End-of-Life Advocacy – An Act of Courage

 

We all know the story….maybe it is our own loved one, maybe it is our co-worker’s spouse, maybe it is our neighbor, maybe it is us!     We get news about a new diagnosis and after the shock and anticipation of the sudden changes in our future settles in, we begin a journey of treatment and potential healing.

 

When faced with life-changing news, we search for a team of experts to direct our course and educate us about options and critical decision points.   As fear drives us, we hope and pray we have picked the best team to lead us or our loved ones.

 

Treatments and endless doctor visits, and the coordination of care with multiple specialists, numerous health care professionals and our family members becomes a mountain that looks insurmountable.    So quickly treatments take over and dictate our lives.

 

What happens to us as a person? How do we deal with decisions that need to be made along the way?    Who coordinates the chaos and asks the right questions and listens for answers?

 

Mary and Bill were married for 25 years when he was diagnosed with Stage 1 Melanoma.  After treatment, he received good news.   No trace of melanoma.    They thought they had beat it.  When it returned six months later, Bill died after his second diagnosis and Mary was devastated.    “I’m not a stupid person.   Someone should have told us he was dying.”  How often do we hear this?

 

Mary is a bright lady that read a lot about Melanoma, treatment options, listened to all the experts, and yet, the health care team failed she and her husband.    Bill’s outcome was going to be the same, but Mary felt that is she had a more honest and transparent healthcare team, the process for Bill and his loved ones may have been different.

 

Perhaps they would have made choices that would have let Bill relax, to help him accept and make peace, and for his family to have more time to say their goodbyes and be surrounded by love.

“Honesty and transparency make you vulnerable.   Be honest and transparent anyway.”

Mother Teresa

Through the work of Meaningful Life, I have had the opportunity to interview many families who lost loved ones.    The circumstances around those losses varied but the sadness, angst and wishes for a better end-of-life experience for their family member was poignantly the same.

Listening with your ears and your heart opens us to hearing so much more.

 

Serve as a strong advocate and voice for your loved one

◦ Speak Up

◦ Ask Questions

◦ Demand Candor and Truthful Conversations

◦ Push for All the Facts so Informed, Educated Decisions Can be Made

◦ Listen for Cues from your Loved Ones

◦ Demand Respect for your Loved Ones End-of-Life Wishes

The last thing any of us want is to disappoint our loved ones.

Find your voice, your swagger and stay strong for those we love throughout the journey.  

Being an advocate takes courage, independence, and passion for those that things that matter most to ourselves or our loved ones.

Listening and advocating for what matters the most is a priceless gift.

“No voice is too soft when that voice speaks for others.”

              Janna Cachola

Do not let regret be part of our vocabulary as we say our goodbyes.   Find your voice!

Carla