Why National Patient Safety Week Matters
Posted: March 9, 2015 Filed under: Just Culture, Leadership, Medical Error, Patient Advocacy, Patient Centered Care, Storytelling | Tags: Grief, Healthcare Leadership, medical harm, National Patient Safety Week, Patient Advocate, Patient Centered Care, Patient Safety 4 CommentsToday’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.
However, 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.
- 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.
- 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.
- 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.
- 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.
Educate the Young 
How beautifully stated by Carole Hemmelgarn. In my heart I have always known it is far worse to lose a child to medical errors than to lose an elderly parent but somehow it was no solace as I wallowed in my own grief from losing my elderly mom too soon to medical errors and neglect. Ms. Hemmelgarn has put the loss of a child in perspective and has made me realize that even though I still grieve after 4 years, I do not have a lifetime of missed milestones to experience even further loss.
Barbara Shoemaker
MedStar Southern Maryland Hospital
Carole, Your story is so important. I never thought of my grief also bringing solace. I lost my father and thought that was bad but 10 years later I would lose my sister and mother in the same year. I have cried (for a few minutes) every weekend since August 2013 when my sister died and I thought somehow I needed to stop because this is not normal. After reading what you wrote maybe I should stop trying and just rejoice in the memory of my loved ones a few tears is a small price to pay to remember them.
I lost my husband to a host of medical errors. Medical errors are endemic in hospitals – even ones considered the “best” that the U.S. has to offer. My husband’s death also effectively ended my life as well. That is something that is never discussed. The 400,000 that die of medical errors are like pebbles dropped into a pond, the ripples of grief expanding, swamping those nearest the person who died and spreading out in ever widening circles. Literally millions of people are impacted with anxiety, depression and stunted goals and expectations due to their emotional proximity to those patients who die of medical errors. Compounding the hurt to the ones left behind and ravaged by the medical industries indifference and therefore acceptance of this problem are the millions of anti-depression and anti-anxiety medications that are written to “calm” the survivors. Personally, I trust no medical personnel having had first hand experience of how many medical mistakes are made in physician/patient encounters and hospitalizations.
More medical errors lead to more treatment, and more treatment leads to more money for the medical industry. This creates a disincentive to correct the problem. Not only is there no economic incentive to change this course of events, there is actually a monetary incentive to continue along this path of making medical errors.
A million thanks to you Carole for finally sharing your very powerful story here on public radio for the all to hear. What happened to your family was horrific and has stayed with me for many years since we first met so long ago. As a healthcare safety advocate and grief counselor, your story has indeed been the one most haunting to me, with so many unanswered questions. The story not only ponders many questions of care and diagnosis, but also finds it’s way into the darkest part of the silence that follows such irreparable harm. Carole, hoping that many will learn from your story and become more proactive, more engaged and more assertive for themselves or their loved ones before it is too late. Thank you again for going down this brightly lighted road of sharpness to warn others of the most profound but painful truth.