Patient has no pulse and is not breathing.” This means that the person is dead. Does that person want an attempt at resuscitation? Check resuscitate or do not resuscitate. I ask if people want a natural death and people agree that resuscitation is not natural. Also, if someone is in their 70s or older, if the resuscitation is successful (mostly not) they are likely to have some brain damage from lack of oxygen. People often say, “Well, bring me back if I’m going to be okay.” I say that unfortunately our higher power has not provided us with a little pop up thing like roasting turkeys have that says “Done.” We really don’t know. We may have opinions, especially if the person is 40 and otherwise healthy versus 83 and has had a quadruple bypass and died three previous times. We have 8 minutes to bring someone back, so if you want to be resuscitated, die in the emergency room. The odds are much better. Also, most of the security guards at Las Vegas casinos have brought back more people than I have, because they have the automatic defibrillators and they are quick to put them on when someone wins a jackpot, grabs their chest, and keels over. If someone asks what I would do if I were them, I do answer. It depends on age and health. As a doctor I want to bring someone back if they are reasonably healthy and there is a decent chance. I don’t really want to do CPR on 90 year olds because it doesn’t work and their ribs break. Ick.

I once was doing a form with an elderly couple. The husband had already had more than one heart attack and he had been resuscitated from a cardiac arrest once already. I asked about a natural death and if he wanted to be resuscitated again and he said, “No, I don’t want that.” His wife elbowed him, “Yes you do.” He said, “I do? Why?” She said, “You have to stick around to take care of me!” He said, “Oh, okay. Yes, I do.” He WAS taking excellent care of her: she had by then had “end-stage” emphysema since she had come to our clinic 12 years earlier. I asked the pulmonologist how that could be and she said, “Some people are just wrapped in cotton wool by their families and they can stay around for years.” I don’t mind if someone wants to be recusitated even if I think it’s medically futile, because most people make sensible choices. If someone is really frightened of death, at a certain point no doctor can keep them around if the body has stopped working. There are really very few cases like comas or brain injury where someone can be kept alive on a machine. It is extremely rare.

I was discussing the choice with a woman in her 80s and her daughter and the 80 year old said, “I don’t want to think about this.” I said, “It may be uncomfortable to think about, but if you don’t tell me and your daughter what you prefer, we would have to guess. We don’t want to guess and we would probably err on the side of doing too much.” She grimaced, but she did make the decisions. The POLST form and living will are only used when we can’t ask someone, so a person who can talk can change their mind.

Question two is “Medical interventions”, asking how much intervention you think you would like. There are four levels on our revised form. The most interventional is defibrillation (shock), intubation (ventilator) and CPR. Since I live in a rural area, I also have the luxury of asking whether people want to be transferred to a big hospital. I explain that I can use medicine for a heart attack, but I don’t have a heart doctor or surgeon and I can’t do stents or surgery or bypasses or anything besides medicines and oxygen. Sometimes being rural protects people who don’t want much intervention, since the cardiologist and pulmonologist and gastroenterologist aren’t down the hall. Who would refuse to be transferred? A man who had two previous heart surgeries said, “I don’t want to wake up with that scar on my chest again. It hurts.” A frail man in his upper 80s had pneumonia and a tricky heart and kidneys. We said that we were family doctors and a cardiologist and nephrologist and pulmonologist would no doubt do more and they could do some monitoring that we couldn’t. He said, “Do the best you can for me here. I trust you and my family is here and I will either pull through or I won’t.” Four days later we told the family that he wasn’t. If we protected his lungs and heart from too much fluid, his kidneys failed more, and if we helped his kidneys, he couldn’t breathe. We changed to comfort care and he was surrounded by his family. I think that we all felt comfortable that we had given him the most respectful care possible and had honored his wishes. The second most interventional choice on the form is “All care above and consider oral/nasal airway, bag-mask/demand valve, monitor cardiac rhythm, medication, IV fluids.” The least interventional is comfort care only: “Oral and body hygeine, reasonable efforts to offer food and fluids orally, medication, positioning, wound care, warmth, appropriate lighting and other measures to relieve pain and suffering. Privacy and respect for the dignity and humanity of the patient/resident. Transfer only if comfort measures fail.” I like the thoroughness of the comfort measures.

The third question is “Antibiotics”. Three choices: no antibiotics unless needed for comfort, no invasive(IM/IV)antibiotics or full treatment. Who would choose no antibiotics? Sometimes someone with end stage cancer or a very disabling disease, like Lou Gehrig’s. Someone with a terminal illness who is not going to get better and is ready.

The fourth question is “Artificially Administered Fluids and Nutrition.” Three choices again: No feeding tube/IV fluids (provide other measures to assure comfort), no long term feeding tube/IV fluids (provide other measures to assure comfort), or full treatment. Most people choose the second. Most people would like nutritional support if they have a reasonable chance of getting better. An elderly frail person with pneumonia sometimes needs iv feeding, or after surgery or after a bad accident. Most people do not want long term feeding by iv or tube if they are in a coma or have severe brain injury to the point where they can’t even eat.

I am very happy to have the POLST form and it is an excellent augmentation to the living wills. It is very comforting to families as well. If a widowed mother has discussed her decisions with me and signed the form, then it doesn’t fall to her three children to make decisions about how much care to give. She has left them and me a map and guidelines and we try to follow them as best we can. We are not left with the fear that maybe we did too little and that we should have done more. The hardest decision with a loved one is when to stop intervening.

I want the POLST form to have one more section. Question five: “Memory loss”. If you have lost your memory to the point where you no longer recognize family, you have forgotten personal hygiene and toilet training, you may not even be able to speak any more, do you still want other things treated? My answer is no, for me. Too many of our hospital patients are frail, elderly, demented and the hospital confuses them. They often call out or cry or scream at night because it is frightening to be in another place and they don’t like having their blood drawn. Sometimes we have to drug them or use restraints in order to treat the pneumonia or urinary tract infection. I really wonder how ethical it is. The problem is that by the time they have lost their memory, they can’t really say, “no, don’t keep treating me.” Except for one woman. I have one lovely woman who has been at our nursing home for more than 4 years. She realized that she was losing her memory and said to her husband, “I don’t want any drugs, no ivs, no feeding tubes ever. And I never want to go to the hospital again.” He visits her every day and talks to her. Sometimes she won’t let me examine her on my routine visit, but that is okay. Once she ran a fever of 102 for two days and didn’t eat or drink anything. I checked with her husband and he stuck with her wishes. The fever went away and she got better. I am so happy that she doesn’t have to have medicines or any blood draws or anything that she doesn’t want. Another woman told me that she’d gone to our hospital family group on death and dying. Her husband had lost his memory and was in a nursing home, having gotten to the point of not recognizing her and not remembering toilet training. She said that the group said, “He’s not dead.” and weren’t very welcoming. She said, “They don’t understand. He’s left his body and all I have is the live shell. He’s really gone and he left slowly, bit by bit. They don’t understand that the part that was him IS dead.”

I don’t think that doctors are terribly good at doing POLST forms with people. For a while I thought it was because my partners were younger than I was. Then I moved to a clinic where two doctors had left and they were both older than me. They had lots of people over age 65 and practically none of them had POLST forms. I’m not saying that people under 65 should not have a form. They really should, especially if they care about that coma scenario. But I REALLY think that people over 65 should have a chance to address this. Our form is bright green and after it is filled out I scan it into the computer and then the owner is supposed to put the original on his/her refrigerator, where the ambulance crew knows to check for it. Someone still might end up with a ventilation tube temporarily, if they become unconscious in a public place and the crew has no guidance. They too have to err on the side of doing more rather than less. I theorize that doctors’ discomfort with the POLST form stems from a mostly unconscious idea that their job is to “make people better.” I have been interested in end of life issues since medical school and it occurred to me that if I thought of my job as to “save” people or keep them alive, then I was going to have a 100% failure rate, because actually everyone dies eventually. Instead I thought that my job was to help as best I could with a good life and a good death. It is turning out that no two people define a good death in the same way. It is entirely individual. My job turns out to be partly about telling people and families when I think death is approaching and helping them define their good death.

To see if your state has a POLST form:

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.