McCleary MRSA Prevention

When I read a letter,  written by a Davita lawyer and submitted as public document to the Maine Certificate of Need officials, I was stunned.  His letter seemed to be an attempt to belittle my work, my reputation and to silence me, and in turn the patients’ voice.

After I consulted with trusted and wise colleagues in Patient Safety, I decided not to write a rebuttal letter.   Instead, my colleagues wrote a strong letter of support to my State officals.  I can’t express how this made me feel.  That virtual group embrace was overwhelming.   We all work very hard to engage and empower patients, to give them a voice, and to help keep them safe.  Each of us has had an impact in our own communities and States, and we also work as a cohesive unit  in a Nationwide network to tackle Patient Safety issues together.  We are unstoppable and our collective  voice will not be silenced. 

The following letter of support was sent yesterday to Maine State officials,  and others.  This letter is a collective effort that brought many of my colleagues together to demonstrate our unified and solid stand for safer patients everywhere.  It was signed by 27 Patient Safety Advocate/Activists.

Without my nationwide Patient Safety network , including Roberta Mikles RN, who put me in touch with Advocate Arlene Mullin, and 5 very brave patients, Maine State Nurses Association, Maine People’s Alliance and Carl Ginsburgh,  this Patient Safety campaign in Bangor, ME,  would never have happened.

 There is power in the truth.

Date:    August 17, 2012

 To:       Phyllis Powell

Assistant Director

Planning, Development and Quality

Division of Licensing and Regulatory Services

Department of Health and Human Services

State House Station #11

 41 Anthony Avenue

Augusta, ME 04333-0011

Re: Letter in support of patient safety activist Kathy Day, RN concerning proposed

 July 12, 2012 

 The debate over the sale of EMMC dialysis patients to Davita is not a Union vs EMMC issue, as some choose to say.   It is a Patient Safety issue.  Patient safety is an issue for every single Maine resident who uses our healthcare systems. This Davita issue is also about relinquishing local control and governance over the quality and safety of care provided to local Maine patients.  Unforeseen illness, injury or medication complications could put any one of us in a dialysis chair some day.  This should frighten every single one of us.

  I asked for a tour of the EMMC (BOYD) dialysis services the other day. The clinic supervisor seated me in the waiting room for about 10 minutes while he made the necessary calls to EMMC bosses to address my request. That gave me the opportunity to talk with the spouses of 3 local dialysis patients.  They were uncertain and fearful of Davita coming to Bangor.  One dedicated husband said he wished he had known about the hearing because he would have attended.  It’s a shame they didn’t know. Patients and families would have benefited more than anyone from the DHHS Certificate of Need  hearing. It seems that EMMC staff should have posted the hearing information in a dominant spot for all to see…especially patients and their families.  Sadly, the patient’s voice is left out of decisions that are most important to them.

 I was denied a tour of the facility.  Apparently, my concern for the safety of EMMC dialysis patients was not a good enough reason to be allowed to see it. Before I left, I had a brief conversation with the clinic supervisor.  He said he had done research on Davita.   I asked if he had read about how Davita has sued doctors because they resigned and left to work elsewhere because they believed Davita policies were not safe for patients. They bucked Davita policies.   Yes, the young supervisor had read about that.  “How did that make you feel?” I asked.  He said with a very non expressive face “indifferent”.  Wow.  I didn’t have anything else to discuss with this man.  His indifference over something this damning of Davita was alarming. He was responsible for every patient who was hidden behind those securely locked EMMC clinic doors.  Even though his response floored me, I realize that EMMC and Davita have wedged him into the middle of a situation that he has absolutely no control over.  If Davita comes, he and every other person, including doctors on staff at our dialysis clinics had better get use to not having control over anything in the “business” of Davita.

I am extremely concerned for EMMC dialysis patients if this financial deal goes through.  At the July 10 Certificate of Need hearing, I displayed  3 posters. Two of them had the real life stories of 5 patients from Davita clinics from across the US. The patient heroes (whose photos and stories were displayed) wrote their own testimonials about personal harm from their Davita clinics.  Most of them had been dismissed from their clinics, simply because they were vocal about their concerns and harm.  These 5 people were just a tiny sample of thousands of patients who have experienced the exact same thing.  I didn’t observe one single Davita rep, EMMC manager or dialysis staff person reading those stories, even after repeated welcomes to all to do so.  Could it be that they don’t care about patient harm?  Dr Razcek, EMMC vice CMO described the patients’ experiences  as anecdotal.  It’s odd that he would describe the stories of real life dialysis patients anecdotal, but swallow the stories or “so called” evidence of Davita whole. Dr R’s comment was insulting to the integrity of those 5 people who have suffered through harm, retaliation, segregation, bullying, physical and mental abuse, and now someone is questioning their honesty?   I have spoken with each and every one of those patients and they are real, their suffering is real and their stories are real.  I offered to put EMMC leaders in touch with those patients and that offer was refused.  These patients’ stories are the absolute and dangerous  truth about Davita.  

 “The right care, at the right time, in the right place” was in bold print in the half page EMHS ad in today’s BDN. .  Apparently, that promise is made to everyone except dialysis patients.  EMMC/EMHS  will have no control over Davita policies or the quality of care that our Maine citizens receive in Davita managed dialysis clinics.  There will be no local governance. Davita skewered the EMMC dialysis care  outcome reports during the public hearing.  If I had been an EMMC manager, that would have made me very angry. In fact, although I am no longer employed by EMMC, I do remain loyal, and it made ME angry. My family and I receive some of our healthcare services from EMHS and EMMC.  Who validated Davita’s data?  Davita did.  Conspicuously missing were Davita’s records of dismissals and patient harm.  Records of their care outcomes, patient safety measures,  and regulatory violations in California are available online.   The 5 patient stories I displayed were just a sample of many who have been harmed and dismissed by Davita.  As a Mainer, a retired nurse and as a former employee of EMMC, I was insulted by Davita leaders and their condescending presentation. 

 If EMMC continues to pursue this $10,000,000 sale, and dialysis patients are harmed by Davita, EMMC becomes complicit in any resulting harm and sickness that our local dialysis patients my encounter.

 Keep the control and funds for dialysis services in Bangor, ME.  Use any revenue to address perceived defects  in our local clinics. Keep the dialysis business-related revenue in the local pharmacies, laboratories,  and supportive services.  Keep the  safety of Maine patients in Mainer’s hands.  Davita cannot do one single thing better than EMMC except make money and pay stockholders.

My third display poster for the hearing , showed photos of the CEO of Davita in a Three Musketeer Costume and quotes from him  saying “It is not about the patients, it is about the teammates”.  These photos, quotes and articles are available to anyone online.   This poster should have made it perfectly clear that money intended for high quality dialysis care is siphoed off by Davita and goes to glitzy rich booze soaked  parties, huge new $100,000,000 Denver, CO headquarters, a $22,000,000 annually compensated CEO,  and most importantly to them,  into stockholders hands.  Davita is even banking on boomers!  I posted that article on this board as well.

Mainers, demand that the control of our local dialysis clinics stay in local hands.  Cheapened care, cookie cutter treatments, and Walmartesque  services from Davita will not benefit Maine dialysis patients.

 The State of Vermont rejected Fresenius (Davita’s biggest competitor) because citizens declared that For profit dialysis services were not for the public good of Vermonters.

 Davita services are not for the public good of Mainers.

Kathy Day RN Patient Safety Activist

I pray to God that I never go into End Stage Renal Disease.

When I read in the Bangor Daily News that Eastern Maine Medical Center was going to sell their Dialysis services (patients at average $70,000 annually each in 2008) to DaVita Dialysis Corporation, I was shocked. http://bangordailynews.com/2012/04/24/health/eastern-maine-medical-center-to-sell-dialysis-clinics-to-national-chain/  It is my understanding that EMMC offers a fine service already, just as they have promised their charitable donors they would.  Charitable donors have given money toward a beautiful 4 year old facility on the West Side of Bangor, ME, and I have never heard anyone complain about their treatment.  Information about bad care often trickles down to me because I am a patient safety activist and advocate.

The BDN news article went on to describe 3 concurrent investigations into Davita  by regulatory agencies.  One is for fraud in overcharging for a common medication given to dialysis patients, Epogen.  These investigations were fluffed over by EMMC  and we, the BDN readership were assured that these investigations are no big deal…..really?  Apparently the investigations are not as big a deal as a check for over $10.000,000 for the purchase of EMMC dialysis.   A fellow activist from California contacted me about  Davita.  She warned that Northern Maine does not want or need them here.  She in turn connected me with Arlene Mullin Tinker.  Arlene and her team of legal advisors  have advocated for thousands of harmed dialysis patients.  Many of them have been Davita patients.  Her experience is that Davita is #1 for dismissals. During my 42 years as an RN,  I had never heard of dismissing dialysis patients.  Wouldn’t that be a death sentence??  A death sentence usually involves a judge and a  jury of our peers.  Not so for dialysis patients.

As it turns out, Davita clinics nationwide have repeatedly dismissed dialysis patients without cause or notice.  These patients have generally been patients who were vocal. They complained about unsafe care, complications of their care, poorly trained staff or poor infection prevention techniques.  All of these complaints sound reasonable to me.  I would certainly complain if I was on the receiving end of poor care.  Dialysis patients are captive to  their illness and to the treatment for it, dialysis.  Without regular high quality  treatments, they will die.  So, even if their care is substandard, they generally have no choice about where to get their treatments.  Their only option is to continue care, often times  from the same people who may have harmed them.  My research revealed that the only reason to “dismiss” or fire a dialysis patient is violence.

At EMMC Dialysis services, the hierarchy beyond the director of the clinic, is EMMC management, and then Eastern Maine Health Services management, and finally we have 2 local Boards of Directors.  Managers and Board members are Bangor  and EMMC service area residents.  They live, shop, go to church and social  functions  in the same places that the patients do.  Our local Hospital hierarchy coexists in the same community as the patients and they are accountable to them.

Davita, now that is a different story. They are a Fortune 500, for profit company headquartered in Colorado.  They are buying up Dialysis clinics all over the World.   Davita people  ”from away” came to Bangor on May 25 to do a slick sales pitch at a State of Maine DHHS Certificate of Need hearing.   They presented  an almost religious mission and presentation.  They explained their trilogy of care. 1. We care for the World 2. We care for each other.  Last and finally,  3. We care for patients.   I immediately figured it out.  Patients are last on the list.  But, the money that patients bring in, mostly from taxpayers  in the form of Medicare/Medicaid dollars, is really #1.  The “world” is their stockholders.  ”Each other” are the so called citizens of the Governors community(will explain in a moment).  And finally at the bottom of the pit are the patients…..who get the dribs and drabs of whatever  remains of the healthcare dollars after the coffers are filled.   I looked into Davita leadership. Their CEO, Kent Thiry is quite a guy.  He likes to be called “Governor”, which seems  kind of egomaniacal.   Employees are called “citizens” of his community.  He runs RAH RAH rallies for his cult like “followers’ and dresses up like a Muskateer.  He leads loud Nazi like rants/chants.  He does somersaults on the stage.  He hired a bull for a ritzy Las Vegas meeting to prove that he can ride one.  What does any of this have to do with Patient Safety and high quality of care.  Dialysis funding (through Medicare patients)  pays for all of these Davita variety shows! http://www.youtube.com/watch?v=JowmBdx4nFw

Davita is a perfect example of everything that is wrong with Healthcare today.  Taxpayers pay into Medicare and Medicaid services.  Coverage for dialysis treatment in guaranteed to every US citizen regardless of income. Around $70,000 to $100,000 is paid annually  for every medicare dialysis patient.  EMMC was offered over $10,000,000 by Davita for their dialysis services.  Kent Thiry ‘s 6 year average yearly compensation was over $22,000,000, http://www.forbes.com/lists/2012/12/ceo-compensation-12_Kent-J-Thiry_IPFN.html,  more than all of the  dialysis services of EMMC is worth.  All of these  figures prove that there is HUGE money in corporate dialysis services.   My concern is …How much is spent on safe, high quality dialysis care?  If the profits in this for profit  ”business”  are any indication, not much actually goes to patient care.

The slick sales people at this CON meeting also bragged about Walmart-like “one stop shopping” for patients.  They are proud that they offer their own  mail order pharmaceuticals for their patients.  Most dialysis patients are on at least 8 prescription drugs.  Staff are trained to be sales people and to encourage their patients to purchase their medications through Davita mail order services.  Then they will deliver them directly to the patient, at the bedside.  WOW, it’s a miracle. Bill Miller of Miller Drug on State St in Bangor has been doing that for free for years…same day, home delivery for free.  And Bill’s profits stay in Bangor, and help the local economy. Bills neighbors and friends can also borrow certain medical equipment for free. I borrowed a wheelchair from Bill a few years back to help my father get around at the American Folk Festival….no charge!  What does Davita do for free?   What else will Davita sell their patients?  They are starting to buy up employee health clinics, nursing homes and other practices.   This is a company with outside policies and controls, and with inside sales.  This is a company that will profit off our local dialysis patients, and bring nothing to our local or State economy.  The money will go to the corporation/stockholders.  Living, breathing, suffering and captive Patients become cash cows for Wall Street Commodities.

Where do patients fit into the Davita scheme?  Good question.  If they are harmed or have issues with their care or safety, the complaint process is complex, and my understanding is that complaints often go into a black hole.    The End Stage Renal Disease Network fields these complaints.  Davita has representation on that network, so complaints essentially go to the people who are being complained about.  If a complaint somehow reaches a state health department, they might do an investigation, but generally the investigators are nursing home inspectors, and they do not know the specialty of dialysis.  If CMS (Centers for Medicare Services)  is brought in and they make recommendations, Davita may or may not comply.  Since there are no sanctions, there is no accountability and no incentive for Davita to fix problems. Then if a Davita clinic does not like the patient, because they have asserted themselves about substandard care or complications, Davita may just dismiss them. Some  patients that have been both harmed and dismissed by Davita clinics were also blackballed from other dialysis services.  Since Davita will purchase 3 dialysis clinics business, in Bangor, Ellsworth and Lincoln, ME, all inpatient EMMC services and home dialysis services, this leaves local dismissed pateints out on a limb….facing either death or horrible long commutes to distant clinics.    None of this bodes well for patients.

Davita answers to their stock holders, not to their patients and as importantly, not to our community or service area.  It is very clear what this company’s priorities are.  Patients bring money to the company, and by cheapening dialysis care, they make their stockholders happy.   Ask Warren Buffett.

Maine does not need Davita. They are exactly what is wrong with Healthcare today. Davita is a prime example of why healthcare is bankrupting this country and our States.    The fact that EMMC service area patients may recieve cheaper and lower quality care is reason enough to escort them out of State. We need to tell them “Thanks anyway, but we value our citizens too much to invite you in.”   Maine welcomes business..there is a sign near the New Hampshire border saying “Maine is open for Business”.  If that business has potential to harm our citizens or suck money out of our economy, we do not welcome them.  I look forward to seeing the back side of Davita going over the NH border….headed back to Colorado.

Addendum  http://bangordailynews.com/2012/05/27/business/who-makes-the-most-50-highest-paid-ceos/

check out who is #46 on the list of the highest paid CEOs in the US…all made on some of the sickest patients in our country, and on Taxpayer dollars to care for them.

The 1967 graduating High School Class of Stearns High School, Millinocket, ME  was a very close bunch.  Like all young people, we  each moved on with our lives. Most of us moved “away”, but part of our hearts stayed in Millinocket.  We sometimes lost touch, but a lot of us tried to go to the reunions as often as possible.  I saw my friend Mike Simone just a couple of years ago for the first time in years.  It was like those interim  years never happened. He was such a sweet guy and he loved his hometown and classmates.   We talked about life, his diabetes and old friends.

It was with great sadness I read my classmate’s obituary today.  I just visited with him a little over a month ago.  I was contacted and told by a co- classmate that Mike had MRSA.  This was not good news.  Mike was a big man with a big heart and he had problems with diabetes.  He was considered “high risk” for infections, although it is my belief that infections can be prevented for ALL patients in Hospitals.  It is their job!

Mike had a cardiac valve replacement done last fall. His preoperative MRSA screening test was negative.  He had the heart surgery because he needed a knee replacement and the heart  problem  was fixed to prepare and bolster  him for the second surgery. He told me he never felt right after the heart surgery.   Then several weeks later, when he took off his shoe and sock, there was a tremendous odor. He hadn’t felt pain because he had neuropathy and decreased sensation in his feet.   He  found pus in his sock.  His toe was infected with MRSA.  He was seen by his local doc and Hospital and then transferred to EMMC here in Bangor for further treatment.  He had to get his toe amputated, and the pervasive MRSA infection was also in his blood and in his heart….his newly repaired heart.  This was very serious business for Mike.  His appetite disappeared, he was unable to get out of bed and his strength was gone. The damage to Mike’s body caused by MRSA, and the high powered antibiotics needed to treat it  was much worse than what years of diabetes had done to him.   His treatment at EMMC lasted a few weeks and then he was told “there is nothing more we can do”.  According to his wife Carolyn, his liver and kidneys had begun to fail.  I advised them that perhaps the Joslin Clinic, with their cutting edge diabetes interventions, could help.  Mike just wanted to go home.  He missed his family and  his lifelong community of friends.  His wife said that he already had his finger on the pulse of all ‘goings on’ at his hometown hospital just a day after his transfer back ‘home’.  He saw everyone who roamed the Hospital halls and talked to a lot of them.   He was where he wanted to be. 

I visited Mike just a little over a month ago in our hometown hospital.  I carefully washed my hands and donned gloves and sat with him. We talked again.    His once large arms were skinny and  had wrinkled  sagging skin on them.He couldn’t get out of bed and he was very weak.  He had become a shadow of the Mike I knew.  But,   he was comfortable, and content and glad to be home.  When I asked if there was anything I could do for him, he said  “I don’t think there is much anyone can do for me”.   He had accepted what was coming.  The following was in this morning’s newspaper.

Michael J. Simone, 67, passed away May 13, 2012. A complete obituary will be published in a later edition of the Bangor Daily News. Arrangements are by Lamson Funeral Home, Millinocket. Messages of condolence may be expressed at www.lamsonfh.com.

Mike died on Mother’s Day, May 13.   I am so saddened by this news and for his family.  He died in the same Hospital where my father contracted MRSA.  Today, I grieve Michael Simone and my father, both victims of preventable Healthcare Associated MRSA infections.

My renewed passion to STOP THE INFECTIONS NOW has pulled me back to my blog and other places where I will share Mikes story (with both his permission and his wife’s).  I became part of a 10 member panel to help determine the gaps in MRSA Screening Research.  I will tell about Mike and Dad to the  other 9 members, all with impressive MD resumes and who manage insurance companies, influence  CDC recommendations and teach at medical schools.   I will share these tragedies anywhere, and with whomever I think  can make a difference.  At the end of the month,  I will attend a national conference on the reporting and data of these infections.   Mike’s  infection and my father’s will not be buried  in data. They will be reported in person.

When I visited Mike, I told him that I was sorry this was happening to him.  My heartfelt apology was on my behalf and that of others who really care about stopping infections.   We hadn’t done enough yet to prevent Mike’s infection…it’s time to stop metering out prevention in fits and spurts.  We need to go “ full court press”  to eliminate HAIs.

Addendum.  A few days ago, I spoke with Mike’s widow Carolyn.  She is doing well and taking stock of Mike’s life and healthcare journey.  Like most of us who have had similar experinces,  she is still seeking answers about Mike’s debacle.  She believes that patients are not warned enough about the possibilities of MRSA when they are asked to give consent for the surgery.  She also had great concerns about the lack of education for the patient and their families and visitors about MRSA.  She made a plea to me to get the word out on these concerns.  I made a promise to Carolyn that I would do my best, and spread the word on her requests and concerns.

On December 23, just 4 days ago, I had Robotic surgery to remove my Uterus, Fallopian tubes, Ovaries and lymph nodes because of endometrial cancer.  After surgery, I got encouraging news that  most likely I will not need further treatment for cancer. I will get further information on this at my recheck appointment on January 11.  I am forever grateful to my surgeon, and my entire Maine Medical Center healthcare team for exemplary care and a good healthcare outcome.  My great outcome didn’t come  by accident.  It was becasue of  my Healthcare Team’s  attention to detail and careful, safe care.

Just a few weeks before my surgery I sent the following Holiday greeting to my Healthcare team, through an assistant Chief Medical Officer at Maine Medical Center.  My hope was that this letter would be widely distributed. With a few changes, this letter could have come from any empowered patient.  Empowerment is essential in patient safety, but it does not remove the fears that all patients face.  Being frightned is human nature and is experienced by everyone when facing surgery or other medical endeavors.  My intention in writing this letter was not just to get “special treatment” for myself.  I expect special treatment for every patient.  I also wanted to point out the vulnerability that all patients experience and how we put our complete trust in our Healthcare team. 

This letter was distributed and widely read at MMC.  I had visits from nursing and department leadership and staff members and they thanked me for this letter and asked for me to come back to address some of their groups.   Iwill do this gladly and proudly.  I am forever grateful for the safe and excellent care that I recieved at MMC. I believe this was accomplished by hard work, experience,  dedication and partnership with me throughout my healthcare experience.   

Here is my Holday Greeting to my Healthcare team……

Happy Holidays to my Hospital Healthcare Team                             December 23, 2011

I haven’t met any of you except my GYN/oncologist before I came here today to have surgery, and yet, I trust you, as my healthcare team, with my life.  I am one of you and I am one of “them”.  Today I am a patient (them), but I worked at MMC in 1970 for a few months as a freshly minted RN.  Your ER and your Hospital have grown so much that they are no longer recognizable to me.

Today my dedicated husband Mike is with me and will stay by my side and be my advocate.  I am his wife, and I am also a mother, grandmother, daughter, sister, aunt, niece, cousin and friend to many.  Before becoming a trusting but vulnerable patient today, I have been the “strong” one for my family, friends and many thousands of patients during my 41 years as an RN. 

Your work is more important to me than you know.  I have had a tragic personal experience with Hospital care. In 2009, my own father died of Hospital Acquired MRSA Pneumonia that he contracted in a small Maine Hospital.  It was an earth shattering experience for me and my family.  So, since then, it has become my quest to make healthcare safer for everyone by working as a patient safety activist.  My work has taken me to the State and Federal DHHS, and the Federal CDC. I affiliate with the Consumers Union Safe Patient Project.  I volunteer my time to make healthcare, and particularly Hospital care, safer for everybody.

The work that you do is challenging even on your best days. I know that it seems downright chaotic and impossible some days.   Keeping me safe isn’t easy; it will take a lot of work, skill, coordination, collaboration, communication and care.  Care is the key word.  In current political discussions on Healthcare…the true meaning of care seems to get lost.

So, here I am, meeting you all, for the first time today.  This visit wasn’t an option.   I came to MMC to get rid of cancer. Admittedly, I am frightened.  Certainly in that respect, I am exactly like all of your patients.  I chose your hospital and doctors after a great deal of research and comparison to others.  I trust you to keep me safe.  I need your expert care. So, please………  Take the important “time out” before surgery and complete that check list. Give me the appropriate pre op antibiotic and give it at the right time. Keep me warm and clip, don’t shave my hair.  Tell me your name and I will tell you mine, on every contact.  Do it even if I scowl after a half dozen times.  Be patient with my questions, because I don’t know the answers if I ask. Listen to my concerns and my husband’s.  Remember that although he is not medically trained, after 40 years of marriage, he knows me a whole lot better than any of you do. Once I am in my room, please don’t ask him, my lifeline, to leave my side.   He will take a load off your nursing staff and help keep me safe.    Wash your hands every single time you touch me, my stuff or my immediate environment.  Please, help to keep me and my room clean thereby protecting me from infection.  Pain Control is very important to me. Use the 5 Rights for every medicine you give me. Remove my urinary catheter as soon as possible. Involve me in all discussions about my healthcare plan and even if something has gone wrong.  Secrecy erodes trust.  This is a short list of steps that can keep me safe and sustain my trust. .   Push me hard to walk, cough, deep breath, and take fluids. I plan to cooperate with this plan, but I may whine a little.   I want to be out of here as soon as possible, hopefully in just one day.   It’s not that I don’t appreciate the hospitality and your tremendous efforts, it’s because I know it is the best thing for me and my health.

I am giving you my trust, gratitude and sincere admiration for the incredible work that you all do.

In return, you are giving me the best possible Christmas gift today.  You are giving me the safe, clean and expert healthcare that I need, so I can get back to my family for Christmas and begin my recovery from cancer and surgery.  I plan to be the “strong” one again in no time.

Thank you and Happy Holidays to all of you and your wonderful families. 

Sincerely, Your Patient, Kathy Day RN, Patient Safety activist and advocate

  December 1, 2011

Not anymore.   I have worked very hard to be patient and positive cancer patient over the past month.  That is exactly how long I have had to wait to be seen by my carefully selected Gynecologist/oncologist.  I was given a diagnosis of Grade 1 endometrial cancer on October 19, 2011, by my local gynecologist.   I was seen 2 days prior to that for some intermittent scant bleeding since the first of the year. The bleeding didn’t really bother me except that I knew it was abnormal for it to continue like that and for so long.   I am post menopausal.  Robotic radical hysterectomy and lymphadenectomy was recommended for this cancer.  There is no gynecology/oncologist in my community.

When my personal gynecologist gave me my diagnosis, I asked how urgent this was.  She advised that I have the surgery within a couple of months. I made phone calls, talked with medical/nursing/surgical and patient safety experts, sought out infection rates for the hospitals I considered, and did a ton of online research.  I took 9 days to make my decision.  It took 4 days for my local doctor’s office to get my appointment for the consult, and on November 1, I was given an appointment for November 30.  On November 2, I called the new doctor’s office and asked why there was such a long wait.  They assured me it was not unusual and that was the soonest possible appointment.  I called a second time a little later in the month to see if they could put me on a cancellation list to get in sooner.  That did not happen.  At that time, an office manager told me that surgery was usually scheduled within 2 weeks of an appointment . I was also told this when I was doing my healthcare “shopping”.  She also told me that one of the office nurses would be in touch with me within a week or so.  That call didn’t come, so I called the doctor’s office again on Nov 29^th, the day before my appointment, and the office nurse (patient navigator nurse…like I am a ship lost at sea) finally called me at around 3pm that day…less than one full day before my appointment.)  This was about the 3^rd time I was told by personnel from that office that surgery is usually scheduled about 2 weeks out from the consult appointment. Usually is the key word here.   And, this was my first opportunity to talk to my new provider’s office about my cancer and my concerns.  I did feel lost at sea for the whole month of November.  Perhaps contact from the doctor’s nurse would have been a comforting and considerate gesture about a week or two into my wait for my appointment.  I don’t think that I am the only cancer patient that ever suffered a great deal of anxiety of my new cancer diagnosis and the need for major surgery. Patient centered care should be all about the patient, and allaying their anxieties.

I was hanging on, being patient and thinking that a surgical date two weeks after my appointment wouldn’t  be too bad.   But, I was still very anxious and stressed over that wait, and at one point, I had even asked my local doctor’s office to call on my behalf to see if I could get in for an appointment sooner….no luck on that either. She refused to make that call because she “has no control over the other office’s practices”.  ‘Thanks a heap’ I thought.    

It has been 6 weeks since my diagnosis and today I was given a date for surgery by my carefully chosen specialist…January 6, 2011……….another 5 weeks and one day from today.  My wait for surgery has essentially doubled.  This is absolutely outrageous and I am livid!   I am definitely questioning my choice of practices.  If I had chosen the practice I was considering in Boston, my surgery would be completed by now, and I would be recovering.  I hate making mistakes….and I hate waiting with around with cancer inside me even more.   Both of my doctors have assured me that the cancer I have is the “best” cancer I could get.  Why is that so hard to swallow?  Because NO CANCER IS A BEST CANCER!!  WHEN A PATIENT RECEIVES THE DIAGNOSIS OF CANCER OF ANYTHING, THEIR  FIRST AND BIGGEST PRIORITY IS TO GET RID OF IT AS SOON AS POSSIBLE!

When I was carefully shopping for my new doctor, their patient representatives (people who answer the phone) said they generally schedule surgery within 2 weeks of a consult. I was told the same thing during several subsequent telephone conversations with that office.   I was mislead and misinformed .  I planned my life around that information and fully expected to have my surgery completed in advance of the upcoming holidays and to be recovering over the holiday. What a great Christmas present that would be…to have my surgery over with, my cancer removed and my recovery progressing.   Apparently, the office staff was unaware of the following reasons that could delay a surgical date.

1. It is the Holidays and the doctors have families and will be taking time off. (I fully expected to NOT interrupt anyone else’s Holiday because I thought my surgery would be well over with and I would be spending my own holiday recovering.)  When I was told this, it was the only time I was snarky and nasty to the doctors staff.  I responded with “I am sorry my cancer came at an inconvenient time.”
2. Some other people need to have surgery before the end of the year because if they wait until 2012, they would have to meet another insurance deductible.  (I wonder if those other patients have a new cancer diagnosis, and if so, I certainly would not want to displace them in the doctors schedule, but if not…….this simply is not reason enough to postpone or delay MY surgery and the possible cure of my cancer)
3. The doctors only have certain blocks of time to do these robotic surgeries in the operating room where they practice and scheduling is tight.  (If this is happening, then the Hospital needs more surgical space or more robots and/or they need to get more qualified GYN/oncologists in this practice.)  This should not be my problem.  My cancer is my problem.

Wow, these are some pretty crazy reasons to make me…a newly diagnosed cancer patient, wait another full 5 weeks for surgery.  I have always proclaimed, I don’t want special treatment, I just want efficient, safe and timely care. This is an expectation that every patient should have.    This whole experience makes me really sympathetic toward poorly prepared, uninformed, intimidated, frightened and passive patients.  How must they be treated when a big mouth with great health insurance, like me, is facing all of these hurdles.   Every patient needs a course on Patient empowerment.

I really liked my new Gyn/oncologist.  She was very patient with my concerns and questions and she spent a great deal of time with me.  I am pretty sure I went over my allotted/scheduled time and into someone else’s time.  My biggest concern is that she did not seem to be aware that MRSA colonization is a real and big threat to pre operative patients and it is important to be screened far enough in advance of surgery to allow for decolonization and a possible change of preop antibiotics.   My request for MRSA screening kind of threw her off, but she was willing to put me in touch with the Hospital epidemiologist.  I am waiting for him to call me.   The other concern was that she told me that my cancer is slow growing and it is not a risk to wait.   I don’t believe she can know that for sure until she has my female organs and lymph nodes in her hands and they are examined under a microscope by her and a pathologist.  She has no way of knowing how deep my cancer has grown  into my endometrium or uterine wall or if other organs or surrounding tissues are affected by it.   I know this because I have researched my diagnosis and my surgery constantly since the day I got my diagnosis.  I know doctor said these things to comfort me and to allay my fears, but I am afraid…and I’m afraid that it didn’t’ do any good. By the way, my tissue sample had not been sent to this practice before my consult, so the new second tissue exam/biopsy had not been completed. She told me that was a problem within her office for not requesting it and she would look into it.

My new office is setting up pre operative testing in Bangor so I don’t have to travel to Portland for a pre op visit. So that is nice.  I asked that they send me the surgeon’s consent form so I can preview it before signing on my surgical date (whenever that might be).  Hmmmm, she said, nobody has ever asked for that before, and she would have to check on it.  I told her I would actually like to read it before I am in the pre op area under a great deal of stress or under medication.

Just a few more crazy things that have happened recently during my healthcare journey…. I was nearly given the CT scan copy disc of another patient by my local medical center imaging department.  The alertness of the lady in the office saved me from receiving someone else’s CT scan on a disc and saved that other patient from a HIPPA (medical information privacy) violation.  The person I spoke with earlier,to get this disc, did not verify my birth date. This is an example of how important patient identification information validation is. Also, the copy of my medical records from my regular doctor did not have any lab, xray or other diagnostics from 2010 or 2011.  I thought those things might be important so I went back to get them.  My new doctor didn’t ask for my records.  And, (this is actually kind of funny if I wasn’t so angry) Yesterday, after Mike and I were put into a conference room to meet with the doctor ,prior to my exam, there were 3 fire alarms, one after another.  We were forewarned that they were testing the fire alarm system that morning.  During the first alarm we stayed in the room.  During the second and third we had to evacuate.  The doctor had started our consult, but when the second alarm went off, she had gone to answer a phone call.  During the third alarm, we were in the middle of the consult.   This was just too many interruptions during a single consult…..Chaos aplenty….

Summary.  I was given a diagnosis of endometrial cancer Oct 19.  I had a few minute conversation with my personal GYN doctor about it on Oct . 20, while I sat in a pool of blood and pus from an abscess I&D (incision and drainage) that I’d just endured. Jeesh, so much of women’s care is still barbaric and messy.   Then I was hung out to dry for a full month…with my questions and concerns. My consult appointment wasn’t until November 30, over a month after the referral was made.    I fully expected to be recovering from my surgery over the Christmas holiday because that is what I was told several times by my new doctor’s office.  Now I am hung out to dry again until January 6.  But, they “ are working on it” to see if they can make it happen earlier.

November 2, 2011

I spent a sleepless night, suffering with heartburn and anxiety.  After I pulled myself together in the morning, I started making phone calls.  Passively waiting for a “better  surgical date” for surgery is not an option.  I needed to take action for myself.  I called 2 more Hospitals in Boston to see if they could send me a rescue boat.  One was encouraging and will call on Monday.  I also called my doctors practice administrator.  Her name and number were given to me by the woman who called with my surgical date.  She was very nice, asked a ton of questions and sympathized with my concerns.  She is also looking into getting an earlier date.  Then I called the assistant Chief Medical Officer of Maine Medical Center who is in charge of Patient Safety and HAI prevention, Patient satisfaction and improved quality of care.  I worked with this gentleman and scholar when I was on the Maine Quality Forum committee for MRSA prevention.  He is a serious and compassionate doctor and I was very glad to receive his return phone call.  If anyone can help me, he can.  It is good to know effective and smart healthcare leaders like him.  It’s too bad every patient did not have the same privilege.   My new doctor had already emailed him about my requests for pre operative MRSA screening and possible decolonization and pre op prevention of MRSA.   His call gave me a lot of encouragement.

I’m beginning to wonder if I might be the most challenging patient they have had in quite some time.  I hope so, because the things I teach them by being empowered (difficult and demanding may be the words they are using) may have a positive impact on other patients.  My actions might improve my healthcare experience, and it might help others as well.  My ears are burning. That must mean that many people in Southern Maine Healthcare systems are talking about me.

I am not a patient patient anymore.  I am a stressed and frustrated patient, but I am also in full battle mode for my best healthcare experience.    I do worry that this wait and the stress will affect my prognosis.

 In my fantasy world, once a patient is told they have cancer, things move along very quickly to give them the fastest and best possible treatment necessary to get rid of it. That is how it is in on Lifetime Movies and in novels anyway.  Once the patient has been given the alarming news of their cancer, within a week or so, every local and nationwide expert is at their service and helping them to beat the disease.

Four  weeks ago tomorrow (Oct 19, 2011), I got a call from my Gynecologist telling me I have Grade 1 endometrial cancer. I had gone for a check for some abnormal bleeding and a biopsy had been done 2 days prior to this call.  It is a call that nobody wants to get.  I didn’t flip out or faint or anything, but I was quite shocked and frightened by that call.    My personal Gyn’s recommendation was to seek robotic assisted total hysterectomy.  That means that a doctor spends his/her  time at a console with a magnified 3 dimensional image on a screen and he/she is controls the 4 arms of a Da Vinci robot, while it removes my uterus with cervix, my fallopian tubes, ovaries and some surrounding lymp nodes.  I had the presence of mind to ask how urgent it was to get my cancer taken care of.  She said certainly I would not want to wait a full year, but that I probably should get it done within a few months.

Her response to my question allowed me a little time to do some online research, consult with my Patient Safety colleagues, and make some phone calls.  My Patient Safety activism has taught me about what and who to seek out and the appropriate questions to ask.  I did my homework and made a determination that a GYN/oncologist in Portland, ME and Maine Medical center would be my choice. It is tough to decide who to trust with your major surgery.   I called my personal GYN’s office again and asked them to make the referral.  Apparently, we patients are not accepted on a self referral.  I know, because I tried.

I took  9 days to make my choice. It took 4 more days to get an appointment.  Total so far 13 days.  On November 1, I was given an appointment on November 30.  Tomorrow it is 28 days (4 weeks or 1 month) since I learned of my cancer.  November 30 will be 41days.  Then I don’t know how long after that before my surgery will be scheduled.  That “couple of months” recommendation is frittering away.  I honestly never dreamed I would have to wait for a full month to see an expert GYN/oncologist for cancer surgery.

I am a little nervous about this wait.  In fact this wait is agonizing.  I took a day to cool off before I called my carefully chosen Gyn/oncologist’s office to ask about the wait.  I spoke first with the intake people.  I was put through to the office manager, so I still have not spoken to a nurse.  The office manager was calm and kind and assured me that they “triage” all of the patients that are referred to them, and schedule accordingly.  I expressed my concern that my cancer could grow and spread and perhaps that would impact my healthcare outcome.  She then offered for me to be seen 1 week earlier by a different doctor (a male).   I decided to stay with my chosen doctor because she is a woman and because of her experience.   

A few concerns have grown since I made my choice.  My doctor is only in her office one day a week.  I’m not sure if that is because she is so busy doing surgery or other OB/GYN/oncology things.   My other worries and concerns would fill a book.  I might write about them at a later date.

I have decided to use my time before surgery to do some proactive things.  I have spoken with 2 expert GYN surgical nurses.  My list of questions for both the doctor and the Hospital has grown exponentially.  They are going to hate to see me coming, but I have a right to know these things….so does every other patient.

I am also trying to eat better …less sugar and fat.  That is a tough one for me.  I’m also trying to drink more water. 

I continue to study my condition, alternative treatment (there aren’t any), complications etc.

I am walking every day. 

I am purchasing a few things that the “Hystersisters” online recommend. The Hystersisters is an online forum of women who have had or are facing hysterectomies.   I got one of those picker upper thingys that old people use to pick up things from the floor or reach into a cupboard. Apparently, bending and reaching can be painful after hysterectomy.   I will also get an abdominal binder.  I had no idea those were still in use, but the Hystersisters swear by them.  Apparently these lightweight girdle type garments help to prevent fluid buildup in the belly after surgery.  Also, one of these sisters said that gravity is not your friend if you have a big belly….and I do….and this binder can help prevent discomfort when bending, standing etc.  

I am sewing comfy PJs.  Jonnies will just not do for me.  I need better and bigger coverage.

Soon I will pack my little dittie bag for the Hospital to include a warm afghan, socks and slippers, a personal photo of my family and dog, my journal, my cell phone and charger, and my Patient Pod, a brand new product that a co activist is promoting and I will use one to help her promote it.

So, I don’t really know if this wait will impact my prognosis, my cancer, my treatment or anything else, but since I don’t seem to have a choice and we can’t control everything, I am doing some things in preparation for my surgery, my hospital stay and my recovery.

And, I will celebrate Thanksgiving with my family.  That is very important.  Who knows what condition I will be in at Christmas?  That is one more demand I will have…I will not have surgery close to a weekend (sometimes means less staff and longer stays) or late in a day (may mean an extra night in the Hospital or a dirty operating room or instruments) or during a holiday week (less staff, less safety, sometimes longer stays).  So, I have a very huge hope/expectation that I will be the first surgical case on a Monday or Tuesday sometime prior to Christmas week.

This is what waiting is doing for me…..although it is agonizing….it allows me time to plan my safest healthcare experience.  I still hate this waiting…………………………..

I have learned that although I am a smartie pants patient safety activist, and I know all the correct questions to ask and who to ask, the answers are hard to come by.  The most transparent places I called were Maine Medical Center and Eastern Maine Medical Center.  The hospital I called in Boston had attitude.  I asked their infection control nurse what the infection rate was for robotic assisted hysterectomies, and all hysterectomies and I was told “well, I know they are below the National average”.   Exactly what does that mean?  I have no clue.  She also said that they are not required to report those numbers to the public, but in a year, they would be doing that.  I told her I have cancer now and I need surgery, so that report in a year would do me no good.  Then she went on to tell me she did not have the authority to give me that information.  When Iasked for someone who did have the authority, she said I would have to wait until Tuesday(this was the previous Thursday) and call back, but she was not certain I could get that information.  I did not call back.  I was completely turned off by their lack of transparency.

Both of the Maine Hospitals I called gave me the information they had on infection rates for hysterectomies, and EMMC even had it broken down for robotic assisted hysterectomies.   Both were concerned compassionate and friendly.  It might be because I know both of them from my MRSA work.  Even so, I appreciated their honesty and candor.   The only problem I had was finding out about other complications of their robotic assisted surgery cases.   I think if I had persued it further, I could have found out, but sometimes there is such a thing as TMI….too much information.  TMI can be kind of frightening.

So, although the original plan was to go to Boston and engage the doctor who did the first robotic assisted hysterectomy in New England, I have changed my mind.  That is the perogative of patients/healthcare consumers.  I did my homework.  I also asked my personal local doctor her opinion.  She was  very candid.  Her own husband died of melanoma this past June.  She basically said that given the choice of going to Boston or Portland (she and her husband went to both places), she would choose Portland.  Her comments were that the Boston teaching hospitals are world class but they love having you come there to learn ‘on’ you.   She went on to say that Maine Hosptials have the focus of Patient Safety.   This was reassuring to me.  She is a wise doctor.

So, after all my struggles and conflicts with Maine Hospitals and the Maine Hospital Association over MRSA, I will put my trust in Maine Medical Center and a GYN/oncologist there to take care of me. I am hoping that my activism has made Maine Hospitals safer places.   I have the expectation of a very safe, infection free experience.  I am scared enough about the risks of anesthesia, complications, post op pain,  recovery and beyond…..I really don’t want the added concern of preventable harm.  Eastern Maine Medical Center would have been an option if they had a GYN/oncologist, but they do not.  MMC does and that is where I will go.

I encourage all potential patients to call the hosptials they are considering and ask about their infection and complication rates.  Look the Hospitals and Doctors up on Healthgrades.com, or Why Not the Best. com websites to see their ‘grades’.  Ask around, talk to your doctor.  Ask him or her “if this was you or your mother, with exactly the same risk factors, where would you go for care?”    No question is a stupid question and all the answers (or lack of answers) are important in making your best healthcare choices.

So, my first lesson in my personal Healthcare journey  has been that although one can know the right questions, we can’t expect to get all the answers…and in some cases we can’t expect any answers at all!  But, the answers we do get and the way they are delivered can have a huge impact on your decision.

I am a privileged and lucky human being.

Eight days ago,  I was diagnosed with Uterine Cancer, stage 1.  Most would not consider getting cancer lucky, but it could be a higher stage, a more aggressive form, and in a worse place like a lung or pancreas.  I own this cancer and if all goes as expected, having a robotic assisted hysterectomy and enduring a brief recovery will be the end of the treatment for it.  Yes, I am lucky.

Other ways that I am lucky are that I have a dedicated supportive husband who will stay by me through the entire ordeal, unless I am too bitchy and drive him away.  I will try my best to be nice.  I also have 2 supportive sons, other great family and friends and a warm lovable lap dog who will keep me company (and my lap warm) while I recover.  I have a comfortable home and very good health insurance…..yes, I am lucky.

I worked as an RN most of my adult life.  After my father died of Hospital Acquired MRSA pneumonia 2 years ago, I became a volunteer patient safety activist.  I have talked with so many people who have had devastating injuries or who have lost loved ones because of harm caused by Hospital care.  I have also talked with many who have had exemplary, almost miraculous experiences when being cared for in Hospitals.  Obviously,  I am shopping for the exemplary Hospital experience.  Again, I am very lucky to have a bit of time to make choices and keep myself safe!  My surgery is necessary and somewhat urgent, but not an emergency and that is an advantage.

How do I manage to get the exemplary experience….how do I get to be one of the lucky ones in this?  Is it luck or planning?  I believe it is planning and empowerment.

This is where my Patient Safety colleagues come in.  I have worked with and learned from the most experienced, bright and empowered patient safety activists and advocates in the country.  In the Consumers Union Safe Patient Project, we have doctors, lawyers, nurses, a construction contractor, medical policy analysts, an actress, data analyst, a professional fund raiser, editors, writers, psychologist, an airline attendant and others.  All are either victims, or survivors of victims of medical error or hospital acquired infections. They have all learned from their horrifying healthcare harm experiences, and they share their experiences and knowledge with ALL consumers, each other and ME!   Each and every one of them has taught me important parts of being an empowered and therefore safer patient.  I do not stand alone in this endeavor…I am backed by the most impressive Patient Safety activists in the US!

Some of the gems of knowledge I have gathered from my colleagues and used so far are…

1. I have the infection rates for my surgery in 2 of the 3 hospitals I am considering
2. I have read the reviews and “grades” of all the doctors and the Hospitals I have considered
3. I have networked with others who have had this surgery.
4. I have learned everything I can about the surgery, the options, the possible complications, the alternatives (not too many with cancer), the risks, the recovery, and what to expect post operatively ( before even seeing the specialist)
5. I will started my journal, which I will continue while hospitalized
6. I will make an appointment to complete a living will and a durable POA with our attorney
7. I will study my consent form and add or take out the parts I am uncomfortable with
8. I may bring signs or have a tee shirt made identifying myself as a person who demands handwashing  “Wash first or don’t touch me!”
9. I will ask for MRSA and VRE screening pre operatively, and I will use Chlorhexidine antiseptic showers for 3 days pre op.
10. I already know exactly who will perform my surgery (no first timers will practice on my old body)
11. I have my list of questions prepared for the day of my surgical consult.

I am still doing my homework and will be able to add to this list soon…

 I just came back from the 2012 Consumers Union Safe Pateint project Summit.  I just spent almost 3 days with the most passionate patient safety activists in the country.  I shared my new diagnosis with several of the CU group, not for sympathy, but to gain expert advice and moral support.   During our general meetings/presentations, we discussed at length EXACTLY what I am challenged with now as a healthcare consumer/patient.   The suggestions from these experts have become my bible…for my own safety.  I have worked alongside them for over 2 years, to benefit others and to empower everyone to have an exemplary healthcare experience.   They are candid, experienced and they care. They all give their time, hearts and souls to this work.  These are the people who have given me the best advice any patient could possibly seek for their safest healthcare experience.

These are my trusted friends and Patient Safety colleagues….

I am truly lucky.

In the near future, the Maine Health and Human Services Committee will hear arguments for and against LD 267.  This is my proposal, sponsored by Representative Adam Goode of Bangor and 8 other cosponsors that will improve Patient Safety in Maine Hospitals.

MRSA is deadly.  It is easily spread in hospitals and in the community.  Both of the most common strains of MRSA, Hospital Acquired and Community Acquired are spread in hospitals and other health care facilities.  Both can cause deadly infections in the blood stream, lungs and other body parts and systems.  Health care workers, if not using the appropriate contact precautions, can carry MRSA on their hands and clothing and on medical equipment, from one patient and/or their surroundings, to another patient and/or their surroundings.   It is happening every day in Maine hospitals and without proper screening and precautions, it will continue to happen.

Ideally, every patient should be screened for MRSA on admission or within a couple weeks prior to admission, allowing for decolonization prior to admission and/or invasive procedures.  But, short of testing ALL patients, high risk screening is necessary.  LD 267 lists the most widely accepted list of high risk patient populations.

1. Patients who have been in a nursing home or hospital in the past year.

2. All ICU patients

3. Patients who have been in a prison in the past year.

4. Dialysis Patients

5. Patients getting surgical implants.  ie. knee replacements, hip replacements, cardiac valve replacements

6. Patients with open lesions with redness, swelling, and other signs of infection

7. Patients with known history of MRSA

This list includes not only patients who are at risk for being a carrier or “colonized” with MRSA, but also those who are at risk of becoming infected because of the procedures or departments they are facing when hospitalized and those who may already be infected.

CDC recommends isolation or cohorting patients all known  MRSA colonized or infected patients.  If a patients status is unknown, hospitals are not taking appropriate precautions.  Ignorance is not bliss when it comes to MRSA.  Ignorance is deadly when talking about MRSA.  It is imperative to know a patients MRSA status, in order to protect them (with decolonization) and to protect the patients they are roomed with.

The recent Maine MRSA prevalence study revealed that nursing home patients had an average of 20% prevalence of MRSA colonization.

http://www.mainequalityforum.gov/2011_Final_HAI.pdf

This is alarming.  Much of MRSA is coming from nursing home patients.  We need to screen every single new nursing home patient on admission to their nursing home.  Education needs to expand and be emphasized in long term care facilities.  Our elderly and disabled deserve better than they are getting.

I’ve heard repeatedly that MRSA “isn’t that big a problem” in Maine Hospitals.  “There aren’t that many patients with MRSA”.  That is a perspective.  Considering the thousands of patients going through our larger Maine medical systems every year, the number of MRSA vicitms may seem insignificant to hospital representatives.  But, ONE single MRSA victim is one too many. The Federal Health and Human Services Department and the Federal CDC implore Maine Hospitals to aim for ZERO.  There is no way to do that without using Active Detection and Isolation and without actually counting every single infection in our hospitals.  Then publicly report those cases.  Let the victims, patients and health care consumers decide what is a significant number of infections and what is not.

Please support Maine LD 267 to prevent MRSA.  And also support the right of all patients to have a patient advocate with them 24/7 with few exceptions.