A Year of Hope for One Patient Advocate

The following is written by Guest Author and Patient Advocate, Carole Hemmelgarn

In the months of March and April I had the opportunity to take two amazing trips; one to Doha, Qatar and the other Sydney, Australia. Do I feel fortunate to have visited these incredible places? Absolutely! The irony is, however, I would not have been in either location if my daughter Alyssa’s life had followed its natural course.

I was invited to both places to be part of the faculty to teach patient safety and behavior change to the young emerging scholars in the fields of nursing, pharmacy, medicine and allied health. While these young individuals are regarded as our future patient safety leaders they represent something much more to me. They give me hope. Hope that we can start fixing a broken healthcare system by breaking down the hierarchy, improving processes and communication skills, creating resiliency, and learning to provide support and care to our very own healthcare providers. They are also the generation giving hope to patients and families; making sure we are at the center of care, and that our voices and stories are heard, listened to, and acted upon with dignity and respect.

Earlier this year I told my sister that 2016 was the ‘year of hope’ for me. People will tell me they want me to be happy, but I struggle to understand what happiness is or means. Hope, however, is something I can wrap my arms around. I can hope to see a beautiful sunrise while out running, to watch a smile spread across my son’s face, and to see a child exiting a hospital knowing they are leaving better than when they entered.

There is an incredible aftermath when you lose a child to medical errors. It is a topic rarely discussed and one no one can ever prepare you for. Grief is a journey; a journey without a beginning, middle or end. While those of us who have lost a loved one never want you to experience this overwhelming pain we would like you to understand why happiness may take time in returning, or hope may be the best we can ever do.

When I teach these young scholars, I share part of Alyssa’s story because it helps connect the head and heart, and we need to put this piece back into medicine and caring for patients. Every time I speak about Alyssa, I give a piece of myself and my hope is that you take this piece and use it to make change. The future of patient safety resides in hope because hope is not found looking down or back, it is only found looking up.

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Why National Patient Safety Week Matters

Today’s post is by guest author, Carole Hemmelgarn, who generously shares a reminder to all on why patient safety work is so important, and why National Patient Safety Week will continue to matter even after we get it right. Carole continues to give her time as a patient advocate, coaching healthcare organizations across the country on the power of words, as well as a better understanding on what it means to truly communicate with patients.

March 8th starts National Patient Safety week and it is with great irony that I write this blog because it is the anniversary of the day my daughter, Alyssa, died from medical errors. I am grateful for the focus being made in the field of patient safety. We need to become High Reliability organizations, enhance our communication skills, offer communication and resolution programs, implement bundles and the host of other programs that impact safe patient care.

Carole_Alyssa_ETY030815However, I want to bring the focus back to the human side of patient safety and that is the patient and family after harm has occurred. There is this aftermath, which is rarely spoken of, and it is what happens to those survivors living without their child, spouse, parent or sibling years down the road.

I’ve come to realize grief is my twin. It will never go away and we have learned to coexist. Please understand grief is not always bad. I find solace in my grief because we speak the same language. We laugh and cry together and there is no judgment. At other times, my twin is like an anchor weighing me down causing me emotional pain and draining my often limited resources. So you may ponder why the dichotomy? Well, because life moves on, but it is different for us now. I’m a different person. My beliefs, values and what I held to be true have turned upside down.

What most people don’t realize is loss of a loved one, and in particular, a child, changes so many things.

  1. Marriage changes. I’m no longer the person my husband married and trying to figure out who we are in this new space is exhausting. Parents grieve differently and the one thing they don’t want to do is hurt their spouse because they know they are already in pain. This just opens up the door for communication problems.
  2. Your children are affected, but rarely do we talk about the impact it has on them. My husband and I often ask the question “Is this who our son is, or is this who he became after his sister’s death”? It is difficult to watch your son cringe when asked if he has any brothers or sisters and he says “no” because he can’t go there and talk about his sister.
  3. Your relationship with family members change. Sometimes they become stronger with certain members of your family, and others, a riff occurs because they expect you to move on or be the person you were before, and that individual no longer exists. Partaking in family events that once use to be enjoyable can be extremely emotional. You are there, but only as the great pretender, when underneath you are screaming to be set free. Why? Because you are watching their children progress through life, and do the very things, your child will never get to do.
  4. Friendships change…..

The most difficult are the milestones your child will not experience: moving through elementary, middle, and high school, not graduating from college, getting a job, married or having children. These events go on for years and this is the aftermath not seen.

I share this with you because I want you to see the importance of the work you do in the area of patient safety. So as you participate in the 2015 National Patient Safety Week, your goal is to make sure we minimize and mitigate the aftermath of harm I discuss above, and my goal is to help others avoid having grief as their twin.

10 Years Later: Patty & David Skolnik Share What They Feel Today

Patty and David Skolnik were again faculty at the Telluride “East” Patient Safety Summer Camp this week. They came to lead the discussion after sharing the educational documentary film, The Story of Michael Skolnik, and their family’s story, with almost 75 medical and nursing students and resident physicians. As always, and as quite an understatement, the film is part of the patient safety intensive curriculum that illuminates the need for change in healthcare and healthcare education–not only to make it safer for all, but to also cultivate the skill sets that engender meaningful conversations built on honesty and trust between patients and providers. Following are reflections shared by Patty and David today, ten years after losing Michael to medical harm. Thank you, Patty and David, for your continued presence within healthcare, serving as a reminder that we still have much work to do.

David and I feel many emotions 10 years after our son’s death:

  • Anger that we have lost our child unnecessarily
  • Strange relief that Michael is no longer suffering
  • Unexplainable sadness that Michael is gone and his dreams are unfulfilled
  • Guilt for making decisions we regret because we trusted the doctor and didn’t look further
  • Awe at the courage one young man could manage. Michael was a fighter; he had unbelievable strength to fight back
  • Admiration, immense admiration for the love and unstoppable caring he showed through his horrible ordeal
  • Appreciation for what we all learned from Michael, he had no room for weakness, failure or lies
  • Regret that we lost our best friend and a large part of our souls
  • Happiness that we had a child that never hesitated to participate in life or have any goal intimidate him
  • A love of Michael’s was sailing. Through sailing he learned: ingenuity, resourcefulness, trust, caution, adventure, discipline, and perseverance

Michael has also taught us many other lessons that I want to leave with you, namely that we all have choices, choices about how we live and how we die. If Michael were here he would tell all of us:

  • To smile always
  • To laugh daily
  • To sing every chance you get, whether others think you can or not
  • To dance, even if you have to do it in a wheelchair or bed
  • Not to feel guilty if you don’t know what you want to do with your life
  • To meet new people and make new friends everyday
  • To enjoy your body. Use it every way you can. It’s the greatest instrument you’ll ever own.
  • Get to know your family and especially your parents. You will likely discover that they are the best friends you will ever have.
  • Do one thing every day that thrills or excites you
  • Respect those that earn it
  • Be the Best medical professional you can

We are determined to make a difference for Michael’s life. This is what Michael would have wanted–to have his voice still heard and all the others that have no voice. Thank you for what you do and for helping us keep our promise to Michael–that we all leave the medical field better than he found it.