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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 calculated 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 addition 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 shows 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 vital role caregivers play until I became a patient. It was then when I realized how essential 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 caregiving duties, but many people do want to help but don’t know how. Giving 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 imagine 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 patient's 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 you handle the stress of caregiving. Click here to view the website.
  • Caring for the Caregiver: has some 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. An excellent 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 vital 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 vital role caregivers play in supporting YOU as you do your job and provides ideas on how you can improve 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 is 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 to the world I lived.  Today, because of the complications from the chemotherapy, I am not able to drive so I am ‘homebound’ 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 access and 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 caregiver 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 professionals who work in nursing, case management, care coordination and patient advocacy. This list will help health care 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 too 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 met 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 shift 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
Enjoy your summer reading!