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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.

http://www.polst.org/programs-in-your-state/
http://www.wsma.org/wcm/Patients/POLST.aspx
http://americanhospice.org/caregiving/coma-and-persistent-vegetative-state-an-exploration-of-terms/

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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: http://www.polst.org/. 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:
http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/PhysiciansOrdersforLifeSustainingTreatment.
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: http://www.polst.org/programs-in-your-state/ 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.

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butt in a sling

….a lot more fun than the original meaning….zip line at a graduation party this past weekend…..

http://kearth101.cbslocal.com/2013/01/30/the-meaning-behind-butt-in-a-sling-other-strange-age-old-phrases/

this seems more likely as the meaning: http://www.merriam-webster.com/dictionary/butt%20sling

and it still gets used https://en.wiktionary.org/wiki/ass_in_a_sling#English

We started way up the ladder….

roseparty 081

….and wondering will the brakes work?

roseparty 095

these photos on my camera by the graduate: Congratulations Rose!

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the kind of people

my cousin’s husband said
I wouldn’t want to be around the kind of people who play paintball
which silenced me as I suppose he meant to as I stared at him thinking that since I was telling him that I had taken my son to play paintball as a celebration of my son getting a 4.0 in sixth grade and we were framing it as a celebration rather than a reward so that low grades would not generate in turn a punishment and I was trying to tell my cousin’s husband about the third round of paintball and I was the only woman there and definitely the only mother there and by then the sharpshooters in camouflage had asked why I was there and I had explained upon which one said “you are a good mom” and so in the third round when my son said that he wanted to be on the opposite team as his mother the guys giggled and we were on opposite teams and I am good at hiding in the woods but was having a bit of trouble with trajectory so everyone on his team was shot but him and everyone on my team was shot but me and I was trying to shoot my son with a paintball in a desultory sort of way since he was peppering the tree I was crouched behind when he ran out of ammo and we walked back to the safe area me with the gun held over my head saying “moms rule” and the sharpshooters in camo said we are going to shoot you next time and they certainly did
and I didn’t say any of that to my cousin’s husband
because I am one of the kind of people who play paintball and so is my son and I realized abruptly when my cousin’s husband said that that I really want to love everyone and so I still send love to my cousin’s husband but honestly I have trouble being around people who divide the world into us and them and didn’t Jesus and buddha and Muhammed all say essentially that god is love and Rumi says that the universe is the Beloved and so everyone is Beloved and we are all part of the one and there is no division and if god is love then there can be no hell
and I don’t really visit that cousin any more
and I still wonder why people want us and them and why people talk about that kind of people and I try to work with every kind of people that comes into my clinic that’s why I became a doctor really because I wanted to understand people and understand love and forgive things that happened when I was very little and thought that really, the big people were insane and loving but not trustworthy and obviously this is a fail in the end because I truly don’t understand how anyone could ever make assumptions about anyone else and ever say that they wouldn’t want to be around
the kind of people