Prolonging life: the ethics of suffering

I"ve shared with you Mitchell's Journey on facebook. This young boy and his family are facing his impending death from a terminal illness. I watch this kind of heart wrenching experience regularly at the bedsides of children in the Intensive Care Unit. It is agonizing and never gets easier.

On the other hand, I also see, and participate in, prolonging the life of a child at any cost and with all available life support and technology. In most situations this is the appropriate and right thing to do. Other times, my soul feels pummeled as we continue to provide everything to a frail and battered body that has fought for as long and as hard as it can. After each treatment, with each setback and failure to improve, we ignore the message the child is sending, "I can't fight anymore, please, let me go."

As I followed Mitchell's Journey, I was in awe of his family's love and devotion to him. Through the pictures and stories I saw their desire to give him any experience to bring a smile to his face, to celebrate happy moments, to spend all the minutes of all the days with him before his death.

Then came the announcement of an LVAD to prolong his life and everything inside of me screamed NO! In my mind this was wrong. It would mean separating and splitting his family to travel hundreds of miles away, to surgically implant an extremely invasive machine into his heart, to attach his body to a large and cumbersome machine forever. It would mean forcing his weak, fragile body to undergo anesthesia, fight to recover and regain what little strength he had before, wait for his body to accept this foreign device. It would mean balancing blood thinners and preventing an infection that could be deadly. He would have to spend weeks in a hospital far away from his home and his family and friends that he loves. In the best case scenario, it would prolong his life. But it is not a cure. He would still die and his parents would still grieve.

Mitchell's family decided not to pursue the LVAD. I felt vindicated for my opinion then disappointed in myself for judging his parents about a decision that was not mine to make.

Tell me: why does this cause me such distress and anguish? He's not my son or nephew or neighbor. He is a boy I have come to know through a blog his father shares with the world. The naked emotions his father exhibits bring back my own experiences. Author and physician Samuel M. Brown put it best:

               
                There is something like a community of people who have suffered the death of a 
                loved one. Those of us who have lost a parent or a lover or a friend or a child know
                something that no one else does. It is not a language, really, but a shared awareness 
                that is difficult to communicate to someone who has not experienced such grief.

This is a tragic situation of loss and one that will repeat itself hundreds of time a day in our country alone.
This is what my blog is about: to open dialog, to explore suffering, to have discussions about dying. As an Intensive Care nurse, I am uniquely positioned to see the duality of technology,  saving lives and prolonging suffering. I firmly believe that our American society fears death - that inevitable experience we all will have and cannot escape. Only through knowledge and discussion can we accept severe illness and approaching death as a place to gather friends and family, lean on the strength of community, and celebrate that life, that soul, who is most precious to us.

Parenting Payback: Eagle Court of Honor

This is what every parent wishes for, waits for, and prays for: completion of a child's major accomplishment. Tonight was the crowning celebration for Spencer as he received his Eagle Award in Scouting.

I admit to celebrating early when the paperwork was completed; this was just icing on the cake. A big thanks to all the men who have helped him on his journey of growth and discovery. I so appreciate their sacrifices of time and their dedication to my son and his scout troop. I firmly believe this is a life altering accomplishment.

He was confident as he shared the details of  his project. He chose Organ Donation Awareness and shared information and flyers at the local college tailgating party prior to the game.

I join him in urging everyone to consider organ donation. That selfless gift can save several lives. Talk with your family, explore the possibilities. Make sure they know what your wishes are. Then if, God forbid, the unthinkable happens to your loved one, your heart and mind will be in the right place to offer that life saving gift. It can bring something good out of a tragedy. Do it today! And if you have any questions, I am happy to share more details.

For more information, click on one of the links.          Yes Utah.org            Organ Donor.gov

As a special added bonus, we took a family photo. All you moms out there will appreciate the the scarcity of this opportunity.

Like I said, this was definitely a payback day.

Anasazi Ridge

All the times I've been to St. George, Utah and I haven't known about Anasazi Ridge high above the Santa Clara river. Thankfully, that was rectified this weekend. Several hundred petroglyphs are found on these sandstone boulders.



  












Anasazi means "Ancient Ones" who are thought to be the ancestors of the Pueblo Indians.   They lived in Four Corners area between A.D. 200 to A.D. 1300. Recent research reveals they may be related to the hunter-gatherers found as early as 6,000 B. C.  Think about time that far back boggles my mind.                                           Anasazi in Utah

                                                                                         

People are represented as several different forms.  I like the figures that have three digits. I'm also partial to the square sheep or cows and I find the tight spirals fascinating.

And finally, a word of advice, when hiking in Southern Utah avoid the summer months. Early Spring is great and a brisk breeze will just make things perfect. 

  

Utah's Dixie

I love spending President's Day in Utah's Dixie! I left piles of snow and found partly green lawns and plenty of sunshine. I took my daughter and cousin to a fabulous park for some outdoor therapy that has been greatly missed up north. The bright sun was inviting a plethora of people to come play. I was pleased to observe the girls patiently waiting their turn. Additionally, they each helped other kids get on the equipment and gave them a push. This makes a mom proud.



 This twirly-gig is super fun and at this point I must point out that when I was a kid, we did not have these nifty cool play toys.

We did, however, have merry-go-rounds that could go at incredible speeds, provided the pusher was strong and fast. The trick was to pile on as many kids as possible and to avoid burning your bare legs on the rusted, heat baked metal.

As the girls played, I walked the paved trail along the trickling river, nuturing my soul with the sights and sounds of spring like ducks swimming placidly then taking sudden flight.

A small amount of water trickles slowly down it's bed reminding me that
the heat of summer will leave it dry. This is, after all, a desert. Though the sky is a vivid blue and the dirt is the red-orange of the hills, it's still rather barren without the trees dressed in leaves; their limbs are stark and bony. It reminded me of a story my Grandma Roundy used to tell me.

 
Shortly after the pioneers entered the Salt Lake Valley,  a young man named David Cannon brought his wife, Wilhelmina, to southern Utah to help start a settlement. Wilhelmina, or “Willie” as she was called, was not at all happy. She hated the hot, dry desert, and cried constantly. She pleaded with her husband to take her back east, where plants and trees grew more easily and the weather was more moderate.

“Everything is so ugly here,” she complained. “If you can show me just one beautiful thing in this place, I will make myself content and stop complaining.” David went up into the mountains and returned with a beautiful three-petaled blossom with delicate colors. Willie honestly admitted to both David and herself that it was indeed a thing of beauty.
               It was a sego lily, now the Utah State Flower.  reference

Beauty really is in the eye of the beholder and sometimes all it takes is the slightest shift of perspective to make that difference. This photo is of an old, dead tree lying on it's side not far from the river bed. The remaining trunk is bleached white and rather unremarkable but inside is a textured kalidescope just waiting for discovery. What will you see?

Mourn with those who mourn

I've struggled this past few years or so with the concept of suffering that I encounter every time I go to work as a nurse in a pediatric hospital. Suffering seems so unfair and without satisfactory answers though I continue to ponder and search for understanding. I've met many children and their families that will never leave my heart. Though I am legally and, more importantly,  morally bound by privacy laws, I will never break that obligation. Social media has made it possible to share experiences that may be similar to those I might encounter.

As I've read this blog, Mitchell's Journey, I've been touched. I share this to illustrate the grace, strength and love that comes when faced with the end of a most precious life.
Mitchell's Journey