One increasingly important realization by healthcare professionals is the need to both engage and encourage patients to participate in their care. The following story of recovery and healing from double mastectomy surgery is told by Ev, a grandmother of nine, mother of three and wife to husband Will of 44 years. I asked Ev and Will to share their story because, I was fortunate to be included in Will’s weekly updates during and after Ev’s surgery. Each message not only gave reassurance to family members near and far that she was doing well, but ended with an inspirational blessing for all; the family’s faith first and foremost in Ev’s healing process. Their faith was a silent but strong part of the care team, and their strength as a couple was a beautiful testament of what teamwork and love can do for a marriage and the trials that life presents.
I include Ev’s words unedited, as she hopes they will help another breast cancer patient facing a similar surgery–to find answers to questions, insight to questions they may not know they have, and to find the same peace be it through faith, a loving caregiver or a skilled care team. Ev had all three–the trifecta of healing for her, and as a result, many, many happy people including her nine happy grandchildren, Ev’s daughters, and her partner in life, Will.
What do I do now? I was growing quiet impatient with follow-up doctor visits regarding questionable mammograms, ultra sound screenings, MRIs and biopsies during the 4 years since I was first diagnosed and treated for breast cancer. My husband, Will, and I were also seeing physical changes (dimpling and caving in of the skin) which was now occurring in the breast where lymphedema was prominent and seemed impossible to alleviate. I had gone to physical therapy and done exercises at home for two years. It didn’t work. The lymphatic system in the breast barely worked. The left breast tissue was ruined by radiation and very angry. My practical problem was regarding bras—being size E and weighing 148, I could barely tolerate wearing any bra I tried.
Dr. Moline, my original breast surgeon, said she could do nothing to fix the angry tissue except a mastectomy. She explained that it would be completely paid for by my existing insurance “to make the situation right” after cancer had struck. This was a big factor in my deciding whether or not to have a mastectomy. My oncologist advised me to have a double mastectomy to alleviate further testing of both breasts– “Nothing there, nothing to test.”
Dr. Moline gave me the names of three plastic surgeons. I choose the first and only one I visited. Dr. Williams was very clear, gave us several options, and sold my husband and me on the benefits of a double mastectomy with Tram Flap reconstruction of both breasts; this would all be done in one day during 10 hours of surgery. Dr. Moline would do the double mastectomy and Dr. Williams would do the Tram Flap with the help of her team.
Will was in total agreement. He was positive and started plotting what I might need for this huge surgery. We purchased a leather electric recliner not only for sitting but for sleeping the first week home. The electric mechanism was very helpful. Will purchased a hand-held shower hose with nozzle to fit in our shower and found a folding chair I could sit on for the first showers.
Our faith is very important to both of us so we relied on the Promises of God to make decisions, to live each day and not worry or loose the feeling of peace. Our family, neighbors, and church friends prayed, brought food, sent cards and flowers, (even new PJs), called and visited. Their sense was not of dismay or, “What are you doing?” Attitudes were positive and they seemed to believe and say, “You’ll get through this!” Three pastors visited us and read Psalms and assured us God was with us.
The day of surgery was a breeze for me. A hospital chaplain said a prayer for us before I went to surgery. Will was sent home and the hospital nurses and doctors called him every 2 hours with good updates. Our house is only 10 minutes away from the hospital so he was close. I remember seeing him about 8:30 pm. I was certain no surgery had been performed on me because I felt no pain or nausea. All I really felt was quite a bit of stiffness. I was checked every hour to make sure the blood vessels that had been moved were successfully reconnected and working to nourish the tissue that had been moved from my belly area to the breast area. I had nine drains. I was down to five drains when I left the hospital 5 days later. I lived on ice chips the first couple days, moved on to clear liquids, and ate a salad later on. I was able to get up and sit in a chair the third day. I remember moving myself that very short distance by myself; Will remembers it differently (he assisted). The nurse helped my attitude about getting up by saying, “The first time is the hardest, and after that it gets easier every time.” She was right. It did get easier. I walked slowly into the hospital bathroom and had a shower on day four. The nursing staff and doctors could not have been more professional. I tried to follow all the rules. I was a little bent forward for a couple days.
At home, Will removed all the smaller rugs on hardwood floors from the recliner to the bathroom. He had learned at the hospital from the nurses, how to empty, measure, and clean the drains. I had completely cleared my schedule and did nothing but rest, eat a bit, and sleep. Will was a remarkable nurse once again. He was willing and able to help me and brought his sense of “get it done” with a cheerful attitude. I was unable to keep track of my meds: Oxycodone for a few days, Ibuprofen 600 MG, and Acetaminophen, so Will took care of dosages and times. That was so helpful. Our closest friends and our family were updated daily with a quick sentence or two by email of my progress. Will was able to keep them informed and they appreciated a quick update. All the drains were removed by the end of the second week after surgery. The metal lanyard that held the drain bulbs against my belly was one of my only irritations. Metal is pretty hard. Do they make a plastic one?
I’m back doing most things except lifting much. I can’t lift my grandchildren but I can hold my 3 month old granddaughter. I can reach most things in my kitchen but found weeding last week a bit of a challenge. I have started taking my walks in the park where it is flat.
I am so delighted I had this big surgery. The chance for breast cancer is gone. A reduction in my breast size is also a huge blessing. A caring support group and husband not afraid to help with the recovery process make it all that much easier. I know for sure a top team of doctors can do successful surgery and make you comfortable, but God is the One who heals.
Following are leads from Resident Physician reflections after attending the first 2016 session of the Telluride Experience. Links are included back to the original posting on the Telluride Experience blog. Thanks to all who so courageously offered their stories from the front lines of care so that others can learn through them. It is by sharing our stories that we free another to tell theirs as well.
The Magic In Transparency
This phrase struck me as the perfect way to describe an experience I had my intern year. My first continuity ob patient had a fetal demise at 34 weeks. She was the first patient I had followed from the beginning of her pregnancy. I performed her dating ultrasound at 9 weeks. Unlike many of my patients, she and her husband faithfully came to every prenatal visit. She did not smoke, use drugs and followed the dietary guidelines. Her husband was the chatter one of the duo, while she would calmly take everything in at our visits. They both teared up when I told them they were having a girl at the 20 week ultrasound. They told me her name was Emma. More…
I was not going to share this but have been inspired by the courage of others around me. So thank you!
…In the first few days of Residency, we had a mandatory “Emotional Harm” meeting. I thought it was nice of them to do and always a good reminder. It focused on the empathy towards the patient and not losing our empathy when getting in the rhythm of dealing with similar situations and cases over and over again. I loved that they did this. This is something that is so important to remember and necessary to address.
Looking back however, I just wonder what about my emotional harm? Where are my resources? In this first 7 months of my residency experience two Senior Attendings committed suicide. I did not know the first, but I certainly knew the second. While there was heartfelt sadness and memorials to honor both, there was nothing else. No counseling offered to employees, no conversations, no checking in after some days, nothing at all. More…
Humility and Humanity
Humility and Humanity. This phrase stuck with me from Dan Ford’s talk. From medical school through residency it is drilled into us to be confident, un-phased, unemotional , these qualities are attributed to professionalism and success. Doctors are supposed to be infallible , so when we face an adverse outcome thats what we do instinctively. We become distant, listening to Helen, Sorrel and Dan thats the exact opposite of what patients need. Alienation only leads to prolongation of suffering for the patients family as well as the caregiver. Moving forward I hope to make these values a foundation of my practice.
Reading all the stories from my peers encouraged me to share as well, this was an amazing group of people and faculty. My first ICU night rotation as a PGY-2 I admitted a patient in DKA and septic shock. More…
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.
As in Doha, SolidLine Media was along to capture the stories being told at The Telluride Experience: Sydney! Thanks to Greg, Michael, John, Ali and team for pulling this short video together utilizing movie magic across the continents in time for the Minister of Health herself to view it live in Sydney, at the Clinical Excellence Commission’s reception for students and faculty before we returned home last week.
Truly a great team effort by all to bring the reflections and voices of change to life.
The Telluride Experience faculty has arrived at Q Station Sydney Harbour National Park, an idyllic Telluridesque location in Manly, Australia. The Telluride Experience: Sydney faculty and students will be tucked into this retreat location in Sydney’s National Park just across the water from the lights and cosmopolitan city of Sydney. Q Station and the National Park has a little bit of all Australian terrains, including Manly cove beachfront, bush land and the protection of a canopy of rainforest-like red gum trees.
These spectacular trees serve as home or rest to 150 different types of birds, and resemble our collective efforts at changing healthcare culture by also renewing themselves each year, as they shed their bark presenting a fresh, new salmon colored skin to the surrounding environment.
An old Quarantine Station protecting Australians from smallpox or other contagious disease potentially carried by those seeking to become citizens during the 1830s through 1984, this could not be a more fitting location to host what will be the epicenter of local of patient safety learning over the next four days. Last night, the group shared conversation, introductions and local food and wine to start the week, welcoming one another to yet another intimate and
International patient safety Telluride Experience. Join the conversation on social media, using #AELPS16.
Gaming and low fidelity simulation along with patient narratives are two favorite learning tools used at the Telluride Experience Patient Safety Summer Camps each year. This year is no different, even as the team travelled halfway around the world to share these tools and a passion for patient safety with the goal of encouraging and empowering young healthcare professionals in Doha, Qatar to put patient first.
The teeter totter game–a simulation of teamwork, collaboration and communication–once again proved to be a favorite activity. The strongest takeaway by many from Day One by the students was the value of patient stories shared by Carole Hemmelgarn and through Helen Haskell and her son Lewis’s story via film. Carole, who told her story in person, left a lasting impression on many in the room–so much so that the very values expressed before and after her session as to what a safety culture should include changed in just a short but powerful one hour presentation. One medical student, who posted on the Telluride Experience blog, said the following about the day:
It has only been one day but my perspective on patient care has completely been shifted. I understand now what this phrase ‘patient-centered care’ which doctors always use to sound sophisticated really means. It took listening to the family members of patients harmed by us to help me really see the world from a patient’s perspective. I hope I will forever carry that with me, and use it to improve my practice each and every day.
For me, the greatest takeaway has been how very similar the hearts of healthcare students in Doha, Qatar are to their peers in Telluride, CO, Napa, CA or Washington DC. The caring and concern they expressed for one another and their patients is exactly the same as that expressed by their peers in the west. The local cultural challenges, however, are what present differences in the way these young people will approach the delivery of care in Doha. For example, one 3rd year medical student expressed concern that while even talking about cancer or suggesting a mammogram to a Doha woman is tabu, the need to deliver standard of care for that patient is more important to her. How to navigate these complex communication and cultural challenges, and to do so in a patient centered way, is what brought her to the Telluride Experience Doha.
The Telluride Alumni Network is now filled with even more global perspectives as we added over 100 Qatar healthcare executives, care providers and students this week in Doha!
For the third year in a row, MedStar Health celebrated its “HeROs” at a red carpet “Academy Awards” like luncheon in honor of healthcare professionals who went above and beyond the call of duty in 2015 to ensure patients stayed safe while under our care. The HeRO program is part of our continued high reliability journey to create a culture where every associate feels safe speaking up when they see something in the care environment that might contribute to patient harm. Our weekly Good Catch Monday stories and our monthly Good Catch surprise celebrations across our health system have now become embedded within our culture.
Sorrel King, who has served on MedStar’s Patient and Family Advisory Council for Quality & Safety since the Council was launched in November of 2012, has participated in our Annual Good Catch Luncheon the past two years, where she presents the Josie King Foundation’s Josie King HeRO Award to one of our MedStar caregivers. This year, our HeRO’s luncheon fell on an anniversary no parent should have to recognize—fifteen years to the date since Sorrel’s daughter Josie died due to preventable medical harm. Sorrel acknowledged the date during her remarks and said she could think of no other place she would rather be than celebrating our MedStar HeROs and the work they are doing to ensure no family experiences a similar loss.
Patients and family members like Sorrel have always been my greatest mentors and personal heroes. The work they do to prevent harm after a loss of that magnitude never ceases to inspire and amaze me…something I am not sure I could do faced with similar personal tragedy. This year, in honor of Sorrel and all she does every day to make care safer, MedStar Health created a new Community HeRO Award. I had the honor of presenting this award to Sorrel…the very first of its kind. The words thank you will never express the depth of gratitude we have for Sorrel and so many other patient and family advocates who volunteer their time and work alongside healthcare professionals to help make care safer for everyone.
As healthcare providers, we are given a privilege to care for others, and must always remember that we treat complex individuals, making choices that affect their lives, families and personal well-being. At the same time, our patients must recognize that care providers are people too– always trying to do the best they can while juggling numerous responsibilities on a daily basis and working in a system that still has too many flaws. The clinician-patient relationship is most effective when both sides meet in the middle–a “safe space” where each is able to truly see one another and achieve the mutual understanding needed to succeed as a care team.
High Reliability science is one area we are looking to for answers to systems failures in healthcare. High reliability organizations stress the importance of “Stopping the Line” when a worker senses something doesn’t feel right. The concept has been shown to help reduce harm in many high risk environments. What if something similar existed for communication concerns in the healthcare environment?
The following short video, entitled Please See Me, created by patients and caregivers for patients and caregivers, offers a possible solution. Can “Please See Me” become that safe space, where patients and family members can stop the line and share those words if they feel their needs are not being heard or addressed? At the same time, can caregivers use the same phrase when they feel they are not being understood by patients and family members?
Many of us believe the phrase “Please See Me” can be the start of something special, creating that safe space and providing a phrase that helps improve communication and understanding in every healthcare environment leading to better outcomes.
Patients and Care Teams
Working as Partners
In the Spirit of Healing and Compassion
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.
One of the highlights of our Telluride East Patient Safety Summer Camp each year is our trip to Arlington National Cemetery. The cemetery serves as a burial-place for “laying our Nation’s veterans and their family members to rest with dignity and honor.” Numerous daily honors, such as a horse-drawn caisson carrying an American flag draped casket, the firing of three rifle volleys, and the long bugler playing Taps, remind visitors of the service, sacrifice and valor displayed by those in the military protecting our freedoms.
As we walked through the cemetery, it was hard not to grasp the magnitude of the gravesites beside us. Everywhere I looked, white gravestones dotted the landscape. The tombstones seemed to go on forever…in the lower areas of the cemetery close to the main entrance, walking up the hill to Arlington House, or following the signs to the Tomb of the Unknown Soldier. Everywhere I looked there were rows and rows of white tombstones – tens of thousands of them. Six hundred and forty-eight acres of tombstones marking burial sites with little room for much else–the cemetery is pretty much full, and needs more acreage. In fact, they recently chopped down a controversial 2 acres of trees to find a place for our more recent casualties of war. The informational brochure says the cemetery is currently the final resting place for more than 400,000 people.
400,000 people…the irony of that number struck me. That is the same number of patients who die every year due to preventable medical errors according to an article published in September 2013, A New Evidenced-based Estimate of Patient Harms Associated with Hospital Care in The Journal of Patient Safety. Lucian Leape brought some conceptual reality to the medical error crisis years ago by using the analogy of one jumbo jet crashing every day. All those white tombstones that stretched to the end of the landscape and seemed to go on forever reflected the same number of patients who die each year from things like unnecessary infections, failure to recognize or rescue, medication dosing mistakes. We fill an Arlington Cemetery every year.
We have surpassed one jumbo jet per day. Standing at the top of the hill, looking in all directions…north, south, east, west…seeing the 400,000 gravesites spread out before me, and thinking this could be a preventable medical harm cemetery for just a single year is incomprehensible and unacceptable. What does it require for others to take this national epidemic seriously? When will we see the urgency needed to create meaningful change? It is a visual all Hospital CEO’s and political leaders should be required to experience.