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By Laura Hult | July 28th 2009 10:22 PM | 13 comments | Print | E-mail | Track Comments
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More PTSD - Navigating the Mindfield articles

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About Laura Hult

As a paramedic working for many years in the Chicago metropolitan area, I witnessed firsthand the devastating and lasting effects of trauma not only on victims, but also on their families and medical... Full Bio


An exercise performed in class one fall afternoon to demonstrate the helplessness of the terminally ill has left me with much to ponder.  If I knew in advance that death was near, what five things had been most important to me in life, and which of them could I do without?  

We were asked to write each of these on individual note cards.  I listed the following things of greatest importance to me, and in no particular order, they were:

  • Spirituality (not religion)

  • My nuclear family

  • Honesty

  • Wisdom

  • Sanctity of life



It was surprising and revelatory that my values could be reduced to only five general topics.  I did not select things, possessions, or activities but rather subjects that can never have a price tag attached to them, and this pleased me very much.  For when death finally overtakes me, I do not want to be remembered for “things” but rather “attitudes” and “values”.  This I feel is all of any real significance we can pass on to those still alive.

We were then told to tear up two of the cards.  I was enraged.  My life had just been distilled down to five things, and I was now being asked to give up two of them!  The things that I simply cannot do without are my daughters (and the rest of my family to a lesser extent), and my God.  Honesty, wisdom, and the sanctity of life have been extremely important to me, but these were the selections I had to choose between.

Getting rid of the “sanctity of life” was the easiest, for I was able to justify this elimination with the old saying, “Let God sort ‘em out!”  The next selection was not so easy.

Between “wisdom” and “honesty” I reasoned that probably honesty could be done without IFF wisdom was still available and attainable.  Wisdom would get me what I wanted anyway, including the discernment of honesty or dishonesty.  

Our instructor then came to each of us and arbitrarily took one of our cards.  This was almost more than I could bear.  Yes, I could do without even wisdom and the remainder of my family, but NOT my daughters or my God, but this was not under my control.  Someone else would decide what I was left with.  What a helpless feeling!!!

Fortunately, my instructor selected the one remaining subject I could do without, and I was left with my daughters and my God.  I was tremendously relieved, but again enraged when one of my classmates had daughters taken from her.  It wasn’t fair, and I wanted to fight for her freedom to keep what was most precious.

But in thinking over this exercise again, I wonder if we truly do have any choices available to us.  We are all in a terminal phase of life.  We will all someday die.  A cosmic roll of the dice will determine how and when, and all we can do is prepare ourselves and our families as best we can without knowing when death will come.

I need more life insurance.

Comments

Gerhard Adam's picture
...to demonstrate the helplessness of the terminally ill has left me with
much to ponder.  If I knew in advance that death was near, what five
things had been most important to me in life...

I was struck by these comments, because of how we tend to think of these things.  All of us are "terminal" and have no knowledge of how near death is.  Despite many people spending a portion of their lives trying to see into the future, it's interesting that when they can finally see it, they are considered helpless.

I'm sure I'm not fully grasping the significance of this exercise, but why should one feel helpless knowing that they are going to die, when that is knowledge we already have.  Does it really matter if it is days, weeks, years away?  Since we can't know, then why would we live in denial that somehow we have a guarantee or some exemption that assures us to live to old age?

I realize that there is a psychological difference between having an abstract sense of death versus having to confront it as a finite time line, but that seems to have more to do with our tendency to ignore those things that we don't like to think about, rather than death itself. 

A real problem I see is that too many of us are so busy living our lives (or so we think) that we want to have some sort of notice when it's going to end, so we can suddenly shift gears and focus on what's important.  That just sounds backwards to me.

LauraHult's picture
why should one feel helpless knowing that they are going to die, when that is knowledge we already have.


Gerhard, I sense that you come from a family that values life, so there may be some cultural differences that strike a chord with you concerning this issue. 

I have a huge problem with how the dying are treated in the United States.  In our youth-oriented, narcissistic American culture, the dying are often shuffled off to an extended care facility or hospital, cut off from everything that is familiar and comfortable.  Many times these people are ignored or abandoned by family and friends.

The paternal side of my family is from solid European stock, and we continued those traditions in our home as I was growing up.  We cared for our elderly family members at home, preserving what dignity and self-direction we could for them.

The point of this exercise was to allow us as therapists to experience something similar to what terminal patients may be feeling, so we could fine-tune our efforts and perhaps make the time left for those under our care a bit more tolerable.  By listing our most important values, and then having them removed one-by-one while being told we would just have to live without them, was a real revelation to me.  I had not considered this aspect of dying before, even though I've cared for dying individuals most of my life.

Gerhard Adam's picture
I can see your point.  I come from solid European stock myself, so there is a significant part of that type of "tradition" in my family as well. 
... preserving what dignity and self-direction we could for them.

I agree with the sentiment and the objective.  However, I would also make another observation regarding the "narcissistic, youth-oriented" culture...you must also have the dignity to know when to call it quits.

I don't know where the foolishness derived from that one could "fight" death, and I'm certainly not suggesting that one simply do nothing, but at some point, in order to maintain dignity, one has to recognize when there is no "fight" left.

LauraHult's picture
However, I would also make another observation regarding the
"narcissistic, youth-oriented" culture...you must also have the dignity
to know when to call it quits.

I apologize if that was the message received.  What concerns me, and the purpose behind this blog, is the lack of empathy towards the dying.

We are a youth-oriented culture, with age and experience treated as mostly irrelevant, and death oftentimes as a disease one can "catch".  Imagine yourself as a life-long steel worker, suddenly struck down by cancer in your 60s.  You provided well for your family, worked hard and delivered a quality product.  But now, with 6 months or less to live, your family doesn't want to be "bothered" with your fears, tears, anxieties, and feelings of impotence.  They put you into hospice and essentially forget about you.

Sure, the guy knows he's going to die...but is this the way? 

Gerhard Adam's picture
I understand what you're getting at, but I find myself also exploring the attitude of my own parents (not my attitude towards them).

My father died of cancer about 10 years ago, and his attitude was very pragmatic in the sense that if the doctor's couldn't actually help in a meaningful way, then he was going home.  My mother is 81 years old, and she is in good health.  What's interesting is when she relates conversations with her doctor, the puzzling thing (to her) is why the doctor would be so foolish as to think that somehow an 81 year old woman should be striving to have the body of a 20 year old again (health-wise).

In effect, this makes me wonder if part of the "youth-orientation" (neglecting the media for a moment) isn't also a by-product of a medical community that also doesn't want to recognize old age.  I always found it patronizing when I hear people tell someone that they are 70 years "young".

Another point I have to think about is where such a scenario as your describing originates from.  I can't envision it in my family, yet I can understand it when there seem to be so many families that don't actually concentrate on, or maintain family connections.  When families voluntarily split themselves up and then don't make the effort to maintain contact and relationships, it isn't too difficult to see that the entire concept of being engaged with someone that is dying is a bit surreal.

My mother's neighbor is now 97 years old and took care of her husband during his time of dying.  Her biggest regret is in listening to too much medical advice which simply prolonged the pain and suffering, essentially turning him into a different person than he was her whole life.  In the end, she admitted relief when he finally passed.  She lives alone in her own house, but her family always comes by to help out and visit.  Even my mom will go out in the winter with her snowblower to clean her driveway (since she thinks her neighbor is too old to be doing that stuff herself).

In any case, my point is that families are also responsible for raising a culture of caring and we can't always look to outside sources as the means by which such values should be instilled.  Basically it comes down to the fact that you can't be a jerk all your life, and then expect people to care when you're dying (which is not what I suggesting from your example, but just stating it as an example). 

LauraHult's picture
My father died of cancer about 10 years ago, and his attitude was very
pragmatic in the sense that if the doctor's couldn't actually help in a
meaningful way, then he was going home.  My mother is 81 years old, and
she is in good health.  What's interesting is when she relates
conversations with her doctor, the puzzling thing (to her) is why the
doctor would be so foolish as to think that somehow an 81 year old
woman should be striving to have the body of a 20 year old again
(health-wise).


In effect, this makes me wonder if part of the "youth-orientation"
(neglecting the media for a moment) isn't also a by-product of a
medical community that also doesn't want to recognize old age.  I
always found it patronizing when I hear people tell someone that they
are 70 years "young".

The pragmatic realism of your parents is refreshing, for there used to be a time when people would strive to grow old gracefully and even look forward to the increased status that age and attendant wisdom would bring.  But as far as youth-orientation being inspired by the medical community...?  I have some doubts.

Certainly we are at a place where many illnesses and debilitating diseases can now be treated, and also remember what medical people are - healers and problem-solvers.  When presented with an individual that is suffering, the first reaction is to alleviate the suffering. 

I recall in incident as a paramedic where there was some debate as to whether or not I had Wolff-Parkinson White syndrome (a heart condition that can cause very uncomfortable rapid heart beats), and a cardiac surgical resident overheard the conversation.  He almost jumped out of his lab coat and exclaimed that, "We can do something about that now!" as he lunged towards me.  Although he had studied under DeBakey and I was confident of his skills, I nevertheless politely declined his surgical intervention.  :) 

His instinctive reaction was a problem-solving approach.  He did not quite grasp why I would refuse surgery as a first choice, and it took some time to convince him that I would much prefer to try other methods of controlling these dysrhythmias before submitting to the knife.

But these instincts are necessary in medicine.  I would not be comfortable, nor would I trust a healthcare provider that was not interested in the alleviation of suffering.  Of course the flip-side is also true, and I would have serious misgivings about someone who wanted to replace heart valves in a 90+ year old patient who was not overly troubled with symptoms.
Another point I have to think about is where such a scenario as your
describing originates from.  I can't envision it in my family, yet I
can understand it when there seem to be so many families that don't
actually concentrate on, or maintain family connections.  When families
voluntarily split themselves up and then don't make the effort to
maintain contact and relationships, it isn't too difficult to see that
the entire concept of being engaged with someone that is dying is a bit
surreal.

Right, but I think our families are the exceptions rather than the rule in individualistic Western societies. 
In any case, my point is that families are also responsible for raising
a culture of caring and we can't always look to outside sources as the
means by which such values should be instilled.  Basically it comes
down to the fact that you can't be a jerk all your life, and then
expect people to care when you're dying (which is not what I suggesting
from your example, but just stating it as an example).

I agree completely and am reminded of Sandy Chapin's song, "Cat's in the Cradle":

My child arrived just the other day,
He came to the world in the usual way.
But there were planes to catch, and bills to pay,
He learned to walk while I was away.
And he was talkin' 'fore I knew it, and as he grew,
He'd say "I'm gonna be like you, Dad,
Ya' know I'm gonna be like you".

And the cat's in the cradle and the silver spoon,
Little Boy Blue and The Man In The Moon.
"When ya comin' home Dad?"
"I don't know when, but we'll get together then, son,
Ya know we'll have a good time then".

Well my son turned 10 just the other day,
He said "Thanks for the ball Dad, come on let's play.
Can ya teach me to throw?" I said
"Not today, I got a lot to do." He said "That's ok".
And then, he walked away but his smile never dimmed,
He said "I'm gonna be like him, yeh,
Ya know I'm gonna be like him".

And the cat's in the cradle and the silver spoon,
Little Boy Blue and The Man In The Moon.
"When ya comin' home Dad?"
"I don't know when, but we'll get together then, son,
Ya know we'll have a good time then".

Well he came from college just the other day,
So much like a man I just had to say
"Son I'm proud of you, can ya sit for a while?"
He shook his head, and he said with a smile
"What I'd really like Dad, is to borrow the car keys.
See ya later, can I have them please?"

And the cat's in the cradle and the silver spoon,
Little Boy Blue and The Man In The Moon.
"When ya comin' home son?"
"I don't know when, but we'll get together then, Dad,
Ya know we'll have a good time then".

Well I've long since retired, my son's moved away,
I called him up just the other day.
I said "I'd like to see you, if you don't mind."
He said "I'd love to Dad, if I could find the time.
You see my new job's a hassle and the kids have the flu,
But it's sure nice talking to you Dad,
It's been sure nice talking to you."
And as he hung up the phone it occurred to me,
He'd grown up just like me, my boy, was just like me.

Jeff Sherry's picture
Hello Laura, my list would probably entail the things I value: Logic, the ability to read, creativity, adaptability and curiosity.

You and I are both in our early fifties and I wonder if you are adjusting your thinking because the end is near?

LauraHult's picture
Hello Laura, my list would probably entail the things I value: Logic,
the ability to read, creativity, adaptability and curiosity.


Hi Jeff.  The things you list as being most valuable to you are very important aspects of the human experience.  To continue the exercise, take two of them away.

Which two could you do without?  How does this make you feel?
You and I are both in our early fifties and I wonder if you are adjusting your thinking because the end is near?

An interesting question, and although I do not have a terminal illness (other than being alive) most likely I would do little to stop such a process.

Jeff Sherry's picture
  ///Which two could you do without?  How does this make you feel?

Frustration, anger and resignation  would probably be my responses when other people would be making decisions for me. 

LauraHult's picture
Frustration, anger and resignation  would probably be my responses when other people would be making decisions for me.

A miserable way to die, in my opinion.  But things could be made significantly better through a few simple actions on the part of caregivers and/or family members.  In this situation, if you were feeling frustrated and angry, how could people help you to not feel so powerless?  What actions on their part would give you the sense that, even though dying, you still had worth as a human being?

Jeff Sherry's picture

Frustration, anger and resignation  is  what I have seen from a number of relatives that had terminal illnesses. As an example, my mother could only speak with her eyes to answer questions after a pea sized tumor was removed from her brain and she had also had a stroke on the operating table. She was 46 and had died 6 months later when cancer had ravaged her lymphatic system.



"So what can caregivers do to make you not feel powerless" if you are in the condition my mother was in?



Other than dieing in ones sleep, are there any ways to die that are not miserable?



LauraHult's picture
Frustration, anger and resignation  is  what I have seen from a number
of relatives that had terminal illnesses. As an example, my mother
could only speak with her eyes to answer questions after a pea sized
tumor was removed from her brain and she had also had a stroke on the
operating table. She was 46 and had died 6 months later when cancer had
ravaged her lymphatic system.

Jeff, I'm very sorry your mother suffered so much.  From your post, it is clear that you spent a great deal of time and energy trying to discern her needs and alleviate her suffering.  I cannot think of anything more that you or anyone else could have done for her.

You have little need for the message this blog intended to deliver.  It was intended for those without personal experience or empathy.  Perhaps your post will inspire some people to begin discussions within their families about what to do should something similar happen to them, but this is probably of little comfort to you.

Again, I am truly sorry for the pain and hardship your family has had to endure.

Becky Jungbauer's picture
Thanks for another thought-provoking post, Laura. Something I found interesting was when you said you were enraged, and I thought, "Why? It's just an exercise." Apparently I would have needed a bit more prodding from the instructor to get the point!

The one volunteering stint that I really had difficulty with was the assisted living facility in my college town; I was familiar with them since my grandpa had lived in one for the last few years of his life (albeit a very "posh" one) but confronting the possibility of losing my faculties, my independence, my mind - it was extremely uncomfortable.

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