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The above picture is a typical rush hour in the Dallas Fort-Metroplex. We have these massive mix masters all over the entire region.  Now can you imagine elderly waiting two hours in the waiting room because the doctor is overloaded or had an emergency.  Perhaps mom and dad went together because their children live elsewhere, not available or they have none.  He is driving nervous with thick bifocals and hasn't had cataract surgery yet.  She is trying to read the signs but confused.  They sit an hour just in this intersection.  All their doctors are located near the hospital district in the heart of the city.  Parking charged by the hour and the extended time used up the money they were going to spend on a cheap supper at a fast food place - they are living on limited income and the price of their utilities, food, taxes have increased causing them to live with less and less.  Meanwhile the facilities and ACO's are charging more, Medicare reimbursing less.  

They struggle to keep up the yard. City Code Enforcement has fined them before. Used to be that Joe, down at the city would call and if they were sick would contact the Boy Scouts or Local Community Service Group or one of their good hearted neighbors would do it for them.  

 No one in the neighborhood where they moved 30 years ago seems to notice.  They don't attend church as much because of health and what used to be a simple drive down an uncrowded road is now the busy shopping district and the traffic is increased on the weekends by people who are getting their errands done on the weekend  because of the long hours they work during the week.  
The fatigue from the day,poor vision, construction and massive traffic causes intense anxiety and stress. The wait in the doctors office just to have him rush in, open his computer, type while looking at it and kind of speaking to them.  A quick 2 min assessment and due to metrics and mandates given by the ACO/Hospital corporation he works for he is off to the next patient.  The entire visit took ten minutes.  Then back to the waiting room to wait for lab work, finally she calls.  Lab is done.  They still have no answers, the staff is so "professional" and objective they have no expression, their is no friendliness to the patients or talking among the crew but they are all wearing their nicely matching ACO/Hospital Corporation Uniforms.  The couple forgot to ask a question, they sit and wait to talk to the nurse, the nurse says she can't interrupt the doctor until after office visits are complete.  She will call them later this week.  

Sounds a little bizarre but true.  This describes my last visit to my physician at the big ACO/Hospital owned corporation in Fort Worth.  As I looked around the waiting room I saw people on walkers and others with debility.  They had to drive in and wait.  I saw a man arrive at the counter and he had missed his appointment, it was yesterday.  He was treated rude and I saw him struggle back to his car on his walker, I ran and opened the doors for him and gave him a comforting pat on the shoulder.  The look on is face was defeat and helplessness.  Couldn't they at least squeezed him in with the nurse practitioner.  Would he end up in an ER? 

 I wanted to help him, use my nursing experience, listen to his problems, perhaps someone could email the situation to the nurse who could get answers from the physician.  Oh forgot, I have tried before.  Once just wanted to let him know in response to a letter telling me he was prescribing a new med, I knew their were other alternatives and was changing my diet instead.  No email allowed, not to the doctor, nurse, not to the appointment secretary not to anyone.  We DO NOT accept any incoming patient communication. 



 I tried to call the nurse, received a recording, she called 4 hours later, and said the doctor had left for day.  Would call tomorrow. My time was not important to them and as I looked around that waiting room, these poor sick and elderly, well with the way people were rushed in and out without show of compassion, I wondered.  


Had Accountable Care been developed for the accountants?  What about the patients?  Oh by the way my doctor  informed me by the time my next visit rolled around he would be gone, leaving in a month to practice on his own.  

Last week I read that physicians want to charge $25 dollars an email. Appears Dr. Google will be getting more hits because patients and families are learning to self treat, alternative measures or just skip the visit or taking care of issues that would improve their health.  

Doctors and Nurses are frustrated.  The increased task work, documentation, "quality" and compliance reports have left no time for caring for patients.  Analytics show in the last 3-4 a cliff screaming plummet in nursing wage index.  So Nurses and Doctors are leaving. They humanly can't keep up. 


Corporations no longer treat their employees like family members showing care, company picnics and adequate compensation.  Rather they have become task masters demanding managers drive their crews. Because of the stress, corporate culture, lateral violence, verbal abuse, and back stabbing,  distrust is growing in volumes that now it is becoming a national issue.  

Remember honor and respect the firemen were given after 911.  How it gave a sense of unity to their teams?  How firehouses became groups of family looking out for each other and taking care of their fellow workers? How they know their communities and are located in every neighborhood?

Wouldn't is be nice to bring that to healthcare.  Healthcare is in a crisis, our elders and others are being dismissed.  Someone must speak up and be a voice.  How long can we stand by and keep the code of silence while veterans, elderly and others are dying without care?

So for years I have been studying, analyzing and listening to clinicians and and patients in communities and their homes.  ER's, ICU's, Wards, Nursing and Assisted living homes and a beautiful hospice house too. Inner city and rural has been my research lab.  Listening to the pulse of healthcare from the doctors, nurses, healthcare workers.  Also to family, caregivers and patients in the place they feel safe and open up, their homes.  They have been very verbal about their feelings, experiences and frustrations. The last few years I have taken several massive trips traveling through state after state on my journeys and taking off roads, alternative routes through small towns and stopping frequently in interesting places.  Funny when someone hears you are a hospice nurse almost everyone has a story to share. I listen.  


The system we used to have is crumbling before our eyes.   Perhaps it will take drastic changes and a rallying of communities and neighbors to meet the oncoming challenge.  Your voice and story matter, each one of you.   Communication and connectivity counts but we must also be in touch on a personal basis and call Servitude Leaders to come to the front. Empower and strengthen our system.  

 Suppose we mix old community and neighborhood values, help to educate and sustain families and blend in green living, new technologies and train our youth at a young age to honor and respect the aged.  Suppose we engage the aged to teach gardening and other skills and crafts to our youth and they work on projects together.  It has been said it takes a village to raise a child but suppose not only raise a child but care for our old and for each other.  Would it reinforce pride in community and promote collaboration?  Wisdom and knowledge would be shared with the younger generation and historical stories shared from the people who had seen and lived them.  


Whoever you are a clinician, researcher, part of my town, member of my church,  peer, class mate, or patient, caregiver, politician or randomly catch this post - It starts with you and me my friend.  Befriend your neighbor, do a good dead or something nice for someone without expecting a fee and write your local politicians, physicians and hospital corporations.  You will be amazed at the blessings it brings into your own life.  

                                                           THE PLAN 

There is a group on Linked In that was started by Rob McClenahan, Home Care and Healthcare Advocacy. He often proposes case studies that are true to life examples of what senior and others face and asks for input.  The answers are intelligent and intriguing.  We have discussed anything from Robots for seniors (one of my favorites I may have someday find the archive to and post). 


 Last night I ran across a post that mirrors situations that are happening in numbers.  In the last several years I have had two doctors retire and a couple months ago informed by my physician and friend that although a young doctor would be gone in a couple of months.  Here was my response to his post and a rough description of an idea/plan that might help with the oncoming crisis of healthcare shortage and growing numbers of seniors and others needing care. 


Aunt Bell’s doctor is closing his medicine practice after 50 years… Manager's Choice

Rob McClenahan Social Media Specialist at Right at Home, IncTop Contributor

Hi Group Members, 

You were in a staff meeting at work the other day when you received a text message from Aunt Bell. Dr. Thompson is Aunt Bell’s PCP {primary care physician} for more than 30 years, but Dr. Thompson mentioned to Aunt Bell in her recent annual physical examination that he is closing his medicine practice. 

Dr. Thompson is 79-years-old an entered private medical practice after successful completion of his medical residency 51 years ago, but he mentioned to Aunt Bell he preferred to no longer work several hours a day. 

You called Aunt Bell, your 81-year-old aunt who is a retired librarian, after coming home from work. It was hard to calm her down because she was shaken by Dr. Thompson’s decision to leave his successful medical practice because Aunt Bell always felt comfortable with Dr. Thompson’s medical judgment. 

If, interested, the article below courtesy of “Market Watch” discusses the growing shortage of geriatric doctors. With the rapid growth of the elderly population around-the-globe, a shortage of geriatric doctors and other care professionals, i.e., nurses, social workers, geriatric care managers, case managers, etc., could happen in several countries because citizens in the advanced years of life might have the necessity to reach out for medical care, especially citizens in each country with chronic or multiple medical conditions. 

“How can the healthcare industry better prepare for the shortage of aging care professionals and plan for the growth of the aging population?”

Join our conversation and share thoughts with us on our intriguing discussion topic today. Thank you for your participation on our Home Care and Healthcare Advocacy group on LinkedIn! 

Best,

Rob McClenahan 
Social Media Specialist 
Right at Home 
Group Owner & Manager 
Home Care and Healthcare Advocacy
rmcclenahan@rightathome.net


Camea Kirkpatrick, RN,BSN Educator, Patient Advocate & Consultant, Promoting Positive Innovation via Technology & Social Media

Experienced nurses in the community could solve much of the dilemma. Unfortunately nurse ratios, increased task work and miles covered added to the recent plummet in nursing wages gives little incentive for nurses to enter the field anymore. ANA is covering nurse staffing issues in the hospitals, but communities are where healthcare is moving and we need to recruit, mentor and enable nurses to work without being driven by such tight metrics and demands. Achieving quality when you're running so fast you cant take a minute if a patient has a more extensive problem is an issue. We have the ability to communicate via telemed and telemonitoring. I tested some of these at Stanford MedX last year there are many cost efficient easy to use non-invasive models that allow comprehensive monitoring from a distance. I also see geriatric and palliative research being done but somehow it never gets put into play in the 'field' usually due to budget controls. Let's bring pt. centered care. 

A trend I am noting is speedy innovation but the ACO's and Mega home health and hospice companies rather than embracing are running leaner and forgoing innovation, cutting staff and leaving patients at greater risk. This is a true concern. The situation is almost at a level of being out of hand in some cases.. Sometimes 2 debilitated geriatric patients are struggling to care for each other at home with no support. 

I have been discussing with Regina Holiday, National Healthcare Advocate that we are nearing a crisis and must encourage communities and neighborhoods to rally, care for each other. I envision a community house where nurse practitioner sees patients and if there is a case of concern calls a physician or send the patient to a hospital. In these community houses perhaps there are four or five beds in case someone needs palliative or overnight care after surgery. 



These small houses or centers should be place where community gather and support, perhaps a community garden and a telemed center staffed with a triage nurse to man the monitors for those on home health, palliative or hospice care. The nurse can face time with the patient and because she works with a team member she can send the other RN to check on the situation. 


Instead of working 60 hour on call weekends alone these nurse work in teams staffed like the firemen crew and perhaps the community pays for the service like they do the firemen and suppose the community center and care house is a safe place for people to go 24/7. It is supported by the benevolence of local faith based groups, community organizations and perhaps has a thrift or bakery and coffee shop to help bring income. 

Wouldn't it be nice for nurses to have teamwork, support, and community pride rather than the wave of lateral abuse that is causing great concern and even trickling down to patient abuse. Organizations must provide care for the caregivers. The nice thing is the physician can check monitors, face time the nurses or patients from anywhere at any time via his device. . 

Reimbursement?. That remains the crux. The entire healthcare reimbursement system, staffing issues, corporate and workplace culture and values need to be revamped. 

The community centers should also be places where children can play outside, a community garden, a large kitchen and perhaps a coffee shop area. If every neighborhood or rural community had a place where neighbors cared for neighbors and nurses and physicians get paid for their services, where communities could take care of the young and old alike.  Education and technique for healthy living, activities scheduled, and yes a domino and card table. It would provide amazing mutual benefits for our youth to learn from our wise elders.  

Caring for beloved elderly neighbors, and father, often when they thought they needed to go the doctor, many times attention and engagement from a neighbor, daughter, son or friend took care of the problem. Community/neighbors- Dreaming big-praying for America. Thinking pt centered and aging in place. 

Thankyou!  Rob & team
Camea
@kamiyamay (twitter)

 Here is a link to the original article posted in Market Watch:

http://blogs.marketwatch.com/encore/2013/06/27/shortage-of-elder-care-doctors-worsens/

Any input or ideas please feel free to comment.  Working together, embracing new ideas while retaining the core values our country was based on.  

Addendum:  these centers would also be used as center of command during emergencies such as flood, tornados or other disasters.  They would work closely with Firemen, EMS and Police.  Lacing healthcare, community, neighbors in a network of support.  Perhaps law enforcement could work in defense of it's citizens helping align services when needed and take a less offense approach to fining the policing.  Police officers once again become friends to the community and mentors to our kids. 


Embracing HOPE! 
 
Camea Kirkpatrick, RN,BSN 
Healthcare Advocate, Consultant and Servant of Humanity
Twitter:  @Kamiyamay  @GoldenwavesAdv











 
 
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Camea: Texas Trails of Care - Riding Golden Waves to next patient.

This week much has gone on.  Weddings, birthdays, graduations, Nurses week and Mothers Day too.  My Grandpa is on Hospice so this last couple of weeks I am a family member.  At the same time I have been studying a course on Nursing Leadership and Management online and wondering why I bother to do it again this year.  Is it worth it I ask?  Then Facebook pop-ups and Dr. Brian Stork’s tweet with high school student poems humbled me for even asking myself the question.

 I started nursing people when I was 14 as a caregiver in a private home where there were elderly and bedridden and have been doing it in some form or fashion every since.  Well over 30 years. 

 Some say it is my gift, others tell me it is my calling and perhaps they are right.  You see I love people and treat them with the kindness I would want if it were my family.  Some say you will burn out by caring…to this I disagree.  Caring has given the journey much joy, passion, beauty, excitement and caused me to shed a few tears. Just when I think of hanging it up, well someone like you sharing your words makes it all worthwhile. 

So if you ever thought of serving others or being in healthcare go for it! Perhaps you will not get paid like the CEO but paychecks of the heart bring everlasting smiles.  And guys, I remember a poster that used to hang in one of the colleges I attended.  It had a picture of various outstanding looking men.  It asked one simple question, ‘Are you man enough to be a nurse?’ 

I have been a crisis hospice nurse on the weekends and through the long dark nights, riding the roads to towns, communities, hospitals, ranches and homes.  Words both of my patients, their families, friends, caregivers and others in gratitude after helping at such a difficult time has touched me and pressed me forward.  Words matter.   I never knew how much until the term ‘life is full circle’ became a reality.  Respect, words and actions sent out with the tide came back rolling in on the waves.

One Friday evening I came on duty at five, thunderstorms were crashing through the area.  I live in Texas Tornado Alley and dance with the storms year after year driving like a tornado chaser around the hills and towns.  I dashed into a convenience store for cold water on the way to meet a family at the hospital ICU.  My scrubs and tennis shoes were drenched.  When I got to the register the cashier slammed and locked the drawer and came dashing around the counter. 

I looked around perhaps there was a fire.  Suddenly arms were about my neck and she had my face between here hands and started to sob, thank you, thank you, you were the one.  The men behind me waiting to buy beer looked a little freaked.  I was too, ha.  Then she reminded me that I had come to a home at 3am and faced a group of 6 upset sisters, multiple grand daughters, aunts and more.  I stayed until grandma was comfortable and called the chaplain at 4am.  He came and sang hymns to grandma and helped bring peace.  I did not realize what I did mattered or anyone noticed. You see the words to the poems are true. 

Another time I was racing through the halls of a nursing home.  The family was upset and the patient uncomfortable and the nurses stressed.  A young man raced after me and said I need to tell you something when you have a minute.  When the crisis was calmed and I was busy writing at the desk he slipped near and said, “you make a difference.” What was he talking about? 

He shared that he was in nursing school and had made the decision because of moments shared with him and his family.  I couldn’t place the name or face.  He started to explain then I remembered.  It had been 4am when I received the call and the roads were covered with ice and snow.  When I arrived over 100 people were in a little one-room home. I treated them with respect and waited with them after my shift was over to make sure their wishes were met.  Respect and kind words mattered. 

I have received letters, notes and cards and know of at least two people that went to school.  I have had a group of tattooed ex-convicts rush me at the grocery store to say hi, give hugs and say thank you.  In the post office, Department of public safety, in church, or going out to eat the scene has repeated itself.  I have even been called to serve people who bullied or bossed me before and dismayed them with kindness and respect.  



Mothers Day a few years ago got a call after working all night.  Come to ICU.  I cried in the shower thinking this can't be true.  A nurse I had loved as a neighbor and had cared for my parents.  I called her family who were at the time over 1000 miles away.  "We are so glad it it YOU"  Humility and gratitude to be of service replaced the sorrow.  Love and kinds words go a thousand miles. 

My theory each person counts, big house or small.  In a hospital the people that clean the floors are important too, can you imagine a hospital without them, or a nurse working without doctors, aids, technicians and crew?

What matters is being mindful, showing gratitude and being willing to go the extra mile.  Nursing is a team sport!

A Happy Nurses Week Thank you to all of you! Your words matter and so do you!

Addendum:   Spring Lake High School student’s words touched me and I shared them with nurse friends coast to coast.  The first wave has already come back to you riding on the Golden Waves of love~

http://www.drbrianstork.com/blog/nurses-week-2014-student-poems/

 
 
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Photo taken from Twitter feed by Vianney Riller Jr @jrvianney "upside down Blue"
Life at any angle –Trust and transparency!!

This year in #HCLDR there has been conversations and chats that have led to discussion about transparency and reporting errors.  It reminds me of a lesson I learned from my dad.  If you can bear with the ramblin history of our life in flight the story at the bottom makes the point.  Life is doable at any angle as long as clinicians can trust their corporations and corporations empower and trust their clinicians.  

Some of my medical friends sincerely must wonder at my posting of cool airplane pictures.  


I grew up the daughter of a barnstorming stunt pilot, and spent more time on airports than I did anyplace else, running among the planes and hangers trying to stay off the taxi way’s and along with a mischievous brother tried to behave. 

Dad worked at Denver Stapleton for a while, in fact always had jobs in Aeronautics.  Flying for him was enjoyable.  We went to airshows, I watched him do stunt shows, we attended fly-in breakfasts.  I also visited control towers in massive airports in Denver/Dallas, visited National Weather service where there was so much live data ticking.  It was truly awesome and the guys didn't mind teaching a tagging kid a thing or two  about the weather or plotting and planning flight plans.

 Frakes Aviation  moved us from Colorado to Texas where dad worked for a multitude of years.  They had two huge hangers where jets were flown in and then stripped and renovated.  They also worked on Mallard's, Ag-cat's and many others.  He also taught at Meachum International airport in Fort Worth, also had something do with FAA (boring when he drug me along ) and also taught for a few years at Dallas Aerotec.  

 He could hardly take us on a flight at some point we had to break into a stunt routine.  I hated the hammer heads and would squeal in fear as we went racing for the ground, he would pull out last minute with a wicked laugh, my mom would scold but he was determined I would overcome my fear.  His hair was dark and somehow I imagined that he was a stunt double for the Red-baron.  
The wingovers (spinning the plane over and over while flying in a straight line) and flying upside down did not bother me but the inside loops and then the outside loops freaked me out, I wondered if the little plane had what it took to pull us out.  

 The last plane he owned he was quite thrilled with although I thought the vintage Tripacer plane with curved wings was hideous. Then one day I leaned back on the side expecting the cool firm feeling of aluminum but rather it gave in with my weight causing me to jump. I crawled in and pulled the back seats forward and crawled into the fuselage for an inspection.  We were flying in a metal frame covered with cloth, oh NO!.
PicturePhoto credit www.popularaviation.com Piper tripacer
On one of the last family flights I went on we had moved to Texas and were about to take a long trip.  Us kids had grown and we weighed every piece luggage and thinned down and were two pounds near the allowed weight.  It was summer and the plane in the hot air had less power + the weight, I held my breath, would we clear the power lines at the end of the runway.  They had been the demise of more than one plane.  We made it and slowly we climbed, flying as high as possible to avoid turbulence but the air still bumpy.  My mom administered me a Dramamine to prevent air nausea and groggy I fell to sleep.  

Dad only landed for fuel and the stops were quite efficient. Four people literally fell out of the tight plane and I tagged silently and still half asleep behind my mom to the airport lounge and quickly returned and packed back in, the tanks full and ready again.  Off we zoomed and up and up we climbed the fields looked like tiny checkerboards, and the cars looked like specks

I thought of the crazy movie that had come out recently, a midair collision with a small plane and jet, people sucked out into the atmosphere to meet their final fate.  I hoped we were not in any jet space, at times we had come close.  Then as I leaned my head to nod off again I heard a distinct noise that gave me a strange uneasy feeling.  It continued and I looked to see if others noticed, no one obviously heard but the thumping and flopping sound outside my door and sort of behind my seat would not quit.  I looked down and froze.  My seatbelt was unfastened and the right piece with a large metal buckle was not to be found.  The strap led to the door and I knew instantly the long belt was what I heard.   

Truth or consequences or both:  

The plane was cloth and the belt sharp metal, we were running at top speed and I knew what must be happening as the metal beat against the plane.  My dad had a fierce temper and didn’t tolerate error.  I could tell my dad, get the whooping of a lifetime and I knew what he would make me do. 

On the other hand I could remain quiet hoping it did not do enough damage to take us down or create problems.  I looked at my family.  I was only 12.  Truth or consequences, I was in trouble either way but to injure or potentially endanger others because of my error was not something I could live with although I knew what he would make me do.

With tears in my eyes I tapped on his shoulder and indicated to him the problem.  The order came as expected.  Open that door now and reach out there and get that belt.  Now stunt flying was fine even in an open wing plane as long as you wore your belt no worries.  It was your security.  But to reach way out and grab the flapping belt without any type of tie or connection was dangerous.  To make things worse the images of those people on that movie being sucked from the plane kept flashing in my mind.  

I was dead for sure but for my family I would, and he commanded with a yell and shout, open the door then grab my hand and with the other you reach out and get that thing in NOW.  With tears I did as he said.  He leaned back and held out his hand and I squeezed hold, I had to struggle propping the door with my foot and keeping it far enough open to reach out and grapple and finally wrangled the strap and buckle, and with tears let the door slam and sat and cried with relief, while my goofy brother laughed.  

When we landed next my dad duct taped the strips of cloth together and made the huge hole flyable till we got home.  I waited for one of his frightening strappings that usually left bruises for days.  Instead I guess he felt I had suffered enough but the lesson was not complete.  I learned how to patch a fabric plane, apply fiberglass and then paint.  And forever when I saw that plane the scar was still slightly visible and left an indelible image and taught me a lesson I will never forget.  Safety at all cost!

Many times over the last year in healthcare chats the issue of transparency, openly reporting errors and more have been discussed.  Had I not trusted my dad I would not have told.  If I had not been honest and disclosed the mistake how much further harm would have been done.  

As a healthcare practitioner can you really sleep at night or feel like you are providing care for your patients if cover up.  It has grieved me that a wave of  non-reporting and don’t tell have become the norm but to tell is to risk license or job and the repercussions so severe, much of healthcare has chosen to remain silent out of fear.   

But it all goes back to trust. Corporations need a net of safety and trust to allow errors to be reported.  How can improvements be made if they are covered.  I also note some managers that made incidents reports disappear for better standing and more points to earn bonus.  

You have to be willing to risk and hopefully your corporation is understanding enough to know that humans do make mistake especially under the stress and rush.  Their responsibility should not end with the report but like my dad followed up with some education that would be preventative in nature to keep from repeating the same mistake.  He did not humiliate me and said few words but simply informed me my work would be to repair the damage.  Hmmm there could be a lesson there.  

Yes life can be done at any angle.  If the Blue Angels and other teams can trust each other to fly at sonic speed upside down inches from each others wing, I ask why in Healthcare can’t we be a cohesive team?


 
 
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Photo credit: Camea 'Tx Trails of Care'

               Healthcare literacy and awareness education
                for healthcare practitioners too?



This weekend on my Facebook I put a message of strength and courage for my Sons as they went to their Father, who had an MI.  I closed the post and was busy for over 24 hours.  When I rechecked it I realized my error.  

A close friend, who teaches special/deaf education to children and has degrees and education that far surpass mine, reminded me she was a lowly teacher and asked what was an MI.   Another close friend who is a nurse saw the comment and replied:  Heart Attack.  Well at least my friends are friends now. 

I thought of the times I had stood as a patient myself or as an RN doing an evaluation or admission in a hospital and heard a doctor, nurse or other medical practitioner answer or use medical terms that were not understood and seen patients and family left frustrated and confused.  

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

                                   Once I learned a lesson that struck my heart.

I had come on duty as Crisis RN for weekend and received first call one minute later.  Please come now, we need help right away!!! Most patients I never meet until there is a crisis after hours or weekends and their usual team is replaced by on call RN.  I often tell people things can change on a dime when a patient is nearing end of life and such was the case.  I drove as fast as I could pushing the  limits of the posted speed to reach the patient who resided in a rural location over forty miles from the office.

I remember with crystal clearness how peaceful and vibrant the scene appeared while walking some distance to the front door.   Recent rains made acres of mowed bright green grass look almost surreal.  The old  house, surrounded by massive oak trees, reflected historic grandeur but the most striking thing was the unbroken silence of the cool country air except for the sound of single birdcalls as they answered each other from tree to tree and echoed through the meadow.  Rural nursing what a gift! How could anything be out of order here?

When I entered the home it was warm, inviting and every item of meaning carefully placed reflected years of history and said much about the owner of this lovely place.  The windows were open with the cool air floating through, carrying the songs of the birds to those inside. Quiet whispers or soft tones were used while communicating out of respect.

The caregiver was a close relative a young man who had taken leave and left his uptown urban fast paced life to attend and do nursing care.  For sometime he had been alone providing care. He had been coping and doing an excellent job but pain increased, delirium suddenly arrived and the caregiver had self-medicated with a drink or two….

All criteria indicated a bedside nurse to handle the crisis was appropriate.  When the nurse arrived I gave a brief report and  asked the orders to be read back to make sure no error or misunderstanding.    T.I.D. had been an abbreviation in medical field for ages meaning three times a day.  The nurse read the order and said T.I.D. 

The caregiver came rushing out from the room where the patient lay.  Our quiet tones had been heard through the silent air. He abruptly whispered in angry emotional tones, “He can hear you and we both know what that means, don’t ever do that again.” 

Since help had arrived he had helped himself to a couple more drinks and was tearful, distraught and judgement a little slurred.  I looked up in question asked if he preferred we say three times a day.  Then the caregiver looked bewildered,  “What you said I know is an abbreviation for Time of Death.  He knows too.”  

Instantly the implication and pain this caregiver felt because of misunderstanding our medical jargon taught me a deep and lasting lesson.  Medical terms, abbreviations, and nothing but clear concise terms in lay language should be used when providing care, especially under such stressful conditions.  We were guests providing a service in the patient’s home.  

I took the distraught caregiver outside away from the house.  Slowly and carefully I explained and apologized and comforted him.  Then sat quietly as he talked and finally let the tears of the last few weeks flow.  He was losing someone he loved, had left his own life behind, felt so alone, and overwhelmed.  As we walked back to the house he expressed his gratitude and all went well.  

One little misunderstood medical abbreviation, how easy it is to do. I vowed that day not to use abbreviations even between nurses and never use medical terms that could not be understood.  

                
     Self-assessment  

·      Do I talk about patient’s condition in medical jargon?

·      Do I assess the level of understanding, language and cultural expectations?

·      Do I explain everything I do while in their hospital room or house?

·      Do I exhibit patience if they don’t understand?

·      Do I use drawing, diagrams, pamphlets, or video’s to increase                               understanding?.

·      Do I ask them to repeat back what I taught or explained?

·      If possible do I wait till the caregiver is present also?

·      Do I speak in clear unrushed audible calm tones? 

·      Do I look at the patients face, make eye contact when I am speaking?

·      Do I truly understand the impact on patient experience I have and that                outcomes,satisfaction, quality and patient safety are only some of the things        affected. 

·      If I see another doctor, nurse or anyone treating the person with disrespect           or belittling their lack of understanding, am I willing to advocate for the                 patient.


        A good read:  Impact of communication in Healthcare
        http://healthcarecomm.org/about-us/impact-of-communication-in-                         healthcare/ 

  "Extensive research has shown that no matter how knowledgeable a clinician might be, if he or she is not able to open good communication with the patient, he or she may be of no help.”      Asnani 

Healthcare is best when we realize our jobs, our occupation is ultimately to serve, treat and communicate with our patients as part of the team in a way they can understand.  This empowers them to make better choices and take responsibility if we let them.  


Addendum:   TOD is what the caregiver thought he had heard.  It is an official term meaning Transfer on Death Registration and has to do with ones securities and probate.   See Web reference below.  
https://www.sec.gov/answers/todreg.htm

 
 
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Lake Oachita, Arkansas Photo Credit: State Park
The last several months my life turned upside down due to factors beyond control.  In a million years could not duplicate all the things that came streaming together but I can now smile as I write.  Life brings unexpected waves both good and destruction, survival means learning to roll with the flow.  What does not kill you makes you stronger.

 Then two weeks ago I lost an adopted Grandmother on hospice and at this very moment my Grandpa is drawing near his journey's end to join her.   It is amazing how priorities change and how resilient and resourceful an individual can be.  I have always done life 90 to nothing.  Now circumstance leads to reflection and time.  I am reminded of a couple of stories that even when busy reminded me the importance of pause, refection and gratitude.  


                          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Several years ago my oldest was attended boarding high school the Beautiful Ozark Mountains.  The decision to allow him to go there was more heart rending then he will ever know.  At the age of 15 year old he left home to work during the summer at a camp on beautiful Lake Ouachita and attend the school had a work/study program that I wish more academic institutions had.  He flourished and became a leader.  

His senior year had begun and seemed to be flying by.  He was talking of colleges and his plans of pursing a degree. The seniors were sponsored to take trips to some colleges and he was considering attending a college that was significantly further from home.

 I was attending University of Texas in Arlington, UTA, and wanted to expose him to the amazing science halls and campus hoping he would be attracted and want to live closer to home.  We talked and came to an agreement.  Next home leave he would attend UTA as a student for a day and after he weighed carefully his choices I would support his decision to attend the school of his choice. 



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PHOTO CREDIT: UTA.EDU
The day arrived.  At 8am thousands of students approached campus, backing up traffic for a mile or two in all directions.  From the massive parking lots streams of people flowed all headed for a single bridge that crossed Trading House Creek to the campus. 

My challenge each morning was crossing the bridge safely without getting pushed shoved or causing traffic problems. Picture same mass students just traveling faster across bridge in same amount of time.   Most of the students were more my son’s age. The rolling Jansen Back pack with super heavy-duty wheels I ended up toting miles was not popular on the bridge but for all the walk/running I did between different sides of the campus for classes it truly paid off.

My laid back, open-minded son is not shy and doesn’t bother to worry about what anyone thinks.  He’s tall, good-looking, loves edge sports, friends easily and incredibly smart.  Gifted with math, tech, piano and anything on wheels.  He offered to pull my pack and hung out like a champ, taking notes and searching the library during lectures from my laptop. It was a fun and memorable experience.

 During a break we were in the library and I gave him the keys to car and told him to go explore the campus and area while I finished paper and headed to chemistry lab.


When we met at our agreed spot and time before heading home.  He shared his thoughts about the enormity, the rush, the thousands of students.  Then he asked me something.  Mom have you ever noticed the turtles?

I had no idea what he was talking about.  Turtles?  Enrolled in 16 academic hours studying molecules, working on an IT project, a redesign on the entire communications system for a local city with a student group, writing out long hand all the steps in statistical equations that took pages and competing to maintain the highest grades to stay be honor student.   Oh and the commute one hour or more each way 5 days a week and working weekends as RN nursing supervisor.  Oh also speaking at functions, and on a City Business Development board.  Turtles, seriously?

Mom I’ll show you in a minute.  As we finished the day the walk to the car was still rapid but not quite as intense.  The bridge back to the parking lot was always busy and the evening rush of students had started to arrive.  As we climbed the steps I started to rush.  Mom stop!!!  He stood in the middle of the bridge and pulled me to the side.  As if imaginary rules this was the incoming side from the parking lot and we were blocking the lane. Mom Look!  

As I looked I was so surprised.  In the flowing creak was beautiful long green moss waving in the current and at least 15 massive turtles and a couple even perched sunning themselves blending in nicely with the rocks.  I was so busy being I had missed the amazing ecosystem that had seen many a freshman come and grad leave.   They were right below my feet.  I stared, rather stunned. 

Something else interesting happened.  As we stopped and looked it created curiosity and several people paused. Surprised expressions of delight indicated I was not the only one who hadn’t noticed.  

Then there was another response.  A major group of people who walked eyes straight ahead rushing to their destination and a few who gave annoyed sighs.  This group did not see the turtles at all.  They were too busy and important to see any significance in the creek.


I believe every day opportunities for to learn are provided if we but grasp them.  I tell my son's nothing in the world is 'all bad' unless you did not learn from the experience.  That day I had set out to impress my son and teach him some new things and as I went to bed that night I realized that the one who had learned a profound lesson was me.  


1.  Do I TTTSTT's in life? (Take Time To See The Turtles) 
Do I see the springs flowers on the roadside as I speed by? Do I see the quiet person standing over in the hallway all alone and attempt to be a friend? Do I remember to pet the cat as I rush out on the porch in the morning or just dump food in her bowl?  

2.  Then I applied it to the work I was doing as a RN supervisor in a nursing facility.  Did I take patience with those who were slow to
understand?  Did I stop in and offer a smile and check on the patient down at the end of hall D or leave it to their nurse?  Did I offer an extra pat of encouragement to the disabled woman my age who's children and family never came, while she watched others with their families on Sunday and Holidays? 

3.  Then I applied it to my community. Was I an active part of the community, walking the streets with my dog for exercise, visiting with my neighbors.  Did I show up at the ball games summer evenings where most of the town gathered although my son's had past that stage in life?  Did i offer to serve on communities, boards, organizations and help in crisis or simply criticise those who were working hard on our behalf?  Was I a good neighbor, someone who gave to the community or a taker?  Did I notice the lady walking home with three bags of groceries a mile from her house?  Did I offer rides? (yes).
 

My honest self evaluation done many days left me feeling a little shameful.  I had an average home and lived comfortably, but does the poor family down the street have food? are their children clothed for the weather?

My life has changed much since the day I saw the turtles.  Yes I learned to just stop and look, and not worry about disrupting traffic.  As I read about the creek and looked for pictures of the old bridge that funnelled us over to the campus I saw there had been plans to reroute the creek and make it more aesthetically pleasing but assured it would not disturb the fragile eco-nature of the plant life that resided there.  Sadly I read nothing about the turtles but thought surely they were included in the preservation project.  

Now my vision has opened much and while driving long miles doing hospice I had my phone on and saw beauty in what others would disregard.  In closing leaving you with one of
my snaps.  Even crooked wind blown trees seem to speak......
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PHOTO CREDIT: Camea, Tx Trails of Care
 
 
The end of 2013 is here.  There will be many Best of ‘s… Worst of ‘s… and so on.  Instead of making a list I am trying to keep a commitment made to myself to write over the Holidays. Well it is not New Year’s yet so in an attempt I decided to revive the many over, underwritten, needs editing stories and posts already written. 

In searching I found a few posts not made on my site but others.  Occasionally when reading I become passionate about replying.  I just found an interesting reply made in Sept. 2012.  Paul Sonnier founder of the group Digital Health on Linked-In  posted the article The Internet? We Built That | NY Times myaccount.nytimes.com - Big Government and Big Capital, meet Big Peer Network.  I read the string of comments after the article and the string that Paul started and although it was one AM I felt enthusiastic about replying. 

I forget about it until seeking a different piece in my files but feel it is as appropriate now as at the time I replied.  Side note:  interesting the “woman” I was referring to was Regina Holliday of the #Walking Gallery and I had no idea we would become friends or I would be part of the gallery and a healthcare advocate.  Here is a copy of my reply and a link to the LinkedIn conversation.

Camea K.
RN, BSN Educator, Patient Advocate, Promoting Positive Innovation via Technology & Social Media

“Interesting article and comments are intense. Exact beginnings and funding-gentlemen at this point is...history. Where we are headed seems to be the real issue at stake. A quick look at Symbolic Convergence Theory explains the ability within seconds for a flash mob to appear and vanish. This weekend e
-patients met in Kansas City for in amazing collaborative organized by one woman through crowdsourcing. Is this major shift in power from government, academia and corporate to individuals a good or bad thing?  By the people for the people? Is technology advancing faster than those with wisdom to guide accordingly? Government is also collaborating. Sat at NASA last week and listened to amazing positive solutions from top communicators from all Departments of Government. Key word: Positive.



Speaking for me: time to embrace rather than refrain. Those of us who can still remember the amazing moment and emotions when our teachers gathered us around a little television to watch Apollo perhaps should tweet to the peeps this is truly an amazing time to be alive. I challenge leaders to impress due reverence and awe of human imagination, intelligence and technology. Let us teach technology driven simply by emotion or for want of power can wield apocalyptic results. Let us remember that humans are not just digitally assigned components but beings with hearts and souls with the ability and need for dignity, respect and compassion. Let us model how to think, and then pause...before action. Finally let us challenge servitude leadership that reaches out to others to solve the disparities in medicine, hunger, strife and shame across the globe lest our worst fears become reality. 

Let me close with yet another vivid flashback. Does anyone remember the power commercial from years ago with one switch? Night gentlemen, it seems rather dark in here! Paul thank you for hosting such a compelling topic and to each for your comments!                                                                                                     

 
 
 
 
engagement
Are you engaged?
Last night I caught the tail end the #HCSM Healthcare Social Media Chat hosted by @danamlewis on twitter.  Comments on patient involvement, engagement and some thoughts on patient portals were streaming down my computer screen some with shared links to supporting articles and data. 

As a nurse who spent last few years working in peoples homes and personal space during very intimate times I have heard and seen what patients and their families think about everything, including their physicians, hospital experiences or other healthcare interactions preceding arriving where they are now, on hospice.  With the frequency and amount of time they have spent in these settings they have plenty to say and I listen and learn.  Coupled with the learning on twitter and the social media spheres the learning experience has been like a massive ongoing research and innovation project.

Another thing I note as I visit hospitals, facilities and homes is how much time, what tools, and usually ask which social platforms they are using and to share anything great they learn with me.  My patients have taught me multitudes.  In my humble opinion clinicians who fail to engage or listen to patients are simply putting limitations on their own personal and professional growth.  Unfortunately this too is something I witness on a daily basis.  

1.     Patients ARE engaged.  Nearly everyone is engaged in Social Media including the elderly, poverty stricken, and those in rural outreaches.  After all it’s social. 

2.     Patients and their families DO want to be included in healthcare discussions

3.     The biggest all time complaint is poor communication and causes intense anger, resentment, distrust, disappointment and fear.  I could write a thousand blogs and tell even more stories on this topic.  Here a few of the frequent flyers:

a.     He didn’t tell me…

b.     I couldn’t get anyone to explain

c.      She came in and said a few words so fast then flew out I have no clue what was said

d.     I didn’t understand

e.     The words they used vague none of us knew afterwards what they were trying to say.  We didn’t know any more than we did before they spoke other than perhaps they don’t know what they are doing or what is going on

f.      I wonder why he didn’t tell me what my tests had shown.  I have trusted him for years.  I thought he cared.

g.     Why didn’t they tell us we had options and what my tests showed before my mom/dad went through those surgeries, treatments etc.  This makes me so angry with him.

h.     They wouldn’t listen

i.       I call but either get no answer or put through so many phone loops to leave a message.  If they do respond it takes 2+ days.

j.       There were so many doctors and each one told me something different.  What they said often contradicted what another physician said. 

k.     The doctor was rude and obviously too rushed to treat my mom with respect and take 5 minutes to listen to her.  She knows what is going on just a little slower explaining.  He just talked to me like she wasn’t even there.   

l.       Do you know what our tests/x-rays/studies showed?  We were told negative or positive, told we would get results in mail and didn’t arrive.  Can you tell us what they say?

m.   We weren’t told the truth

n.     We think they were trying to hide something.  They acted uneasy and strange when we asked questions and often could tell they were avoiding us.

o.     It made us angry when we found out they knew months ago

p.     Why wouldn’t they give us a copy of the results?

                           There are more but you get the point.

The end result of the communication gap and unshared information is causing waves of dissatisfaction and a plunging level of trust of healthcare systems, physicians, and clinicians.  It is causing a growing wave of resentment that is driving patients in droves to engage.  They are engaging research engines, social media sights, their friends, neighbors and church members.  They will listen to what is said then as soon as a doctor is out of the room they are on the web, texting friends, who have friends to see if what he said is valid.  They are seeking out information about their own care, often out of necessity and learning more about what their rights are. 

They are forming groups and share information and support.  Yes they are engaged, not with healthcare entities but with the world.

As patients seek more active roles and have a louder voice we will continue to see changes.  I can think of several patients that have embraced the power of social media and made and are continuing to make huge impacts in the health arena.  I think we will continue to see them assuming more active roles and seek advancement for patient causes.  Their stories and experience serve much as an expert witness statement.

Tech and Social Media has created a massive disruption in healthcare, as we knew it.   Patients are definitely a part of this grand display of disruption.  So my word to healthcare providers, get engaged or left behind only to find patients are the ones leaving you out of the communication loop. 

 Advocating open communication to help patients and clinicians to work together as a team.  

 
 
Just as the dawn was kissing the day the angels flew away!

Some years ago, the phone rang at 0347AM.  With a sigh she answered and spoke with the triage RN.  She knew the drill, having done this for years before.  She had vowed never to return to working weekends and nights.  An odd set of circumstances had led her to the one job she knew so well but wanted to avoid.  Her children complained they shared their mom with the world but she heard comments here and there of their pride.  She prayed to be an example of hard work, integrity, doing what is right, loving humanity and facing challenges with dignity.  Many told her it was her gift…sometimes she wished there was a return policy. 

She took the information, slid into the uniform set out along with shoes, socks, and lab coat ready with pens in pocket, grabbed the cup of rewarmed coffee from the microwave and called. Often she gave instructions on meds, reassurance and what to do until she arrived.  Tonight the call was one she had made many times, condolences and quietly, “I am on way, no you don’t need to do anything except love each other until I arrive, I will handle everything.  Are you ok? Is someone there with you? Would you like me to call your minister or our chaplain?”  After listening and hearing the voice on the other end calm from the reassurance she added, “It will take a little while I am 39 miles away but I race like the wind and am on the way!”

The final miles found her car ascending a rode on one of the many remote hills of a charming historical town. The houses began to thin as she spotted her destination. She knew without a doubt this the right place.  Every single window of the cozy little ranch house was lit with flickering candles.  The porch light blazed like a beacon inviting her to come visit. 

She smiled as she made her way up the path.  Through the open windows came the beautiful sound of Texas Fiddles and Steel Guitars in Gospel Western Swing riding on the gentle breezes of the clear cool night air. Those who were raised in the area knew this was the heart and soul of Texas music intertwining with everyday life, timeless and magical. Deep fragrant waves of sweet honeysuckle filled the entire house with a fitting aroma to match the  music. 

A polite gentleman greeted her and led her through a warm, lowly lit living area where three or four men were talking in quiet tones,  “Come this way, the girls are back here.”  When they arrived at the door, he slipped quietly back down the hall as she knocked.  Softly the door opened and to her surprise a young girl of 5-6 years of age, clothed in a beautiful dress, ribbons in her hair, welcomed her in with a sweet smile and calm demeanor.  Without so much as a thought the girl then slipped back into bed with her great grandma and placed one arm around her neck and the other she cupped on great-grandma’s hand. The girl's mom lay on the other side of the beautifully adorned elderly woman.  The patient’s daughters, sister and others sat smiling and visiting in the room.

The young girl spoke first.  Her voice did not falter or show any sign of remorse.  As she held Great Grandma’s hand she looked directly into the nurse’s eyes, “You missed it, angels were just here and took grandma’s hand in theirs.  She flew away with them.”  The nurse looked around the room, smiles of comfort, peace, acceptance and gratitude beamed from each face.  She listened as they told her about the ‘girlfriend’ party and how four generations of women from the family had gathered, cared, sang, shared pictures and music as grandma made the final peaceful departure on the wings of angels.

As a nurse she made the necessary calls, followed protocols and offered condolences to the gents in the other room. She dispensed of the necessaries quickly and went back to wait for the funeral directors with the women.  They shared their gratitude at being allowed these last few months with Grandma at home.  She had been able to receive with dignity friends from the community, church, and surrounding area.  The experience had been perfect according to the daughter. 

As the fiddle music continued in the back ground the faded pictures told stories from days gone, the nurse could not disagree that her patient’s final days had been well spent.  Once the funeral directors had come and gone she said her final good byes with hugs and a special kiss on the cheek for the beautiful young princess.  Her heart overflowed with gratitude, praise and wonder.  The call seemed more for her benefit then theirs.  It was an affirmation that advocacy must continue on behalf of those who choose Palliative care instead of aggressive care and for providing services to citizens in the place they called home.

 As she was leaving, the scenery was so vivid and beautiful, her senses so alive, she pulled over to study the scene and scribble the words to enter in her journal at home.  Yes she had received a gift.  With it came pain, stress, loneliness, challenge and even radical danger at times.  It also gave her the gift of affirmation, meeting people from all walks of life, and being a living, breathing part of healthcare in people’s homes.  She was humbled by helping final wishes come true.  Today she would keep the special gift some said she had and post-pone researching the return policy

Here is what she wrote:

Dreaming of sleep she turned from another final visit just as the dawn was kissing the day. From the hilltop she viewed the dew hanging in the valley and the twinkle of the lights sprinkled among the hills and historic town. Rose mist clouds contrasted with vivid green pastures. The rising sun shimmered on the Paluxy & Brazos Rivers as the car instinctively headed home. She smiled; yes a very good day!



PLEASE CLOSE YOUR EYES AND LISTEN A MOMENT  PICTURING THE ABOVE WITH AN OPEN MIND…

Below - George Park Jr…..Originally recorded by Bob Wills:



 
 
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This image found on Calum Cashley's 2008 blog seems appropriate for the following post.

The room was spinning and my heart was racing and I felt so bizarre. When I stood  it felt like the anchor from the ‘Titanic’ was pulling me to the floor. I had agreed to switch shifts in order to attend an out of town conference and to call in on an agreed trade was unthinkable.  Two more times I tried to rise and was unsuccessful.  I was in trouble!

My son raced me to an outlying urban hospital.  The triage RN took me back had no expression, made no eye contact, and had to ask three times, why I was there.  He took my blood pressure and when I asked, said it was 70/32.  He hooked me to a portable monitor, pulled the curtain in the makeshift area in the back of the ER and left telling me he would be back….    He never came back!   

He didn’t know I am a nurse and knew that patients near death had blood pressure and pulse in this range   I lay there hidden by the curtain watching the monitor.  About 3-5 times a minute PVC’s (ominous heart arrhythmia) scrolled by on the little screen.  A new term for 'critical thinking' emerged in my head. 

When it dawned on me he wasn’t coming back, (my son remained out in the lobby) I thought, well sweet,  here I am on this cot with imminent vital signs.  I much rather be at home in my own bed. Gathering strength and hanging on to curtains and equipment while the room was spinning, I located some nurses who were sharing party ideas nearby.  “Where did you come from? He didn’t say anything about a patient back here, it was the end of his shift, guess he was tired....” 

What followed was a series of demoralizing, frightening, frustrating events that left me dumbfounded, feeling powerless and fearful.  They are too numerous to discuss in detail but some deserve a written acknowledgement.

The ER physician upon finding out I was a hospice-palliative nurse replied, “oh your one of them.”  “I guess you decided to palliate yourself instead of get medical care.” Yikes!  
No that wasn't my intention.  During my ER stay I was ignored, waited hours for requested Tylenol  only to be finally told there was no physician order.  Four hours after arrival I still had no idea if they were going to admit me or send me home.  The nurses deferred to the physician.  He never returned to my room.  I eventually unhooked myself from all the wires and went out in the hall where I stood leaning against the wall until physician finally came around the corner.  He told me my lab inconclusive, which told me nothing. He said I would be staying and going to PCU. He stated the reason for admission was that I had not seen my physician often enough.  It had been about a year and I had an appointment in a couple of weeks.  When I asked nursing staff when I would be transferred they replied, "when a room is ready", they failed to share there were several other patients on the roster ahead of me.  

Twenty-six frightening, sleepless hours after coming to the hospital I finally graduated from the emergency room to the PCU.  Aesthetically it was a huge improvement and nursing care significantly better, but there were still ongoing problems.  Several times after requesting information I was told it was ‘inconclusive’, ‘incomplete’, ‘the numbers are little off’ or deferred to the physician.  I never received any values.  Then I was told I MUST take medicine my regular MD had discontinued. When I told them I was no longer taking, they told me I was wrong.  It said in my EHR, (Electronic Health Record) I was taking them.  I explained that my EHR likely represented my last hospitalization three years prior. 

Politely I explained why I was turning down an injection (one I know well) , the nurse stated, “everyone on this floor takes this and if you don’t you will be documented as non-compliant and be discharged.” Whoa, I began to feel a little bullied.   I asked who gave the order? I had not seen a physician since being in the PCU.  She said my Hospitalist had already made rounds, looked at my chart, written orders and was gone for the day.  I bit my tongue and sat in silence but inside I was burning.  It would have been nice if she had taken time to visit my room.  

My specialist did visit but cut me off to listen to the nurse, then spent the rest of the visit explaining to me that the lead in the same group would not have discontinued those medications.  A follow up after the hospitalization found the lead physician and I on the same page. He had been my physician for a while and is characterized by many as being an intelligent but formidable fellow.   He has a priceless quality some do not, the ability to listen.

How could I help them understand?

THEY HAD MY DATA IN THE FORM OF TESTS  AND LAB VALUES, NUMERIC VITAL SIGN READINGS AS WELL AS INFORMATION FROM MY HOSPITALIZATION APPROXIMATELY THREE YEARS PRIOR.  I HAD A TIME LINE SINCE MY LAST HOSPITALIZATION AND A ‘STORIFIED’ DESCRIPTION OF THE FACTORS THAT HAD LED TO THIS CRISIS.  WAS THERE A REASON THEY COULD NOT ‘CONNECT THE DOTS’ AND WERE NOT OPEN TO ME CROSSING THE SUSPENSION BRIDGE OVER THE CANYON OF COMMUNICATION THAT WAS GAPING BETWEEN US?

I WAS THE PATIENT, IT WAS MY BLOOD, MY HEALTH AND MY INSURANCE BEING BILLED AND…THIS WAS MY LIFE!  SHOULDN’T I HAVE SOME ENTITLEMENT TO OWNERSHIP?  WHAT WAS THE BIG SECRET?  WHY WASN’T I INVOLVED?  WAS IT RIGHT TO BE MANIPULATED INTO TAKING MEDICATION AND BEING TREATED LIKE I WAS SIMPLY A MINDLESS BODY WITH NO FEELINGS, INTELLECT OR PERSONALITY.  WHAT HAPPENED TO PATIENT RIGHTS? 

NOW MUST I BE MY OWN ADVOCATE TOO? THE ANSWER WAS YES!


Self-advocacy had begun with my decision to seek care, making sure I brought current medication bottles and a written list of five significant things that had likely precipitated my condition. I remained pleasant and cooperative with the staff but decided I must take the position as self-advocate.  Although a nurse with extensive experience it appeared as long as I was wearing a patient gown they felt some sort of implied power over my decisions without proper explanation.  ‘Culture shock’ is an understatement to explain the care and respect I give to that which I was receiving.  Something was wrong! Refer to picture above.  Was it the people, the management, the system or me? 

Working Hospice-Palliative as a Nurse and educating people on their rights and choices is something I do during first visit and often refer to on subsequent visits. The law requires I give a written copy of Patient Rights and Responsibilities as well as a verbal explanation of those rights. I thought of how even when caring for a non-responsive patient I speak to the patient as well as explain to family and patient every thing I am doing.  

While being admitted in the Emergency Room, in the busyness they had somehow failed to give me a patient book with my rights & responsibilities, copies of advance directives and hospital information. Now two going on three days I requested a book and a couple of hours later received it.  

Two hours later the same nurse from the previous night arrived to administer medications and the injection I had tried to refuse the day before.  I agreed to take some of the medicine but when it came time for the injection I asked if she was aware of patient rights?  She said yes.  Showing her the booklet out I stated, “Good, you will see that number #19 on your facilities list of patients rights is the right to refuse certain medication and treatments.”  She was the charge nurse but picked up the book and stared as though this was a new policy.  Quietly in a respectful tone I told her I agreed to take most of the medication but I held out the right to refuse certain medications and had a valid reason why.  I did not wish to be uncooperative but did not want to take medications were contraindicated according to my regular physician.  She smiled and retreated after she wrote on the white board in my room.

Directly in front of my bed hung a huge white.  Each shift the nurses’ names and charge nurse were written in.  It had a direct number to ring my room, and a number to have ‘room service’ type meals delivered at my time preference. (Note: the food service was great). The board  said “Our goal is to keep you informed.”   Shift after shift the biggest sections remained blank.  After walking the unit two or three times I returned to my room.  The board seemed to call.  No one had asked me the questions that were left blank.  I knew in my patient documentation these were vital areas:  Goals and what good care meant to me (the patient). 

Once more I arose, took the marker in hand and filled in the missing areas.  Later in the shift when the nurse arrived to check my IV she stopped and stared and just shook her head in disbelief.  I smiled.  The next morning the specialist came flying into my room and I tried to speak, he skidded to an abrupt halt and held up his hand for me to wait.  My guess is the board is empty in everyone's room.  

He stood quietly and read the entire board.  Then he looked at me, took a breath and gave an explanation of findings and discussed the procedure he felt would give more conclusive information.  After educating me  on the pro’s and con’s, he concluded with the magic words…. it was my choice!!!  He seemed to be just as surprised as he was upon seeing the board when I said, “let’s get it done!” With appropriate communication he had gained my trust!

Here is a snap shot of the board I captured with my phone.  The hospital name and nurses names have intentionally removed.  Seeking backlash on individuals is not going to fix the bigger problem, the lack of communication that seems to exist.  

I titled the picture:  Please Help me Trust you!

Advocacy begins with you!

Practical Suggestions for Patients

1.     Know your patient rights and responsibilities.  Each facility should have a copy, the state, Department of Human Service… . 

2.     Ask questions, ask for answers and yes ask for your information.  Note:  Be cooperative and polite. Compliance, HIPAA and other regulation can make sharing difficult in some Healthcare Networks.

3.     Use your voice to help your self and help others.  Follow up incidents with letters, discussions with primary health team, nurse-navigators that call for information.  Write congressmen, healthcare agencies, blog, tweet or whatever your social media avenue.  Remember to be truthful and respectful.  Be a part of the answer we are all seeking.  The goal of disruption is positive change.

4.     Monitor your health, keep a list of medications, surgeries, allergies to have when seeking care Healthcare Providers.

5.     Stay connected.  Check out websites, support groups, Apps and information.  Note:  there are many new and differing products.  Be sure you are using same apps, sites, etc. that your healthcare team uses and/or recommends. 

Healthcare providers:

1.     Know the patient rights and responsibilities.  You are no less responsible for these than the patient.

2.     Ask the patient, care givers questions and listen to their stories.  Match the data to their story and solve the answer.  Remember most people don’t chose to be injured or ill and their reactions are often a result of your action or inaction. 

3.     Use your voice to advocate for patients and join other members of healthcare in providing solutions.  Follow up with incidents, write letters and discuss things with others in the healthcare arena.  We are only as strong as the ‘weakest link’.  Be a part of the answer we are all seeking.  Keep disruption positive.

4.     Monitor your patients and your own health.  Feeling burnt out, stressed or need a breather from a difficult day?  Take 5 minutes, deep breath and remember there is air.  Assess your need for time off or change in environment.  Communicate your needs. Please complete your shift and don’t walk off the job without reporting about your patients to the oncoming team.  Do unto your patient’s as you would like to be treated. 

5.     Stay connected.  Join in a tweet chat, support group,  attend local chapters and/or attend conferences. If you stay tune-up on recent developments you’re more likely to find interest, resources and even be an innovator in your field.    

Looking forward to the day when there are no "sides" and we are all on the same team!
 

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