2C Person and Family Engagement
Holistic and thorough person and family integration into the care team is one of the key components for improved outcomes, both in the hospital and post-discharge.
Our APSS outline actionable steps healthcare organizations should take to successfully implement and sustain behavior change for high reliability, shared understanding, thorough communication, and meaningful person-centered care across the organization.
Actionable steps include:
- Executive Summary Checklist
- Leadership checklist guide to determine whether current evidence-based guidelines are being followed in your organization
- Performance improvement plan to follow if improvements are necessary
- Clinical workflow for preoccupation with workflow for areas of improvement
- How to educate patients and family members about the significance of their role throughout the continuum
- Guidance on how to measure outcomes
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APSS are revised annually and available free of charge on our website for download.
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Patient Stories
Rachel Battaglia
As a patient with Common Variable Immune Deficiency, I have had the unfortunate experience of getting sick from previous hospital admissions, especially post-operations.
In preparation for a major jaw surgery, my surgical team had been made aware of my previous medical history and requested a private room with a private bathroom to reduce exposure to others in the hospital. This was extremely imperative as my procedure was occurring in my mouth and nose, leaving many open incisions for possible infections. Following surgery, I was intubated for an entire day due to airway swelling and upon transferring from the ICU, I was told I was being moved to a room with a roommate. I reminded the hospital staff that I had an immune deficiency. However, the charge nurse had told me that they will not cater to my health needs.
I had to call the on-call surgeon to explain on my behalf my need for an individual room. My emergency contact also called and spoke to the charge nurse to express the prior infections I have gotten from hospitalizations. After finally agreeing to transfer me to an individual room, I was transferred to a room where a patient was just discharged with contact precautions. To my disbelief, the patient’s gown and clothes were still in the room and it was clear that the room had not been cleaned at all. I refused to enter the room even with staff reassurance that it was okay for me to enter without the room being cleaned. I waited several hours in the hallway for the room to be partially cleaned.
As a result of this hospital experience, I ended up with a severe, rare, triple bacterial infection that took seven months to clear and has permanently altered the results of my surgery. It has left me with severe scar tissue on my face, causing a deformity. Till this day, I still can not breathe properly due to the consequences of this infection.
Patient Stories
Gladys Alcantar
As told by Gladys’ Sister, Clara Alcantar
On October 7th, 2021, my sister Gladys was forced, against her wishes, to the hospital by her dialysis nurse for anxiety. Instead of being sent to the neighboring hospital that day, she was sent to a hospital that was significantly further for reasons unknown.
My sister Gladys has never had any prior heart or health issues besides renal failure. She was in hospital care for a few hours before her heart stopped. The hospital claims that she had a heart attack. At the age of 23 with no prior cardiovascular health issues, this was difficult to believe.
For the next two months, the hospital neglected my sister and never bothered to engage with our family to shed clarity on what occurred that day. We have filed multiple reports of neglect to administration, yet it seems as if everyone looked the other way. Shortly after, Gladys was transferred to a nearby nursing home where she only lasted six days before being admitted back into the hospital. It was discovered by family that her body was covered in bruises and marks of neglect following her stay at the nursing home.
As of now, my sister Gladys is still a patient at the hospital, where we are very concerned for her safety due to previous experiences. Recently, an electroencephalogram was conducted and results showed that there was evidence of past brain damage that had occurred in her previous care facilities and now new brain damage was occurring. The hospital has recommended that Gladys be discharged to a nursing home, but with previous negative experiences, we are very hesitant and worried about her health and safety. We want a fighting change for Gladys and to provide her proper care. To return to the nursing home makes our family feel as though the hospital has requested that we disconnect her.
In addition, there has been a lot of inconsistency between hospital staff on my sister’s mental state due to the brain damage found. I am sharing my Sister’s story in hopes that instances of neglect similar to Gladys’ story do not go unnoticed and to shed light on the lack of transparency in our current healthcare system.
Patient Stories
Shalynne McKinney
As told by Shalynne's Mother, Amy Vilela
In 2015, our family nightmare began when my daughter, Shalynne, showed up at the hospital in Las Vegas, Nevada.
My eldest daughter, Shalynne, decided to move out to Las Vegas to be closer with our family and to finish nursing school to become an RN. Soon after driving 23 hours straight, from Kansas City, she started complaining about the redness and pain spreading throughout her leg. Within days of her arrival, while I was on a business trip in Phoenix, Shalynne’s pain became so severe that she went to the local ER.
Shalynne was African American, had sickle cell trait, was on birth control, and had just completed a long drive from Kansas City to Las Vegas on an injured knee that was healing. Her symptoms and risk factors were classic of a rare, life-threatening condition called deep vein thrombosis. Also known as DVT, the condition occurs when a blood clot forms in the body; DVT is deadly if left untreated, but survival rates are excellent — about 95 to 97% — with adequate medical care.
Walking into the hospital, Shalynne was not sure if she had healthcare or not. Immediately, upon arrival, the intake receptionist asked if she had insurance. She replied, “no”. She was told it was going to be very expensive and if she left now it would not cost anything. The pain was so intense that she stayed. At their suggestion, my husband called Tricare, military insurance, to see if we could add her to our plan. Shalynne would not qualify, one of the reasons being that they do not cover our children between the ages of 21 to 23 unless they are in college full time.
Shalynne had just arrived and classes hadn’t started so she didn’t qualify. I received a call from Shalynne asking what to do and if I could call to try and get her on our plan. I told my daughter to not worry about the costs; just be seen and we would take care of the bill later. Once in the back, the hospital took her temperature and blood pressure, but when Shalynne mentioned that she did not think she had medical insurance to the hospital staff, the staff was of little help. Even after begging for additional diagnostic testing, they told her to get insurance and see a specialist, since, as an emergency room, they were not a doctor’s office. I received another call from Shalynne crying, “Mommy they’re not helping me”.
They did not satisfy even the bare minimum requirements for a patient presenting as Shalynne did, essentially telling Shalynne to go home. In other words, the hospital showed a lack of patient engagement, denying her proper care.
Shalynne did what they told her and applied for insurance and began researching specialists. Unfortunately, Shalynne had to fly back to Kansas City to finalize her move. Shortly after she landed, she went into cardiac arrest because of the blood clot that had travelled from her leg to her lungs.
I remember receiving the call from her father telling me of Shalynne’s condition. I was in utter disbelief. My daughter was so young with no known medical conditions that would cause an early death. My flight to Kansas City was almost excruciating. Upon walking into her hospital room, the severity of Shalynne’s condition was inescapable. All I could do was hold her hand and beg her to fight to live. My sister, an RN who lives in Kansas City, was appalled to hear how Shalynne had not been screened and kept weeping that they should have caught this.
With each hour that passed it became apparent I was going to lose my daughter. The pain is indescribable. When it was time to turn off life support, I climbed into bed with my daughter and held her. I wasn’t going to let her go through this by herself. My daughter died in my arms as I told her how much I loved her. My last words to Shalynne were, “You will not have died in vain”
Because Shalynne couldn’t show proof of insurance, she couldn’t obtain adequate treatment. Without access to medical treatment, Shalynne died an untimely death. All of her dreams and aspirations died with her.
The problems that I had experienced firsthand were twofold: first, my daughter could not present proof of insurance and second, all patients deserve treatment regardless of insurance status.
For over a year I was immobilized with unbearable grief. Eventually, my tragic loss motivated me to make a difference. During my research, I read that over 40,000 people a year die due to a lack of healthcare. It was at this point that I knew I could not continue with a comfortable existence. My eyes were opened and I would not close them again. I became an advocate for improved healthcare access, even launching a campaign for Congress in my home state of Nevada during the 2018 midterm elections. My journey on the campaign trail is featured in the Netflix documentary “Knock Down the House.”
Today, I continue to fight for improved access to medical care for those without health care coverage. I am a fierce supporter of Medicare for All and have worked tirelessly to improve health care access for the 29% of Americans who are underinsured, including 27.5 million Americans without any insurance, so that no one has to endure the pain our family has.
Patient Stories
Colin Haller
As told by Colin's mother, Linda
Colin James Haller at age 28, ran a successful business that he founded right out of college that would have paid his tuition to medical school. He met the love of his life a few years prior, and the two were planning a wedding as well as adjusting to new living arrangements. Before he could begin medical school, Colin was diagnosed with melanoma, a deadly form of skin cancer. Colin’s cancer went into remission and he was disease free for almost a year. When the melanoma returned, his doctor started him on one of the new immunotherapy drugs. He was informed that the disease would appear to get worse before it got better. Two months later, Colin was hospitalized for shortness of breath. A pulmonary embolism was suspected, but physicians ruled it out. He was moved out of ICU and onto the oncology floor. It was discovered in ICU that he had thrombocytopenia, and it was decided that he would need blood transfusions to correct it. This was Tuesday; he was scheduled for discharge on Thursday. On Wednesday, his attending doctor told him that his blood values were such that he could not continue to give him immunotherapy. Without it, he would die. However, Colin had just completed two weeks of radiation therapy, and a month prior to that 4 weeks of radiation therapy. The doctor suggested that he wait three more days and monitor the blood work to see if the values would improve. He agreed, but stated that he wanted every intervention needed within that three day window. On Wednesday, there was a written order for a thoracentesis to remove water around the lungs. The condition worsened throughout the evening. The doctor in charge of the oncology unit also received a consult from ICU that morning that stated Colin would undergo vital organ damage if he was not transferred there immediately. No one communicated any of this to the patient or the family. No one took any corrective measures to avert the dire outcome of the radiology and ICU warnings. This was a preventable error in communication that would have saved Colin’s life. He died in the early morning hours on Thursday, November 6, 2014.
Patient Stories
Lily Blackburn
As told by Lily's Mother, Chrissie Blackburn
It’s funny how life is laid out before you. For instance, what you are supposed to be doing has been written in the stars. I had no idea of this, of course, until the birth of my precious daughter, Lily. I had a surprise diagnosis of low chronic amniotic fluid that was discovered during my 20-week ultrasound. Call it a mother’s intuition, but I knew something was wrong with our baby even early on in the pregnancy, without the diagnosis. We were told to abort our baby with no reason until we pried. “Low amniotic fluid babies are usually delivered still born and lungs and kidneys do not develop”. We fought for her to have a chance and I went on bed rest for 6 weeks.
Lily came at 38 weeks and 1 day through an emergency C-section. Her Apgar scores were low and she was rushed off to the NICU for oxygen. I told my husband to follow her and to make sure our ID bands matched. A little further background is that I grew up in a household where my mother has been involved in quality and safety for 45 years. Me and my sisters were taught what to ask, what to say and the importance of being involved in an effective way. Little did I know I was being prepared my whole life for my daughter.
On the second day in the NICU we learned that Lily would need multiple specialists: urology, neurology, neuro-surgery, peds-surgery, cardiologist, ENT, nephrologist, orthopedist, genetics, GI, ophthalmologist and therapists too. We learned that she had micro kidneys at 11% function. We were told again to let her go. We pushed back saying we were going to give her this chance. 12 days later we left the NICU with Lily. Multiple appointments, multiple surgeries and so much more had to be scheduled. I remember crying myself to sleep the night we returned home. I didn’t want her in and out of hospitals, seeing multiple doctors, the stress, the strain, the risks.
The first procedure Lily needed was the de-tethering of her spinal cord. Her kidney’s at his time were on the cusp of stage 3 and 4.
She was 8 months old when we went to have her MRI so the surgeon could have a better idea on the severity of her tethering. She was lightly sedated and had an IV and swaddled in her coziest blanket. I asked the tech to take me through the process. You wouldn’t imagine many people would ask this because it was just a picture, right? Wrong. He then shared with me at which point they would inject the IV contrast. I kindly explained that we were not using contrast. He then explained why it is used. I then explained the state of Lily’s kidneys. Everything stopped and three things happened at that moment: one, he thanked me; two, he trusted I knew my child best, even medically; and three, he acted on it- we did not use the contrast. No where on Lily’s record did it indicate that she had kidney disease. For those who my not be aware you NEVER use IV contrast in a pediatric patient with kidney disease as it could throw them into end stage failure, acute dialysis, or death.
This encounter opened my eyes. I had the skill, knowledge and willingness to speak up and be involved. It drove my passion around PFE and how to effectively teach clinicians, patient, families and leaders the importance of PFE and deference to expertise. Patients and families can help to improve safety and quality of care. My career found me through Lily. Today she is 11 and facing kidney transplant. We will always be in the system. It is my personal driver to make healthcare better; but it must be better for all.
Patient Stories
Jack Gentry
When Medical Harm Occurs, ‘Do the Right Thing’
A story of how a determined patient, a dedicated physician and a health system committed to open, honest communication worked together to make the best of a tragic situation
Jack Gentry spent 37 years as a Baltimore City police officer, the last 17 years as a member of the SWAT team and a skilled negotiator. When he retired, Jack and his wife, Teresa—a nurse for 41 years—were looking forward to more time for their family and favorite pursuits.
Jack and Teresa’s plans changed drastically on April 8, 2013. Jack was seriously injured as a result of a medical error during an elective surgery to repair two bulging discs in his neck. Jack was paralyzed from the neck down.
The story of what happened next is unusual in U.S. health care and exemplifies how a determined patient working together with a dedicated physician and a health system that live their values of caring and transparency can move forward and make the best of a tragic, life-altering situation.
During the course of the operation, one of the implants that was used went too deep into the spine and actually hit the spinal cord. The surgeon immediately stopped and collected his thoughts. Next, he called a trusted colleague to verify his plan for completing the surgery. And what he did next made all the difference. He told Teresa what had happened, explained his revised plan for proceeding, and asked her permission. She agreed, and he completed the surgery.
The surgeon’s actions in that moment have been praised by leaders in quality and safety as exemplifying behavior that should be the norm in situations of patient harm: communicate honestly all you know when something goes wrong and avoid taking a defensive posture.
“I’ll never forget him saying, ‘things aren’t going well,’ ” Teresa said. “He admitted what happened. I know I thanked him for telling me.” She also told him, “I know this is very hard for you.”
“When you are on this side of it,” the surgeon said, “one of the greatest fears is that the family and patient will shun you as their provider. This is a tragedy and to provide good care, you need to feel welcomed in their life.” He has thanked the Gentrys for supporting him. He remained a part of Jack’s care team in recovery, and is a family friend.
Teresa was impressed by the doctor’s regular visits, ongoing involvement and obvious concern, and though she was working through difficult emotions, she knew that she and the surgeon were both looking out for Jack’s best interests.
Jack recalled waking up from surgery, learning he was paralyzed and then undergoing a battery of tests over the next few days to evaluate his condition.
“About the third day, I realized I was what they refer to as an incomplete quadriplegic. I said, ‘I’ve heard enough. I’ve had enough tests. What are we going to do to fix it?’ These were the cards I was dealt, and I had two choices: I could play the hand, or I could fold and go home. But I had spent a career as a fighter.”
Indeed, years earlier, he wanted to join the BCPD SWAT team and was told he was too old, at age 40, for the physical tests, the training and the demands of the job. Jack became even more determined to make the cut, and went on to graduate second in his class of 20 trainees.
“I pulled on that in my recovery,” he said. Jack would need intense, inpatient rehabilitation therapy, and he was determined to get to work as soon as he could to maximize his recovery potential.
MedStar offered to cover the cost of Jack’s intensive inpatient rehabilitation, beyond the two weeks his insurance would cover. Jack and Teresa gladly accepted, and altogether, Jack spent five months in the hospital. Otherwise, he would have been discharged to a skilled nursing home to continue therapy.
“That would have been close to a death knell for me because I wouldn’t have been able to get the intense PT that I needed,” Jack said.
“MedStar stepped up to the plate and from Day One said, ‘Stay as long as you need to. We’ve got it covered. Whatever you need when you leave the hospital, we’ve got it covered.’ They took a huge concern off my shoulders,” Jack said.
Jack credits the approach MedStar took with his being able to achieve significant recovery.
“I’ll be honest with you, without the doctor and MedStar’s approach to this, I wouldn’t be where I am today. We have settled our differences from a monetary point of view. We never filed suit. We worked it out, and we did it in two years versus five or six or seven years if we had gone to trial. And in the meantime, where would I be?”
“The litigation environment was always there,” Larry L. Smith, MedStar’s vice president for Risk Management, said. “But we agreed that we would deal with that later. It took two years to settle, because we wanted to make sure we were accounting for Jack’s full future needs. There was no need to rush.” When both parties decided it was time to work out the financial terms, they did so in a one-day mediation session
“One thing we can feel good about at MedStar is, whenever we have the opportunity, our first response is to pull resources together to help the team and to help the patient and family,” Smith said. “Our message to our staff is, ‘Do the right thing.’ ”
As a result of the open, compassionate way that his surgeon and MedStar responded, Jack and his wife, Teresa, have become vocal advocates for MedStar’s approach and the larger movement across the country in the way healthcare providers respond to unintended medical harm.
Patient Stories
Victoria Rose Herbertson
As told by Erin Herbertson
Due to lack of knowledge, communication, and negligence, my daughter was taken from me in an emergency June 3rd, 2018. Miscommunication between transfer hospital and new hospital caused the life if my beautiful 7oz baby girl. I was transferred to this hospital for observation for placenta previa. My bleeding was under control, until the resident doctor gave me pitocin and cytotec causing my cervix to dilate, placenta to explode, and the birth of my baby, who died during the process. There is much hope in my fight for truth. The state is investigating, and I have a great support system from my family. Misjudgment and negligence also led to end another woman’s pregnancy the same night as mine by the same facility. I found this woman by chance—although unfortunate, our combined events help build a stronger case against the hospital. Every day is a fight to the truth and every day I get closer to it. The closer I get to the truth, the more I will be willing to share as well. Due to being in the middle of the case, I am hesitant to share too much. I hope this helps. Thanks, Erin
Patient Stories
Mary Scarlata
As told by Mary's son, Marc Scarlata
March 1, 2015
One of the happiest days of Mary’s life was when she celebrated the birth on her second grandson, Logan. Eleven days later, she would die. She only got to see Logan that one time, the day he was born. Mary needed an aortic valve replacement. She had a severely calcified, bicuspid aortic valve that needed to be replaced. She was an otherwise, healthy 68-year-old with two young grandsons and plans to enjoy her retirement. Had the surgeon just stuck with the aortic valve replacement, she would be enjoying her grand kids today. Instead, the surgeon decided at the last minute to add on a completely unnecessary, very risky procedure called septal myectomy. He provided very vague information about the procedure and we learned after the fact that he himself had very little experience with septal myectomy. We also learned that the assisting surgeon apparently, had very little experience with the septal myectomy surgery as well. So there was absolutely no thought or pre-planning for the septal myectomy procedure. Not surprisingly, the surgeon botched the septal myectomy procedure, leaving a hole in Mary’s heart that could not be closed. In trying to fix his mistake he also cut a chord of the tricuspid valve and had to repair that as well. It seems that he was so in over his head in the O.R. with his mistakes that he had to call in another surgeon.
Unfortunately, due to all the mistakes and extended surgery time, Mary left the O.R. in poor condition which would continue to deteriorate in the ICU. Mary was put on a dialysis machine. She also suffered cardiac arrest in the ICU. Her potassium level spiked suddenly and stopped her heart. To this day, no one could explain why this happened. She was resuscitated but the damage during surgery and in the ICU was too much or her to take. We ended life support 3.5 days after surgery.
To this day, we struggle to understand why this doctor would choose to perform a very high risk procedure that he has limited experience with at the last minute in an attempt to fix an issue that he himself estimates was only 5% of Mary’s problem. When asked why he chose to do a very risky procedure to fix a minor problem, his answer was, “I was just trying to be perfect as a surgeon”. We interpret that as pure ego. The aortic valve replacement alone would have fixed the issue without the septal myectomy procedure.
No matter what the doctor shares about this case, before, during or after, surgery, nothing can take away from the fact that he botched a surgical procedure that he has limited experience with and that didn’t need to be done and this directly resulted in the very poor condition of Mary, post surgery. Also, after the fact, in speaking to a cardiologist we use, we learned that our cardiologist never refers patients to this specific doctor or medical group and this was the case before our family member died.
To make matters worse, the response from the hospital lacked any sympathy and was appalling and pathetic at best. But, finally after a year of trying to get more answers, they did send us a letter that following their own “internal investigation” they came to the conclusion that there “there may be opportunities for improving care” and that the doctor was up for peer review. To add injury to insult, we received a hand-written sympathy card from the hospital with the wrong name for Mary. When we called the number on the card, it was disconnected. This is the only thing the hospital did for us. The hospital and the surgeon clearly preferred to keep this event quiet as they knew it was a bad death so nothing was done about it in regard to us, Mary’s family.
We struggle to understand the thought process and clear lack of proper planning in an already risky surgery. For example….
Why wasn’t Mary provided specific details and risks associated the septal myectomy procedure ahead of time like the other procedures that were done? The doctor has very little experience with the septal myectomy procedure and the assisting surgeon has no experience with the procedure. Yet we know the senior partner surgeon in the group has experience with it so why wasn’t he the assisting surgeon on the case?
Most importantly of all, why is the doctor doing a procedure that is so risky to fix an issue that is 5% of the patient’s problem?
Why didn’t he come and talk to Mary in the pre-op holding area to discuss the procedure and answer any questions? Instead he sent a nurse to get her signature for the septal myectomy procedure. It’s our understanding that this is against the law.
Unfortunately, for more than a year after Mary’s death, we investigated and found out from several cardiologists and heart surgeons that the doctor has a reputation for taking unnecessary risks. The unbelievable grief and frustration and lack of caring haunts us to this day. Perhaps, being a part of your organization is a way to filter or extreme frustration into a positive cause to help educate people on what to ask physicians, how to vet them properly.
Patient Stories
Michael Seres
As told by Michael Seres
In loving memory of Michael Seres, 1969-2020
Michael was diagnosed with the incurable bowel condition known as Crohn’s Disease as a 12-year-old. Having had over 25 surgeries Michael was left with 40cm of small bowel and intestinal failure. He remained in hospital for 18 months receiving all his food and drink via an intravenous feed known as total parenteral nutrition. Faced with no other alternative on October 8th, 2011 Michael became the 11th patient in the United Kingdom to undergo a rare intestinal transplant at The Churchill Hospital in Oxford.
As part of his 15 hours of surgery Michael woke having been given an ileostomy. This is where part of the bowel is brought to the outside of the body and your waste collected in a bag. Managing an ostomy is a challenge. Dehyration is a huge issue with around 25% of patients readmitted. Michael wanted to change his life and the lives of all patients connected to medical bags. He bought parts on line and hacked together a sensor.
That hack became 11Health an integrated platform of proprietary sensors and software. The sensors automatically capture data and then delivers real time interventions back to the patients and healthcare professionals managing patients. Michael’s passion is patient led innovation.
More recently Michael is a two-time cancer patient coping with high grade b cell lymphoma as a result of the medications he takes to keep the intestine from rejecting.
Going through a transplant where 5 out of the first ten died was incredibly scary. Michael lives his life knowing his survival rates have remained at 50/50. His belief is that healthcare is just about a relationship. It takes mutual empathy, respect and trust between patient and doctor, but it takes great bravery of a medical team prepared to partner with a patient. It is not simply about the tech, it is about a change in culture and being brave. That is the big shift we need in healthcare.
Michael became the first ever Patient-in-Residence at the Stanford MedicineX programme where he helped build a model of care and innovation called Everyone Included. If you are curious, brave and have passion then we truly can solve these issues together.
—
Update on June 1, 2020
The Patient Safety Movement Foundation was saddened to hear of Michael’s passing on May 30, 2020, due to a sepsis infection. Michael touched the lives of many and he will be deeply missed by our staff, volunteers and global network of partners and patient advocates. Please read Michael’s obituary here.
Patient Stories
Jessica “Jess” Barnett
I’m Jess, and this is my story. That’s me with the long blonde hair when I was about 12. Around that time I started passing out, especially if something scared me, like if one of my cats jumped up on my bed when I was sleeping or if Mom ran a blender early in the morning. First I’d get really dizzy and then I’d just faint. Mom said it was really frightening because I’d turn blue and stop breathing. Maybe it’s a good thing I don’t remember much about it… The ambulance had to come a lot and it was really scary because we just didn’t know why it was happening…
They sent me to the IWK, our big children’s hospital, and the doctors there thought it was epilepsy, and then about a year later, they said it wasn’t. It was so frustrating because it just kept happening! It even happened when we were on vacation in the Dominican, and I was so out of it, Mom and Dad had to take me to the plane in a wheelchair! So when we got home, we went back to the IWK, but they still didn’t have any answers. It went on like this for a couple more years, with lots more hospital visits, but never finding out what was really wrong with me.
By now I’m in grade 10 and Grandma had read something about Long QT Syndrome, a heart problem, that looks like epilepsy but it’s not, and it’s really serious. We asked the doctors at the IWK if that was what I had, but the neurologist said that it couldn’t possibly be it. Long QT was found on one of my ECGs taken at a different, smaller hospital closer to home, but when we showed it to my doctors, they told us that the ECG was wrong. It was so frustrating, and not long after that we switched neurologists. Maybe this new doctor would know what was happening to me…
Mom and I asked the new neurologist to refer us to cardiology for a full work-up because we still thought it was LQTS, but he wasn’t happy about sending us. He told us it was a waste of time but he said he’d do it anyway because we needed to let go of this “LQT thing.” Mom said he was condescending, but I was thinking, okay, maybe now we’ll get somewhere!
So the cardiologist ordered a bunch of tests; a stress test, Holter monitor, echocardiogram and another ECG. We went and had the tests done and then met with him again for the results. We were so surprised when he told us that all the test results came back negative and I didn’t have LQTS. Mom argued with him, she even tried showing him some information she found online about it and she mentioned the one positive ECG again, but he just dismissed us.
I was so mad!!!!
So grade 11 and 12 continued to see me fainting and our frustration with my doctors kept growing. A few months after the cardiologist told me I didn’t have LQTS, we were still upset that I didn’t have a diagnosis and we met with my neurologist again and he told me he couldn’t do anything more for me. He told me to go home and learn how to breathe through a ‘spell’ and told Mom that she was wasting money on an ambulance. What were we supposed to do? Where were we supposed to go from here? 4 long years this has been going on… He’s wrong, this is real and it’s NOT in my head!!!!
And ten months later I died…
Of LQTS
Not now, not ever… No more birthdays, I’ll always be 17…
No graduation, NO PROM!!!!
No telling my boyfriend, You did your best, it’s okay you couldn’t save me
No time for goodbyes…
No snuggling my new baby niece
No arms to hold my parents up
No chance to tell my sister, It’s okay university will be great, you’ll love it!
No telling my brother I could have loved him better
No way to tell the doctors that I’m working on forgiveness, but I’m just not there yet!!!
And so it began, life without me.
I did, after all, carry the messed-up LQT gene and my family all had to be genetically tested. As it turns out, my dad is the genetic carrier, but I want him to know that I don’t blame him… Luckily, my brother and sister are clear! It is so hard watching the pain my death has caused… My family, my boyfriend, my Auntie, my friends… I feel so helpless watching it all…
This didn’t need to happen!!
So, this is what happened:
- They misread 5 of my 7 test results
- The ‘head’ guy told the ‘heart’ guy that I didn’t have LQTS and then he didn’t really try to find it
- The Holter monitor test was never looked at until after I died, more than a year after I had the test!
- Misplaced paperwork, really? Think about it, I died because of misplaced paperwork!!!!
- ‘Selective thinking’ and ‘cognitive bias’ gave me pretty good odds I wouldn’t see my 18th birthday
- They didn’t even try an implantable loop to figure it out!
- My family sued, and won, but didn’t see the needed changes to save lives
- Litigation sucks, we need a different system to fix this
- After, the doctors wouldn’t meet with my parents, and everyone missed out on an opportunity to heal, even them
- The doctors didn’t mean for this to happen, but it did!!!
And this is what needs to happen now:
- Only electrophysiologists, not cardiologists, should read ECGs for LQTS.
- Use tracking software for all testing
- Implantable loop to be used in checking kids for heart arrhythmias
- One interfacing system for all hospitals in the province
- Make a safe place for doctors to admit their humanness, aka medical errors, so they can be totally honest, and learn from those errors
- Disclosure-conversation training, don’t just say you’re sorry, mean it!!
- Judgments and biases affect all humans, even physicians, and need to be considered in making a diagnosis
- Doctors need to listen to us, REALLY listen to us
- Doctors need to be human beings first, doctors second… and not the other way around. Ever!!
So, this is the end of my story, but not the end of me. Yeah, I’m mad I’m here, and not there, but I live on in the magnolia that blooms on my heaven day in May, in the paper lanterns lovingly sent high into a night sky, and in the gratitude of finding a heaven-sent penny. I live on in the pacemaker of my father, and in the laughter of my sister. I live on in my namesake, the daughter of my brother. I live on in remembrances of those who will always love me. And Mom… Oh, Mom, I live on in your fight, your fight for me and my gone-ness and for all those who are destined to follow me. Thank you for giving me voice when I had none. I will be with you always, laughing and loving you all, I will see you through.
I am Jessica, and I live on.
Patient Stories
Brian Boyle
Every patient in the hospital has a story and an experience.
It was a horrific car crash. On the way home from swim practice in 2004, eighteen-year old Brian Boyle’s future changed in an instant when a dump truck plowed into his vehicle. He was airlifted to a shock-trauma hospital. He had lost sixty percent of his blood, his heart had moved across his chest, and his organs and pelvis were pulverized. He was placed in a medically-induced coma and had to be resuscitated eight times. When Brian finally emerged from the coma two months later, he had no memory of the accident due to the concussion he sustained in the crash. He could see and hear, but not move or talk. Unable to communicate to his doctors, nurses, or frantic parents, he heard words like “vegetable” and “nursing home.”
If he lived, doctors predicted he might not be able to walk again, and certainly not swim. Then, miraculously, Brian clawed his way back to the living. First blinking his eyelids, then squeezing a hand, then smiling, he gradually emerged from his locked-in state. The former swimmer and bodybuilder had lost one hundred pounds. After three years in recovery, he staged what many consider to be one of the greatest comebacks when he crossed the finish line at the Hawaii Ironman triathlon.
Brian is now a published author, healthcare writer, and international healthcare advocate. As one of the leading voices in the field of patient safety, he has given over 150 keynote presentations all over the world for all audiences of healthcare providers regarding the topics of the patient experience, innovation, quality of care, gratitude, effective communication, and patient safety. He also gives a variety of teaching seminars and interactive workshops on these topics, and has participated in several global programs regarding patient safety and quality of care.
The observations that Brian made during his time in the hospital truly inspired him and helped him understand how important the role of communication is between the patient and healthcare provider. When he was able to learn how to talk again, he soon discovered that the power of the voice is amplified when the message is of gratitude, that a simple smile cannot be underestimated, and that body language and tone of the voice are critical components within the hospital room.
In his presentation, Brian offers a rare glimpse of what the patient and family are going through and covers everything that both he and his parents wish they had in the hospital. Brian also provides gratitude and vital information that will inspire caregivers to implement new and innovative ways of providing care, and guidance for families when facing an unexpected tragedy.
Brian’s story about catastrophe, survival, and transcending all odds has initiated new and innovative strategies for improving patient safety and quality of care on an international level, as well as serving as a learning experience for healthcare providers of all backgrounds. At the very heart of Brian’s story and presentation is his appreciation and gratitude for the work that healthcare providers do for their patients.
Throughout his healthcare advocacy, Brian has been recognized as one of Men’s Health magazine’s ’20 Heroes of Health & Fitness’ and awarded several national awards from the American Red Cross, Johns Hopkins, and the ‘Champion of Change’ award from President Obama at the White House in 2012.
His story has been featured on the Ellen DeGeneres Show, NBC’s Today Show, ESPN, and several other programs throughout the country that have earned Emmy nominations and awards. His journey of courage and determination has touched the hearts of many and his story and the message it carries has been celebrated around the world.
When it comes to the patient experience, Brian has become a voice for the voiceless.
Patient Stories
Victoria Baskett
Looking back, my story began in June of 2013. I was enrolled in summer school at the University of North Carolina in Chapel Hill and visited five different healthcare providers in three days seeking assistance for swelling in my throat and face, and difficulty breathing. The first four providers diagnosed strep throat. The fifth visit to the emergency room revealed my true diagnosis to be Ludwig’s Angina, a deep neck space tissue infection. After emergency surgery, being placed in a medically induced coma and on life support, my parents were informed that I would have had only 8-10 hours left to live if I had not been in tune with my body and chosen to speak up.
With thankfulness for the North Carolina Children’s Hospital, I strive to raise awareness as a patient advocate through sharing my story. I am engaging patients and their families, educating to improve health literacy, and empowering others to become informed and involved members of their healthcare team.
As a proactive survivor, I have developed my social media platform, “Get In Tune and JUST BREATHE.” Get in Tune, relating the importance of being in tune with your health just as I am in tune with my flute. “Just Breathe” being the directions I was given before surgery as they attempted to secure my airway passage. My mission is to tell people of all ages the importance of patient safety and health literacy.
Through my platform I have been able to create statewide collaboration with the USO of NC, North Carolina Department of Public Health, North Carolina Hospital Association, and more. I have also been selected to serve on a state and national council, The North Carolina Quality Center Patient and Family Advisory Council, and The National Patient Safety Movement Handoff Communications Workgroup.
It is my hope that through my story and my work, I can save lives.
Patient Stories
Bill Aydt
As told by Karen Curtiss
On an icy February day, a young man suffered a severe brain injury in a motorcycle accident. One of his healthy lungs was gifted to my dad, who was near death from pulmonary fibrosis.
Dad’s nine-hour surgery at “Super Star” medical center, the #1 transplant unit in the world, went so well his doctors predicted he’d be out on the golf course by the 4th of July. A dozen preventable hospital acquired conditions later — seven months after he got his priceless 2nd chance at life — Dad died, never having left the hospital.
We knew that patients should have someone with them during a hospital stay, so my siblings, mother, and I arranged for one of us to always stay by Dad’s bedside for a recovery period estimated at six weeks — tops. We had a vague idea that we might be called upon to speak up as advocates on dad’s behalf, but frankly, we had no idea what that might entail. We simply trusted ourselves to “figure it out” After all, we were all college educated and seemed to navigate life pretty well.
Though I didn’t know the term “patient-centered” at the time, we assumed Super Star, a leading academic medical center, offered such care — that is, care in which the entire system centers on what’s best for patients. This flawed assumption tripped us up over and over again.
One other thing we didn’t know at the time: with Dad’s discharge on the horizon, his fate was sealed with a fall. He was confined to horizontal traction until a neurologist could evaluate him “in an hour or two.” Instead, a full 57 hours passed before the neurologist came to administer a 5-minute test that confirmed Dad hadn’t suffered anything more than a bad bruise. The next morning, Dad was rushed to the intensive care unit with a raging fever and pneumonia, the inevitable result of prolonged traction.
A few weeks later, a blood clot was discovered in Dad’s arm on a Friday afternoon. His doctors decided to “wait and see what happens over the weekend.” So terrified that the clot would travel, Dad barely budged a muscle over the weekend, but even so, the clot landed in his new lung, compromising its function. I asked for a group meeting with his doctors and pleaded: “Please, tell us how can we get in front of anything else that could hinder Dad’s recovery? How can we help?” Arms crossed, their response was that there was nothing we could do.
Then came the infections: MRSA, a deadly staph infection. Then, C. difficile, yet another potentially fatal infection. Both were treated, then re-occurred — relentlessly. On the 4th of July, Dad was nowhere near a golf course.
In September, he was diagnosed with yet another infection, this one untreatable. Mom and Dad held hands for the final time in those final hours.
Despite everything, my mother wanted to thank Dad’s transplant surgeon for giving him a second chance at life and say goodbye. His staff alerted him, and Mom waited three hours, bedside with the body of her husband of 51 years, just to end their last journey together on a gracious note.
The surgeon never came and never called. Finally, she left for home. Dad’s casket was carried in the belly of her plane back to Florida.
