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Sunday, September 25, 2016

Considering Spirituality and Faith in Managing Life’s Challenges





Of the many things that assisted me through my healthcare journey, I have to say that my faith helped me the most. I have not talked about this before because it is personal. However, recently, I have been thinking about how important my faith was to me during my healthcare journey, that I wanted to share a few thoughts on this topic as it might help patients and caregivers consider the value of Faith and Spirituality in managing life’s challenges.

As I progressed on my journey, I realize that I took my faith for granted till I was diagnosed with a Central Nervous System Brain Tumor. I would go to church, say my prayers, try to live my life as a ‘good Catholic.' However, it was not till I got sick that I realized how important my faith was and how much courage I received from my faith. I needed to know that there was,  a higher power if you will, that I could turn things over as I had no control. Because of my faith, I believed turning to God would give me strength to face the challenges of fighting cancer. I gained peace of mind from the prayers I said and were said for me by family and friends.

When I was in the hospital, I looked forward to the visits from the Catholic priest from Camillus House who was assigned to Sylvester Cancer Center. He made rounds on the patients who had asked to see him. I learned about the opportunity to see a priest, from the Unit Secretary who worked on the floor I resided for my chemotherapy. She said if you want to see the priest, call the operator and give her your name and room number. That way she will put you on the list, and the priest will see you when he makes rounds. The priest did come to visit me several times during my various stays. We had good conversations that lifted my spirits and helped me see some of my fears more clearly which helped me cope better.

When I was home, I received Communion from the team of Eucharistic Ministers from my church, St. Gregory the Great. By calling the Parish office and putting my name on the list, it allowed the team who coordinated home visits to know that I was requesting a Euchuristic Minister to visit and receive Communion as I could not get to Mass. I looked forward to them coming, talking with them and taking a minute to say a pray. It was comforting, and I am thankful for the opportunity they provided to turn my attention away from myself and focus on my faith.

In doing research for this post, I read about Victor Frankl, a psychiatrist who wrote of his experiences in a Nazi concentration camp. He shared: “Man is not destroyed by suffering; he is destroyed by suffering without meaning” My faith gave me meaning and helped me cope with the challenges my husband and I were facing. One of the challenges all involved in healthcare face is trying to help people find meaning and acceptance in the midst of their suffering. Experts, remind us that religion and spirituality form the basis of meaning and purpose for many people.

So many people struggle with the physical aspects of their disease, yet when we are faced with our mortality, we are faced with mental and spiritual suffering as we try to find answers to some of the deepest questions of life. Some may ask: Why is this happening to me now? What will happen to me after I die? Will my family survive my loss? Will I be missed? Will I be remembered? Is there a God? If so, will he be there for me?

I remember a conversation I had with a friend via email as I was trying to rationalize how and why I got a brain tumor. Here is a snippet of our e- conversation: Take a minute to ponder her words.
How does illness happen? Why does illness happen? The 'why' and the 'how' are connected. Medicine can give us their best interpretations but rarely know 'how' we become ill and even more importantly 'why' we become ill. Since illness is our experience, we must answer these questions for ourselves. The author's position is grounded in the psycho-somatic connection that we rarely live in until we are sick. Illness demands our attention and maturity.  We are called to become our own healers. What we thought were important changes. What we thought was urgently becomes less demanding. Our indispensability becomes humorous. Our isolation is broken by our dependence on others.  We change because the world is the same, but different. We are humbled! Illness that threatens our life can actually save our life if we go-within to become our own healer. 

If you are a patient reading this post, take some time and reconnect with your faith. Take time to reach out to your place of worship and request a visit or to be put on the prayer list.  Take the time to read thought provoking books allows you time to explore your feelings, your joys, your fears, and uncertainties. Doing so allows you to unburden yourself so you can cope better with the challenges and uncertainty you face. 

If you are a patient, I hope this post gives you the inspiration to explore your faith and experience the healing power it can bring.

If you are a healthcare professional reading this post, take time to talk to your patients and their caregivers about their faith and provide the privacy they need to practice their faith. 


Thank you for reading this week’s post in Nurse Advocate! Sending positive thoughts to you and yours.

Saturday, September 17, 2016

The Teachable Moment



Today, finding that ‘teachable moment’ is so important. Life is all about learning, gaining a better understanding of the events taking place so we can make better choices that can enrich our lives. This could not be truer than in healthcare. 

Today, there is a focus on ensuring that the patient is the central member of the healthcare team. Evidence shows the the more we engage the patient, the better the outcomes will be. 

Everything we do as healthcare professionals revolves around the patient, so it is in our best interest to educate and empower them, so they are informed, educated and know the choices they have regarding the treatment they receive. Many healthcare professionals are more cognizant of this and are taking the time to educate and empower the patient and their family, so they understand their conditions and the plan of care. 

In this week’s post, I would like to highlight two examples of 'teachable moments' I experienced during my healthcare journey. Each helped me be a more informed patient so that I could help myself heal and better participate in my care. 

The first example came when I was in the hospital getting my 5th round of chemotherapy. My nurse for the day came in and introduced herself. We talked as she updated the whiteboard in my room with her name and how I could reach her if I needed her. Then she turned to me and asked me what my goals were for the day.  I looked at her for a minute as no one had ever asked me that question before. She explained to me, she wanted to help me reach a few of my goals today, but to do that she needed to know what they were. I thought about it and told her that I wanted to get a shower. I also said that I wanted to take a walk so I could get out of my room for a little while. These were not easy goals to achieve as I was hooked up to IVs and needed help to get into the shower as I was very weak. The nurse was not put off by the task. She said, ok, let me check on my other patients and then I will be back so we can get started on helping you meet these goals.

When she returned, she got me ready to take a shower. She gathered towels and put a chair in the shower so I could sit down once I got in there. I asked her about the IVs, and she said, don’t worry, we can unhook you for a short time. She then went and got a shower sleeve that she put over my arm where the pic line was so it would not get wet. This allowed me to wash myself and not get the line wet. It felt great having hot water run over my body. I was even able to wash my hair. Once done, I put on a clean gown which felt great. She reconnected the IVs, and I  got back into my bed to clean sheets. My nurse and the aide were able to change my bed while I was in the shower. 

After I had rested for a while, the nurse came back and asked me if I was ready for my walk. She got me up, and we took a short walk up and down the hallway. It was fun seeing the other patients and staff whom I passed. Each said hello and asked me how I was doing. I felt good and I was glad that I had achieved my goals. I was grateful to my nurse for asking me what they were.

The second teachable moment occurred during a conversation my husband, and I had with the pharmacist who was a member of my oncology team. It was Week 4 of my chemo treatment. My Hematologist had just told us that my tumor was GONE. Both my husband and I were in shock, as we had not expected that news so early in my treatment. 

As my team was making rounds, the pharmacist stayed behind for a minute to ask me a question. After I answered him, he asked me if I had any questions for him. I took this opportunity to ask him how the tumor could be gone? I told him we were happy and grateful, but we did not understand how this could happen just after three treatments. He explained to us that the protocol I was on was meant to work fast - if it was going to work. As a result, the team expected the tumor to be gone after the 3rd round of which is why they scheduled the MRI after the 3rd chemotherapy treatment. He explained that in my case, the tumor was very receptive to the chemotherapy and as a result, the tumor was gone. His explanation helped me to understand and realize there was a science to the treatment I was receiving. His explanation made me very grateful that I had been referred to my hematologist who had specialized in the type of tumor I had for years, had developed a protocol to treat the tumor type and that my tumor was receptive to the therapy and was GONE. 

I asked the pharmacist about re-occurrence. He said ‘there is a high probability of re-occurrence, but that is why the doctor will watch you for two years.’ I asked him if the tumor returned would I get the same type of treatment. He said that he did not know and that my hematologists would determine the course of treatment if and when the tumor reoccurred. He said, for now, just relax.

These two examples showed me the importance of finding the teachable moment and taking advantage by educating and empowering a patient.  Each example allowed me to be involved and better participate in my care. It showed me that, by setting goals and asking questions, I could better understand my care and help myself heal.

If you are a patient or a caregiver reading this post, I hope the words empower you to ask questions, so you better understand your care. Each member of your team is there to help you to understand your diagnosis and the plan of care that in place to treat your condition. If you have questions or want to do some things that will help you to feel better, do not hold back. Know that taking care of you is the most important thing that they have to do.

If you are a healthcare professional reading this post, I hope this post helps you realize there are teachable moments in every encounter. Please take the time to engage your patients. Ask them questions, learn who they are and how they are feeling about themselves and their conditions. These conversations lead to those teachable moments that help your patients and their caregivers to be involved in their care.

If you have an example of a teachable moment that you experienced during your healthcare journey, please feel free to share in the comment section or by emailing me at allewellyn5@bellsouth.net

Thanks for reading Nurse Advocate and have a good week!


Monday, September 5, 2016

The Search for an Individual Health Care Insurance Policy: Not as Easy as it Sounds






In this week’s post, I wanted to share a challenge I had as I went about the process of searching for an individual healthcare policy to replace my COBRA policy as it was expiring. 

Having healthcare insurance has never been so important to me because I realize that having a good policy allowed me to have access to providers and hospitals who saved my life when I was diagnosed with a life-threatening illness in November of 2014.  

Today, most people receive healthcare insurance through their employer as part of their employee benefit plan. For most of my career, I have been fortunate to have an employer-sponsored health care plan and thought little of how my employer put together the package they offered. For those who do not have health insurance offered by their employers, the Affordable Care Act has created a way individuals can buy insurance through the Market Place.

When I was not able to return to work in March 2015, I was offered COBRA by my employer. The COBRA policy allowed me to continue my health care insurance plan without interruption. This was a huge relief to me and my husband as the policy allowed me to have access to the doctors who had the expertise to diagnose and treat me for the brain tumor that threatened my life. If I did not have that policy, there is no doubt that we would be in a tremendous amount of debt and worse, I might not have survived. 

COBRA is a bridge that allows a person who has to leave their job to continue their insurance coverage till they can return to work or get an individual policy. In most cases, COBRA lasts for 18 months but under certain circumstances, can be extended to 36 months. Most people return to work and continue coverage under their employer-sponsored health care plan. Others use the opportunity to test the waters of independent practice. For those who do not return to full-time work, or their employer does not offer insurance, they have to search for an individual or family healthcare policy.

Finding a health care insurance policy to meet an individual needs is not an easy job. As most people do not have experience to understand what makes up a good policy,  many people turn to an insurance broker to help them understand their options or to the healthcare marketplace that was created by the Affordable Care Act.  

The Affordable Care Act has changed many of the rules that in the past made it difficult for people who had a medical or mental health condition (often referred to as pre-existing conditions) to purchase health insurance. Before the ACA, insurance companies could deny a person coverage because they had a medical condition as part of their medical history. 

As a result of the ACA, this is no longer possible. Today, when you look for an insurance policy, your medical history does not come into play. This has helped many people be able to purchase health insurance who in the past would have been denied.

The ACA has also changed how people search for insurance. In the past, many people worked with an insurance broker to learn about the policies available and which one’s met their needs. Brokers had the expertise to understand how policies worked and could give their clients advice that served them well. Most times people would choose the policy that allowed them to see the doctors who were currently treating them and go to the hospital where those doctors had privileges. With the development of Healthcare.gov and State Insurance Exchanges, brokers are being displaced, leaving the search up to the consumer. 

The platforms that are in place allow the consumers to search for insurance. They are not difficult to navigate and provide information that enables the consumer to make an informed decision by comparing various policies which are available.

The Healthcare Market Place is available to help people search for insurance. This task may be easier for people who do not have medical conditions and do not have a preference as to the doctors they see or the hospitals they prefer to be treated if they had an injury or a sudden illness. However, for those who have specific choices, the process is not as simple.

To control healthcare cost managed care companies set up provider networks which members have to use or pay higher out of pocket costs if they decide to go ‘out of network.' This has raised the bar and put pressure on the consumer, especially those who have medical conditions which require continuous care to make sure their doctors are part of the managed care network when they search for health insurance.

Another cost containment strategy many managed care companies are implementing are narrow networks. Narrow Networks limit the number and type of specialists that members have access. If you want a plan with a ‘wide network’, you will pay a higher premium or higher out of pocket costs. 

Some companies also have tiers and categorize providers and organizations according to their specialty and risk factors for the patients they see.  Specialists who provide care to complex patients are classified in a higher tier, so the consumer needs to pay higher out of pocket costs if they want to see a specialist. Providers and organizations who are in the higher tier categories have higher costs than those in lower tiers. Diagnostic testing, lab work, and other services like rehabilitation programs may also fall into tiered levels.

As a result of these things, looking for a healthcare policy is complicated and raises the cost of insurance for the consumer.

What is even more frustrating is that the managed care insurance companies can choose to pull out of an area when they find the area is not profitable,  leaving members to find new coverage and providers. Providers also are in a precarious position as their rates are negotiated by the the managed care network as part of their provider network contracts.

Another thing that was eye opening for me as I explored new policies was unlike other types of insurance you may purchase; you cannot purchase health insurance other than during the open enrollment period (November-January) or when you have a qualifying event.

As with many things related to healthcare, the system seems to be set up to benefit the insurance company instead of the consumer. To find effective and affordable coverage, the consumer has a tremendous amount of work as they navigate a complex system with strict rules, regulations and high costs.  Little training is available to help consumers understand the complex insurance industry so consumers need to take the time to learn the system as much as they can when they are in need of a policy.

Here are some tips that I learned from my experience of searching for an individual healthcare policy. 

  • Give yourself time. It takes time to find the right policy, so give yourself the time to do the research and find a policy that meets your needs.
  • As for help:  if you know an insurance broker, set up an appointment to discuss the process of buying health insurance.
  • If you do not know a broker, each State and county has Insurance Navigators who can help you understand the process. Navigators are familiar with the plans in your area and can help you find a policy to meet your needs. If you find yourself confused, don’t hesitate to ask for help.
  • Take time to get familiar with the technology in place that helps you search for health insurance. The two systems I used to during my search were Healthcare.gov and Costco. (Yes, Costco sells health insurance, and you do not need to be a member to use the system). Both sites were user-friendly and allowed me to view and compare various plans and their costs. If you have questions, both have assistance available. 
  • Make a list of what you would like to have in a policy. If you want to see certain doctors or go to a specific hospital, write the names down so you can check various managed care networks you are considering to see if those providers and organizations are part of the managed care network. You can do this online by going to the specific managed care organizations website and clicking on the tab that says find a doctor. Plug in the names of the doctors or facilities. These online provider directories are open for anyone to search.
  • Once you checked the online network, call the provider to verify they are in the network. Many times the online information is not up to date, and a provider may have dropped out of the network in-between network updates, so checking with them is another step in the process. Most doctors and hospitals are used to calls verifying network participation so don’t feel shy about asking.
  • As you look at policies, compare several to see which one’s meet your needs. In addition to checking for providers you want to see, look at the premiums, the out of pocket costs, and the deductibles of each policy so you can see the differences and decide what you can afford.
  • Depending on your income, you may qualify for a subsidy or tax credit from Healthcare.gov. A subsidy can help you afford a higher price plan, so it is worth checking out.
I am happy to say that I found a policy that I believe works for me. My qualifying event that allowed me to buy insurance outside of the open enrollment period was that my COBRA policy was expiring on September 30th. Unfortunately, my premium is going up, and I will have higher deductibles and out of pocket costs with this new policy. This is because my choices were limited I live in Florida, and many of the managed care organizations do not offer coverage in the State so choices are limited. 

I will only have the new policy for a few months, until the open enrollment period opens November 2016.  Once enrollment opens the manage care companies release what States and Counties they will provide coverage for 2017 and the cost of each plan. Once this information is published, I will be able to review the choices and make a change if want. 

Insurance companies are getting very picky where they offer policies. As a result, consumers had limited choices and are required to pay higher premiums so it is important to review your choices carefully. 

In closing, I urge everyone to stay informed and up to date on what is happening in healthcare. It is important time and your voice is important.

I plan to stay informed on the changes taking place regarding healthcare insurance on the local and the national level. As an experienced healthcare professional who has gone through the process, I have a good number of suggestions to share that would improve the process. I have sent ideas for improvements to the State of Florida Insurance Commissioner, my State Legislative officials and my members of Congress and the Senate. 

Thank you for reading this week’s post in Nurse Advocate. I hope this post provides you with information can use if you find insurance for yourself, a family member or a friend, who find themselves in a position of needing to find a health care insurance policy.

If you have a tip you would like to share, please post a comment in the comment section or email at allewellyn5@bellsouth.net

Have a good week!  
    


Friday, August 26, 2016

The Waiting Game



The Waiting Game

Did you ever wonder how doctor’s appointments are made? It seems like everyone has the same appointment time but no one's time is honored.  Recently, I had my three-month checkup with my Hematologists. My appointment was made for 9:20 am on a Tuesday. As we were going to Miami, we took a chance and made a second appointment while we were in the area for 11:30 am. We thought this was a safe bet, but unfortunately, our plan was derailed due to a delay in the patient flow clinic schedule.

To ensure we were on time, we left our house at 7:45 am as you never know how the traffic will be going to Miami. Luckily, traffic was light, and we sailed down to Miami arriving at 8:30 am. We registered and went to the 2nd floor where the Oncology/Hematology clinic was located. We were greeted by a familiar face and told that the clinic was closed for renovation, and all patients were being seen across the hall. We took our seats at 8:45 am and I thought we might get seen early, but the waiting room was filled so I started to have my doubts.

As we waited, the nurses were calling people in but as my appointed time came and went, my name was not called.  Time passed, and we waited and waited. At 10:30 the nurse called me. My husband and I started toward the door but stopped us. She said she was just bringing me in to take my vital signs and I would be right out, so my husband could wait till I came out. 

After returning to the waiting room, we continued to wait and were finally called at 11:00 am. The nurse who put us in the room said that the doctor would be in soon. I asked where the Nurse Practitioner was as she usually came in first and did a preliminary interview and got the electronic health record ready for the doctor. The nurse said she is no longer with Dr. L, but he did have a new NP with him which was why things were a little slow. 

The doctor made his way to our room about 20 minutes later. We realized we would be late for our second appointment; so my husband stepped out of the room to call the office and let them know we would be there as soon as possible.  The doctor came in, said hello, examined me and then went to the computer to document his findings.  I could tell he was not up for small talk, so I did not say anything so he could concentrate on what he was doing. Once he finished documenting, he turned to me and asked me how I was and did I have any questions for him. I told him I was doing well. I did have a few questions, and we reviewed them. He answered all my questions, told me he would see me in three months and that I was stable and doing well. I thanked him, and we went to the checkout desk.

As most cancer patients know our check-ups inspire fear, anticipation and a bit of apprehension. As a result, my husband and I are always on edge as we are fearful a problem will pop up. I am thankful that I continue to be blessed with good check-ups, but that little bit of fear is always there.  Waiting adds to fear and anxiety. 

As I sat there, I wondered why people who came after me were going in ahead of me. There seemed to be no rhyme or rhythm to the process. I wondered when I would be called as no one provided an update, the reason for the delay or an estimated time of when I would be taken. I thought how ironic it was that the TV kept playing an infomercial that talked about how the clinic is committed to providing a high level of customer service, but as I sat in the waiting room, I wondered what they meant by high levels of customer service since no one took the time to explain why I was waiting. In my mind, a simple explanation would go a long way in decreasing my anxiety and help me understand the delay.

Most of us know that when we go to a doctor’s office we will have to wait. We bring books, our cell phones and other things to keep us occupied. The frustration mount when the wait times grow longer, and no one tells you why you are waiting or how much longer the wait will be. I actually wrote a blog post on this topic that was called What to do When Waiting. 

Hospitals, clinics, doctors’ offices, and other settings that service patients have to do a better job of keeping their customers updated and informed. Their survival depends on it especially when revenue is based on the outcomes of patient satisfaction surveys.

As a frequent airline passenger, I recall after some horrendous delays where passengers were held on planes for hours instead of letting them deplane, the Department of Transportation put consumer rules into place that limits airline tarmac delays which provided the passenger with protection. Today, if there is a delay on a plane, the pilot comes on the intercom and informs the passengers what is going on and how long they anticipate the delay will be. They do this frequently throughout the delay to keep customers up to date. Although delays are still frustrating, the pilots messages help to keep the passengers up to date on the delays in their flight which decreases passengers anxiety.  

Today, with the focus on improving the patient experience, keeping patients and their caregivers informed and updated regarding delays is something that should be done in every setting.  As a patient, I appreciate information that keeps me updated on delays from the staff who has control over the patient flow. Updates show that the staff values my time and is a show of respect for their customer.  

I hope this post was helpful and provides some food for thought for the providers we depend on for our care. 

Thank you for reading Nurse Advocate. If you have a comment or would like to share your experience that has impacted your life, please note in the comment section.

Have a good week!



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 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, and I was looking forward to seeing her. 

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 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 from various parts of the United States to be with her as transitioned to the 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 helps to share the experiences many go through when they or someone they love is told they have a complex medical condition or faced with an end of life experience. 

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 it 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 the 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!