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Sunday, February 19, 2017

I Have Bad News

It’s a nightmare situation. The doctor tells you that you or a loved one has a life-altering condition — something that is going to call on your deepest resources of strength to handle. A bad diagnosis can land like a bomb, frightening and disorienting you in a way that little else can.

Even though a scary diagnosis can turn your world upside down, there are practical strategies you can use to take the best next steps and bring balance back to your life. Here are a few:

Know your feelings will improve. In the immediate aftermath of a diagnosis, the anxiety and fear can feel destabilizing and permanent. But those emotions are important reminders that your body and mind are mobilizing to protect you. Their intensity will subside over the coming days. You will still have plenty of challenges, but the intensity of the confusion and fear will lessen naturally.

Slow down. Fight the urge to make major decisions right away, taking a few days or a week to do some research and get a second opinion can make all the difference in finding the best doctors and treatment for yourself.

Seek comforts, new and old. Making healthy lifestyle changes and exploring new modes of self-care can provide crucial comfort and support. But don't abandon all your old routines either. If nature walks have always buoyed your spirits, walk. If you like to get lost in a book, read. If praying helps, pray. 

Choose whom to tell. Support from friends is absolutely essential, You get to decide with whom to share your news. A family member or friend who is going to cry every time he or she talks to you is not going to be helpful.

Use the Web wisely. It's important to remember how wildly inaccurate online information can be and to be conservative in your searches, especially at the beginning, as indiscriminate web surfing can increase fears more than help you. Talking with trusted health professionals and friends may be more helpful.

Write things down. If you are worried write down your thoughts. Journaling can be therapeutic as you process the news.  People think of many things when they get bad news. Writing things down as they come into your mind, helps you gain some control.

Don’t feel guilty about calling your boss or manager to share what is going on. You might want to take a few days off and give yourself time to process the information. 

Getting bad news is difficult.  It is hard for the person who receives the news as well as family members. Keep in mind that each person deals with bad news in their own way. It is my hope that these strategies will help you and your family cope if you are given bad news one day. 

I wrote a post in Nurse Advocate; titled; Life Changes on a Dime after I received the news that I had a Central Nervous Brain Tumor. If you missed the original post, take a minute to read it here.

If you have strategies that have helped you cope, please feel free to share.

Thank you for reading Nurse Advocate!

Saturday, February 4, 2017

Taking Charge of Your Health and Wellbeing

Like many, I took my health for granted. I was lucky to live for 60 years with no major healthcare issues. But my luck ran out on November 24, 2014, when I was diagnosed with a central nervous system brain tumor that turned my life upside down. If you have been reading Nurse Advocate you know the story.

Today, although tumor free, I am still processing my journey. I am a high risk for a reoccurrence of the tumor and continue to have complications as a result of the treatment that has impacted my activities of daily living. As a result, I continuously ask myself; what did I do to cause this? What can I do to prevent the tumor from reoccurring?

I realize I am not alone. Research shows that nearly half (45 percent) of all Americans suffer from at least one chronic disease. In addition, it is known that two-thirds of all deaths are caused by one or more of five chronic diseases: heart disease, cancer, stroke, chronic obstructive pulmonary disease, and diabetes.

As a patient with a chronic disease (cancer), I know it is up to me to be the one to do what I can do to prevent a reoccurrence and to avoid other chronic diseases. So I am on a mission to learn what I can do to improve my health and wellbeing. Is it too late? NO, it is never too late to take steps to improve your health and wellbeing.  

So I ask you: what are you doing to evaluate your health and wellbeing? Please take a minute to share how you have changed your lifestyle to better take care of your health and healthcare. Make a comment in the space below or email me at I would love to hear from you.

Here are some things that I am doing to improve my health and wellbeing.

Sign up with a Primary Care Doctor: I signed on with a primary care doctor that is connected with the Sylvester Cancer Center to try to streamline my care and records in one place. I see her for my annual checkup, if I am sick or if I have a question for her. I have access to a patient portal that allows me to send my primary a question. She can answer me or ask me to come to the office if she feels she has to see me. This tool helps me to be connected and communicate with my team more effectively. 

Having a primary care doctor is important. But you need to get to know them and make sure they know who you, your goals and what is important to you. Most primary care practices have hundreds of patients, so it is up to you to get to know your doctor and help them get to know you so you get the care that is important to you. 

A primary care doctor will help you maintain your health and also direct care if/when you need advanced care with specialists. To gain insight into how your primary care physician can be the quarterback of your health care team, read this article.

Get Annual Check Up: One of the most important things you can do for yourself is to get an annual checkup and get the required preventative tests and immunizations for your age group. Doing so will identify problems early and improve your chances of a good outcome. Today, many people are living well despite having a chronic condition.
Here is a link to preventative screening for women and for men. Take time to review the recommendations for your age group. Keep track of your results and alert your PCP if you see anything abnormal or see a change from previous tests. 

Keep in mind these charts are guidelines. If you have a history of cancer or other chronic condition, talk to your primary care physician about screening test you should get due to your family history that might be outside of the recommended guideline(s). 

CASE IN POINT: I recently talk to a friend whose daughter was diagnosed with metastatic breast cancer. I asked her how they found cancer and if she had regular mammograms. She said she never had a mammogram as she was only 33, yet her grandmother died of metastatic breast cancer. With this family history, the primary care physician or her OB/GYN physician can write a prescription and ask for the test to be covered. Family history is one of the key indicators that one may come down with the same condition. It is too late now for this young women, but what if she (the mother of two young children) had a mammogram early on and it was able to catch her cancer earlier? Keep in mind that just because you don’t fit into a ‘guideline’, does not mean you do not need the test. It means that the test may not be covered by your insurance, but you can pay privately if you want to have the test. Many organizations that provide mammograms will work with you if the cost is prohibitive, so don’t let money be your deciding factor.  

Keep in mind, you are the only constant on your healthcare team. So it is important to keep copies of your health records as it will help you be aware of the results and any trends that might indicate problems. Being proactive is important.

Get your weight under control. If you are overweight, take steps to get your weight under control.  According to the American Cancer Society, being overweight can be a predisposing factor for cancer and other chronic conditions. Talk to your primary care doctor about your weight and ask for a plan to get your weight under control.

Evaluate your diet: Eating well is an important part of improving your health and reducing your risk of cancer and other chronic conditions. Take a good hard look at what you typically eat each day and see if you are predisposing yourself to chronic conditions. Minor changes can make a difference.

MOVE: Watching how much you eat will help you control your weight. The other key is to be more physically active. Being active helps reduce your risk of cancer and other conditions by helping with weight control. It can also help improve your hormone levels and the way your immune system works. Today, there are some good tools that will help you eat better, move and change your behaviors so you are reducing your risk factors. One such tool are Wearables. 

Wearables: Wearable technology is helping people change behaviors. Wearables are devices we can wear that can alert to how many steps we take, track what we eat and PUSH us to do more. Today, one in six (15%) consumers in the United States currently uses wearable technology, including smartwatches or fitness bands. While 19 million fitness devices are likely to be sold this year that number is predicted to grow to 110 million in 2018. Wearables are helping people to be better engaged in their health and healthcare. Here is an article on wearable technologies and how they are facilitating behavioral changes to improve one's health.

Remember that your health is not just about the medical conditions that can impact your life, but also includes dental or oral health and mental health. Each is important to your health and wellbeing. Let's look at them both. 

Oral Health: Good oral health can also be the difference between life and death. Your mouth is a hotbed of bacteria, which can be controlled with good oral hygiene. But neglect of your teeth and gums can lead to heart disease and other chronic medical conditions. Make an appointment to see your dentist and hygienist. You may need to go for cleanings if you are found to be at risk for gum disease. You may also be referred to a periodontist who specializes in treating gum disease. Most of us think that as long as we have no pain, our teeth are good. This is not the case as gum disease is a silent disease. Getting annual x rays are the only way to show if you have gum disease. Here is an article that dispels many of the myths that can impact our oral health.

Mental Health: Primary care doctors have known for years that psychological problems, such as depression, anxiety, stress and mental confusion, play a significant role in many diseases and impair recovery if not treated adequately. Psychologists, psychiatrists, and other mental health professionals can contribute to the healing process through evaluations, counseling and sometimes medication to assist in the treatment of these psychological difficulties. With the use of the patient-centered medical home model, the psychological needs of the patient are more readily identified and addressed through better access to the providers and improved communication between the patient and doctors, which allows more prompt treatment of mental illness and related problems. Here is an article that might make this concept clearer.

Today there are a number of resources that can help improve your health and healthcare. I hope this article is a start and motivates you to take care of yourself!

Have a good week! 

Saturday, January 21, 2017

Taking Ownership

Recently, I called Apple Support to address several issues I was having with my cell phone that impacted its performance.  As I waited on hold, I was asked what kind of music I wanted to listen to. The choices were pop, rock, country or silence. I chose rock but did not get to hear much music as the customer service person came on the line. 

The person introduced herself as Doris. She asked me how she could help me. I explained to her what was happening with my phone. She listened asked me a few questions and then asked me if I wanted her to tunnel into my phone so she could see what was happening. I agreed and she walked me through the process. She also told me that she was taking ownership of this problem and would stay with me till the problems were resolved.  

We started to work on resolving the issues when a reminder popped up on my computer telling me that I had a teleconference call in 3 minutes. I let Doris know and she said, no problem. What time will the call be over? I told her the call would last an hour and that I was sorry for the interruption but I had to be on this call. She told me not to worry and assured me she would call me back so we could continue.

At the appointed time, she did call me back. I have to say I was a little worried as I was not sure she would call me back and I would have to start over with someone else. Once we reconnected, we continued to work on resolving the issues. She shared the process was going to take a while as we had to re-set my phone. Once the re-set process started, she explained the download would take about an hour. She suggested that we hang up and she would call me in an hour.

Doris called me back at the appointed time and the re-set had just finished downloading and we were able to continue working on my issues. About 30 minutes into our call, my phone was ready. We checked to make sure everything was working. I was thrilled that the various issues I had on my list were resolved! I thanked Doris and told her that I appreciated her time.

Reflecting on the experience I smiled and thought could something like this work in healthcare? Having Doris say, ‘she was taking ownership of my case’ was reassuring to me as I depend on my phone and want it to function correctly.

Doris was calm, patient and competent in her role. She put me at ease and said she would do all she could to resolve the problem. This was reassuring to me and I relaxed and let her do the work. I asked her various questions as we worked through the issues and she answered them in a relaxed manner. I was able to tell her what was happening on my end and she would show me with a pointer what she wanted me to do. She definitely took ownership of my problem and helped to resolve the issue so that my device worked up to it potential and met my needs.

Another aspect of the process that impressed me was how Doris used the technological tools that she had at her fingertips. I was amazed how far we had come in customer support technology. It made the process smooth and stress-free. Doris was trained in how to use these tools and did so with skill and confidence.

It made me think how important technology is for all of us and learning how to use the tools is critical. I asked Doris why this happened to my phone. She said that I had not been installing the updates to my phone when they became available that caused this problem. I realized as she said this that the problems I was having were caused by me - as I was not taking care of my device as I should.

Again, thoughts of healthcare came to mind. If we as patients don't understand our diagnosis or follow our plan of care, how can we expect to heal? If we are honest, we can’t blame the doctor or the healthcare team, it is our responsibility and like Doris, we have to take ownership of our health and healthcare.

Conversely, if our physicians and members of our healthcare team do not explain our diagnosis so we can understand it, how can we be expected to be active participants in our own care? If we are not part of developing our plan of care, how can we be expected to follow that plan if we silently don’t agree with it? If we don’t have the resources needed to manage our care due to limited insurance coverage, how can we care for ourselves adequately?

These are all challenges that patients face when they enter the healthcare system.All members of the healthcare team need to use their expertise to care for patients and work to improve the process. Like Doris, we need to take ownership of the role we play and work together to improve the process.

Have a good week!


Sunday, December 18, 2016

My Year End Review

The end of the year gives us a chance to evaluate our work to see how we are doing, what changes we want to make for next year and gauge the value we are receiving for our efforts. Nurse Advocate has had the same goal since it started. To share information that consumers, caregivers and all members of the healthcare team can use to improve the delivery of care.

In reviewing my metrics from the various social media sites where I post my Blog, I know that I am reaching a broad audience both national and internationally. Post are being opened and viewed by many. The best and most meaningful metrics that I value are the comments that come from the readers. They are insightful and allows me to know that I am covering the right topics that are valuable to the audience. Not everyone agrees with my thoughts, but those comments are valuable as they help me see the issue from a different point of view and allows me to consider additional points of view.

For the last issue of the year, I chose the top 10 posts for 2016 to share with you as we end the year. If you missed them, this is a chance for you to read them. Please feel free to share with your family members, colleagues, and friends. If you are in charge of professional development at your organization, feel free to use any of the posts from Nurse Advocate as a teaching tool for your staff as appropriate. Ok, let's look at the top 10 posts for 2016. 

This post was conceived when I met a friend from nursing school at a wedding. She was with her husband standing off to the side in a quiet part of the church. I went over to say hello, and she had a blank stare when she looked at me. I knew she had early Alzheimer's and had been failing. Her husband shared she does not recognize many people; she is getting worse and needs total support with her ADL's. I asked him how he was doing and he said was tired and sad. I knew he loved his wife with all his heart as they had always been very much in love. During the Mass, as the priest read the wedding vows to the couple getting married it dawned on me how important those vows are and how so many of us take them for granted. My friend was living his vows day in and day out by caring for his wife.  As I was writing this post, an idea came to me to develop a Facebook page so Caregivers could communicate their frustrations and challenges and gain support or information they can use. I knew the message got through from this comment: “Great post-Anne and wonderful idea in providing a way for the caregiver to stay connected!

Caring for the Caregiver: The Unsung Heroes of the Healthcare System  Caregiving struck a chord with many readers as they see the important role they play in advocating and helping their loved ones with so many of the challenges they face. I was glad this post was well received as well as the tips provided hit home with so many people. This comment showed me how we never know when we will have to put our lives on hold to become a caregiver for a loved one or a friendThese are great tips! I know it is not nearly as intense... yet, I had to take care of my husband who burned his hand severely on the job last May. He was out of work for two weeks, and it was a TON of work to take care of him. This is an excellent article. Thank you for recognizing these heroes!”

Reconnecting to your purpose in Healthcare With healthcare in turmoil, this post is worth repeating. I wrote this post after hearing Dr. Don Berwick speak at a conference and urging all members of the healthcare team to take the time to reconnect with their purpose. If we remember why we became in involved in healthcare it will keep us centered regardless of what changes were made. This comment from a physician reinforced the message as he reflected on the importance of working as a team and not going it alone. It takes a team to care for a patient. The better we can work together, the better care we can provide. “I have been blessed with good nurses all my life. When the office has been chaotic or has been made chaotic by supervision or powers that be as you mention, I have been able to focus on patient and team. Forgot that for a while but when it becomes clear that help is not on the way, time to see a patient and get connected to what matters. You often receive back more than you give - and without trying to force satisfaction. Sometimes a particular patient can sustain you through a trying time, like a year of residency.

The Joys of Travel as a Disabled Person Traveling is difficult for the abled body person, yet for someone who is disabled from a heart condition, a respiratory disease, an orthopedic condition, or neuropathy travel is much more challenging. I wrote this article after traveling myself for the first a time. I also had a phone interview with a reporter from the Wall Street Journal who was writing an article on the impact of expanding airports on the disabled. He only used one of the many examples I gave him, so I decided to expand on the topic in this Nurse Advocate. The post inspired comments from professionals charged with helping people with disabilities travel as well those who are disabled themselves. Here is one of the comments that hit home:  “Anne, great post and thanks sharing your experience. As a disabled person, of many years, you are correct, most organizations have expanded the ways and means of assisting disabled folks. A couple of things with air travel, you can identify connection times to make sure you have enough - if you cannot get a direct flight. While travel can change, I always look for at least 1.5 hours. Makes the trip longer but less worry. Also, if I am not in an aisle seat, I inform my seat mates that due to my disability I have to get up quite a bit. Often people will switch with me, and at least they are not surprised. I inform the flight attends too.”

Five Incredible Gifts of a Life Changing Illness Sometimes time gives you a clearer perspective on what is important when diagnosed with a life changing illness. Many of the comments were 'thank you' messages to me for sharing my story and how my words have empowered others. But for me being able to share my experience has been therapeutic and a reason why I had to go through such a difficult time. I am grateful to have come through my journey on the positive side. Here is one of the comments that touched me:Anne - this post is a gift, too. We're all so happy and grateful you came through all your treatment as well as you did. It's so good to have you "back"! Thank you for sharing your experiences and resulting gifts - all good reminders as we live through the difficulties of life, no matter how big or how small.”
Medical Errors: A Matter of Life and Death I wrote this post after I experienced a Medical Error. I was ok, but the experience showed me the importance of direct communication with the physician versus the medical assistant who ‘runs the office.' I was surprised that so many people shared their story of their medical error experience. I should not have been surprised because I know that Medical Errors is now the 3rd leading cause of death in this US. To me, this is unacceptable that with all of the expertise in healthcare, we cannot get a handle on medical errors. We have to do better. Here is one of the comments: Everyone has to be vigilant, be alert and speak up and ask questions to help bend this curve. We are living in a dangerous time, and it will take the entire healthcare team to change the course. Hi, Anne. I am so sorry to hear that you had to go thru this. I too have been a victim of a medical error. It took place at my podiatrist's office - a "routine, simple incision" which became infected in that office due to the unsterile environment. The bacteria latched onto a small screw I had in my foot. The result was two surgeries where they dug out the infection leaving a large open wound that needed to heal from the inside out. A 5-day hospitalization and umpteen appointments with the infectious disease doc. A port was placed in my arm delivering two daily one hour drips of vancomycin into my heart as I had developed osteomyelitis. I couldn't walk on my foot for weeks. It was a painful, scary and angry time in my life and I now do everything I can to keep others from having to go through that or anything similar. We need to speak up about the dangers of medical treatments and try to make it a safer place for patients.”

 The Last Dance: Encountering Death and Dying, this post was written after a friend of mine suddenly lost her mother. Coincidently, during a meeting for a project I was working on, I met the creator of the Actual Dance on a teleconference call. He shared a link so we could all watch the Dance to decide if we wanted his to present at the upcoming conference. I learned he wrote the Dance when his wife was diagnosed with Breast cancer and how hearing those words changed his life. He put his feeling into the project and has taken it around the country to support caregivers who hear life changing news and wonder what they are going to do next. Here is what one reader shared in her father's end of life experience. "Thanks for sharing this article. I experienced the power of the advance health care directive document with my Dad's passing last week. It was comforting to witness that his end of life wishes was respected and he had a peaceful journey. It was also a great opportunity for me to reinforce the conversation with my Mom, my siblings, and my family regarding our end of life wishes. We need not be afraid to talk about death as it is part of life.” I think the message is to be prepared and share with our loved one what those wishes are. This will allow a peaceful transition to our next step in the circle of life. 

Moving Forward, I wrote this article after the recent presidential election to ‘put out a call to action' to all as our new president makes his cabinet selections and to be vocal about policy changes that impact our lives. I hope the President-Elect Trump does well, because if he does, we all do. As he an outsider to politics it is my hope he surrounds himself with people who do have expertise in the individual areas of Government they have been asked to serve. I was impressed with comments as many people are being open minded and keeping a positive attitude as we move forward. Here is an example; “I think many nurses are anxious to see how health care will be transformed under this new administration. Let's keep a positive attitude into the New Year and beyond!”

The Teachable Moment As a nurse who became a patient I realized the more information I received, the better I understood the plan of care and what to expect. It took some of the fear out what I was experiencing and allowed me to regain some control over my life which helped me cope. The comments from readers let me know I hit a cord and showed me that many healthcare professionals are looking for those teachable moments. “Fabulous "Teachable Moments" Anne it is wonderful how you can turn your experiences into more of them! :) In reading your examples, I could almost FEEL a shift as you went from being an object of care/treatment to being engaged in an active roll. I could ALMOST put myself in your shoes and hope this post is spread far and wide. Reminds me of a Plato quote: "All learning has an emotional basis"! Involving and empowering patients is so critical to providing excellent care!”

Nursing Claims Data: What does it tell us? I wrote this post after a webinar on nursing claims data. The goal of the program was how using data to identify liability patterns and trends to help nurses understand their areas of greatest vulnerability and to take appropriate action to protect patients from harm and nurses from potential litigation. Today, we have a way to evaluate how we are doing, where areas of strength and where weaknesses are so we can make corrections as part of our processes improvement efforts. Those who commented on the post shared their insights on the topic which made the post valuable. Here’s one, “Great advice. This is something that all new grads need to be educated about. They also need to have the opportunity to get familiar with policies and have the opportunity to spend time with a Risk Manager.”

In 2017 I plan to continue the mission of Nurse Advocate but with more ‘calls to action’ so all readers (consumers, caregivers, and all members of the healthcare team) are empowered to do their part to improve the role they play as members of the healthcare team. I hope you will join me on the journey!

Thank you for being a loyal reader of Nurse Advocate. If you have topics you would like to see covered in Nurse Advocate. Please feel free to email your ideas and comments to 

So as I close out 2016, I wish you and your families a Merry Christmas and a Happy New Year.

See you in January! 

Friday, December 9, 2016

Value: The Missing Piece to the Puzzle to Improving Our Healthcare System

According to the latest news reports, National health expenditures will hit $3.35 trillion this year, which works out to $10,345 for every man, woman, and child in the United States. As a result of escalating healthcare costs, there is a mandate for all healthcare providers to demonstrate value for the services and products they provided.

Healthcare professionals are turning to each of us (the end user and consumers of health care services) to learn what we expect from the healthcare providers? What constitutes value for you in health and healthcare?  

Measuring the value of health care services is difficult as value is different for each person. This is because most people do not equate health care services the same way as we do other services. For example, if you go to a restaurant and do not get good service you probably will not go back to that restaurant. In healthcare, we (the consumer) tolerate long waits and what we may consider inferior services because we don’t feel there is any recourse. We tolerate things in healthcare, or at least we used to.

Today, consumers are responsible for more of their healthcare costs. As a result, they are demanding more from providers. They want to receive information that allows them to make decisions on care options. They also want to be treated with respect and receive timely communications about their care. They want to be valued as a person. Individuals who don't feel appreciated by members of the healthcare team are changing providers. When a person does not feel valued, they will seek out providers who they can communicate with and who shows concern for them as a person. In other words, consumers are starting to treat healthcare like other services they receive and expect more from the health care providers they choose. Those who can meet these demands will do well. Those who do not provide value in the services they provide will not do well in today value-based healthcare system.

In a post a few months ago in Nurse Advocate, titled the Waiting Game, I shared a frustrating experience I had when I was made to wait to see my doctor with no word from the staff as why or how long I would have to wait. I wrote I did not feel valued by the healthcare team at the clinic where I was receiving care. I wrote this post because I know waiting is a common problem many people experience and wanted to call out to fellow patients, caregivers, and other healthcare professionals that this type treatment is not acceptable and needs to be recognized and corrected.  One of the comments I received from the post that was eye-opening to me and showed me that we, as a customer, should expect more from healthcare providers who care for us. We all have choices as to where we receive care and should exercise our options when we do not experience the type of care we expect.   

Here is the comment: Anne, I have to wonder why you continue with a doctor who treats his patients this way. I see a fine cardiologist and never, ever wait. I even stopped bringing a book to read. I asked him why I never wait and he said because he waited once for 2 hours to see a doctor and swore he would never do that to his patients. I switched all my doctors who made me wait and found perfectly competent clinicians AND feel respected. Long waits don't automatically mean they are "good." It can mean that they are careless, unorganized or don't care. When I was pregnant, I was often the cause of doctor back-ups. My complications (which often led to miscarriages and early deliveries) allowed me preference, and I would go right in. If this is the case at your doctor, and they told you there was an emergency, it would be another story, and you might be grateful for a caring physician. If there is no reason, and we allow doctors to treat us this way, we are part of the problem.

The comment raises important points that we as consumers of healthcare should keep in mind. Our time is valuable and should be respected. Providers should keep us informed when there is a delay in an appointment time and offer alternatives if the wait is excessive. This is common courtesy that should be standard of care for all healthcare providers and organizations. 

Currently, the system is set up to meet the needs of the providers and not the consumer. This is changing, and your input when problems occur is important to share so that providers know what you expect from a provider. If we want the system to be better, it is up to each of us to make our concerns heard. Here are some the ways you can address issues and challenges when you use the healthcare system. 

·        Talk to a member of the staff in a position to address a challenge that you are facing. Most physician offices have an office manager who is in a position to hear patient concerns and take action. The office manager is usually in the background so you will have to ask to talk with the office manager. Don't be intimidated; it is like asking for a supervisor when you call a vendor on the phone, and you are not getting the information you need.
       If you are a patient or a caregiver in the hospital and have a concern, ask for the Hospital Patient Advocates or the Patient Representative. Many people are afraid to tell a nurse or the doctor about a problem they are having as they fear retaliation. Today, most hospitals have Hospital Patient Advocates who are in place to address patients and their caregiver concerns or complaints. Hospital Patient Advocate is available in place to resolve issues and bring these matters to the people in charge who can correct situations.  
       When you are asked to share your opinion in a survey please take your time and answer the survey honestly and make recommendations that can improve the system. Sometimes you can see a solution better than the people who work in the system.  There is lots of attention paid to patient surveys as reimbursement is tied to them. 

·       To ensuring patients and caregivers have a positive patient experience, many organizations now have put into place, a Patient Experience Officer. The Patient Experience Officer many times can be a physician or someone in a high-level position who is responsible for addressing concerns from patients and caregivers. Check to see if the hospital you use has a Patient Experience Officer. They are another good contact for you to keep in mind.

·       Many organizations have put into place Patient and Family Council Meetings. In these groups, patients and caregivers come together and share information with the principal members of the team to improve processes and services. Your opinion is critical as many times the staff at the hospital, clinic or doctor's office do not see how the system works from your point of view. 

Organizations are taking an active role in educating patients, caregivers and all who use the healthcare system on Patient Safety. Many patient safety offices and risk management professionals know that getting the patient more involved in their care is critical to decreasing medical errors.

One organization doing good work in this area is PULSE: Patient Safety, Advocacy, and Support. PULSE provides patients, and the family and friends of patients, the opportunity to partner with their health care providers, to help to ensure the best possible outcomes in a person’s medical care.

In closing, keep in mind we are all consumers of healthcare. Therefore I urge you to use your voice and be part of the process to ensure our health care system is delivering valuable services and products to all.

Have a good week! 

Saturday, November 26, 2016

Caregiving: A Promise We All Make When We Take Our Vows

Recently I attended a wedding where I ran into a friend who I went to nursing school with. My friend is one of the nicest people I know - always happy and vibrant. When I saw her, I went up and gave her a big hug, she did not respond as I expected. I looked at her husband, and he looked at me with a sad face and said 'she is not herself anymore'. He explained she was diagnosed with early Alzheimer's a few years ago. In talking to him, I learned her symptoms started when she began forgetting things and making mistakes at work. He also noticed slip-ups at home. Eventually, he took her to see a doctor as she was not herself. After a series of tests, the diagnosis of Alzheimer's was made.

Over time she has declined significantly and now requires full-time care and help with all of her activities of daily living. Her husband has assumed this role and stopped working to take care of her. She goes to an adult day care center during the day, but the stress of caregiving has been hard on him and his entire family.

During the Mass, I listened to the priest as he led the couple in their wedding vows; “I, take thee, to be my wedded husband/wife, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death do us part, according to God's holy ordinance; and thereto I pledge myself to you." I realized how important those words are, especially when one of the two people become sick, and one assumes the role of the caregiver.  It is a promise we make when we say our vows before family and friends. I don't thin we really ever realize what those words really mean till we are faced with being a caregiver for a loved one. 

After the ceremony as we said our good-byes, I asked my friend if I could call him from time to time. He said he would like that, as so many of their friends have stopped calling or coming around. 

My heart was breaking as I watched them both walk to their car.

I could not stop thinking about them and how their lives have changed due to this terrible disease. I was so proud of my friend's husband for being there for his wife. You could tell by looking at him how much he loves his wife. 

The experience left me sad but with a desire to do something positive to help my friend and others who are caregivers. As I thought about it and what I could do, I recalled how important social media was for me when I was sick. Facebook helped me stay connected when I felt disconnected and lonely. Being able to go online allowed me to gained support from family and friends who would respond to messages I sent. When I felt up to it, I would respond to posts from my connections that helped me feel that I still was part of a community.

As I thought about it more and more, I decided to start a Facebook Group and called it Caring for the Caregiver. It is my hope that the site will go viral and attract caregivers who will use the site to share thoughts, experiences and support each other.

Please feel free to go onto Facebook, and join the group Caring for the Caregiver. If you know someone who is a caregiver, please encourage them to go to the page and become part of the community.

Thanks for reading Nurse Advocate! Have a good week. 

Sunday, November 20, 2016

I’m Still Standing

November 24, 2016, marks the anniversary of an event that interrupted my life in a way that I could never have imagined. 

November 24, 2014 was a clear sunny day. I was returning from an appointment and made a right turn, hit the curb, and blew out a tire. As I could not drive the car, I called my husband. When he arrived, I explained what happened and he said that I did not look right. I told him, I felt ok; but he thought something was ‘off’. He said he wanted me to go to the hospital, so off we went. After explaining to the Emergency Department physician what happened, I was sent for a CAT scan. Once the results were back, the doctor explained I had a mass in my head and would have to be admitted to the hospital for further testing. 

I honestly don’t recall my reaction to those words…and to this day have very little recall of the events that took place over the next few weeks. My husband, family, and friends have filled in some of the blanks. In talking to people over the past two years, most have said that the gaps in my memory are a blessing. In a way I agree, but feel sad that I don’t recall such an important time in my life.

During the early stage of my journey, I underwent a number of tests to determine if I had cancer in any other part of my body. Fortunately, I did not and it was determined that the brain was the primary source of the cancer. Once the tests were completed, the medical doctor overseeing my care, said he asked a neurosurgeon to see me.  As I was not myself, my husband felt that he needed some help in understanding the plan of care. He asked two of our friends and colleagues of mine to be present when the neurosurgeon examined me. Marilyn Van Houten, a nurse case manager and Cathy Bowers, a social worker/patient advocate came to the hospital to hear the Neurosurgeon explain his plan of care. He was not happy to see my two friends in the room, and wondered if they were attorneys. My husband explained they were our friends and my colleagues and we asked them to come so they could help us understand the plan of care he was going to lay out. He agreed to let them stay, but said they could not take notes. He went on to tell us that the tumor was not operable, but I would need a biopsy to determine the pathology. I recall asking the doctor who he would have perform the biopsy if this was happening to his wife, daughter or mother. He responded with an answer that scared me, saying that he would do the biopsy as he is the best! 

Those who know me, know that I would not like that answer or the fact that I was going to have a major procedure in a small community hospital. So once the doctor left the room, Marilyn and Cathy said they were going to collaborate and explore options and would get back to my husband as soon as they could.  

Later that day, Marilyn called my husband to tell him she had reached a Neurosurgeon at the University of Miami who agreed to see me as a second opinion. My husband talked to my treating physician the next day. He was not happy, but agreed to discharge me so I could go to the University of Miami. 

I visited the neurosurgeon a few days later. The doctor was sensitive and took his time explaining what they saw on the CT scan to myself and my husband. As expected he recommended a biopsy to determine the pathology which would dictate the course of treatment.  The Neurosurgeon recognized the severity of my case and scheduled the brain biopsy for the next day. The biopsy reveled that my tumor was a Primary Central Nervous System Lymphoma. Being at the University of Miami allowed the Neurosurgeon to coordinate an appointment with a hematologist/oncologist through the Sylvester Comprehensive Cancer Center who specialized in the type of tumor that I had. As I was showing signs of pressure from the tumor a stat consult was made with Dr. Lossos, the Hematologists/Oncologist. After seeing him, he admitted me to the hospital so I could be stabilized and started on chemotherapy. 

This course of care continued for the next few months. I was admitted every two weeks for 10 sessions of chemotherapy. I had to stay in the hospital for a few days after receiving chemo to ensure my blood levels reached a safe level for discharge according to the protocol. I did respond to the chemo and became more and more alert.

There is no doubt in my mind that because I had two advocates who helped me and my husband find a center of excellence where I was seen quickly, had a biopsy to provide the doctors with the information they needed to diagnose me, was seen by an expert in the type of cancer I had and was able to start treatment quickly, I am alive today.

Today, I am tumor free. My life is not the same as it was on November 23, 2014, but I am still standing! I had a very good outcome, but did have complications from the chemotherapy; bilateral foot drop and neuropathy in both feet. As a result, I need to wear braces to walk, use a cane for stability and am not able to drive. These complications have been challenging but I have not given up hope on further improvement, and I am working toward acceptance that these problems may be permanent. Today, I am focusing on my abilities vs. my disabilities.

I learned a great deal over the past two years which has allowed me to heal and gain some perspective on what happened to me. The one lesson that stands out for me the most is that being a patient is very difficult. As a result, I have focused my goals on using my experience and expertise as a nurse/case managers and patient advocate to educate people, caregivers and all members of the healthcare team on how to better navigate the complex world of healthcare.  I have done this in various ways over the past two years that include writing my Blog, Nurse Advocatesharing information on various social media sites and helping those in need to have a voice and find resources to meet their needs. 

As I celebrate Thanksgiving, I reflect back over the past two years and recall the things I am most grateful, the short list includes:

I am grateful to my husband who was by my side every step of the way and continues to support me as I move forward.  

I am also grateful to my family and friends who prayed and supported me during my journey. Each was there in their own way and continue to support me as I heal. They reminded me of the importance of remembering people in my life who are sick or challenged in some way. I have tried to ‘pay it forward’ by sending a note, making a call or visiting a friend or family member who is sick, displaced or having a difficult time.

I continue to be grateful to my healthcare team. Specifically to Dr. Lossos and his counterparts who treated me, supported me and continue to monitor me in case of re-occurrence.  

I am grateful to the clinical and administrative team who supports Dr. Lossos. Specifically Keisha, Dr. Lossos office manager who continues to be responsive to my questions and request and always get back to us in a timely manner. I am grateful to the nurses, the pharmacists, aides, housekeeping staff, food service team, Chaplin and so many others who cared for me on the Oncology Unit at Sylvester Comprehensive Cancer Center. Each made an impression on me and did their part to help me through a very scary and difficult time in my life. They were professional, caring and responsive to my needs and I am forever grateful.

When I was not in the hospital, I utilized the outpatient clinic services through the satellite centers that are part of the Sylvester Comprehensive Cancer Centers. Each center functioned professionally and provided the care that allowed me to progress and improve,  and for that I am grateful.

I am equally grateful to the team at Health South Rehabilitation Hospital in Sunrise Fl. where I received physical, occupational and cognitive therapy both as an inpatient and then as an outpatient. The experience allowed me to gain confidence and improve physically as well as mentally. Today, I am finished with formal therapy but have continued to exercise by swimming and doing water aerobics at Central Park Aquatic complex in Plantation FL. I have enjoyed the exercise as well as the support I have gained from the men and women who are part of the water aerobics program. 

My healthcare journey has allowed me to meet many people that have educated and empowered me along my journey. They have included oncology professionals, other cancer patients and support staff in the various settings who supported me and my husband at various times. In general people have been kind and supportive and for that I am grateful.

As I have improved, I have tried to use my personal experience to help improve the system. Examples include being asked to be a member of the Patient and Family Council at Sylvester Comprehensive Cancer Center. In addition, I have reconnected with many of my professional and community groups that are important to me. These include the South Florida Case Management Network where I am a member of the Board of Directors, The Patient Advocate Certification Board where I am part of a dynamic group of professionals focused on developing a national certification in patient advocacy. I have re-activated my membership in Quota International of Plantation FL, and joined a group of women that make up the Heroines Choir. Each of these organizations have allowed me to move forward and regain my professional confidence.  

In 2017 I look forward to continuing to make progress and remain healthy. I also am looking forwarding to continuing to contribute as a healthcare leaders by mentoring and educating those interested in patient advocacy and case management. I look forward to returning to work with a renewed vision that will allow me to assist those in need to successfully transition through the broad and complex healthcare system.

As I look back on the past two years, I realize my world was turned upside down but I am still standing and for that I am grateful. 

I know I am not alone as so many people are thrust into the complex world of healthcare in the blink of an eye. If you or a member of your family has had a medical challenge that has rocked your world, know that you are in my thoughts and prayers. 

I am grateful to be here, to be recovering, and to have family, friends, and colleagues who support me unconditionally. For all of these things, I am most grateful.  

None of us know what the future will hold for us, but I am looking forward to the ride!

Thank you for reading Nurse Advocate and I wish you and your family, a Happy Thanksgiving.