Article in ‘Patient Experience Journal’: The critical role of family in patient experience

0109421Editors Note Through his story of a near life ending event to a recovery that continues to inspire so many around the world, Brian’s greatest gift in the authentic passion he brings to the topic of the patient experience. Inspired by those who in his darkest hours still honored him for the individual he was and the humanity he represented, Brian continues to strive to elevate the conversation on the little things we can do to have big impact on people’s lives. Brian’s latest book, The Patient Experience: The Importance of Care, Communication, and Compassion in the Hospital Room, continues his contribution to the patient experience conversation as an advocate for all the good that can be done in healthcare every day.

The world is full of unknowns. We were a normal family living a happy life, and then one day, a near fatal car accident changed everything. On July 6, 2004, I was on my way home from swim practice and was involved in a near fatal car accident with a speeding dump truck. The injuries were catastrophic. I lost 60% of my blood, my heart was ripped across my chest, lungs collapsed, and my major organs and pelvis were pulverized. I had to be brought back to life eight times on the operating table. The life that my parents and I knew was shattered. For the next few months, we were constantly faced with unfathomable uncertainty and total despair.

While in a two-month long medically induced coma, I was unable to move or talk to anyone around me, yet I was able to hear, see, and feel pain for a majority of my time on life support in the Intensive Care Unit. As a family, we never thought that we would face such a traumatic situation, or rather, such a horrific nightmare. We were thrown into a place consisting of surgeries, machines, tubes, blood, and medical terms that caused utter confusion. We were in the hands of my medical team, and a few of them even said I was “in God’s hands.”

As a patient, or the loved one of a patient, life seems to go on standby when you enter this atmosphere. You frequently come face to face with the strength of the human spirit and the perseverance of the mind and the body. Throughout this entire ordeal, my parents and I experienced how unforgiving life can be and how it can drastically change in the blink of an eye. There was no guidebook or support group to prepare us for what we were in for as a family.

Communication was so important to us in the hospital setting because it helped us prepare for what was around the corner. My favorite care providers — my “dream team” members — were the men and women that came into my room with a positive presence, spoke to us, got to know me and my parents, and made a sincere connection with us as a family. This engagement meant a lot to us because it built a foundation of trust and friendship, which was a comforting sense of familiarity in an unfamiliar environment.

Most of my physical pain was taken care of with the help of morphine and heavy sedation that was continuously being pumped into my nearly lifeless body. I may have been the patient laying in the hospital bed, I was not the only one in that room who was suffering. My parents didn’t have morphine to take away their pain that began the moment they received a phone call from my hospital alerting them about my critical condition. That phone call changed our family, and as much as we have persevered over the years, the entire experience still lingers as if it were yesterday.

In my situation, as a patient clinging to life in room 19 of ICU, I did everything I possibly could to show any positive signs of life to my parents because I knew they were having a really difficult time. They did their best to stay strong. As a family, we experienced good days and bad days in the hospital regarding my recovery, and some days were just devastating. But, seeing my parents next to my hospital bed gave me hope.

When I was being weaned off the heavy sedation, I did everything I could to show them that I was aware of their presence because I could see how much happiness it brought to them. A smile, a blink of an eye, a twitch of the finger may have been just subtle signs of activity, but that was physical proof that I still existed and was desperately clawing my way back to life. Having my parents there with me in the hospital meant everything to me. Growing up, they were my role models, my friends, my supporters — and in the hospital, my guardian angels.

I often reflect back on my time in ICU as a team effort, between myself and my care team, and also with my parents, family, and friends. The loved ones of a patient are an integral part of the overall care plan, and that is why I believe in patient and family centered care. In this day in age, the patient experience is a very important focus and discussion. But, we must always be willing to look one step further and be aware of the experiences of both the patient and their family in the hospital setting.

Assuming that a healthy and stable relationship exists, the family knows the patient better than anyone else in the world because they have spent years living with or in close proximity with this person who is now the patient. In the hospital, you can spend a few minutes or even a few hours with a patient in order to get to know their likes and dislikes, as well as a brief understanding of their background. However, no matter how much time you spend with a patient, the family, especially the parents, guardians, or spouse, will have the advantage when it comes to knowing the patient best. For a younger patient, the maternal and paternal bond develops when their child is born, and this genetically acquired connection is so powerful that they are able to recognize practically imperceptible physical and behavioral changes when nobody else can. The family and friends will typically know the common gestures, movements, body language, personality traits, inner thoughts, idiosyncrasies, behaviors, and typical phrases and concerns of their loved one.

On numerous occasions where I have talked to parents about their children who were unconscious, comatose, or in a catatonic state, they discussed with me how they were often aware of the feelings and emotions of their children — even though there were no words actually being spoken. The patient’s body may appear almost lifeless to anybody else in the room, but to the parents, there is almost a telepathic interaction that takes place where they can see visible signs of life. Their level of awareness originates from their love, which is unbounded by the normal limits of science and medicine.

As the patient is recovering, this is only the beginning of the journey for the family. They have questions, thoughts, and concerns about how the life they once knew has now gone on standby. Including the family in the treatment plan is important, and I have learned over the years that just taking the time to listen to the questions and concerns from the patient and family means so much. Even if an answer can not be given, just the fact that their concerns were listened to and addressed goes a long way with the healing process.

When communicating to the family, it is helpful to:

  • Establish a point of contact in the family to relay information to the rest of the family and friends.
  • Create website to share information regarding the patient with family and friends (e.g. CaringBridge).
  • Review information regarding the hospital procedures, visiting hours, important contacts and their phone numbers.
  • Be aware of what you are saying, but also how you are saying it.
  • Speak in a gentle tone of voice, using their names and the name of the patient.
  •  Try to form a connection in order to build a sense of trust.
  • Reflect on the type of family you are talking to.
  • Provide realistic expectations.
  • If you can’t answer their question, just taking the time to listen helps a lot.

When you are focusing on the goals for the patient’s recovery, the doctors work with the nurses, specialists, and patient’s family to decide on the appropriate care plan for the patient on both a short- and long-term basis. It is vital that this multi-disciplinary approach occurs during the formation of the care plan and is frequently updated as time goes on. The loved ones of a patient may not have a medical license or healthcare background, but their voice and presence matters in the hospital room. Similar to a mechanical system of interlocked gears, the communication between the patient, family, and health care providers is very important throughout the entire recovery process.

Each group spends time observing the patient, therefore every group can contribute to the overall treatment plan. There are so many advantages to taking this approach because every voice is heard, every concern is addressed, and every potential approach is analyzed by the overall team before a plan is pursued. This plan is truly enriched because all contributing groups provide their input, helping get the patient from their current state of being sick or injured onto a path of recovery.

The full article can be found here.

 

‘The Patient Experience’ Book Review in Nursing Standard (United Kingdom)

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Nursing Standard is the UK’s best selling nursing journal and the ultimate resource for students and fully qualified nurses.

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The Patient Experience: The Importance of Care, Communication and Compassion in the Hospital Room

Reviewed by: Paul Jebb, Experience of Care Professional Lead – NHS England

The author’s personal account of his experience as a patient forms the basis of this book. After a car accident, Brian Boyle was in a medically-induced coma for two months and was unable to move and talk, but he was still able to hear, see and feel pain. He relied on his caregivers and family.

The book discusses and reflects on the personal care he received and how healthcare teams delivered patient-centered and family-centered care.

Offering an extraordinary glimpse into the perspectives of the patient and family, the book inspires the reader to understand how compassionate, patient-centered care can eventually improve outcomes for patients.

Topics include recognizing the feelings and emotions of the patient, identifying simple methods that can help to provide emotional support, and understanding the motivational role that communication has for the healthcare provider, patient and their family.

The text is a must-read for healthcare staff working at all levels and from every background. Its valuable insight into the experiences of patients will prompt staff to reflect on and understand the important role that caregivers can play in changing outcomes.

Read more…

Brian Boyle’s Patient Experience Book Featured in ‘The Mulberry Tree’ Magazine (St. Mary’s College of Maryland)

IMG_1533aBrian Boyle ’10 has written his second book entitled The Patient Experience: The Importance of Care, Communication, and Compassion in the Hospital Room. While his first book, Iron Heart, told the story of how, at age eighteen, he survived a horrific automobile accident, his recovery and all that he had accomplished since his accident; his new book is written from the patient’s perspective to help caregivers gain valuable insight and understand new ways to provide care for patients and their families.

The book, based on his recovery process, includes artwork, journal entries and writings from classes he took as a student at St. Mary’s College of Maryland. Since 2004, Brian’s mission has been to make an impact in healthcare through affiliation with the American Red Cross as a national volunteer spokesman, his Huffington Post column, his many public speaking events, and now as a Johns Hopkins University graduate student pursuing dual master’s degrees in health communication and business administration.

Brian Boyle, author of Iron Heart, visits St. Patrick High School in Biloxi, Mississippi

sp_highschoolAs part of the annual summer reading assignments at St. Patrick Catholic High School, students in ninth through twelfth grade read and studied Brian Boyle’s Iron Heart: The True Story of How I Came Back from the Dead.  This past Thursday, students had the unique opportunity to meet Boyle as he spent the day at St. Patrick addressing the student body, signing autographs, and taking photos.

Iron Heart is the personal narrative of Boyle’s triumph over tragedy.  Nearly eight years ago on the way home from swim practice, eighteen-year-old athlete Brian Boyle’s future changed in an instant when a dump truck plowed into his Camaro. 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. When Boyle finally emerged from the coma two months later, he had no memory of the accident. 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, Boyle 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.

Iron Heart is the first-person account of Boyle’s ordeal and his miraculous comeback. With enormous fortitude he learned to walk, then run, and eventually, to swim. With his dream of competing in the Ironman Triathlon spurring him on, Boyle defied all odds, and three and a half years after his accident, crossed the finish line in Kona, Hawaii. Boyle’s inspiring journey from coma to Kona is brought to life in his acclaimed memoir.

On Thursday, St. Patrick students began their morning by listening to a presentation from Boyle where his discussed the importance of persistence and courage.  Prior to the presentation, students and faculty submitted questions to Boyle through the school website.  One intriguing question was asked by religious studies teacher Terry Creel, “How do you hope your story can be used to promote life issues in the culture of death we are surrounded by?”  Being raised in the Catholic Church, Boyle explained how it was through his Catholic faith that he was able to regain life and recover.  He mentioned that he hopes the book will show people how precious life truly is, and that it will inspire people to continue moving forward despite the challenges with which they are faced.

Boyle currently attends Johns Hopkins University working toward a dual Master’s degree in business and communication, and he plans to seek a doctorate in the near future obtaining his degree.  Iron Heart is an emotional, yet motivational, story of endurance and perseverance that encourages people to enjoy life to the fullest and count their blessings every day.

100 Miles for 100 Red Cross Blood Donors

c&o100-2The American Red Cross recently launched the SleevesUp platform where individuals can donate blood in honor or in memory of someone. The concept is based on pledging to donate based simply by typing in your zip code and locating a local blood drive that you can conveniently donate at. This new platform allows you to help give the gift of life while encouraging others to donate blood with the click of a button.

I created my SleevesUp platform profile based on the concept of running 100 miles for 100 blood donors because I am on a life-long mission to make an impact in the world to help others and raise the awareness on the importance of blood donation.

One hundred blood donation pledges – one for every mile.

My campaign goal was to reach at least 100 blood or platelet donation pledges before the C&O Canal 100 mile Ultramarathon on April 24 in Knoxville, Maryland. The race consisted of one 58-mile loop and one 41-mile loop almost entirely on the C&O Canal, starting and finishing at Camp Manidokan and running along the canal between Antietam Creek and Noland’s Ferry. The furthest distance I ever ran before was 50 miles at the JFK 50 miler in Washington County, Maryland.

Ever since I registered for the C&0 100, I kept trying to wrap my mind around what it would be like to go beyond 50 miles, but I was ready for the challenge.

I gave my first blood donation back in March to officially launch the campaign, and over the next few weeks it warmed my heart when I saw the blood donation pledges adding up each day. I was able to reach my goal of 100 blood donation pledges in mid-April, and the night before the race I wrote down the names of the 100 blood donors on the back of my race bib to inspire me each step during the race.

finish_line_smallDespite the brutal conditions on Saturday night, with freezing cold temperatures, the race was an incredible experience. It meant the world to have my wife and parents there supporting this journey because they inspire me every day. My good friend and fellow blood donor, Ray Jackson, also paced me through the final 40 miles of the race, which was the most difficult portion of the course for me because it was during the night and through rain and sleet. Running with Ray helped me to stay positive and fully focused on keeping one foot in front of the other. Through a lot of encouragement and support, I finished the 100-mile ultramarathon in just over 29 challenging, nonstop hours. While just over 130 runners registered for the race, only 69 crossed the finish line..

I dedicated a mile to each one of the 100 generous people who pledged to donate blood or platelets. Not only did I accomplish the goal I had set for myself, but I was able to potentially help up to 300 people in need of blood because one blood donation can save up to three lives.

When I compete in a race, it isn’t just me out there, there is also a team of many blood donors being represented also, and crossing the finish line is my way of showing the gratitude for the gift of life they have given me.

This is a short video the Red Cross made to document the race.

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The Patient Experience: The Importance of Care, Communication, and Compassion in the Hospital Room

Book cover of "The Patient Experience"

Book cover of “The Patient Experience”

“The patient engagement is key to better patient outcomes, lower costs of care, and more joyful clinicians. Health care needs people like Brian Boyle to keep us focused on the goal, to have an impact.”–Dr. Peter Pronovost, Johns Hopkins Medicine

The world is full of unknowns. We were a normal family living a happy life, and then one day, a near fatal car accident changed everything.

My dreams were shattered like the bones in my body. I lost 60% of my blood, heart was ripped across my chest, lungs collapsed, major organs were damaged, pelvis and ribs were pulverized, and I was resuscitated eight times. While in a two-month long medically-induced coma, I was unable to move or talk to anyone around me, yet I was able to hear, see, and feel pain for a majority of my time in the Intensive Care Unit.

As a family, we never thought that we would face such a traumatic situation, or rather, such a horrific nightmare. We were thrown into a place consisting of surgeries, machines, tubes, blood, and medical terms that caused utter confusion. We were in the hands of my medical team, and a few of them even said I was “in God’s hands.” For the next few months, we were constantly faced with unfathomable uncertainty and total despair.

Life seems to go on standby when you enter this unfamiliar realm. You frequently come face to face with the strength of the human spirit and the perseverance of the mind and the body. Throughout this entire ordeal, my parents and I experienced how unforgiving life can be and how it can drastically change in the blink of an eye.

Due to a concussion, I woke up not knowing how I arrived at the hospital, or why I was paralyzed, or why my parents were hysterically crying every time they came in my room. I had so many questions and needed so many answers. My parents had many questions also – about my prognosis, what the future would hold, and if life would ever return to normal. But again, there were no answers. There was no guidebook or support group to prepare us for what we were in for as a family.

What I learned throughout my time in the hospital is that while I may have been the patient lying in the hospital bed, I was not the only one in that room who was suffering. The observations that I made truly inspired me and helped me understand how important the role of communication is among the patient, family, and health care provider. When I was able to learn how to talk again, I 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 voice are critical components within the hospital room.

Every patient in the hospital has a story, and along with their loved ones, they all share an experience. After all my parents and I have been through, we made the decision to put our thoughts and experiences together to share our sincere gratitude and insight with the medical community from a patient and family perspective. We also hope that our experiences can offer hope and guidance for families facing the heartbreaking sadness when an unexpected, life-altering medical situation occurs.

Throughout this book, The Patient Experience: The Importance of Care, Communication, and Compassion in the Hospital Room, my parents and I discuss what worked for us during our time in the hospital, along with some things that could have been done a little bit differently to improve the situation. In no way are we trying to declare that this is the only way to treat the patient because that is not our intention or place to say such things. I believe in healthcare and the amazing people that have chosen to pursue this field in life. Our goal is to offer suggestions that we hope will improve the overall experience for both the caregiver, the patient, and their family.

This is a short video where I talk about some of my experiences in the hospital.

My recovery began the moment I was airlifted from the accident scene to Shock Trauma. For the next three years, I was transported throughout the many departments of the healthcare system, which is why I strongly believe that the information we cover in this book can also be very effective in any area of the entire health care system because the end goal is taking care of people. In order for us to provide better care for these individuals, we must understand the experiences they go through within the health care system. We must observe what they think and feel as they go through their journey. Our story is only one journey and it is intended as a means to express our appreciation to health care providers and also initiate the much-needed conversation of how we can take a step further to improve the experience for the patient and their family.

By the conclusion of this book, readers will be able to:

  • Recognize the variety of feelings and emotions of the patient
  • Identify simple methods and interventions to provide emotional support to relax the patient
  • Determine the importance of particular amenities to a patient who may be unable to communicate
  • Evaluate patient life-history to determine appropriate intervention techniques
  • Understand the motivational role that communication has between the healthcare provider and the patient and his or her family

With my background, it is so meaningful to have the opportunity to share my story and appreciation with caregivers throughout the world. I also know that the healthcare setting can affect the provider over time because they experience so much with their patients. Compassion fatigue is very real, and it is always my goal to reignite that motivational flame that inspired them to pursue healthcare in the first place. It is my hope that when a healthcare provider picks up this book to read, whether they have been in the healthcare field for 5 days or 5 decades, they will feel motivated, recharged, and reflect back on what inspired them to want to go in the field in the first place. This book is not only meant for front line staff, but also anyone in the health care system who wants to understand what the patient and family are going through in the hospital setting.

Ever since I left the hospital, I have been on a personal mission to make a positive impact in healthcare. This book offers a rare and unique glimpse of what the patient and family are going through, and it covers the information that my parents and I wish we had during our time in the hospital.

More information on this book can be found on Amazon.

Meetings and Conventions Best Keynote Speakers: Brian Boyle

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Image: Keith Weller

M & C (Meetings and Conventions) polled meeting professionals about how they find keynote speakers for their events, what they spend and many other factors. Among top priorities in the speaker selection process, more than half (54 percent) of respondents cited recommendations of others.

Because planners value the opinions of their peers, they also asked the 114 respondents to name the best keynote speakers they’ve heard in the past two years.

Among the keynote speakers, Brian Boyle was the first name listed in the Motivational category.

Brian’s story has been featured on the Ellen DeGeneres Show, NBC’s Today Show, ESPN, CNN, 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 millions, and his story and the message it carries has been celebrated around the world.

For more information on Brian’s story and his speaking background, please visit his website at ironheartbrianboyle.com

The Power of the Voice Is Amplified When the Message Is of Gratitude

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My path to the medical field began one month after I graduated high school in 2004 when I was an ICU patient. I was coming home from swim practice and was involved in a near fatal car accident with a speeding dump truck. The impact of the crash violently ripped my heart across my chest, shattering my ribs, clavicle, pelvis, collapsing my lungs, damage to practically every major organ, kidney and liver failure, removal of spleen and gallbladder, 60 percent blood loss, severe nerve damage to my left shoulder and in a coma on life support for over two months.

During my time in the hospital, I was very coherent during my comatose state.  I couldn’t talk, move or communicate, but my senses were highly tuned into this environment because that is all I had to obtain information on my surroundings.

With all the sadness that we were facing as a family throughout the hospital phase, there were some good things happening as well, even though they rarely occurred during this stage.  One of those amazing days came when I was able to learn how to talk again — a day my parents and I will never forget.  After several attempts to get me to say a few syllables, one lucky day it just happened out of nowhere.  My respiratory therapist attached a speaking valve, and I tried to sound out a few words and all of a sudden I began talking.  All the nurses and doctors came running in and they all broke out in tears when they saw me. I thanked each and every one of them as soon as I saw them. My parents came running around the corner because they had just arrived for visiting hours, and they were awestruck.  I told my dad that everything was going to be okay, and he couldn’t keep his composure and just burst into tears. As for my mom, I don’t think she stopped crying for the entire two months that I was in there, but at least in that moment, these were tears of joy.

I became a public speaker as a way to say thank you to my healthcare team at Prince George’s Hospital Center and to my Red Cross blood region in Baltimore.  My story and healthcare message spread across the nation following the presentations that I gave at the Maryland Hospital Association and Maryland Healthcare Education Institute. Over the past few years, I have traveled the country and spoken at annual meetings for many state hospital associations under the American Hospital Association, at dozens of healthcare leadership conferences, annual conventions for medical organizations  and given 100+ keynote presentations at various healthcare events (hospital leadership, Doctors, Nurses, EMS providers, frontline staff, nursing home personnel, medical suppliers, physical therapy and nursing school students). During my travels, I have had the opportunity to advise several world-renowned healthcare institutions on projects related to family and patient centered care.

It’s always an emotional experience for me to reflect back on my time in the hospital, especially in front of an audience full of healthcare providers and professionals. I give a piece of my heart and soul every time I tell my story, but it’s so worth it because my whole background is about showing the appreciation to the amazing people like them, for the work that they do, that saves people like me.

Every patient has a story and an experience, and I highly encourage healthcare providers to talk to their patients. As a patient, I was grateful for any interaction at all. Even though I was chemically paralyzed and the people around me were unsure of my level of comprehension, I was very aware of my surroundings.  I could even sense the energy of the people who came into my room, by their tone, body language and movement. I could tell if they were having a good day or a really bad day.  I also liked when my medical team would explain what they were doing, maybe not all the advanced details, but just enough to know what was taking place and that they were taking care of me.

During my time as a patient, the observations that I made truly inspired me and helped me understand how important the role of communication is between the patient and healthcare provider. When I was able to learn how to talk again, I soon discovered that the power of the voice is amplified when the message is of gratitude.

To learn more about Brian’s speaking background, please visit his website.