Top ten causes of death: US 2020

Top ten causes of death US 2020, according to JAMA, here.

Total deaths: 3,358.814
Contrast total deaths in 2019, at 2,854,838. That number had been on a very slow rise since 2015 (2,712,630) to 2019 (2,854,838). That increase over four years is 142,208 people. Then the death rate suddenly jumps 503,976 people in one year. Ouch. I cannot say that I understand vaccine refusal.

1. Coronary artery disease: 690,882
Heart disease still wins. And it went up 4.8%. It is suspected that people were afraid to go to doctors and hospitals. I saw one man early on in the pandemic for “constipation”. He had acute appendicitis. I sent him to the ER and his appendix was removed that day. He thanked me for seeing him in person. Might have missed that one over zoom.

2. Cancer deaths: 598,932
This is cancer deaths, not all of the cancers.

3. Covid-19: 345,342
I have had various people complain that covid-19 is listed as the cause of death when the person has a lot of other problems: heart disease, cancer, heart failure. The death certificate allows for more than one cause but we are supposed to list the final straw first. I cannot list old age, for example. I have to list: renal failure (kidneys stopped working) due to anorexia (stopped eating) due to dementia. That patient was 104 and had had dementia for years. But dementia is not listed as the final cause. So if the person is 92, in a nursing home for dementia and congestive heart failure, gets covid-19 and dies, covid-19 is listed first, and then the others.

4. Unintentional injuries: 192,176
Accidents went up, not down, which is interesting since lots of people were not in their cars. However, remember that the top of the list for unintentional injuries is overdose death, more by legal than illicit drugs. If there is no note, it’s considered unintentional. Well, unless there is a really high blood level of opioids and benzos and alcohol. Then it becomes intentional. They do not always check, especially if the person is elderly. The number rose 11.1%, which seems like a lot of people.

5. Stroke: 159,050
This rose too.

6. Chronic lower respiratory diseases: 151,637
This went down a little. This is mostly COPD and emphysema. So why would it go down? Well, I think bad lung disease people were dying of covid-19, right?

7. Alzheimer’s: 133,182
This seems to belie me putting renal failure due to anorexia due to Alzheimer’s. I think they actually read the forms and would put that as Alzheimer’s rather than renal failure, because it is not chronic renal disease.

8. Diabetes: 101,106
This rose too. 15.4%, again, probably partly because people avoided going to clinic visits. Also perhaps some stress eating. Carbohydrate comfort.

9. Influenza and pneumonia: 53,495
So this went up too in spite of a lot less influenza. Other pneumonias, presumably.

10. Kidney disease: 52,260
This went up.

And what fell out of the top ten, to be replaced by covid-19?

11. Suicide: 44,834
This actually went down a little. What will it do in 2021?

So what will 2021 look like? I don’t know. It depends what the variants of covid-19 do, depends on what sort of influenza year we have, depends on whether we are open or closed, depends if we bloody well help the rest of the world get vaccinated so that there is not a huge continuing wave of variants.

Today the Johns Hopkins covid-19 map says that deaths in the US stand at 608,818 from covid-19. If we subtract the 2020 covid-19 deaths, we stand at 263,495 deaths from covid-19 so far this year. Will we have more deaths in the US from covid-19 than in 2020? It is looking like yes, unless more people get immunized fast.

Take care.

Oxygen testing

“If oxygen might help with chronic fatigue, as it has helped you,” a friend asks, “how do I get on oxygen?”

Complicated answer.

First of all, one of the things that is not clear, is what recovery looks like. I think I’ve had low grade chronic fatigue for the last 7 years compared to my “normal”. Now, will I get off oxygen? I don’t know. I am hoping for September but it may be that 7 years of low grade hypoxia means I have lung damage and no, I won’t get totally off oxygen.

They have apparently recently made the guidelines for oxygen more stringent. I sort of missed that update, even though I just recertified in Advanced Cardiac Life Support. You now have to have an oxygen saturation that goes to 87% or below. It used to be 88.

Now, you can test this at home with a pulse oximeter. In 2005 after the influenza, I held my saturations but my heart rate would go up to 135. Which means that I walked across the room very very slowly because a heart rate of 135 sustained does not feel good at all. Normal is 70-100 beats per minute. You can measure pulse with just a second hand, number of beats in a minute. For oxygen saturation, you need the pulse ox and it will measure both heart rate and oxygen saturation.

So: measure pulse and saturation at rest first. Write them down.
Then walk. I usually send patients up and down the hall three times then sit them down and watch the pulse ox. In some, the heart rate jumps up. If it’s over 100 and they are getting over pneumonia, I don’t want them back at work until it is staying under 100. Or if sitting they are at a pulse of 60 and then walking it’s 95, well, I think that person needs to convalesce for a while yet. They can test at home.

As the heart rate returns to the baseline, the oxygen level will often start to drop. Does it drop to 87? Describe the test to the doctor and make sure the respiratory technician does it that way and also they should do pulmonary function tests. Mine were not normal.

Now, what if the oxygen doesn’t drop to 87? We are not done yet. What does the person do for work or do they have a toddler? If they have a toddler do the same test carrying the toddler: they sit down, exhausted and grey and this time the oxygen level drops below 87. If they do not have a toddler, do the test with two bags of groceries. Or four bricks.

When I did the formal test, the respiratory therapist said, “Let’s have you put your things down so you don’t have to carry so much.”

“I’d rather not.” I said, “I want to be able to walk on the beach, so I need the two small oxygen tanks, my bird book, camera, binoculars and something to eat.”

“Oh, ok,” she said.

So I did the test with two full tanks of oxygen, small ones, and my bird book and etc. I dropped like a rock loaded. I think I would have dropped not loaded but perhaps not as definitively. Still hurts to carry anything, even one tank of oxygen.

We are making a mistake medically when we test people without having them carry the groceries, the toddler, the oxygen tank. My father’s concentrator is pre 2013. It weighs nearly 30 pounds. Now they make ones that weight 5 pounds. Huge massive difference.

Good luck.

Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VH±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

biotics explained

Are you confused about BIOTICS? Is your neighbor taking more Mysterious Healthy Pills than you? We can help! We are marketers posing as scientists from Mega Super Good For You and the Planet CoreValuePoration! Look! We have white coats and ours are clean!

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Conbiotics: These are BAD FOR YOU! They are sold by the other companies. They lie. They get biotics from prisoners poop. They will turn you criminal. They will make you fight with your mother and disinherit your first born, lie, drink too much and cook meth. You will know they are conbiotics because they are cheaper and not refrigerated. And some of the biotics in their tablets are bacteria! Do you want to take bacteria? DEAD BACTERIA, they don’t even give you live ones.

Antibiotics: THESE KILL PROBIOTICS. BY THE MILLIONS. THESE ARE PASSE, OUT OF FASHION, EVIL AND YOU REALLY DON’T WANT THEM (unless you have strep throat or pneumonia or sepsis, and even then, the antibiotics suck because the sepsis mortality rate is 28-50%, THAT MEANS HALF THE SEPSIS VICTIMS DIE EVEN WITH ANTIBIOTICS, DOES THAT PROVE THEY SUCK OR WHAT?)

UNCLEBIOTICS: Now MEGA SUPER GOOD FOR YOU AND THE PLANET COREVALUEPORATION is developing THE NEWEST AND BEST BIOTICS OF ALL! UNCLEBIOTICS ARE BETTER THAN ANTIBIOTICS BECAUSE THEY ARE MALE AND UNCLES ARE MORE FUN AND RARER THAN AUNTS AND THEY ARE WAY LESS LIKELY TO HUG YOU INTO WEIRD SMELLING BOSOMS, except that uncle that wears the boa and the weight lifter uncle, too many illegal steroids, he has fine manboobs.

SUBSCRIBE TODAY TO OUR MONTHLY POOBIOTIC, WE MEAN PROBIOTIC SERVICE AND YOU WILL RECEIVE FREE SAMPLES OF UNCLEBIOTICS AS FAST AS WE CAN GET THE UNCLES TO POO AND THE RATS TO SURVIVE THE CAPSULES.

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Quota

Quota

honestly
I feel despair
when I try
to think about the new schedule

Twenty four slots
Of 20 minutes
See three people
For 40 minutes
Twenty on the schedule

Unanswered questions
Wake me on Sunday morning
If I am called to a labor patient
Must I make up that clinic face time?
What of holidays?
The clinic is closed.
Night call is nowhere addressed
Will they hire more and more
Who don’t take call
Until I am the last woman standing
Red rimmed eyes staring
Numb with fatigue

What of my nearly deaf patient
Who reads lips
May we take forty minutes?
All the fairly deaf elderly?
New parents, anxious
Questions pour out like
Coins from a jackpot win
What of the tearful brokenhearted
And anxious?
I shrink at the thought
Of crushing their hearts
Into twenty minutes

And what if I’m sick?
(sick leave & vacation all one)
It’s not a holiday if I’m on call
No make-up day off
If I cancel clinic
For illness
Do I make up those days
A quota of patient face days

I am in the factory
The mines
People are the shirts I must sew
The tons of coal I must load
I must meet a quota

Doctors die younger
Our life is measured out
In patients
I won’t let the quota
Kill my love

Aces again

I am singing: “You are coming up ACES!”

Ok, but, hopefully not. Because I am talking about ACE scores, Adverse Childhood Experiences. See the CDC website, this is all based on a ginormous Kaiser study in the 1990s.

Here: About the CDC-Kaiser ACE Study |Violence Prevention|Injury Center|CDC

Yep. A very very interesting topic for a rural family practice physician.

For the Ragtag Daily Prompt: ACE.

Influenza: check your pulse!

This year influenza is bad. My key test in influenza is not a chest x-ray. It is taking a resting pulse and a walking pulse.

Why? Influenza can cause a walking pneumonia. Walking pneumonia is where the lungs are infected throughout and there is tissue swelling. It is different from a lobar pneumonia. In lobar pneumonia people run a higher fever, look sicker, and on the chest x-ray, that part of the lung is white: infection, not air.

In walking pneumonia, the chest x-ray may be read as normal. This is because all the lung tissue is equally swollen. The swelling means that there is less air space. The person may feel ok at rest. They feel exhausted when they walk because the heart must take up the slack for the missing air space, the swollen lungs. At rest this week one person’s heart rate is 84. After walking it is 124. Normal is 60-100, so 124 is like running a marathon: exhausting and hard on your heart and body.

I have patients saying “I was sick two weeks ago and I am still exhausted.” If their pulse is much over 100 after they walk, they cannot work until it comes down. If they work and wear themselves out, the lungs can’t heal. The treatment is rest. If they are at work with a pulse of 114 or 124, then they risk getting a secondary infection in already damaged lungs. They could die.

Check your pulse at home. Count the number of heartbeats in 60 seconds. That is your pulse. Walk around, sit down, and check again. That is the walking pulse. Over 100 is not normal.

This is a bad influenza. The tamiflu (oseltamivir) helps but works best in the first three days of flu. Check your pulse, be seen, rest and get well.

http://www.peninsuladailynews.com/news/three-die-of-flu-on-peninsula-public-helath-officals-say-a-fourth-death-said-to-have-been-in-seattle/

sober garden

For the Ragtag Daily Prompt: garden.

We have beer gardens at many local events. Centrum music, the Wooden Boat Festival. People have to show identification to get into the beer garden and must keep the drink in there.

I want to start a Sober Garden as well as a Beer Garden. Let’s have a substance free area, roped off, for families and those who are choosing not to use substances, alcohol, opioids, tobacco, meth, whatever. At the events with families, the Beer Garden is roped off, but let’s rope both off. Let us have a Sober Garden and have food trucks and drinks and welcome families and welcome people who are not drinking alcohol or using other substances.

Let’s bring children out to the music and let families set a conscious example. There is no stigma if it is a Sober Garden for families and to support the whole community, including those recovering from addiction. Let us make it conscious and attractive.

When we rope off the Beer Garden and check identification to get in, aren’t we sending the message to the youth, especially teens, this is special, you are not allowed. Let us reverse that and have a bracelet for those going in to the Sober Garden. A sticker, a garden for families, a garden for people healing, a garden for making a different choice.

_____________________________________

music by Mike and Ruthy: simple and sober. https://www.youtube.com/watch?v=gsFlHuhDP0A

My garden waiting under snow for spring.
Spring buds in the ornamental plum, with a bird.

Sometimes it takes a while to warm up to an idea. But spring will come and warmth.

Connections between Pain, Opioid use, Suicide and Opioid Use Disorder.

Excellent blog by Janaburson: https://janaburson.wordpress.com/2019/01/14/complex-connections-pain-opioid-use-suicide-and-opioid-use-disorder/

The picture is the tree with berries that the robins are eating, outside my clinic window. They clear it from the top down. Deer come too and stand on their back legs to reach up for berries.

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: https://polst.org/