Quality of Life... who defines it?

I recently read an article about a young girl who has been denied a kidney transplant due to her developmental delays, mental retardation, mental impairments... whatever phrase you choose.  The family is furious, as they should be.

I am a bit confused by how we as a society define quality of life.  How is it determined? Who defines quality of life? Do they have a set scale?  Do they have specific criteria?  Do they have family members or children who have similar conditions that assist them in determining and defining quality of life?

When Cienna was diagnosed with retinoblastoma, I can recall the argument about giving her chemotherapy to save her vision like it was yesterday.  We were in a different position than most families receiving a new retinoblastoma diagnosis. We already lived with a child who had the equivalent of a traumatic brain injury who was also visually impaired.  He would never be able to walk or speak.  He also had seizures and other health problems.  Cienna had a fully functioning brain only her eyes were affected.  To me vision was the least of my concerns.  People can live functioning lives without their vision.  I've met blind people who have had jobs and families.  Cienna's future quality of life was predicted to be less if she was unable to see.  This was predetermined... not by us.

F's life is judged or defined as less, less joyful, less healthy, less independent, less smart... the list goes on and on.  I've seen the look from people who feel sorry for him.  I see how people judge him and form opinions about him. I can tell you, I'm sure, they only see what he unable to do. We've made decisions for F at times throughout his life to maintain or improve his quality of life that were hard to make.  Decisions that came with risks, but the benefit outweighed them. F is an adult now.  He's very in tune with his health needs.  He knows how he feels and when he needs medical attention.  He is involved in his own care.

F is a joyful young man.  He has a life he enjoys.  His independence is defined by him and it's different than what independence means to others. He controls what he can. He has a great nurse who assists him.  He is teachable and has a thirst for knowledge and learning.  Should he become ill or need medical care the power of defining his quality of life could possibly be placed in someone else's hands.  Shouldn't decisions be up to  F and his family?

It saddens me deeply to hear about individuals or groups that have the power to determine or define the quality of a life that they have no understanding of.  They see this life as being "less" because it's different than what is predetermined as the norm.

Death Can Be a Beautiful Thing

Many people do not like to think about death.  It's rarely a part of their life unless they work in a profession where they are exposed to it.  I'm talking about the average person.  They would hardly give death a thought unless they are faced with a situation that brings it to mind.  Situations like a cancer diagnosis, another catastrophic illness, an elderly family member in declining health, etc. I think about death often.

I think about death, first, because Cienna had died at such a young age.  Second, because my son is almost 19 years old. Many of the families that I know who had children with conditions similar to his died before their teen years.  I often wonder what is it about him that keeps him here so long. I'm often told it's because he gets good care.  I like to believe it's because he has a purpose along with a strong will and spirit.

This post isn't about my son, it's about death.  This past year my very dear friend, Tam, died.  She was like a foster mom to me.  I had known her since she my neighbor in 1998, the year my daughter died. My own mother absent most of my adult life was never there to support me in many of the years when I could have used a mother's hug or wisdom.  Tam was family to all of us. A grandmother to my daughter.  Tam was diagnosed early last year with cancer.  She had become a breast cancer surviver many years before we met. Cancer had returned and she had resolved herself to enjoying her last days.  She had been there done that with chemo and radiation.  I understood and respected that decision.  I knew because I had been there and done that when Cienna had cancer.

Choosing quality over quantity of life is a hard decision for many.  Many people want to hang on to their loved ones.  They hang on out of love and fear of not having them. Sometimes they forget that one more day of pain and discomfort is not quality of life.  I'm not saying it's a bad decision to go to great lengths or measures when you know you are faced with death.  That is a personal choice. I'm saying that for Cienna, and for Tam, the choice to enjoy the last days without the extra invasive measures needed to hopefully prolong life would have brought discomfort. We had previous knowledge and experience of  what those measures took from a body.  Cancer treatment is hard.  If you are a cancer surviver or going through treatment you know this.  Each time cancer recurs it is harder to treat.  It requires harsher and harsher treatments if any are available.  It can rob you of precious minutes to be spent away from a clinic or hospital enjoying those you love and the world. The decision not to fight with invasive treatments is not easy. When denying invasive treatments it does not mean you are giving up either. There is fight and hope until the very end.

Dying is a process. It has many stages.  It can, however, be a very beautiful thing.  To help care for someone during their last days is a gift to you and to them.  It is a very special time.  If someone chooses to die at home, as we did for Cienna, and as Tam did for herself, there are resources to assist you.  There is hospice.  They are a fabulous team of people.  There job is not easy, but it's necessary and it takes special people to be a part of that special time. They can assist in preparing you for each stage of the process.

Something that I learned while going through the dying process is  that each individual chooses the moment and circumstance at which they will take their last breath.  I really believe this.  I've talked to many individuals who have experienced the dying process and I am not the only one who feels this way.  I believe that there is a reason and a plan to the last moment. There are times when loved ones miss that last breath.   It is not for us to understand.

If you are faced with that hard decision of quantity versus quality, or have been asked by a loved one to help care for them, please know that although as frightening as it may be this is a beautiful time.  There is no one who will care for a loved one in their last days like you can. Nurses and care providers will come and go, but you are a constant in your loved ones life.  You presence and your touch bring them comfort and love. You will have self doubt about being able to care for them, but you will find the strength when you need it most.  The human spirit is a mighty thing.