Right Care Alliance

On September 8, 2016, my colleague Poppy Arford and I co-presented at the Maine Patient Safety Academy.   Poppy first introduced the Lown Institute, the origins and their incredible leadership. Then we encouraged our group to join our Healthcare Revolution with the Lown Right Care Alliance, and suggested ways to engage with us and our work.    Our theme for this particular exercise/presentation was “What Worries You Most”.  So, I shared my most pressing worries about Patient Safety, and then shared a story about my mother who is in assisted living. I worry about her health, safety and finances.  I know her money will not last and that eventually she will have to move again.  Change is extremely difficult for people with dementia.  Wouldn’t it be grand if insurances helped to pay for what really matters for people.  Dementia support and services are not covered by Medicare, but they would pay for an unending list of extremely expensive diagnostic tests, treatments and medications that would not make much difference for her at the age of 90.

After our introduction and  presentation, we asked our group of about 30 women, mostly nurses and other healthcare professionals,  about what worries them most.  This is when our session got really interesting.  First they wrote down their own worries in just a few sentences.  Then we gave them the floor, and they told us their worries.  WOW!  I still have a little lump in my throat.

Maybe nobody ever asked these hard working dedicated professionals this question, especially at a healthcare patient safety conference.  Their words validated my own worries and feelings, and they/we all validated each other.  It was a moving and emotional experience for all of us.  When a group of dedicated healthcare professionals say they are worried about something, everybody should be paying attention.

Our RCA organizer Stepanie Aines has compiled the list of worries from our session, and I am including them in this blog.  I am not shocked about most of these issues because I have worked in Patient Safety advocacy for 8 years now and I have heard most of them.  I was so moved because these people were so enthusiastic and candid about their worries, and everybody in the room understood each other.  We are all in this together, and that is the only way we can reform healthcare, together.  We will find trends and priorities and then go to work for change!

Poppy and I will be doing more listening exercises in listening booths over the next several weeks.  Right Care Action week is October 17 thru 21.  If anyone who reads this is interested in doing one of these activities themselves, in their place of work or some other setting please contact me or the RCA.  Links and contact information are at the end of this blog.  We are also working to form a Right Care Maine chapter and would love to have Mainers who want meaningful healthcare change to join us.

What worries you most about Healthcare?

These are the responses from our group of dedicated professionals.

Government – run healthcare

-Healthcare is a business-focus on profit making

-Pain management at end of life

-That a visit to the doctor will cost more than I can afford

-Not having an advocate when I can’t speak for myself

-Not having my wishes known

-1) Affordable healthcare during catastrophic illnesses. 2) There won’t be enough long term care beds available in the years to come with aging of Baby Boomers. 3) Proper placement of (human beings, real people) individuals relating to level of care, moving unnecessarily

-People I love being zombies – they are on wrong medications with awful scary side effects. Will that happen to me?

-1) Patients on too many medications. 2) Where meds are coming from now. ie clothes and other items must show a country of origin, meds do not, including prescriptions. 3) Healthcare is the only purchase that we make where we do not know the cost until after the fact. 4) The waste in Mainecare when a patient can come to ED at anytime where others with regular insurance have to wait because it is too expensive. 5) Hospital infections v. falls. My mother passed due to Central Line Infection,  Father from fall at a Nursing Home.

-1) Not having all the information to make an informed decision about my care or the care of a loved one. 2) Not being able to take care for a parent who has failing health and children who have their own needs (i.e. college tuition).

-1) Pain management in healthcare. 2) Staffing – staffing ratios increased pay for CNAs 3) lack of medicare support for assisted living

-  Loss of identity and decision making as well as ability to pay for healthcare as I age

-Unaffordable care – esp in negotiating for access to excellent care that is available to those who afford it (meds, tests, office visits, etc)

-Cost of Obama Care for retirees/folks on SSI – $700/month w/ huge co-pays and not all docs in network = substandard continual of care to folks that worked all their lives and paid into the tax system.

-Working too hard to put food on the table and to afford proper things for my kids that I’m too tired to be there emotionally and mentally for them and my husband. I fear working for those expensive, yet necessary things will take away from making a life.

-1) Affordable care. 2) My children won’t have resources and quality healthcare available to them. 3) High deductibles and HSAs are becoming the norm and more people cannot afford quality care. 4) Reimbursement from insurance companies is down – as a result quality practices cannot sustain practices.

-The lack of beds and help for treating patients with mental illness.

-Being stretched too thin. Having more and more tasks and responsibilities added that I cannot do my job safely. I am afraid that all the tasks will distract me from what matters most – patient care and safety.

-Medical errors in healthcare safety.

-Costs

-Available affordable healthcare for all.

Links:

http://lowninstitute.org/

http://rightcarealliance.org/

http://rightcarealliance.org/right-care-action-week/

https://usm.maine.edu/muskie/psa

Contact info:

kathydayrn@aol.com

parford@gmail.com

saines@lowninstitute.org

 

The day after my 83 year old father was readmitted to the Hospital, where he had contracted MRSA pneumonia, he slipped into Sepsis.  He was extremely weak and feverish on admission, and they had put him through a lot of testing and diagnostics.  My mother and I went into his room after lunch and I immediately saw a change in him.  His skin was ashen, and he was hard to arouse.  His nurse, a freshly minted RN, was typing on the computer on wheels right next to his bed.  I asked her to check his vital signs.  She said, “oh, he is just exhausted because of all the testing”.  This was a reasonable excuse for his exhaustion, but I knew something was off.  I reiterated that his color had changed and he wasn’t responding to us appropriately.

Dad’s nurse checked his blood pressure and it was dropping very rapidly.  He was going into septic shock, part of sepsis.  She called for the crisis team and they brought the code cart with them.  While my mother and I watched, they injected life saving drugs and slowly brought Dad back.  He was transferred into ICU and kept there for several days.   Mum and I called the priest.

That was the most frightening day of my father’s illness.  Neither he nor our family were ready for him to go, and so he fought valiantly to stay alive.  His infection sapped his strength and he had become bedbound, but he lived for a few more months.   Rapid response of the hospital team brought him back from the brink of death.  Septic shock is a very dangerous medical condition.  Dad’s sepsis symptoms were very subtle, and without my intimate knowledge of my father, and my ability to assess his status as a nurse, his sepsis might not have been caught as early as it was.

This week, the CDC has raised the alert about Sepsis and how important it is for everybody, not just medical people, to know the symptoms.

http://www.cdc.gov/vitalsigns/sepsis/index.html

 

Everyone should learn the signs of sepsis and be able to detect it in themselves or a loved on.  Sepsis progresses rapidly and it can affect major organs and/or cause death.  Rapid response to Sepsis is the only way to stop it.   It is indeed a race against time.

 

 

I see hatred every day, all around me.  I see it on TV first thing in the morning when Donald Trump gets more face time to stick his chest out and crow, prance, hate and show off.  He really does think he is the cock of the walk. Poor man,  he is so sick.  I see it in the newspaper in comments about articles, any kind of articles, even articles about a tragic death.    People say such hateful and awful things to each other.  I see it on the streets of my small city.  It is in grocery stores and in traffic.  Hatred is bubbling over in this country.

 

Last night in a gay bar in Orlando, FL,  50..yes FIFTY people were murdered and 53 more were  injured, some critically,  by a man seething with hatred.  This morning a scared and frantic mother of one of the young men in that bar was on TV.  She told about her son’s partner being shot and critically injured, but she couldn’t find her son.  She was scared out of her mind.

 

Why is there so much hatred?  What ever happened to live and let live, and love thy neighbor?   Why do zealots and radicals get so worked up over things they have no control over, that is no concern of theirs.  I think part of the reason is the hateful climate of politics in this country.  Yes, I think people like Donald Trump and  Paul LePage and other loud obnoxious politicians have roiled and boiled up this kind of behavior from those on the edge of craziness. They are very skilled at stirring  that cauldron of hatred.   Whatever happened to honor, nobility and civility in political leadership?  These guys and others like them,  spew hatred , they stir up the masses of people like them and people who hate them and then they defend everybody’s rights to have a gun, any kind of gun.   It is a frightening recipe for disaster.  Their freedom of speech is a threat to peace loving people just living their lives.  Their vitriolic comments fuel hatred,  and they empower gun owning haters and work them into a frenzy to commit evil acts. Criticizing, name calling and stigmatizing “different” people is how these guys stay in their pulpits….they entertain each other and their ilk with that kind of smut.  There is no substance or meaning to their words, only hatred.  They boast about “saying it like it is”.

 

We need to change the public discourse in this country.  We need to bring back real Christian values rather than fake fabricated ones. We need to lift people up who demonstrate those values, not people who fake they are Christian, only to further their personal agenda.    The big mouths spewing this hatred claim to be Christians!   What a lie!   During my Catholic upbringing I learned that  Christ loved everyone and helped those in need regardless of who they were!  He gave, he didn’t take.  He loved, he didn’t hate.  He healed, he didn’t harm.   I truly believe that his teachings should guide us, even those of us who are not religious or who may follow a different religion or spiritual belief.  Peace and love, not hatred and killing.

 

I am sick to death of the violence, hatred and unnecessary loss of life within our own US borders.  We need to get guns out of the hands of haters, and restrict gun sales. No more automatic weapons on our streets.  Then we need to remove the  perpetrators of hatred and violence from positions of power.

 

I can’t get that mother and her frantic fear out of my mind.  She probably fears the worst, with good reason.  I am the mother of a gay son and a straight son and I love them equally. I would defend both of them my own life, and I can’t imagine the pain that mother is bearing.   This is a very sad morning for this country.  This newest mass murder is another big scar on our country’s image and our ability to move forward.

Hatred must be stopped rather than cultivated in the US.

Louie is our 13  year old dog.  We love him unconditionally.  Mike, my husband is dedicated to him, even more than he is to me!   He walks him faithfully every single day, no matter the weather.  Louie knows this, and he communicates his needs to Mike with gestures and sounds.  It is so funny to listen to him when he is “telling” Mike what to do.

A new family member is coming today.  My son Brian is getting a puppy.  He is a tiny black hairy creature, a baby French Bulldog.   Oh my God, my heart is melting and I haven’t even met Rocky.  This photo was taken not long after Brian got him.  What is it about puppies?

I have read about the effect of dogs and puppies on humans.  Elderly nursing home patients who don’t respond to anything else will respond to dogs and cats.  Some dogs are trained to detect seizures,  guide the blind or do simple tasks for the handicapped.  Babies smile and grab for dogs when they see them.  Me?  I just melt.  I can’t understand people who don’t like dogs.  What the heck is wrong with them.

Dogs are a comfort to us fragile humans.  They don’t ask for much…just shelter, food, exercise and love.  They  stay by our sides when we are sick or sad, and they  entertain us tirelessly.  They are the most faithful of friends, no matter what.  Even dogs that are abused stay faithful to their owners.  That makes me sad.  They should just bite the abusive owners…it would be totally justified.

Louie has sat with me while I have healed from sickness or surgery.  He warms my lap in the nicest way.  He is getting very old, and moves slowly, a with a hitch in his stride.  Arthritis and congenital defects in his elbows make it harder for him to walk far or to play for very long. He grunts and groans when we pick him up, from pain we suppose.  When I think of losing him it breaks my heart.  So, I hold him close, let him sit on me in the car even if I am wearing black, talk to him, and value every minute he is with us.  At 13 years of age, the old fella doesn’t have too much time left.

Dogs will always be in my life, one way or the other.  Housebreaking a puppy isn’t high on my list of priorities right now, but we will certainly welcome Rocky, the new little grand dog, and he will be our guest often.  Mike will want to walk him too, and we will try to do that regularly.  He will be a contrast to Louie in every way….color, energy level, communicating etc.

You can’t beat the love of a faithful dog..no you can’t!

PS…I already taught Rocky Sit/Down/Stay!

What’s different now?  How are we doing?  Have we made progress in Patient Safety?

Its hard to tell. I don’t have sophisticated ways to measure the results of my work.  There is a difference though.  I am received differently than I was 7 years ago.   It will actually be 8 years ago this fall that Dad became infected with MRSA while rehabilitating in his small community hospital.

When I busted onto the scene in 2009 in Augusta Maine to fight for MRSA screening and isolation of patients who are being admitted to Maine Hospitals, I had to get my feet under me.  I didn’t know how politickin’ was done.  I didn’t “know” people.  I was an obscure grandmother, wife, mother, daughter.  I hadn’t worked in nursing for quite a while.  What I did know is that what happened to my father should never, ever happen to anyone.  With that knowledge, and powerful passion fueled by grief, I forged my way.

There was sympathy, and understanding, but there was inconceivable push back.  The greatest push back came from the Maine Hospital Association, their members and even some healthcare professional groups!  That was astounding to me.  I thought we would all be on the same side…the side of the patients.  We all want safe care, don’t we?  Well they want it, but they don’t want it to COST anything.  Cheap or free MRSA prevention would be good for them.  They also wanted it without looking bad for causing infections.   This means that my work could go on  if I didn’t tarnish the polished image of hospitals.  REALLY?

The push back did not deter me. I forged ahead and I still do.

I just got back from the CDC in Atlanta, GA.  This was my third trip.  My first trip in 2010 blew me away.  I was a bit intimidated, because the CDC wrote the bible of infection prevention and that was part of my job as an employee health nurse.  In fact, I was pretty nervous when I called there for expert advice, as a working nurse.  To be a guest there, as part of a larger group of healthcare consumers/patients was a little overwhelming.  I spoke out, but not with a lot of conviction or confidence.  The second time was better.  THIS time…watch out!   I had no qualms about speaking up, and often.  I BELONG there.  My colleagues, each and every one of them affected by healthcare harm related to infections, or medications, were all equally confident, informed and eloquent in their comments, questions and ideas.

The CDC staff that organized our meeting knew exactly what they were doing.  We met on the premise that this would be a discussion.  None of us were rushed through our introductions or our stories.  We each had equal opportunities to offer questions, solutions, and ideas.  Top leadership, including Dr Thomas Frieden, Director of the CDC,  introduced themselves, and briefly talked about their work and programs, and then we talked.  We had a real exchange.

Fresh new ideas around Sepsis, HAI prevention and treatment, Multi drug resistant organisms, Antibiotic use and stewardship, Death Records reform and so many more very important issues in Patient Safety were covered.  I learned so much, but I also brought the nursing perspective.  Programs, mandates, policies and recommendations are essential, but without proper bedside staffing levels in all healthcare settings, they will not work.   We will not get to ZERO infections without adequate  nurse staffing.

There were no commitments made during our meeting, and I do understand that it is not that simple.  But, tons of notes were taken during our conversations.  We also populated large idea boards on the wall.  I look forward to the compilation of all of this material.

Before the meetings, 4 other amazing colleagues were photographed and videotaped for the CDCs blog and other use.  While we waited our turns, a random CDC employee came by asking what we were doing there.  When we told him he said  “oh ya, I had a surgical infection and sepsis too!”  then he shared his story.  This happens everywhere we are.  Everybody has a tragic infection story about themselves, a loved one or a good friend.  We want those stories to go away…we don’t want everyone to have an infection story.

I am grateful for the opportunity to visit the CDC and I look forward to working with them more in the future.

 

 

 

 

http://www.pressherald.com/2016/05/07/mainers-call-for-more-data-to-help-prevent-medical-errors/

This morning the Portland Press Herald had this article on the front page.  The  high numbers of vulnerable sick and injured patients who die not because of their illness, but because of preventable harm is just not acceptable.  It makes me crazy that  1/4 to 1/2 million people die unnecessarily every year in the US.   Dad died in 2009, after his hospital infected him with MRSA, but he was not counted in any of the voluminous data that I read.   He suffered a great deal and died within several weeks of the infection.

I have worked, as a volunteer, in Maine and nationally since Dad’s death, to help stop this epidemic of needless deaths.  Just last week, on May 4, there was a Patient Safety conference in Augusta Maine sponsored by the Maine Sentinel events team.  I asked several times for the agenda and details for this event, so I could register and attend.  None were sent.  Then I was told that there was such an overwhelming response to this event that it was “sold out”. I could only attend if there was a cancellation.  There were no cancellations.   I was very disappointed because the patient’s voice is essential to any discussions about them or about Patient Safety.  So I asked again for an agenda so I could advise the organizers about where it would be good for them to include the patient’s voice.  None was received.   Since I got nowhere with this, I wrote to the Commissioner of the Department of Health and Human Resources of Maine, and expressed my disappointment that the State would have such a conference without inclusion of the patient’s voice.  I would be very surprised, but pleased to hear back from our Commissioner.

Coincidentally, on May 4, the very day that I was excluded from a Maine Patient Safety conference that was held about an hour away from my home, a reporter from the Portland Press Herald called me because of a recent report from Dr Marty Makary, of Johns Hopkins, that healthcare harm is the third leading cause of death.  This was not news to me, but I was certainly happy to have the opportunity to talk with this bright reporter.  He also sent a photographer to my home and this became a front page article on May 7, today.  I am very grateful to this reporter and his newspaper for recognizing the importance of awareness on this issue.

We all know the old saying “there is more than one way to skin a cat”.   Well apparently, there is more than one way to get the  word out on Medical errors and preventable healthcare harm. I missed the opportunity to bring the patient’s voice to the Patient Safety conference in Augusta, but my voice was shared with thousands of others on the front page of the Portland Press Herald this morning.  Although this is an unpleasant and for some an unpopular subject, all of us, as a society must talk about this openly and often,  and demand better.

 

April 18, 2016

 

I’m sitting in a big hotel in Chicago waiting for my ride on the Go Bus, to O’Hare and then I’ll wait to board my flight home to Bangor, ME.  Flying is hard for me, a 67 year old large woman, because it aggravates my arthritis and edema. When I get home I will be lame and exhausted, and I will need ibuprofen for a few days.

 

So, why am I here?  You may have guessed that I’m not particularly fond of flying or of the fast life. City life doesn’t appeal to me.  People move much too fast to accomplish the same things we hicks do and they have to fight crowds of people and traffic to do it!  They are fascinating to watch, but I haven’t left this hotel since Thursday evening, which was 4 days ago.

 

I came for a health care conference, with the Lown Institute, and the Right Care Alliance.

 

For the past 3 days, I have listened to researchers, doctors, lawyers, patients, nurses, a housing expert, a clergyman, writers, reporters, Healthcare organization leaders, medical and nursing students, and more.  We heard about the many hurdles in healthcare, and in seeking healthcare, and we heard about solutions.  When we met in small and big groups, we talked about our hopes and aspirations for a better health care approach. I hate to use the word system because that is what we have and it ain’t working.

 

Our fearless leaders Dr Vikas Sanai and Shannon Brownlee got us all wound up.with rallying cries and with real crying with real tears.  For the love of humanity, we have to do this.  We need a revolution.

 

With so much overuse, underuse, misuse and abuse of healthcare, and so much waste, up to a Trillion dollars a year, how can we go on this way?  Simple answer, we can’t.

 

The reason for all of my work is Patient Safety and to bring the voice of patients to every meeting and organization that lets me in the door.  The RCA WANTS MY VOICE, but better yet, they want everybody’s voice.  The more the merrier.  The more the better our chances are for a revolution.

 

I can come up with so many examples of overuse, unnecessary testing, too much medicine prescribed, too many office visits, and stupid routine things done, and all just in my family. I also think about the cost to us. I think of my son who is struggles with medical debt for a necessary knee surgery about 10 years ago while he was uninsured.  I think of my mother who right up until this year, at age of 90, was getting annual mammograms.  She was also getting yearly pap smears, cholesterol tests and ultrasounds on her carotid arteries that she swore she would never get surgery for, and invasive cardiac testing for a faulty valve that she has said she would not get fixed. Medicare will pay for these useless tests every year but not one penny toward her assisted living care for dementia.   Then there is the underuse…that I experienced myself last year when I had a large kidney stone that would not pass on it’s own.  When I needed an X-ray or ultrasound and blood work, I didn’t get it!  It caused temporary harm to my kidney, and unnecessary suffering, and yes, more doctor visits, delays and cost for care that I urgently needed.

 

The RCA movement aspires to Just Right Care. We want care that is right for the individual, at their stage of life, and for their individual needs, in the right place, at the right time. We want a democratic healthcare approach.   All of us wants and needs that because too many tests and too many medicines and too many procedures can cause harm and cost a fortune.  And all of those tests, procedures, and diagnostics are decided FOR patients by our insurance companies, and our government…. by everybody but us!   We also want a system that is accessible to everyone, from birth to death, and that does not put us at risk for bankruptcy.  A single healthcare encounter has the potential to financially ruin anyone except the very wealthy.

 

So, this is a rallying call.  To all of my friends and family who agrees with what the RCA and I are trying to do, please visit our webpage, and read the mission, vision and pledge.  http://rightcarealliance.org/  Take a look at the different councils and who is on them.  Consider joining a council and please sign the pledge.  Then follow and/or support the work.

 

We, the Right Care Alliance, will raise our voices, and cause a ruckus.  We will transform healthcare into something that is safe, high quality, accessible and affordable for all.

 

 

 

 

 

Over the past 9 years and somewhat Ad nauseum,  I have carried the torch for patients and their voices into some pretty VIP places and in front of some HUGE names in healthcare.  I’m not bragging , it’s just a fact.

It wasn’t always easy and I did it with a lot of trepidation  at first. Like most people with a new mission, I had to get my courage up and my feet under me.   I was never in the limelight or even a good public speaker in my days as a hard working bedside nurse.  My audience was much more intimate, sick patients and their very worried loved ones.  I always tried to be gentle and to  make them smile or at least cheer up somewhat.  Being a patient is the most challenging job any of us can face, and they don’t want much, just attentive care and competent clinicians who will work with them.   I think about patients, especially my own father,  when I am nervous about a presentation, then I think  “what do I have to worry about?”

Some of the places where I have been a speaker or a guest, or an attendee are the DHHS, CMS,  State and Federal CDC, IHI, IPFCC, Aligning Forces for Quality, Robert Wood Johnson Foundation,  Consumers Union Safe Patient Project, APIC Idaho, Lown Institute, Maine Quality Counts, Maine Health Management Coalition, Maine Patient Safety Academy, Maine State Legislature, and a bunch more.   A few of those organizations even gave me recognition awards!  That was an unexpected honor.

In the early days of my Patient Safety work, I was shocked and felt a glimmer of hope every time I was called on to comment or ask a question. It seemed that some of those people actually cared about what I had to ask or say.   Then, HOLY MACKEREL, I would see an actual patient representative speak, or be on a panel discussion.  Then all of a sudden, it was ME they were asking to be on a panel!  Then of course the unbelievable honor….I was asked several times to give a keynote talk.   I worked extremely hard on my talks, because I had to strike a balance.  I had to get a powerful message out, without pissing healthcare people off.  I might have failed that a few times, but you can’t always keep everybody happy and be an effective Patient Safety Advocate at the same time.   Early in my work, I was angry about losing my Dad to a preventable hospital infection, but I struggled to keep my tongue.  If I hadn’t…things could have been very different.

Fast forward.  As part of my work, I have helped with planning of the biggest healthcare event in Maine. A few of us on the planning committee are consumer representatives, and the organization has been excellent about inclusion of  the patient/consumer voice.  Every year we have similar conversations and toss around ideas about how to increase consumer attendance, and to include them in the presentations.  This year was pretty similar, so imagine my surprise when I read all of the breakout session descriptions and as far as I could tell, not one single presentation has a patient/consumer representative as a panel member, not ONE! HUGE GAP! And no, the old ruse that “all of us is a healthcare consumers and a patient at some time” doesn’t float anymore.  Unaffiliated patient/consumer representatives only!!!!  I usually do a patient oriented presentation for this event,  but  I have increased personal family responsibilities this year, so I did not present an abstract proposal.   But, I am not the only unaffiliated patient (or patient/consumer representative)  in MAINE!

There is a common thread in almost all of my groups.  There is an effort to build on the patients voice, but there is also a very subtle control over it.  Sometimes I worry that it is intentional, but mostly I just think people forget who they are working for….. PATIENTS!    I have been in huge conference  rooms where courageous real patients shared their stories and wisdom on a big stage. I have been on a few of those stages and it is daunting, but also exhilarating.     The room, mostly VIPs, doctors, nurses, lawyers, state or federal leaders, other healthcare dignitaries was hushed and totally absorbed in what they had to say.   Nobody expects patients to bring the complex science and the heavy data with them (although some do), but when they speak of their own life altering experiences about their success from a certain treatment, or approach and what they lave learned, shared,and observed. the room is always riveted on them.  That is not always so when a high falootin’ healthcare professional drones on about what he/she has done FOR patients. and then attempts to tell THIER PATIENTS stories.  Patients can do that for themselves.  All they need are the opportunities, encouragement and sometimes a little rehearsal to preserve the time and point of a presentation.

My new mantra for any healthcare conference planning I am involved in  from now on will be this.

MAKE PATIENTS THE FIRST THOUGHT IN YOUR PLANNING, NOT AN AFTERTHOUGHT.

IF YOU’VE GOT A BETTER WAY, PRODUCT, SCIENCE TO PRESENT ABOUT,  BRING PATIENTS INSTEAD OF POWERPOINTS TO PROVE IT.  INVITE THEM TO SHINE, FOR THEMSELVES,  FOR YOUR MAGIC POTION AND FOR THE BENEFIT OF ALL.  IF YOU ARE GOING TO DISCUSS A PARTICULAR HEALTH PROBLEM/SOLUTION, BRING A PATIENT WHO CAN GIVE A HEARTFELT PERSONAL TESTIMONIAL.    GOT DATA?  BRING THE NUMERATORS AND DENOMINATORS, TRANSLATION: BRING PATIENTS INSTEAD OF TEENY NUMERICAL  GRAPHS THAT  NOBODY CAN READ. IF YOUR GROUP IS DISCUSSING PATIENTS, INCLUDE THEM , PUT THEM IN LEADERSHIP ROLES AND ON SPEAKER PANELS.  UNLESS YOUR MEETING IS EXCLUSIVELY FOR CLINICIANS AND IT IS COMPLETELY ABOUT THE SCIENCE, PUT PATIENT FIRST AND FOREMOST ON YOUR AGENDA.  BUT CONSIDER THAT EVEN THE MOST GEEKY SCIENCE BASED HEALTHCARE CONFERENCES ARE ABOUT PATIENTS, OR AT LEAST PATIENTS HOPE THEY ARE.  MAKE SPACE FOR PATIENT PRESENTERS.  

If I could just send this message to every organizational planning committee call I have been on and walk away knowing people had paid attention, it could save me many hours on conference calls.  But, I do love my calls and the networking and the brilliant people I work with all the time.  I just hate having to repeat my message about the Patients Voice every year, every meeting, every organization,  over and over.   I hope it will eventually stick and someday when I am too old to do this anymore,  people may say, “I miss Kathy Day and her nagging about bringing the Patient’s Voice.”

 

 

 

As a healthcare consumer/patient advocate I have been involved in many different projects including the Choosing Wisely Campaign and the Statewide Healthcare Associated Infections council.  In both capacities, we have had many different conversations about antibiotic stewardship. Everybody knows that overuse and unnecessary use of antibiotics have lead us to Multi drug resistant infections, with very few new antibiotics in our future.  There is a lot of blame to go around about Antibiotic overuse, mostly from Big Pharma marketing then our food animal growers, then prescribers, Hospitals, and to a much smaller extent, patients.    During a Choosing Wisely encounter, patients are advised to ask questions. We are supposed to ask if the medicine is necessary, if there are alternatives, if there are risks, all very valid questions.  In the HAI council I have heard many comments about patients asking for unnecessary antibiotics.  My sympathies generally lie with patients, so I can understand why a Mom with a baby who has a very painful earache, wants everything she can get to ease her baby’s pain, including treating possible infection.  I have a constant nagging discomfort with the US vs THEM hidden message in some of these conversations, even though I understand the necessity of addressing overuse of antibiotics.  I’d feel more comfortable thinking we are all in this together and for a single purpose, to keep people healthy.

This morning I was prescribed not one, but two antibiotics, along with Prednisone.  I have been very ill for 5 days with high unrelenting fever, coughing and wheezing.  Always in the back of my mind is the usual mantra from the infection professionals in my State HAI group, “most of these things are viral and antibiotics will not help or cure that”.   My lungs sounded to me (without a stethescope) like a symphony orchestra, then a bee hive, then cats meowing, then  I swear there was  a foreign voice down there.  I was not hallucinating, at least I don’t think I was.  It’s too bad that little foreign voice in my lungs couldn’t holler up and say “I’m a bacteria” or “I am a virus”.    I was weak from fighting fever, wheezing and coughing, and I was suffering with stress incontinence and had to resort to using pads.  Being sick like that and struggling to breath is a nasty experience.

When I finally marched my sorry butt off to my doctors office this morning, I was going to be THAT patient if I had to be, the one my colleagues talk about in our HAI meetings.  I had used all of the home remedies I could including Advil, Tylenol, Tussin DM, steroid inhaler( from a prior wheezing experience), honey and cinnamon,  tons of water, and lots of Louie (my little dog) snuggling, and my dedicated husband had been caring for me and making me soup.   If my doctor did not recommend antibiotics I would request them.  I was a ragged sick old lady, and  a wash of sweat from my early morning fever, that had just broken, and I knew what I wanted.  I will NOT apologize for getting medicine I needed to avoid getting sicker or being hospitalized.

I think we must be very thoughtful and cautious in our discussions about Antibiotic Stewardship.  Maybe the conversation should provide better guidance for when an antibiotic IS appropriate than when it isn’t (stuffy nose and congestion for a few days, also miserable, but doesn’t respond to antibiotics).  We don’t want to ward people off from getting necessary care, and we certainly don’t  want people getting sicker when there is medicine that can cure them.  It is a very fine balance and the patient is the priority, because it is their health on the line.

This antibiotic conversation sometimes reminds me of how women use to feel like failures if they took something for pain during labor.  Was it implied by their caregivers, or their doctors  or their coaches that they weren’t  tough enough?  Who would do that to laboring women patients?   We must avoid making anyone feel guilty, unimportant or dissed in our Antibiotic Stewardship conversations and practices.

 

 

In 1956 when I was 7 years old and going into second grade, my family moved into our new home at 18 Winter Street in Millinocket, Maine.  We had been visiting the street and the lot and the growing house on it for months.  We started going there when they were clearing the trees except for the few maples and white birch that still stand there today.  My parents were honest hardworking people.  My father’s family had never lived in a house of their own, and so this was a huge source of pride for him.  He worked at the Great Northern Paper Company, and he had earned his way since he was about 15 years old.

GNP essentially gave employees a town lot if they wanted to build a home.  My family was housed in a two room “shack” (my mothers affectionate term for our previous dwelling) at the edge of the river on Aroostook Ave.  We had a toilet, and oil burner stove, and a kitchen sink, but no bathtub or vanity sink.  My mother, father, brother and I all slept in the same room, so a new house with separate rooms for all of us was a dream.

The mill not only gave us a lot, they provided heavy equipment to help dig the foundation, let us use cement forms for the walls of the foundation, and if the owner bought a case of beer, it was pretty easy to get a crew to help mix and pour a foundation.  This was the way Millinocket use to be.  Everybody worked together and helped each other, no matter what their status was in the community.

While the house was being built, we kids played, snuck candy, tormented and all got use to each other.  There was a new brood of kids there and it kept growing.  A lot of the lots on the street hadn’t even been cleared when we moved there, so new kids showed up all the time for a while.

My parents moved us in before all the sheetrock walls, cupboards, or doors were in place.  I remember he smell of lumber.  It was framed and sectioned off but it took a long time for Dad to finish it, with walls, finishing the wood work, even putting up cornices and doing all of the painting.  Mum made draperies, pillows, and upholstered old furniture for it.  The most grueling and beautiful work went into the hardwood floors that my father laid by himself until his knees could hardly bear another day laying tiny pieces of wood.   My mother brags that those floors were what she wanted and so he did it.  The floors are in amazing condition to this day, but much of it is covered with some aging carpet in the living room and hall.  Mum remembers Dad’s gift to her with clarity.

There are only a few of the original neighbors living on Winter St these days.  Most of the elders have passed and some have moved on.  My mother and father were some of the last remaining there.  Dad passed in 2009, and my mother’s memory has failed so badly that she had to move into assisted living just this past June.

What an awesome street to grow up on.  We played all year around, outside.  I remember the parents getting angry because none of the kids would come home the first time they were called to.  We had such a great time playing all sorts of games.   Red Rover, Tug of War,  hide and seek, jump rope, dodgeball, marbles.  We got along,and rarely argued or fought.  I loved growing up on Winter Street.

We have to sell our home, the only childhood home I remember in great detail.  We won’t be able to go there to sit on the porch and visit with the few old neighbors who still live there.  We won’t be solving anymore problems of the world on the back porch, while Dad smoked and Mum cooked.  No more kids or grandkids of the McCleary’s will visit the residence.   No more trips to the golf course to go sliding.  No more gatherings in our living room after a funeral, birthday party, holiday celebration or other event sad or happy. No more lamb barbecues, spaghetti feasts or holiday dinners.  This was the place that my two brothers and I brought our own children and my granddaughter to see where and how we lived as kids.  My youngest brother was born 18 years after I was and so he only knew this house as his home.  My older brother and I remember the building of it and moving in.

I am going to give a copy of this blog to whomever buys my mothers home, my home, my brothers’ home.  I think it is important for them to know the history of it.  I hope it will mean something to them, to understand that my parents’ blood sweat and tears went into this house, and some awesome memories stay there.  It breaks our hearts to sell it, but we hope that a new young family will treasure it the way we did.  We hope that they will respect and love the home and the neighborhood, and make a wonderful life there.

Our best wishes to the new owners to have a long and happy life at 18 Winter St.