For the Ragtag Daily Prompt: mystery.
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: https://polst.org/
I am reading The Female Trickster: The mask that reveals, by Ricki Stefamie Tannen.
Regarding Mnemosyne, she writes: “The power of memory was recognized in Ancient Greece by the goddess Mnemosyne who ruled over the Elysian Fields. The nine daughters of Mnemosyne and Zeus are the muses, with Thalia, the muse of comedy imaged with a Trickster’s mask as she playfully composed comedy and ironic poetry. The muses were women unto themselves. According to the myth, upon death a person makes a choice to either drink from the river Lethe or the spring of memory. If you drink from Lethe you forget your pain and all the lessons of your life and are reborn again on earth. Those who choose to drink from the spring of memory go to the Elysian Fields, where there is no strife or pain. The myth tells us that the path to psychological integration comes from a willingness to value and interact with memory. Those that repress memory are doomed to repeat it, over and over again.” (pp72-73)
This seems apropos both to my personal and professional life and also to US culture. Our President speaks like my stage IV substance abuse patients. He says things that are obviously lies, obviously not true, obviously refutable and yet to all appearances he believes his own lies entirely, even when he contradicts himself. He manufactures his own reality and just laughs when someone else disagrees. But my substance abuse patients crash: they eventually find that they are isolated with their own lies when they become so fantastic and bizarre that no one believes them any more. We are watching that play out.
Re my personal life, I think of my maternal aunt’s memorial. I wrote two memories for the memory book. One was about my father saying that she had perfect pitch. I did not know what perfect pitch was when I was little, but I knew from my father’s voice, the respect, that it was special and important. That he was envious. That he admired it. The second was about my aunt and uncle’s divorce, that I had seen them as a unit and liked both of them better when they turned into individuals.
My cousins wanted to use the first memory but not the second. They said that family wouldn’t like it. I thought about their request and finally said no. Use both or neither. They chose neither. And this pretty much illustrates why I have very little contact from a large part of my family. I want to remember the whole person, light and dark, love them all. And that is not what that part of my family wants. An old family friend has not spoken to me about my sister since my sister died 6 years ago. I asked her directly about it a few months ago. She wants to talk to me “only about happy memories of your mother, father and sister.” I respond, “Why don’t you ask me what sort of relationship I want?”
She was and is silent. So I am too.
It’s not a lack of love but it’s a difference in philosophy. I think it is crazy to whitewash the dead: how will our children understand their own dark feelings and impulses and mistakes if they think that their ancestors, grandparents, parents are angels? Why aren’t we honest as a culture? How can we expect our children to be honest with us when we lie to them? The curated lives on Facebook are an abomination, false, lies and look what we have in the White House.
I like the dark as well as the light. If we truly love everything in the universe, how can we not love the dark as well as the light? If each of us owned our dark sides, our dark impulses, the myth says that we will not enact them over and over each generation. Owning the dark, acknowledging our own dark does not mean that we have to act it out in the world and then lie to ourselves and others.
And now I want coal for my stocking: just a small piece, to remind me that I have not always, or will I ever, only be good.
For Wordless Wednesday.
What do you see on the surface?
What do you dream of in the depths?
What do you show on your surface?
What do you deflect or reflect?
For the Ragtag Daily Prompt: grateful. I have a series of stories about my son and daughter. My son is the extroverted feeler….
The Extroverted Feeler and the Terminator
From the time the extroverted feeler is 3.5 until he turns 7, we live in Colorado, in Alamosa.
Alamosa is isolated high desert, in the San Luis Valley, at 7500 feet. We are surrounded by mountain passes, the lowest over 9000 feet, to the south. The San Luis Valley is named “Land of Cool Sunshine”. We have over 300 days of sun a year, but the temperature drops in this high desert valley every night, about 30 degrees. One day a fellow doctor announces that we’ve had a record high at night in the summer: 56 degrees. The locals complain about a heat wave when the day time temperature gets to 80.
My husband will talk to anyone, anyone and is interested in everyone. We get to know a German man, younger than us, I think through the gym.
He flies back to Germany to see family. Alamosa has a one gate airport and is really expensive to fly out of. He drives 250 miles, to Denver, to save money. Over a pass that is 10,000 feet plus.
He returns and is driving home.
He wakes up in a hospital. When the ventilator tube is removed.
We are visiting and he tells us about it. “When I woke up, they asked me what my insurance was.”
I said, “It’s in my wallet.”
“Where is your wallet?”
“In the glovebox. My truck.”
And then they show him a photograph of his truck.
He fell asleep and rolled his truck. Multiple times. There was no glovebox. Really there was not much left except bits of frame and wheels. And he’d rolled it about 17 miles from home. He almost made it the 250 miles. It was awful. Horrifying.
We are talking to him at his house a couple of months after the accident, when he is finally home. He was lifeflighted back to Denver after the accident. He’d broken an arm and his leg in multiple places and rib fractures and at home still has metal rods going into his arm. External fixation, holding bits of bone together.
My son is six. He keeps looking at our German friend and looking up above him.
Our friend notices. He is sitting in an armchair. Right behind him on the wall is a poster of the Terminator. Our friend is big and blond and has a Terminator build.
Our friend grins at my son when he realizes what the extroverted feeler is looking at. “Yes, that’s me. I am the Terminator. Part metal and part human.”
We laugh with him, glad that his sense of humor has survived….
…and had my son seen the Terminator? I suspect that he had, when I was off at work. His main sitter was a family across the street from us, a couple with teenagers. He loved hanging out with the teens. I think he got to watch a lot of movies that I didn’t know about….Our friend still had a bit of a German accent which would make it all the more compelling….
The photograph is my sister dancing with the invisible spirits… no, really we are on a road trip in the 1980s and stop for a hackysak break. She is gone from cancer.
For the Ragtag Daily Post: past.
This is my sister and me in early 2012. She died on March 29, 2018, from breast cancer. She was 49.