Prolonging Death

Prolonging Death at the End of Life By Theresa Brown, R.N.


Before I became a nurse I taught English at Tufts University. I always had my students read a short story called “The Ones Who Walk Away From Omelas,” by Ursula K. Le Guin. It’s a story about a beautiful city called Omelas, filled with happy, prosperous people and their children, whose lives are untroubled by sadness or pain.

But there’s an ugly secret. For Omelas to prosper, one child must live in a small, dank, windowless basement room, undernourished, fetid and neglected. It’s a killer story, and I had my students read it so we could discuss how a society’s achievements sometimes can’t be separated from the misery of others.

We recently had a patient on my hospital floor who painfully brought to mind that suffering child and the story of Omelas. He was young, in his 20s, and had undergone an allogeneic stem cell transplant as the only chance of curing his cancer. He had many of the more severe complications that can occur with this treatment. A virus had turned his urine red with blood. His transplanted cells attacked his own body, leaving him temporarily blind and causing his skin to age unnaturally. His liver was slowly failing. He had almost constant diarrhea and for long periods got his only nutrition intravenously.

For months he stayed on our floor, slowly getting worse. In the end he couldn’t live without constant transfusions. Every time he stood up he leaked blood. Then his mind started to fail, too.

His doctors continued to throw one last-ditch treatment after another at him. Not one of them made a real difference in the patient’s condition, and each came with its own set of potentially dangerous side effects. Finally, and against the express wishes of at least one of his doctors, his parents decided to stop all medical care. Soon after they watched their son die.

Scenes like this are all too common in U.S. hospitals today. That is why proponents of health care reform call for provisions that would encourage patients to talk about end-of-life treatment long before they get there. For this patient, a lot of money was spent on care that made him worse when it could have been used to make someone else better. But more than that, we prolonged his suffering, racked his body with one toxic treatment after another, and held out false hope to him and his parents.

Taking care of this patient also made some of the nurses on the floor yearn for a more humane job. As one put it, “This is torture.”

Many of us found it hard to come to work. The young man wasn’t my patient, but we all knew him and his parents by sight, and knew their story. As time passed I began to feel deeply ashamed of what we were doing to him. The professional label for the feelings we nurses had is “moral distress,” the anxiety, fatigue and hopelessness that providers experience in the face of medically futile care.

The aggressive treatment reminded me of Omelas. In this case, the shining city was the edifice of modern cancer treatments and modern medicine in general.

Medicine today achieves great things, but too often when patients have no hope of surviving we use technology and drugs simply to keep people alive. Those racked bodies give us the peace of mind that when our time comes “everything will be done,” and we will get our own chance at a miracle. This patient’s suffering was one way, for the doctors at least, to keep the dream alive.

He was charming, friendly, good-looking; everyone wanted him to get better, to live. But believing that we could save him did not make saving him possible.

Ms. Le Guin’s short story ends by explaining that a few residents of Omelas become so distressed to learn of the suffering child that they decide to leave the shining city, never to return.

It’s estimated that as many as 15 to 25 percent of nurses quit their jobs as a result of moral distress, also never to return. We do such good work here, and in truth I mostly love my job. I don’t want to be among the ones who walk away from Omelas.

Remembering My Mother

It's two years today that my mother passed away. I still think about her everyday. I still miss her deeply.

She was such a vibrant, fascinating woman! She traveled the world, lived in Germany, Australia and Singapore.

She was outrageous, audacious, hilarious and courageous.

She was an artist and a writer. She spent her time here on earth questioning, examining and contemplating life, death, and everything inbetween.

A one-woman discoverer.

I love you forever, Mother.

Happy Birthday to Me

Happy Birthday to me.



I'm 51 years old, or 49 if I count backwards, Katharine Hepburn style.

Sometimes I feel every inch my age, but mostly I still feel youngish.


What have my 51 years taught me?

Never say never.

Anger is destructive.

If you don't know what to do, don't do anything. Sometimes letting a situation play itself out is the best thing. Sit on your hands and keep your mouth shut.

Is there a purpose to everything? Sometimes. Mostly though, it's caused by human stupidity frailty.

Why do bad things happen to good people? Because we're all in the same boat. Good people just feel better about themselves and spread that goodness around.

Flossing your teeth is essential and don't forget to brush your gums as well as your teeth!

Get out of your rut and try new things. Even if it means dragging yourself out the door kicking and screaming.

Practice being kind every day.

Don't freak out. People will talk about you if you freak out.

Trust your intuition. Take your time. Get some sleep. Eat chocolate.

I am.

An over-exposed picture of me that turned out kind of cool!

some don't take their pills
others want more
some want to stay insane and others
to forget they are
I just write I am I am I am

-Leonardo Alishan-

Life is going well. I went through a bout of depression a while back - well, it was rather a long bout - over a year, at least, but it took me some time to realize that not wanting to get out of bed in the morning and not finding anything in my life about which to feel happy were tell-tale signs that things were not as they should be.

A visit to the doctor resulting in going on an anti-depressant fixed me right up.

Brain chemicals can get seriously out of whack. There's no shame in treating that.

I'm happy to say that I feel a whole lot better about my life now.

My job is going well. I learn something new everyday and there's never a dull moment. Being a nurse makes me proud and nurtures my soul in ways I can't describe.

Helping the sick is extremely gratifying. Talking to the patients, getting to know them, listening to their stories (never boring), and trying to make a difference for them - as simple as bringing a cup of coffee and as complicated as saving a life - is what fulfills me.

Holding the hand of someone who is about to die; someone with a terminal disease who has chosen not to have extreme measures taken, and being present with them in those last days, is a sacred honor.

I learn something from every patient. I learn about life, death, love, fear, anger, joy, and the beauty of the the human experience.

I have a wonderful son, a loving and supportive family, and friends who are cherished in my heart.

I am blessed.

Poetry

The Crystal Gazer

I shall gather myself into my self again,
I shall take my scattered selves and make them one.
I shall fuse them into a polished crystal ball
Where I can see the moon and the flashing sun.
I Shall sit like a sibyl, hour after hour intent.
Watching the future come and the present go -
And the little shifting pictures of people rushing
in tiny self-importance to and fro.

- Sara Teasdale

I love poetry. I love poetry by women. It took me a while to find this one by Sara Teasdale - (thank you Google.)

I think I was around 15 years old when I first started to write poetry. I have no idea what prompted me. No one else in my family wrote poetry, and it was never a topic of conversation. In her later years, my mother wrote poetry, too.

What is it about poetry that it provides a method of 'release'? It's a way of expressing something that touches us, impacts us, in a creative, sometimes allegorical manner. It's a picture painted with words.

Creativity - An original means by which humans relay their responses to inner and outer experiences. (I just made that up, but it sounds good to me.) Dictionary.com describes it thus: "to create meaningful new ideas, forms, methods, interpretations." (That's good too.)

For me, it's a way to express an emotion. A catharsis, a celebration, a tribute or a purging. That's probably universal to all poets.

Even chickens.

Ming

Ming is five years old today! Happy Birthday Ming!

Nursing Shortage

The average age of nurses is fast approaching 50! I'm 50 (still can't wrap my mind around that!) so I'm in the statistical cohort exactly.

On reading some articles about the issue of a huge number of nurses approaching retirement or moving to jobs away from the bedside, and not enough new nurses to take their place, it seems a general consensus that retention of the older nurses is a hot topic.

The big buzz is that older nurses are actually more valuable right now (and probably always have been) due to their wealth of knowledge and experience. Given that fact, employers should be looking to increase wages for the experienced nurses as a means of retention. Wouldn't that be great!

But alas, the economy is not cooperating at the moment.

What will happen when more and more experienced nurses leave the bedside? I hate to even speculate. I don't think I need to spell it out.

What about recruitment of younger nurses? How many are entering the profession now?

I read an abstract of a study done on young people's perception of Nursing. It boils down to this: "The majority of young people make a career choice without regard for salary, and base their decision on interest and enjoyment or a desire to help people. The findings indicate that although young people expressed admiration for the work of nurses, this was rarely matched by an envy of nurses, or a desire to become a nurse themselves." Career desirability: young people's perceptions of nursing as a career." (Hemsley-Brown & Foskett.)

Interesting. Obviously work needs to be done to promote a better, more enviable portrait of Nursing as a career. I'd like to see that. Truly, the image of Nursing as a profession by the general public is woefully skewed and fraught with stereotyping.

As a profession, I'd say we'd do well to focus on these issues with more gusto. Or else.....we'll see this decline -

Ironically, it's even difficult to find a non-stereotypical image of the Nursing decline.

Karma

I had a thought as I drove home from work last night. The notion that flew into my head was that nurses must have had bad karma in their previous lives.

I mean, look at what we do for a living.

I had to catheterize several patients yesterday. Putting a tube into someone's urethra can hardly be catagorized as fun.

I've had to give enemas countless times, dress wounds that could make any normal person run out of the room in horror, lift and carry patients from one place to another, suction gunk from mouths and throats, and the list goes on.

But, then again, maybe it's not bad karma in a previous life, but good karma.



Though, I must say, I've never had my hand kissed. *grin*

A New Day

A New Day Has Come!

World leaders across the globe are celebrating Barack Obama's presidential election.



From Palestinians in the occupied West Bank... "He stated clearly that he is against war and the man seeks peace!," Maha Ibrahim exclaimed.

Beijing, China: "Obama! He is going to improve the economy," Wan Guocheng said.

British Prime Minister Gordon Brown praised Mr. Obama as a true friend of Britain. "This is a moment that will live in history," Mr. Brown said, "As long as history books are written."

Russian President Dmitri Medvedev said he expects to develop a constructive dialogue with Mr. Obama.

In Afghanistan, President Hamid Karzai praised Mr. Obama's election. "I applaud the American people for their courage," Mr. Karzai said. "And for the great morality that they showed."

Arab League Secretary General Amr Moussa said Mr. Obama's victory brings hope for peace in the Middle East.

French President Sarkozy congratulated Obama on a “brilliant” election victory.

Israeli Prime Minister Ehud Olmert said the two “agreed on the need to continue advancing peacemaking, while safeguarding Israel’s security.”

Iranian President Mahmoud Ahmadinejad congratulated Obama on his election win in a letter, — the first time an Iranian leader has offered such wishes to a U.S. president-elect since the 1979 Islamic Revolution.

Australia’s prime minister Kevin Rudd spoke by telephone with Obama to congratulate him on his historic win.

Obama also spoke with Canadian Prime Minister Stephen Harper, German Chancellor Angela Merkel, Japanese Prime Minister Taro Aso, Mexican President Felipe Calderon, and South Korean President Lee Myung-bak.

Today, for me and the whole world, marks the beginning of true hope. Congratulations, Mr. President. The world stands with you.

The Difficult Patient

If you work in a hospital you are painfully familiar with the difficult patient. (With the exception of babies who haven't yet the life experience to develop various psychological quirks or the voice to express same.)

The difficult patient is the guy who barrages you with insults every time you enter the room. It's the woman who puts on her call-light every five minutes and doesn't really need anything. It's the elderly gentleman you don't want to get near because he brazenly gropes you or insists you hold his urinal for him even though he has full use of his hands. It's the patient who finds something to complain about no matter what you do or don't do.

There have been books published on the subject of the difficult patient. That's because the phenomenon is pervasive. It's not something they teach you about in school. At least, not when I was in school. It's a conundrum for the caretaker to be lashed out at for being - well, the caretaker! There's some sort of cognitive dissonance in that scenario.

I've done some reading. I even bought a book on it. Most of the literature focuses on the physicians' dilemma in dealing with the difficult patient. The issue impacts nurses much more. The nurse is with the patient for long periods of time. They are the one perpetual 'constant', going in and out of the patient's room for eight, twelve or to up to sixteen hours at a time.

The difficult patient drives the nurse away from the bedside. He/she causes the nurse to want to give only the minimum of acceptable care. Even when nurses give report to the next shift, they warn the oncoming nurse about 'the difficult patient', setting up friction in the nurse-patient relationship from the start.

This friction leads to a kind of patient abandonment, so to speak. Emotional and physical abandonment.

What makes the difficult patient difficult? The first obvious reason is being in the hospital. Who has a good time in the hospital? They're sick. They have lost a measure of control in their lives, by virtue of their bodies failing and by being in an unfamiliar, scary place.

We all know that. Fear expresses itself as anger.

The very abandonment of the patient by the nurse only fuels their fears. They push that call button every two minutes just to get the nurse to pay attention. They complain bitterly. They make up reasons out of thin air to get someone in the room with them.

There are also those who are detoxing from drugs or alcohol, unintentionally, by being confined to the hospital. I'm not even talking about some teenager detoxing, or some homeless guy. I'm talking about the upper middle-class 50-60-something lady who has had a Xanax habit for the past twenty years or a multiple-cocktails in the evening habit. The 70-something gentleman who has been a functional beer-drinking alcoholic all his adult life is going to get mighty cranky, too.

For some reason, these folks are slipping through the cracks of addiction assessment and treatment. They'd be the last ones on earth to admit to a habit.

Of course, there are those patients who truly do have a psychiatric problem; some diagnosed, some not. They are everywhere. They may only exhibit full-blown symptoms stemming from their malady when they're scared or confined.

One issue that sometimes gets forgotten is the good old fashioned depression. Again, loss of control, fear of the hospital environment, fear of abandonment and just plain loneliness can send some folks into a depression. It will manifest as anger or the incessant call-button pusher, or it could be the patient who always has something to complain about. It should be one of the first things we investigate when we sense that something's not 'right.'

According to the literature, and common sense, nurses should not retaliate by avoiding the patient. One can set boundaries, as in the case of the groper or the verbal abuser. "I won't accept this behavior. I will take the best care of you that I can, but I won't be groped/yelled at....etc."

Of course, hearing the complainer and simply saying, "I'm sorry this/that happened. I'll do whatever I can to change/fix/make it better for you," can do wonders to soothe and give the patient a sense of satisfaction.

The depressed patient needs someone to listen. They also need the doc to know that maybe an antidepressant is in order.

As nurses, we're the patient advocate and part of that role includes being the caretaker without reservation, even when it pains us to do so. I'd also encourage that we stop criticizing patients to each other. Sure, it's a way to disperse the tension, but at what cost? Until you walk a mile in their mocassins, and all that. Try not to judge harshly.

National Day of Service

A call for service -

"Every time our nation faces crisis, our national experience has shown Americans rise to the challenge."

"While government has an important role to play in helping rekindle our economy and addressing the problems of a distressed nation, President-elect Obama believes each of us, as Americans, have a responsibility to do what we can for our communities and fellow citizens."

"Barack Obama is calling for a National Day of Service to take place on Jan. 19, the federal holiday for the Rev. Dr. Martin Luther King Jr.'s birthday and the day preceding Mr. Obama's Inauguration as President. The United States is once again at a crossroads and that is why the President-elect hopes to use the occasion of his Inauguration to rally our nation to commit to service in our communities."

"President-elect Obama will ask Americans to do more than offer only a single day of service to their cities, towns and neighborhoods. He will ask all of us to make an ongoing commitment to our communities. Never has it been more important to come together as one state and one nation in shared purpose to tackle the common challenges we face."

Go to this website to either create your own event or sign up with an existing one in your area.

I found several in my area. Many of them are choosing to do something on the weekend rather than Monday.

I discovered a meet-up scheduled for Monday the 19th, just down the street from where I live. A bunch of neighbors are going to meet at the local Starbucks to decide what we'll do to be of service to the community.

Sounds good!

I took the vow.

Deepak Chopra started a movment worldwide whereby people take a vow of nonviolence in thought, speech and action.

The goal is to create a global movement, which would mobilize 100 million people to make the same commitment. We, at the Alliance for a New Humanity believe that if a critical mass of people commit to this vow, the world would be transformed. Deepak Chopra

You must be the change you wish to see in the world. -Gandhi-

Check out the website. Take the Vow.

Words

Words. They sing. They hurt. They sanctify.
They were man's first immeasurable feat of magic.
-Leo Rosten-

"We create ourselves out of the stories we tell about our lives, stories that impose purpose and meaning on experiences that often seem random and discontinuous. As we scrutinize our own past in the effort to explain ourselves to ourselves, we discover - or invent - consistent motivations, characteristic patterns, fundamental values, a sense of self. Fashioned out of memories, our stories become our identities." - Drew Gilpin Faust

I love these quotes.

So much food for thought.

I started a journal when I was 13. My mother gave it to me after I'd read The Diary of Anne Frank. I guess that's when the spark was kindled, which lit the flame on the candle which shall not be put out.

As an adult, writing the stories of my life has become increasingly important. I've learned the value of keeping the memories in safe storage.

I write for two main reasons. I use it as a way of processing my experiences. What do I mean by 'processing'? The act of writing about an experience allows me to ponder it, interpret it, draw conclusions from it, and, perhaps most significantly, discover meaning in it.

The second reason is perhaps just a extension of the first. I write as a creative outlet. I need creative outlets. Some folks paint. Some talk. Some make pottery. Some act.

I write.

There was a time when my life-framework required a complete overhaul. I had to rebuild myself from the rubble. I had to reconstuct my life experiences and reorganize my interpretations of the past experiences. Those were long, grueling years but they bore fruit.

I now recognize that life is a series of metamorphoses. If I hadn't written about it, I wouldn't have been able to appreciate the threads and weaves in the tapestry that is my life.

Feathers

A woman confessed to her priest that she had gossiped about others. The priest gave her absolution and instructed her to get a feather pillow, stick a knife in it, and shake it out the window.

The woman went home, got a feather pillow, stuck a knife in it and shook it out the window. The feathers flew all around the neighborhood.

She returned to the priest and told him she had completed the task. The priest then said, "Now, I want you to go and gather up all those feathers and put them back in the pillow." "But Father," she said, "the feathers flew everywhere! There's absolutely no way I can gather them all up and put them back!"

"You are right," he replied. "And that is what gossip is like."




Gossip is everywhere. I've read articles about the subject, curious to know why humans exhibit this behavior. The general culling boiled down to a couple factors. Humans want to be accepted by other humans. They also want to increase their self-esteem.

If a person tells you something unflattering about another person in secret, they've not only attempted an alliance with you - "See, I'm telling you a secret." - but they've also put themselves above the person about whom they gossiped - "I'm better than that person."

There is a third gossip phenomenon. This arises from lack of knowledge. If there is a lack of knowledge about something that effects a community, people will, by their very nature, create stories to fill in the blanks.

Humans are story-tellers. If the story is prompted by a lack of knowledge, it's a safe bet it bears little resemblance to the truth.

Can we stop gossiping? Of course we can. This topic became a deeper interest to me when I was gossiped about. A person mischaracterized me in a most unflattering light. They don't even know I know, and never will.

One thing's for sure; it taught me something important.