On Grief, Choices and Being Mortal

The stories shared during this year’s Patient Safety Awareness Week (#PSAW2015) were inspiring! In ETY’s Why Patient Safety Week Matters, Carole Hemmelgarn, Patient Advocate, shared for one of the first times her feelings of grief related to a series of medical harm events that took her only daughter, Alyssa. She wrote that “grief is her twin”, a twin that at times brings comfort and sorrow. Thanks to the power of social media, her message was carried like a gift to many around the world. The following comment confirms yet again that our stories matter to others–and our willingness to share them when ready can ease not only our own, but another’s suffering:

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.

And from @MichaelDFranklin:

Do we realize that such a quote, “grief is my twin” is not specific to loss from medical errors, but to life itself?

Dave Mayer’s ETY post, Caring for Caregivers…, later in the week, served as insight into the grief felt by those administering care–even when that care goes as planned. He referred to an opinion piece in JAMA entitled, “What I Learned About Adverse Events From Captain Sully – It’s Not What You Think,” that discussed the stress involved in caring for others requires many to side-step a recovery process for the self that could revive and encourage positive coping skills for future stressful events. Caregivers are often expected to jump back into the next case without taking time to recover. This equaling of the patient-caregiver grief playing field reflects the silent suffering that can be occurring on both sides of the healthcare encounter when a simple conversation could be the bridge to healing. Grief multiplies in isolation–it can be lessened in the right company when ready. And as Carole did last week, the sharing of our own grief can also be a gift to a complete stranger. How beautiful is that?

Screen Shot 2015-03-18 at 12.33.23 PMHow can we help multiply these gifts; stories of our selves by both patient and healthcare professional? Especially when medical training has only begun to consider the healing power of listening with the heart, as well as the head. This winter, I had the pleasure of hearing Atul Gawande speak at the IHI Forum where he shared insights gained while working on his latest tome of wisdom, Being Mortal. Of all the thoughts he shared that day, the one that has stuck with me four months later is the differing views he and his wife hold for end of life comfort. Atul said he is “down with Stephen Hawking”, and if he is simply “a brain in a jar and we can still extract his thoughts” let him live on! His wife on the other hand (and I summarize) has shared that if she even looks as though she can no longer enjoy life or share in the moment, pull the plug. This take home message is a reminder that individual choices related to how we live and die can be very different, even from those we love most. Unless we choose to talk about those choices–with one another, and with our healthcare teams–we remain a mystery to one another.

In the introduction to Being Mortal, Gawande reflects on how far our current approach to care as we age is from where we once were, or even where so many will find real comfort, including those delivering care. He writes:

I learned a lot of things in medical school but mortality wasn’t one of them…our textbooks had almost nothing on aging, or frailty, or dying…when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them.

There are many in healthcare–patients and caregivers–who also understand there is a better way. I recently found out that a good friend’s Mom was given 6-12 months to live at the younger-every-day age of 71. The choices she made throughout her life most likely have influenced the way it will end, but they are hers. She has found a doctor she likes to see her through treatment, and he is encouraging her to continue to make the choices that bring her comfort and as much joy in the remaining time she has with friends and family. She has found a healer, as well as a physician–someone who can sit with her and listen, hear with the heart and share experiences that might prove healing even though he cannot treat the disease itself.

Atul Gawande is on to something in Being Mortal. In fact, it could be one of his most important works to date. The suggestion that instead of being taught to diagnose, to treat, and to protect the hospital assets, a greater amount of time could be spent teaching healthcare professionals how to share in grief, to share stories of the self and to explore more deeply what is truly meant by the art of healing is an idea that each of us–patient or caregiver–can carry with us into care environments if we choose.


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.