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.
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.
Hero – a remarkably brave person; somebody who commits an act of remarkable bravery or who has shown an admirable quality such as great courage or strength of character especially under difficult circumstances; somebody admired.
Carole Hemmelgarn is a hero.
In the video that follows, Carole poignantly shares her daughter Alyssa’s story, and why their family’s loss has been the driving force behind the change Carole is fighting for – the delivery of safer care for all patients and families. Every person lost to preventable medical harm is a tremendous loss. Carole, and other courageous heroes like her, including Patty & David Skolnik, Helen Haskell, Victoria & Armando Nahum and Sorrel King give their time, their heart and their stories so we never forget these unfortunate events are not just statistics.
They are my heroes.
Anna Quindlen is someone I have long admired. An aspiring journalism undergrad student, I read Living Out Loud almost twenty years ago, and was inspired by her need to share ‘the story’, as well as her ability to make a successful career out of doing so. Now, a well-known and respected Pulitzer Prize winning journalist and repeat best-selling author, Quindlen recently shared her wisdom and words with healthcare leaders–young and old–at the annual AAMC meeting in Philadelphia. It comes as no surprise that the accolades and tears shared in the Storify snapshot of tweets from her talk show organizers made an excellent choice by inviting her to speak. (Click image to go to Storify page if interested).
For those who missed her talk, Quindlen has given permission to the Arnold P. Gold Foundation to make the full text of her speech available until December 3rd, and it can be found here. Having read the transcript, I wanted to share some of the highlights in the event the tyranny of the daily takes priority and prevents the well-meaning click-through before 12/3.
Per her transcript, Quindlen shared the following:
- The story of a repeat surgery she recently underwent, along with the differences in the care she received from her anesthesiologists. Do you know who I am? is the takeaway for providers listening in, as the care team who understood her needs, values, preferences and goals knew who she was–someone who did not want a general anesthetic–and that made all the difference.
- The similarities between healthcare and journalism, and how in this day and age of technological advancement and depersonalization it is still the ability to hold the gaze of a fearful patient that makes the greatest impact.
- The story of the care her father, the patient, and she, the patient advocate, both received as they navigated and negotiated his stay on a burn unit. This story alone is worth the time for the click-through above, but in short, her father’s care team acknowledged and appreciated the knowledge she brought into the room, and as a result her father’s care plan was developed with the family’s needs, values, preferences and goals as the foundation. And while she says that the care he received was best-in-class, it was the social worker who stopped in to ask how they were doing, the nurse who played music for her father when she could not be present, the doctor who expressed three times his understanding of how hard it was to make the choice for palliative care, and the sympathy card she received from the staff, that stay with her now. But perhaps most important of all, she shares that her father’s care team:
…gave me a sense of power and control in a situation in which I was bound to feel powerless…they put a human face, a series of human faces, on my father’s care.
- And finally, she shared four “simple” takeaways for the audience: 1) Try to be present and in the moment 2) Acknowledge uncertainty 3) Practice empathy 4) Try to be kind
As news outlets continue to talk about patient harm, pushing for accountability and bantering about frequency, a more subtle form of harm occurs more frequently and is not meaningfully measured. That harm is steeped in the missed opportunity to know the patient. Providers fail patients on a human level because care providers are human, and humans caring for humans is far from a perfect science. Maybe it’s also about patients resetting expectations and not setting themselves up to be disappointed by, as Quindlen refers to, MDietys that are in fact just people like them. The four simple truths or takeaways she mentions are things all of us, patient–provider–caregiver–sister–son–father–boss–administrator, can ascribe to and make any encounter–healthcare or not–a better one.
Thank you, Anna Quindlen, for continuing to inspire others with your words!