As I Am: A Quality of Life Issue

I'm pleased to welcome Dr. Karen Pirnot as she talks about an amazing patient of hers, Garret Frey.

Welcome, Karen!

Imagine yourself totally paralyzed just below your chin.  You can move nothing but your head.  And then imagine a ventilator attached to your throat to help you breathe.  This is not a temporary “nuisance” condition.  This is the life of Garret Frey of Cedar Rapids, Iowa.

Injured in a motor vehicle accident at the age of four, Garret was rendered quadriplegic and ventilator-dependent for life.  After the accident, Garret was immediately placed on artificial, mechanical breathing while his parents rushed to the hospital.  It would be months before they would know that Garret’s paralysis and inability to breathe on his own would be permanent.

After nearly a year in various intensive care units and a children’s rehabilitation hospital, Garret was discharged to his home, along with supplies which would fill the ordinary person’s closet.  Garret’s parents were trained to care for him but as they both worked, a full-time nurse had to be with Garret, severely depleting the medical insurance benefits.  For some time, Garret remained confused and depressed.

While others speculated about a vegetative, non-productive existence for the child, Garret, his mother and a Clinical Psychologist went about trying to develop the best quality of life possible, within the permanent medical parameters.  Over a period of seven years, Garret was taught to use his brain in order to have an entirely cognitive experience of life in which his remaining senses would become highly and acutely developed.  As Garret’s brain matured and he became emotionally prepared for his life as it was, his relationship with his psychologist was terminated.

Garret’s mother and the psychologist fought for a free, public education for Garret.  When the school board in Garret’s community resisted, the matter was adjudicated and Garret was allowed entrance into school.  The decision was appealed several times and eventually ended up in the United States Supreme Court where the Judges ruled in Garret’s favor.  The ruling has set precedence for thousands of handicapped children across the nation.

While the court battles went on, Garret learned to participate in a full public school life.  He was eventually placed in an accelerated academic program and he thrived both academically and socially.  In high school, his friends were trained in the operation of the ventilator and Garret was then free to attend concerts, restaurants and school functions.

In daily life, Garret continues to require 24/7 supervision for the care of his body and the functioning of his ventilator.  Garret considers his care and equipment simply a part of his daily life.  He sleeps through most of the personal care essential to keep his body functioning.

And so, we might just ask how the quality of life is determined for any one individual?  In all probability, we never know our own limits until faced with our own worst fears.  For some, it may be the loss of a limb and for others, the loss of speech, sight or hearing.  For some, quality of life is determined by athletic or intellectual skills; for others, by the accumulation of wealth.

For Garret, quality of life as a child meant that he was able to get a free, public education in the least restrictive environment.  As an adult, quality of life for Garret means he is able to be out with friends and that he has people who love and support him while he takes college courses and ponders the various mysteries of life.  Garret maintains a steadfast belief in God as well as an optimistic attitude about each and every day of life granted to him.

Finally, we might ask who should determine what the quality of life is for any one individual.  More and more, health issues are legislated rather than left to personal decision-making.  There are pros and cons to each side of the coin but for Garret:  “I do not remember the day I was born and I do not remember the day that I died.  I only remember myself AS I AM.”  (This is the first sentence of the book AS IAM by Garret Frey and Dr. Karen Hutchins Pirnot.)

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Dr. Karen Hutchins Pirnot has worked with children and families in various capacities for the past forty years.  She is a Clinical Psychologist who practiced in Cedar Rapids, Iowa and later, in Sarasota, Florida.  For years, she worked extensively in the human services and juvenile justice systems as well as various school and hospital settings.  Dr. Pirnot worked with special needs children as well as children and families experiencing transitions and tragedies. Dr. Pirnot’s books are written to empower children and their families.  The books may be found on Amazon, Barnes and Noble and www.drpirnotbooks.com  

What are Life Saving Measures?

To say there is some confusion among authors as to what constitutes lifesaving measures really should not be a surprise. After all, most people not involved in medicine can have a difficult time with the concept.

Lifesaving measures is a broad term. It can be used to describe any futile care to a patient that is likely not to live. However, often times these same lifesaving measures are really a bridge to get a patient through a critical illness that they can fully recover from and still lead a long life but will certainly die if they are withheld.

What you should do is examine each of these areas and think through the possibilities of what situations you would be okay receiving these and which you wouldn't and make that decision clear to your family.

So-- what are some of these lifesaving measures.

1. CPR: This is chest compressions. Generally, when people are a DNR (Do Not Resusitate), this is its basic definition. If your heart stops and you're a DNR-- we won't do compressions. You can delineate this further by also saying I don't want drugs or electricity. Some patients are fine getting the medications but they don't want their chest to be pounded on. However, CPR is the one mechanism that will MOST LIKELY bring you back in conjunction with these other therapies.

 

2. A ventilator: This is a breathing machine where a tube is inserted into your mouth, through your vocal cords, and into your trachea to assist with breathing. Being on a ventilator is hard. It is not anything like the natural way we breathe. A patient can say-- I don't want to be intubated. However, this can also be short term. Say a healthy, young male has a severe pneumonia. He's just not able to maintain his oxygen levels and his breathing worsens. In most circumstances-- as a nurse-- I would not expect the patient to die but he NEEDS that breathing machine to buy him some time for the antibiotics to kick in...etc.

3. Vasopressors: These are drugs that help support blood pressure. Many shock states will cause lower blood pressure which is bad. You need normal blood pressure to heal. This is another area that might be short-term to buy the patient the time they need to get better.

4. Nutrition: I'm going to lump this all into one category. It can include everything from IV fluids, to TPN (which is IV nutrition) to a feeding tube. If this is withheld, what you die from is dehydration and starvation. This is what the Terry Schiavo case centered on. Some people believe withholding food and fluid is unethical as it is a basic requirement to live. How about you?

5. Oxygen: You can get oxygen many ways without being on a ventilator. Through nasal prongs, through a mask, and sometimes via a machine called CPAP or BiPAP. Again, this may be a short term measure to help a patient through an illness and most often is used for that very reason. But, if you take them of their oxygen-- they will die.

Patients and families need to be well-educated in what these terms actually mean well before they are sick enough to be forced to make a decision during a crisis.

Lifesaving measures and End-of-Life Care are not really interchangeable. Have these conversations with your family now.

What about you? What would you want and not want? Under what kind of circumstance?

Do Nurses Ever Stop Caring? End of Life Issues...

There is nothing that distresses me more than watching a television show, seeing a movie or reading a book that says something akin to the following..."He's going into hospice. They're not going to care for him anymore."

Honestly, boils my blood.

When I was in nursing school, I spent six weeks caring for a hospice patient. Our community health instructor first asked for volunteers. I remember her saying, "It's for six weeks but he is expected to live several more months."-- implying that we wouldn't have to deal with his death.

Let me first say no human can put an expiration date on you.

It came down to a lottery and my name was drawn.

He was in his mid 60s and was diagnosed with multiple myeloma-- which is a type of bone cancer. I would visit he and his wife at their mobile home to make sure his needs were met. They had a feisty, young golden retriever that was one huge, butterball of energy that greeted me at the door every visit.

My non-care (yes-- that is dripping with sarcasm) included pain management (helping the family choose a PCA pump, instructing them in how to use it, etc) and discussion of end of life issues. This includes a lot of talk about where you think you're going to end up. Heavy, spiritual issues.

I was just twenty-one.

As we were talking one day, he said he'd really like to go up to the mountains. Unfortunately, he was bedridden. The previous summer, I spent a camping trip in Rocky Mountain National Forest and had some pictures.

I brought him this huge pile of photos. I said, "I'm really sorry you can't go to the mountains but perhaps you could pick one of these photos and put it by your bed to help you visualize being there."

And that's just what he did. Took a red, push-pin and shoved one of those photos right into the wall.

A visit shortly after that and the normally exuberant golden retriever was inconsolable. He would not leave this gentleman's side and in my heart I knew that was the last time I would ever see my patient alive. He died within a few days.

I went to the funeral, with some other members of my nursing class, and I still can hear the bagpipes play in that church and how my soul just ripped apart at the grief of his widow. He truly touched my life in those short few weeks I was with him.

After the funeral, my class went to a Chinese restaurant for lunch. My fortune cookie said, "Your kindness to another will not be forgotten."

I don't know... call it what you will, but I think that was a God wink.

His wife gave me that picture back and told me how often she would find her husband just staring at it. I still have that photo and that fortune in a frame some twenty years later.

Please, do not make the mistake of EVER saying that medical personnel stop caring for patients when they have made the choice to forgo further lifesaving measures.

There is much care that is done, very humbling, straight-at-the-heart moments and hospice nurses are truly angels on this earth.

Winner!! And... Up and Coming

 

 

Congratulations to Debbie Curto who won a copy of Wedded to War by Jocelyn Green. I'll be sending you an e-mail on how to claim your prize.

For Redwood's fans this week.








Monday: Do Nurses Ever Stop Caring? My take on the phrase..."they've stopped caring for him" after a patient chooses to forgo medical care.

Wednesday: Life Saving Measures. You hear this term a lot in novels and television but what exactly does it mean?


Friday: Dr. Karen Pirnot shares the inspiring story of her patient Garret Frey.

Hope you guys have a fantastic week!