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Saturday, August 13, 2016

Going for the Gold




This post is short, but I wanted to take the time to recognize the 2016 Olympics!  Every four years, the world comes together to highlight their athletes in various events. My summer favorite events are swimming, diving, gymnastics and track and field. This year, I have watched some of the other events which might not be as popular but are just as exciting. Two that come to mind were badminton and table tennis. I caught two exciting matches in these events and was in awe of the players as they volleyed back and forth with skills that have made them the best in their sport.   

As the world watches the Olympics, we are reminded that hard work, perseverance and talent allow us to excel beyond our expectations. The Games are a reminder to all of us that there is good in the world, and everyone has a chance to win when they work hard and push past what they think they can do. 

As I watched the parade of athletes during the opening night ceremonies, I was impressed how each country sent their athletes to Rio to represent their country in the name of sports. As the list of countries was read, it was evident to me that as a world we are united, and CAN come together to celebrate in peace and spirit.

As the reporters share personal stories on the athletes as part of the coverage, we learned about the challenges many athletes overcome through determination and support of family and friends. As I thought about this, I realize there is a lot of good in our everyday lives. It is is important that we stop and recognize it when it occurs and pay if forward when we can.

To illustrate this, I wanted to share a story a friend shared on an experience she had when she went grocery shopping after work one day. Here is what she shared on Facebook: “I picked up my little lovebug and headed to the grocery store after work. We walked outside after checking out and it was POURING. A little rain never hurt anyone so we decided to make a run for it and leave the cart right there next to the doors soon to return ....my little one was giggling as we ran to the car because rain is funny. I buckled her into the car, planning to drive up to the sidewalk and load the groceries. Just as I was getting into the car, I look up and an elderly man in a suit, who had just finished loading his car,  was walking towards me with our cart...I thanked him as I opened the trunk and we loaded my groceries. He said it had been a long time since his kids were that young, now he had grand-kids, and he hoped someone would help his daughter out in the same situation as he helped me. I thanked him again as I noticed his leather shoes and suit were almost soaked through.”

This story made me think of the many experiences I have had in my life. I realized how lucky I have been to be blessed with a beautiful family, good friends and the ability to have a career that has allowed me to grow personally and professionally.

I hope this post inspires you to think about the experiences you have had in your life and encourages you to do something nice for someone who crosses your path! If you have an experience you would like to share, please share in the comment box or email me directly at allewellyn5@bellsouth.net

Have a good week and enjoy week two of the Olympics!



Saturday, August 6, 2016

The Last Dance: Encountering Death and Dying



Recently, I visited a long-time friend, Kathy, who was having a party for her husband, John, who recently retired from the U.S. Air Force. We have known each other since the early 1980's were when we both worked in the Respiratory ICU in Philadelphia.  We have kept in touch over the years, and I was able to visit her in many of the places she and her husband traveled as part of his career in the Air Force.  Currently, they are in Tampa FL, so when I got the invite for the retirement party, I was anxious to go. My friend's mother (Mrs. Z) also moved to Tampa from Philadelphia a few years ago, so I was looking forward to seeing her also.

The party was fun, and my husband and I had a good time visiting with those who came for the celebration. Unfortunately, Mrs. Z did not attend as she does not like to go out after dinner. I was disappointed but understood. I asked Kathy to give her mother a hug for me and wish her well.

A few days later, I got a text from Kathy, telling me that her mother had a major brain hemorrhage, and was in the ICU. The bleed was so massive there was nothing to do so she was put on Hospice and was receiving comfort care per her advance directives. Her children were on their way to Tampa to be with her as transitioned to her next stage of her life.

Mrs. Z is a very religious woman and has lived a long and joyful life. Her husband passed a few years ago, and she looked forward to being with him when her time came. When Kathy found her mother; she said, "don't worry, God is getting me ready to go to heaven". I am praying for Mrs Z, my friend Kathy and her brothers and sisters as I know they are all going through an agonizing time as they lose their mother. 

As I was processing this news, I was introduced to Sam Simon. Sam produced a one-man play called the Actual Dance. The play explores illness and end of life through the eyes of the caregiver. In the email introducing Sam, there was a link to view a portion of the one-man play. I found it very moving and relevant to what I was experiencing. In my mind, Sam’s storytelling help to share the experiences many go through when they or someone they love is told they have a complex medical condition.

I wanted to share the video as it is a good follow-up from last week’s post; Caring for the Caregiver; The Unsung Heroes of the Healthcare System. Take a few minutes to watch this short clip of the play. I am sure the piece will move you and give you pause to think about your mortality as well as those you love.

In closing, I want to tell each person who reads this post; please do not be afraid to think about your own death, but do take the time to make sure you have your advance directives in order. Also, make sure your family is aware of your wishes so they can be followed. Doing so will be a tremendous help for those who have to handle things when you can no longer express your wishes. I know Mrs. Z helped her children by having her wishes know. For now, please say a prayer for my friend, her mother and her family as they have their last dance. 

Thank you for reading Nurse Advocate. If you have a comment on the video or an experience you went through when you lost a loved one, please feel free to share in the comment section.

Have a good weekend.



Sunday, July 31, 2016

Caring for the Caregiver: The Unsung Hero's of the Healthcare System




In this week’s post, I would like to recognize caregivers. These are the people who provide care for their parents, their spouses, their children, and their neighbors. According to the Family Care Giver Alliance, an estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities. The value of this unpaid labor force is estimated to be at least $306 billion annually, nearly double the combined costs of home health care ($43 billion) and nursing home care ($115 billion). In additional to adults, children are also caregivers. According to the American Society of Caregiving Youth, three in ten child caregivers are ages 8 to 11 (31%), and 38% are ages 12 to 15. The remaining 31% are ages 16 to 18. Child caregivers tend to live in households with lower incomes than do non-caregivers, and they are less likely than non-caregivers to have two-parent households (76% vs. 85%).

Evidence from various studies show that most caregivers are ill-prepared for their role and provide care with little or no support. Today, with medical advances extending lives, shorter hospital stays causing people to go home sicker and weaker, strict guidelines for admission and penalties for readmission's, along with dwindling resources, patients, their caregivers and all members of the healthcare team face enormous amounts of stress when a person is sick and requires ongoing care. 

My husband was my caregiver when I was sick. He did things I never thought I would ask him to do. He stayed up with me when I could not sleep, cooked, cleaned and made sure I took my medicine on time and was safe when I was a patient in the hospital or at the clinic. He kept my records and spoke on my behalf when needed. He was my advocate and for that I owe him so much.

I know many people who are caregivers and each person handles the role in different ways. Some do it quietly because it is who they are. Some need to hire people to care for their aging parents because they live in another State or cannot manage their loved one due to work and family responsibilities. Whatever the circumstances, each person handles the role in their own way. They sacrifice their time, their financial resources and many times their health to be sure their loved one is safe and cared for.

As a healthcare professional, I did not fully appreciate the important role caregivers play until I became a patient. It was then when I realized how important caregivers are and how much work they do to ensure the plan of care is followed, that the transition of care is safe and that each person is loved for who they are. 

I realized that no healthcare professional could care for me the way my husband could. I felt the safest when he was with me. I am sure many patients feel this way even though they do not verbalize their feelings or express their thanks. Each time I had to go to the hospital for chemotherapy or to the clinic for lab work or x-rays, we would see people alone and wondered how do they manage on their own? 

Today’s healthcare professionals have a responsibility to help each caregiver care for their loved one the best they can.  All healthcare professionals need to take the time to listen, to empower, and to provide information caregivers can use to provide the care their loved one needs. All need to remember they do not have the training professionals have but are being asked to do many of the tasks that we do as a result of our training.

Every caregiver should be given the information to know who to call if they have a question, even at 2 am. They should not be left to make decisions they are not trained to make because the office is closed. They need to have the support of the healthcare team 24/7.

When I came home from the hospital after one of my chemo treatments, I was weak and had difficulty walking. My husband had to lift me from the bed to the wheelchair to the toilet or chair as I could not do it myself. One time when moving me, he looked at me and said; "should you have come home like this?"  I looked at him and said "probably not, but I did not want to stay in the hospital another minute." 

What was unfortunate was that the healthcare team that cared for me in the hospital did not pick up on this. No one asked my husband if he needed help when we went home, or recognized that I was so weak that I was a risk for falling and could have used rehabilitation to help me build up my strength to be able to do simple tasks safely. I look back on that time and feel sad that the system was not sensitive to see that one of their patients and their caregiver needed help. We all have to do better. 

On behalf of caregivers, I ask all members of the healthcare team to take a few minutes and consider what a caregiver is going through and consider ways that you can help them care for their loved ones once they are home. Here are some ideas that might help.

  • Call the caregiver to find out how they are doing? Don't assume they are ok. Checking in from time to time allows them to know someone is thinking about them. It also gives them the knowledge to know who they can reach out to when they need help.
  • Suggest the caregiver takes a break. Suggest they ask a family member or friend to visit so they can get their hair cut or go food shopping. Many people don’t want to burden someone else with care giving duties, but many people do want to help but don’t know how. Giving a caregiver permission to ask for help is something a healthcare professional can do. 
  • If they have to work, help them to find assistance in the community or from home care agency. Home care services can be very expensive, so negotiating rates when possible can be a help. Finding resources is a challenge for the most experienced healthcare professional so you can image how hard it is for a caregiver who does not know the system. Help is always appreciated. 
  • Caregivers need to know there is the help available to assist you and ensure your voice as well as the patients voice is heard. Today there are professionals who patients and caregivers can hire to help them with research, finding resources or deciding on a plan of care. These professionals are called Patient or Health Advocates, and they are in place to assist the patient and the caregiver. They are paid for privately, but can be worth their weight in gold for those who have complex medical needs or feel lost in the system. Here is a link to learn more about this service.
  • Encourage caregivers to take time to talk to a friend or family member about the stress you feel as a caregiver. Talking allows you to express your fears and frustrations. Again, many people want to help, but do not know what to do. Having someone to listen can be a gift to a caregiver.
  • Visit the National Alliance for Caregiving. They have some useful information that might help your handle the stress of care giving. Click here to view the website.
  • Caring for the Caregiver: has a number of resources and videos that can help you handle the role of being a caregiver. Click here to access the website.
  • Children today also care for an ill, injured, elderly or physically challenged family members. A good resource to help understand this role is the American Association of Caregiving Youth. To access click here.  
  • NPR Podcast: Kids as caregiver's face unique challenges. To listen click here
In closing, and on behalf of all patients; Thank You for being a caregiver! I hope this post helps you realize the important role you play in our lives and how much we appreciate you.   

If you are a healthcare professional, I hope this post helps you recognize the important role caregivers play in helping YOU do your job and provides ideas on how you can help them in their role. 

If you have experience as a caregiver or as a patient who has benefited from a caregiver, please share your experience in the comment section.

Thank you for reading Nurse Advocate. 

Have a good week! 

Tuesday, July 19, 2016

Respectful Communication is Key to Improving the Patient Experience




Today, patients are taking a more active role in matters related to their health and how they are treated when they enter the healthcare system. In fact, they are encouraged more and more to share their experiences (good and bad) when answering survey’s, sharing their experience at patient and family council meetings and by writing letters to leaders about their experiences. Progressive leaders are using the information to identify areas of concern so they can be corrected.

Patient experience has always been an important metric for hospitals and health systems because of its impact on patient outcomes. Now, more than ever before, patient experience scores have a financial impact due to the Patient Protection and Affordable Care Act. The PPACA ties a portion of hospitals' reimbursement to their patient experience scores. Additionally, Medicare uses certain patient experience scores to measure the progress of its accountable care organizations. Beyond the quality and financial implications, providing excellent patient experience also gives hospitals and physicians a boost over their market competitors, as happy patients tend to tell others about their positive experience.

To assist hospitals and other settings address their patient's experiences and to how best handle complaints by patients and their families a new role in the organization leadership has been created.  The Patient Experience Officers is essentially charge with making sure every patient has a positive experience in the hospital or health system. They are charged with education and instituting innovative ways all staff members can integrate into practice to improve patient experience and boost satisfaction scores.

The handling of complaints is a challenge that needs to be addressed with skill and tact. All complaints should be investigated thoroughly. All involved should to interviewed so that the facts can be identified and evaluated. When a patient or a family member makes a complaint, they should not be ignored or patronized. They need to receive a respectful answer with an explanation of what happened and what will be done to correct the problem in a timely manner.

Recently, I shared my Blog, Nurse Advocate with a friend as I wanted her to read my latest post, so she was aware of how I was doing.  In her note back to me, she shared an experience that she had when she wrote a letter alerting the CEO of the health system she used when she went to the ED recently. Keep in mind; she is an intelligent woman who had a bad experience and took the time to share her experience with the CEO of the organization so the situation could be addressed. This was a portion of the note that she sent me back: “in the past year, I have had much exposure to the healthcare system, including a hip replacement, emergency gallbladder surgery and subsequent "provoked" pulmonary emboli (all requiring 3 ER visits), and now stretched ligaments in my knee. I experienced some of the best and the worst of the healthcare system.” When I wrote a letter of complaint to the CEO about one of the ER visits that was horrendous so maybe it could be remedied for other patients, I got a letter back that was filled with insulting platitudes from a nurse he farmed it out too.” She closed her note to me saying it sure would have been nice to have a "Nurse Advocate"!

When I read her words, I felt embarrassed and sad as I know we (as a healthcare system) can and must do better. When a patient or a caregiver takes the time to share a complaint on what happened to them in an organization, they should not be patronized or talked down to, but should be addressed with respect and provided with an explanation as to how their experience will be used to improve the process. I am not sure if the hospital system where my friend visited has a Patient Experience Officer, but they may wish to look into it!

Thank you for reading Nurse Advocate.  Please feel free to share your own ‘patient experience’ in the comment box so we can see how your experience was addressed.   

Have a good week!


Saturday, July 9, 2016

Five Incredible Gifts of a Life Changing Illness




Being diagnosed with a life changing illness or experiencing a catastrophic injury changes your outlook on life. My experience began on November 24, 2014 when I was diagnosed with a central nervous system lymphoma (Brain Tumor). Yet, it was not until recently that I have come to grips with the reality of my situation. Upon diagnosis and through the initial treatment, I was too sick to realize what was happening to me. My husband was my advocate and was with me every step of the way. He talked to the medical team, made critical decisions, kept my family and friends updated and prayed that I would live. With the treatment I received, I was able to live and am grateful to my husband, my medical team and my family, friends and colleagues who supported me then and continue to support me through this difficult journey.

In this week’s post, I would like to share 5 gifts that I learned from my journey. They include realizing:

The magnitude of being nice. As children we are taught to ‘be nice’. It was not till I was sick that I really appreciated the magnitude of what being nice really means. When I was a patient in the Sylvester Cancer Center, I had a great healthcare team who provided the treatments I needed to survive but were also nice to me.  A few that stood out for me were the residents who visited me each morning to gather information before daily clinical rounds. Usually they woke me up at 7:30 am. They always apologized for waking me. They took the time to ask me how I was and listened to me when I answered their questions. When they were finished examining me they pulled the covers back up so I could go back to sleep. They told me to call them if I needed anything and were available when I did.  These things may seem trivial, but they meant a lot. 

The next person who made the time in the hospital pleasant was the young man who delivered the food trays. He always had a smile and a kind word. He was this way with me, but I heard him throughout the day making a joke or sharing a kind word with the staff as well as the other patients. He always placed my tray on the bedside table and made sure it was within easy reach. If I wanted a different kind of juice or hot water for tea, he said ‘let me get that for you’ and came right back. I am sure he was busy, but he never made me feel like I was bothering him, or put me off so he could ‘get done’.  Although eating was the last thing on my mind, his visits were a bright spot of my day. 

I also enjoyed the housekeepers who cleaned my room. They were pleasant and friendly and made me feel better because I was in a clean room. They respected my privacy, but would engage in conversation which many times broke up the day for me and for them!  One of the housekeepers always made me laugh as she would call me pretty lady. Others who were Spanish speaking, put up with me as I tried to use my limited ability to speak Spanish when conversing with them. 

The nurses were also an important part of the team. I loved learning about their career goals, their families and where they came from. They were open to share and talk and this made me feel good. One nurse made my day when he told me the nurses viewed me as their colleague. Being nice is not easy, but it really helps to improve the experience of being a patient.  

What it means to be grateful: In the early days of my illness, I was not really aware of what was going on. My husband was my advocate and never left my side. He talked to the doctors and nurses and made sure my plan of care stayed on track. He shared information about my condition that he observed and made critical decisions that I know he was not comfortable in making. He was there to help me when I could not do things for myself and had the patience to allow me to do things for myself when it would have been easier for him to do them. Today, as I continue to improve he continues to support me and for this I am grateful. I am also grateful to my family, my friends and the many colleagues who kept me in their thoughts and prayed when they heard I was sick. I am grateful for those who continue to keep me in their prayers as I continue to recover. It made me realize the importance of friendship.  

The value of staying in the moment: I learned that we have to appreciate every day as none are guaranteed. My life changed in a second and it blindsided me with a life changing diagnosis that turned my world upside down. The experience has taught me to stay in the moment and to appreciate the little things. Today my life if very different than it was before November 24 2014, but in a way it is also somewhat better. This experience has helped me to see with greater clarity what is important in this life and for that I am grateful.

The Importance of Being Connected: Staying connected to family and friends during my journey was important to me. Today, with social media, it makes it easy to stay connected. One of the tools we used early on in my cancer journey was Caring Bridge, an online tool that allowed my husband to provide updates to friends and family. In addition to keeping everyone informed, people who read his updates could share thoughts and send best wishes which helped us both immensely. 

As I got stronger, I returned to my favorite social media sites and shared news and information from e-letters and other forums that I found interesting. This helped me stay connected on a professional level as well as a personal level. 

Today, I write a Blog, Nurse Advocate to share some of the things I learned from my experience with the hope I can help a patient, their caregiver and members of the healthcare team better navigate the complex healthcare system. I also learn from the comments people write after they read my blog. I love when people share their experiences as it helps me continue to learn. Writing my Blog has been a therapeutic exercise for me and has helped me adjust during trying times.

Returning to Activities: when you are sick, you tend to become isolated. You focus on yourself because you are in a survival mode. As you improve, you start to want to do more, but may find it challenging due to weakness from inactivity. For me, completing chemotherapy and starting a rehabilitation program allowed me to gain strength so I could do more things safely.

Becoming active made me less isolated and allowed me to realize I was still relative in the world I lived.  Today, because of the complications from the chemotherapy, I am not able to drive so I am ‘home bound’ for the most part. As a result of the rehabilitation program that I attended, I learned various exercises that I could do on my own. These helped me gain strength and become more active.

I also am lucky to have a community pool that has handicap accessible facilities that allows me to swim and participate in water aerobics. If my husband cannot take me to the pool, I am able to use UBER which is a cost effective alternative to a cab. Friends also have been gracious to pick me up and drive to meetings, take me out to lunch or other social engagements that come up from time to time.

I am still hopeful that my foot drop and neuropathy resolve, but in the meantime, I am adding more activities to my day that helps me gain strength and allow me to make good use of my time.

I am grateful to be able to give back to organizations that are important to me professionally. Volunteering and giving back has been an important component of my recovery as it has allowed me to take small steps in improving my cognition and organizational skills. I have learned that as a result of brain surgery and chemotherapy, many of the executive functions that we take for granted have been impacted. Being involved with various projects is stimulating and has helped me build my confidence and kept me active.

As I adjust to my ‘new normal’ I am trying to put each of these gifts into practice each day. It is not always easy, but I am working on one day at a time.

I hope this post has provided you with insights and ideas if you are a patient, a caregiver or a healthcare professional. Please feel free to share what you have learned from your experience as a patient or as a care giver caring for someone experiencing a life changing event.

Have a good week! 

Friday, July 1, 2016

Summer Reading 2016



Each year, around the Fourth of July, I publish my summer reading list with book recommendations from family, friends and social media contacts. I am excited to share the 2016 list as it contains many interesting reads that will allow you to relax and maybe escape the fast paced world we live for a short time. 

In addition to this list, I am developing a Professional Reading List  for processionals who work in nursing, case management, care coordination and patient advocacy. This list will help healthcare professionals build their professional library with some of the new books that have been written by leaders specializing in these areas. I hope to have this list ready next week.  

If you have read a book that has touch you and made you think, kept you up at night because the book was so good you read way past your bedtime, or shared a story that opened your eyes to a new way of thinking, please add your Summer Reading Pick in the comment box below. Please note the title of the book, the author and why you liked the book so others can consider picking up your recommendation at their local bookstore or  downloading from one of the many online bookstores.   

I would like to thank everyone who contributed to the 2016 Summer Reading List. Your contributions allow this list to be an annual event that many people look forward to. As you review, I hope you find a few good books to enhance your own summer reading! 

To kick us off, I want to start with Eric Bergman, a case management colleague and Facebook friend who shared a book he just finished. The book is; "This is Where I Leave You" by Jonathan Tropper. Eric notes, the book is a few years old and was made into a movie starring Jane Fonda, Tina Fey, Jason Bateman, and Adam Driver.  Eric noted that he enjoyed the story, which is comedic and tragic, but the best part of the book is the internal commentary of the narrator. It is an honest and insightful look at the real feelings, emotions, insecurities and flaws of a certain type of American men. 

Kathleen Jarvis, another long time case management colleague and friend shared a book that has been listed on a past Summer Reading List, but is worth another mention. The book is; The Immortal Life of Henrietta Lacks by Rebecca Skloots. Henrietta Lacks was a poor black tobacco farmer but scientists know her as HeLa. In 1951 when she had a surgical procedure for cancer, cells were taken without her knowledge and became one of the most important tools in medicine and were vital for developing the polio vaccine, cloning, gene mapping, in-vitro fertilization and much more.   Henrietta's cells have been bought and sold by the billions yet she remains virtually unknown and her family remains poor and cannot afford health insurance. This book is a  good read for all but especially for healthcare professionals who are faced with ethical issues on a daily basis.

Mary Beth Pruss, a friend from Little Rock, AR shared a book titled; Me Before You”. She shared that she finished the book in less than 2 days! Now she is off to get "After You" which is a continuation of the first book. The author is Jojo Moyes. The book had was an interesting look at assisted suicide for someone who was injured in an accident and whose life changed drastically. You Before Me is also a movie, but get the book as it will allow you to use your own imagination!

Robin Guinn Kimmel, a fellow member of the National Nurse Network shared a few of her favorite reads this year. They are; “The Orphan Train” by Kristina Baker Klien, “The Goldfinch” by Donna Tart, “Son of a Witch" and “Lion Among Men” both by Gregory Maguire.

Elaine Miller a good friend and fellow case manager colleague, suggestedThe Traitor's Wife” by Allison Pataki

My cousin, Heather LaCouture, suggested last year’s big hit “Girl on a Train” by Paula Hawkins.

Another cousin and avid reader, Kate Shovlin shared her top picks for 2016. They are:The Likeness” by Tana French, “Corrupted” by Lisa Scottoline, “Rogue Lawyer” by John Grisham, “Luckiest Girl Alive” by Jessica Knoll, “Descent” by Tim Johnston; “The Ex” by Alafair Burke and last but not least, “Bull Mountain” by Brian Panowich

Long time case management colleague and Facebook friend, Maureen Orr had the following suggestions;The Orchardist” by Amanda Coplin, “Being Mortal” by Guande Atul, MD, Between the World and Me” by Ta-Nehsis Coates and last; “The Invention of Wings” by Sue Kidd Monk.

Long time ED nurse colleague and friend, April Chitwood Cordero shared the following; “Crooked Little Lies” by Barbara Taylor Sissel, and “What She Left Behind” by Ellen Marie Wiserman. On her bedside table now is; Thomas Jefferson the Art of Power...quite a history lesson.

Jon Lucenius a Facebook connection shared his recommendation for the Summer Reading list. The book is: “Flowers for Mama” which was written by his wife, Candia Cumberbatch-Lucenius.  He shared that the book is a fun and heartwarming collection of tributes put together to and for peoples' Mother. It includes information on the author's "Mama" and early life, and has many pictures, poems, songs in writing, and short stories. The collection includes contributions from family, close friends, and others she has meet along the way. I must say while most of the material is fun and lighthearted, some will bring a tear to your eye - so have a few tissues at hand!

Meredith McKnight, a connection from LinkedIn shared her 2016 book recommendations. They were: “Same Kind of Different as Me” by Denver Moore, Lynn Vincent, and Ron Hall. This is a book based on a true story that makes you realize how we need each other no matter our class, education, race, etc. There is a follow-up book, “What Difference Do It Make”. Meredith also suggested; “The Glass Castle” by Jeanette Walls. This is another memoir that shows how children overcome and deal with their parent’s mental illness and addiction. It was amazing how they persevered.

Susan Sheffield, nurse colleague from Fairview, TN and LinkedIn colleague suggested; "Esther the Wonder Pig. Changing the World One Heart at a Time”. The book was written by Steve Jenkins, Derek Walter and Caprice Crane. Susan said the book was seriously, hilarious. 

Beth Boynton, fellow Nurse Blogger shared a book; “So Far from Home: Lost and Found in Our Brave New World”, by Margaret J. Wheatley. She shared; “I love this book, because the author offers readers a paradigm shifts in thinking and being that although provocative, ultimately holds great promise. I think it certainly applies to much of the chaos we are experiencing in healthcare systems.  You can learn a lot about her thinking by clicking here to listen to a 25 min video:

Pat Ford, friend, colleague and Facebook connection shared a book: “The Nurses: A Year of Secrets, Drama, and Miracles with The Heroes of the Hospital” by Alexandra Robbins. Pat commented that; “the book held so many stories that are the same today as they were when I graduated from nursing school in 1969 and some new ones relating to current affairs.  It surprised me that some things like "eating our young" still exists today.  I was also pleased that in some hospitals nurses are truly respected”. Pat notes that this is a good easy read for all not just nurses
Added Bonus:

I did a search for past Summer Reading Post that I did over the past years. To my surprise, I found my Summer Reading Lists from 2009-2015. I am amazed they are still on line! As I look back on each list, I am amazed at the variety of family, friends, and colleagues who have contributed to this project.  I am truly blessed to have such a great group of people who help me communicate information that enriches lives. Enjoy your summer reading!  









Thanks for reading Nurse Advocate. I hope you find a few books to read this summer! 

Enjoy your summer and your summer reading!  

Saturday, June 11, 2016

Medical Errors: A Matter of Life and Death





I open this post by saying that we all need to remember that healthcare is delivered by human beings, and humans make mistakes. Today there is an intense focus on working to find ways to identify, address, correct and prevent medical errors in every sector of the healthcare system. Addressing medical errors and changing the systems that allow medical errors to occur is such an important goal that the Centers for Medicare and Medicaid have said they will not pay for care that results from medical errors. The patient cannot be billed for these cost either, so when an errors occurs, the organizations where the error happened is held responsible for those costs. 

An interesting report was recently released stating that medical errors are now viewed as the 3rd leading cause of death after heart disease and cancer. To put this into perspective, take a minute listen to this podcast from NPR with the author of the study. His message is clear, in that we all need to do better. He also points out the patient needs to take an active role in helping to prevent medical errors. It is widely recognized that we can only meet this challenge by being fully aware that medical errors do occur, that when they do occur they need to be reported and all stakeholders need to do their part in minimizing them.

Recently I experienced a medical error. I did not die, but I wasted time, underwent a lot of unnecessary stress and lost a little more faith in the healthcare system. 

Here is my story.  

Over the past few weeks, I have been treated for a basal cell carcinoma on my back. The suspicious lesion was found during a routine visit to my primary care physician. She suggested I see a dermatologist to have it examined. I asked a few friends who I knew have had experience with skin cancer and asked them who they saw as I did not have any experience with a dermatologist close to home. I received a few names, did some research and chose a doctor.

I met the doctor and his office staff at my first visit. My first impression was that the staff was very young and diverse. The feel of the office was casual and a little haphazard.  The Dermatologist was professional and took the time to get to know me before examining me. He introduced himself, and as we talked about why I was seeing him he listed to my fears and concerns of being diagnosed withe another form of cancer again after being treated for a brain tumor one year ago. He reassured me that skin cancer is very treatable, so I should try not to worry. He looked at the lesion and felt that it was a basal cell carcinoma. He said that if I had to get skin cancer, this was the type to get as it was very treatable. He said he was going to take a biopsy of the lesion and send it to the lab. He said not to worry as he was confident the biopsy would take care of removing it. 

Fast forward a few days. I received a call from the dermatology office to tell me that I would need to come back to see the doctor for deeper scraping of the lesion as there were still signs of cancer so I made another appointment. On the second appointment, the doctor said he was going to go a little deeper, but was confident that all would be okay. Once done, the doctor told me that someone would call me with the results in a few days.  As promised, I got a call from the office a few days later from the medical technician, Steve. Steve is a paramedic who worked with the doctor. I took a liking to Steve as he seemed to be the doctors right hand person. He explained that I would need to come back to the office to see the Dermatologist as the pathology report showed that the margins were still not clear. I asked Steve to explain what margins were. He was able to tell me that the margins are the area around the incision that allows the doctor to know if he got all of the cancer. As my margins were not clear, the doctor would need to cut deeper to try to get clear margins. I made the appointment and started to do some research.  

On the next appointment, when the doctor came in, I asked him about a procedure that I had read about called Mohs Surgery. He explained what the procedure was, but because my lesion was on my back, it was not recommended and probably would not be covered by the insurance company. He said they (Dermatologists) usually save Mohs surgery for lesions on the face or chest areas to reduce scarring. My lesion was on the back where scarring was not viewed as a problem.

I was not so worried about scaring, but was more concerned that the margins were not clean after two biopsies and that now I was having a third procedure. I was worried that having another blind biopsy might not be the best way to handle this. The doctor reassured me and since I was in the office, I put my trust in the doctor and agreed to have the procedure.   

As the incision was quite large, I had to have stitches which were o stay in place for ten days. On day 10 I went to the office to have the stitches removed. While there, I asked about the biopsy (as I had not been called and was anxious to learn the results).  As it happens, some of the key staff were off so there was a lot of confusion and no one could find my pathology report.  The doctor explained to his staff member that he reviewed some pathology reports earlier and my report should be in the office and to please check the file. After waiting a while, I was told they could not find the report. The doctor came in and said he was sure everything was okay, and he would have the staff call the pathology office and have the report sent over. He said he would call me with the results.  

The next day the doctor called me to tell me that the margins were still not clean, and I would need to come back for additional treatment.  He said I had three choices one of which was Mohs Surgery! I said that I wanted to do the Mohs Surgery as it would allow me to have the tissue tested at the time of the procedure and to continue tessting if needed till there were clear margins. He agreed and said someone would call me from the office to set up the procedure. 

As I was thinking about my situation, I realized I was due for my three-month checkup with my Hematologist at Sylvester Cancer Center the following week. I decided to call the office and talk to the doctor or nurse practitioner who knew me and see what they recommend. They suggested that I see another dermatologist for a 2nd opinion. They said they would set up an appointment with the following the appointment with the hematologist. 

On the stated date, I saw the second dermatologist who examined me and reviewed the pathology reports from my previous biopsies. I was glad I had the reports in my binder so the doctor could see my history and what had occurred before coming to see her. 

After reviewing the information, the dermatologist said she was concerned with the treatment I had received and recommended Mohs Surgery. She said she could not understand why this procedure was not done from the beginning, as it is the standard of care. She just shook her head and said that she did not understand why these things happened. I was mad at myself as I had had the same thought. As a result, I had wasted time and put myself under undue stress. I should have gone with my gut and seen the dermatologist at the University of Miami versus seeing a doctor that was more convenient.  I had tried to save time but in the end, I had wasted time and might have put myself at risk.

The doctor said she would make an appointment with the Mohs Surgery Center at Sylvester. The plan was for me to see the Mohs surgeon for an evaluation and then set the date for the Mohs surgery.

For some reason, I did not cancel the original Mohs procedure with the first doctor. As the time of the procedure was approaching I had it on my ‘to do list’ to cancel this procedure as I made up my mind I would go to the University of Miami, Sylvester Cancer Center. As I was looking for the number, a staff member from the first office called me. She said that she was working on the schedule for next week and had me on the list for Mohs surgery. She was confused at this as she was looking at my pathology report that showed clear margins so she could not figure out why I was on the list. I told her that the dermatologist has told me I needed the Mohs procedure done as my past biopsies did not result in clear margins. She said she would call the doctor's office, and he would call me.

I want to note here, that if I did not get this call, I would have had unnecessary Mohs Surgery. I was glad that the Mohs Surgery office takes the time to check to see that the people coming in for testing are appropriate and in need of the surgery. This is one example of having a system in place to check reports and confirm patients are appropriate prior to the procedure that can prevent a medical error.   

I did get a call from the first dermatology office, but not from the doctor, but from Steve. Steve explained that the doctor was busy and asked him to call me to tell me that the last path report did show clear margins, so I did not need to have the Mohs surgery and to follow-up in 3 months! I asked Steve to send me the path report that showed the clear margins so that I could have for my records. 
Once I got the report, I read it over and over to be sure I was reading it correctly. I also called the 2nd dermatologist to give her the information, and she said she would cancel the appointment with the Mohs physician at the University of Miami and would see me in three months for a checkup.  I breathed a sigh of relief and said a little prayer as I was grateful that everything was ok.

What I learned from this experience
  • Do not choose a doctor based on distance. If you are with an established organization that you trust, stay with them if new problems arise.
  • When you get copies of your records, look at the dates of reports and highlight them. When I went through my paperwork, I realized what happened. The first dermatology office sent me the 2nd pathology report twice instead of the 3rd report. I did not pick up on this as the doctor listed the three options that were open to me so I ‘assumed’ it was the third report. If I would have looked at the dates, I would have noticed seen the problem.
  • Going forward I am going to highlight the dates so I can make sure the dates standout. This would help pick up duplicates and ensure the date of the report coincides with the visit. I also recommend doctors’ offices/hospitals and other settings highlight the dates as well. Dates are critical to make ensure you are looking at the right information in order to make correct decisions.
  •  Insist on communicating with one person at the office to avoid mix-ups. My primary contact at the dermatologist office was Steve. Steve was off the day I was in the office for suture removal and the day they could not find my results. What I should have suggested was that we wait for Steve to returns the next day as he was familiar with my situation. By talking to another person (other than Steve) who was not familiar with my case, it may have set up a situation for an error to occur.   
  • Follow up in writing and keep a copy of all communications.
  • Stay calm and try to rectify the situation the best you can. 
The key is to learn from our mistakes and find ways to prevent them from happening again. All healthcare settings and organizations need to promote a culture of safety so everyone feels safe to report problems so they can be addressed.  

As stated at the beginning of this post, the bottom line for everyone to remember is that healthcare is delivered by human beings and we all can make a mistake. Everyone needs to remain vigilant to identify, correct and report errors when they occur so quality improvement initiatives be considered and put into place.

Thank you for reading Nurse Advocate. If you have an example of a medical error you experienced, please share your experience in the comment section or email me at allewellyn5@bellsouth.net. 

If you are a patient, stay alert and stay safe!  If you are a healthcare professional - please double check your work and don't be afraid to report an error so it can be addressed. It is important!

Have a good week.