Vast and clear
Category Archives: death
Wean yourself
SoFarSoStu has tagged me for the three days, three quotations and tag three other people. This is day three, only I am a day late.
“The rules are to post 3 quotes over 3 days and nominate 3 bloggers each time to carry on with the challenge.”
Today I choose Rumi’s phrase “Wean yourself” and post his poem. This is one of my two favorite Rumi poems.
Wean yourself
Little by little, wean yourself.
This is the gist of what I have to say.
From an embryo, whose nourishment comes in the blood,
move to an infant drinking milk,
to a child on solid food,
to a searcher after wisdom,
to a hunter of more invisible game.
Think how it is to have a conversation with an embryo.
You might say ‘The world outside is vast and intricate.
There are wheatfields and mountain passes,
and orchards in bloom.
At night there are millions of galaxies, and in sunlight
the beauty of friends dancing at a wedding.’
You ask the embryo why he, or she, stays cooped up
in the dark with eyes closed.
Listen to the answer.
There is no ‘other world’
I only know what I have experienced.
You must be hallucinating.
_____________
I love this poem. To me it’s about our human development and I love that we go from a searcher after wisdom to a hunter of more invisible game. Have you ever had the feeling that you have figured some part of your life out, that aha! moment? Smooth sailing now, you think…. only to find out that new challenges present.
I use this poem in clinic. When I am talking to a new patient I have to find out where they are, what some of their medical beliefs are, what their level of education is, what their prior experience with allopathic medicine is, do they see a naturopath, are they taking ANY pills? Prescription, over the counter, alternative, herbal, homemade? I read Rumi’s poem as a discussion about our levels of development: we come out of the dark to be an embryo. Where do we go from there? I have to understand at least some of my patient’s background in order to communicate with them: I have to meet them halfway. Sometimes I fail. Sometimes my doctors fail…. we experienced that when my mother was in hospice. We were not given instructions for how to take care of her nasogastric tube at home…. and it got blocked. I think that the inpatient nurses made assumptions and the hospice nurses may have too… or just didn’t know.
This poem also relates to how my thoughts about healing and health keep evolving. Currently I keep reading on the internet and hearing from patients that they want a stronger immune system. There are all sorts of “immune system boosters” being sold. I think this is interesting and I think it is a wrong approach. Why?
I have gotten seriously ill four times. Each was triggered by severe stress in my life: mononucleosis at age 19, influenza in 2003, systemic strep A in 2012 and systemic strep A in 2014. So… do I think that my immune system needs boosting? No. When I got symptoms in 2014, my thought was “I am so stupid.” My father had died in 2013. His will confused me, the house was full of his things, my mother’s things, my sister’s things, my grandparent’s things, all dead. I would work in clinic and then go out there and try to get things done and mostly sit and cry. I did deal with the estate, but what is wrong with this picture?
I ignored what I would tell a patient to do…. I did not take time off to rest and to grieve and to take care of myself. Rather than a failing immune system, I pictured my immune system marshaling troops. “She won’t rest. We are going to have to take her down AGAIN. Won’t she ever learn to listen to her body? When will she learn to REST? Let’s see, who do we have to knock her down…. ah, strep A! Great! Here, the door is open, take her out.”
And boy howdy, did it. I was out for ten months and ten months later am still on half time work. And I could have kicked myself! How stupid I am! If there is a major emotional loss in your life, cut back and rest and take time to let yourself heal!
So when people say, “I need an immune booster,” I wonder. I wonder what is happening in their lives, what their level of stress is, are they taking care of themselves. I worry that our culture thinks that we just need the right combination of supplements and then we can keep going and drive our bodies into the ground, instead of stopping and saying: “Oh. I am really cumulatively tired. I really need to rest, and sit at the beach and stare at the waves, or lie on the couch and read a silly novel, or just have a cup of tea and do nothing.” I don’t really like pills. I think that pills are often a band aid on a deeper wound than we admit. If I had rested, I would not have needed high dose penicillin: though I am deeply grateful to have another try at healing and health.
And three people to tag to do the three days of quotations if they so choose… everyone may be too busy at this busy time of year:
The pink edged cloud looks like a giant paramecium or other bacteria, up in the sky….
Leaver III
I have subsided back to where I was
before I fell for you
before I fell
you said, thoughtful, meticulous and shy
I am quiet, thoughtful, meticulous with patient charts
I am not shy so much as lonely
and mistrustful
I don’t trust many people
my small child self still loves you
but it’s a child love
and she knows you’re leaving
everyone has left her before
so she is very sad
everyone but me and the Beloved
so not everyone
but you are the first not me
that she opened up to
so yes, shy
she is terribly shy
she hid for years under rock
bedrock
in my soul
now she and I and Beloved
are walking hand in hand
in the gardens of my mind
thoughtful, meticulous and
shy
the photo is me, my grandmother and my father
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/
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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