Untangled Health

Consumers Unite To Drive The Changes We Need

Tag: TrumpCare

I found my Peeps. Why I joined The Right Care Alliance

To build a new system we need the voice of millions struggling to survive as they try to understand, coordinate and afford America’s health care resources

 

Since becoming disabled I have dedicated my time to reforming our healthcare system. My drive emerged from my experiences  living with diabetes and other complex co-morbid conditions since 1966 coupled with my experiences working within our healthcare system for thirty-three years as a hands-on the caregiver, administrator, program leader and HIT visionary. To date: After five years of dedicated personal time I located only one organization –PCPCC that brought all of the Stakeholders together necessary to alter a system that has failed so many. My work with PCPCC brought me to Washington DC and opened other opportunities to influence legislative language, such as the variety of submissions to CMS for defining the Patient Centered Medical Homes. That said, where the work and effort was worthwhile, I have reached a personal conclusion that the American Health Care Apparatus needs to be designed and implemented from the bottom up. Without soliciting opinion, educating the people about our failure in moral values we will not realize our dream. A long-time fan of Continuous Quality Improvement in medicine I notice a missing feed-forward element in design when it comes to our national perspective: The Patient Perspective. Much is celebrated about patient-family inclusion in health care delivery design yet I fear what we celebrate is often the result of Service Excellence Performance Surveys, JCAHO and CARF reviews, NCQA Accreditation Surveys and other attempts to qualify and quantify processes that have not fulfilled  my personal criteria for “Going to the people”. If we are going to do this thing: We need to start over. The Right Care Alliance is on track and I am thrilled to assist with the integration of the proper minds and voices necessary to build a functional health care system.

Since becoming disabled in 2012 I have discovered what I consider to be a lack of attention to those consumers who are the most under-served; at times I fear a lack of respect for their capacity to contribute. My sense is that the arrays of NFP organizations working to define methods for health care reform and specify a concise mission are struggling with their identity (excluding folks like Families USA). Organizations such as The Society for Participatory Medicine actually have membership fees which prohibit some from joining in the effort. I participate in the private conversations among leaders and have brought this to their attention. They do however have a scholarship program for membership dues. Where the intent is respected this is hardly the mechanism to attract contribution from the community or patients who are actually the consumers accounting for 50%-70% of America’s health care budget.

When I analyzed the membership roster of S4PM in 2015 I found that 32% of their membership identified themselves as patients first. Confused, I brought this to their attention. One year later, many more patients emerged. These were mostly individuals who had more than 16 years of education and were actively engaged in other professional activities. We need these people, but once again they hardly represent the grass-roots of the healthcare services consumer.  Their mission is decidedly not health care reform, but focused on bringing patients and physicians together to form collaborative medical teams. We need these people in our discussion as we create our new system. However, I suggest their priority is not the same as the System Reformer for without a system that guarantees a bio-psycho-social care plan to all Americans we have failed. Other Patient-Centered Organizations such as Patient’s Like Me are providing a service and at the same time a clever disguise for a population research database that is funded largely through the Pharmaceutical Industry.  Patients like Me (I am a member)offers the opportunity to establish a virtual peer-support community and access to treatment guidelines and research. I love this system as it brings folks to my kitchen table that help me address the chronic pain I deal with each day, but at the same time I recognize we are freely giving away personal health information in exchange for the service. At the other end of the spectrum I have found Veritas Healthcare  where a small group of physicians, administrators, non-physician caregivers and patients are creating a new definition for those actively involved in saving lives from day-to-day through pushing the limits of healthcare reform in their local communities. They brand themselves Health Angels, I am a member and contribute to their initiative. We are many AND We are scattered.

Over the years I have come to fear we will miss an opportunity to establish a driving force as the most important voices in health care are lost or diluted through the diffusion of their input across an “over-abundance” of the organizations soliciting their involvement. Always anxious to help these stakeholders will easily donate a lot of their energy toward the cause “Fixing Healthcare” but once they sense they are being exploited will drop-out and assume a protective posture.

With experienced leadership, funding and most-importantly Humility I sense there is sufficient energy to establish a ‘critical mass effect on re-writing America’s plan for supporting the Health and Well Being of its citizens in future generations. That said, the barriers are many: Our present leadership in DC and a misinformed public that is being split into near civil-war we struggle to overcome the noise. So… time is of the essence and somehow, someway we need to corral these voices and experiences (hence knowledge) that is scattered throughout the internet, inner city and rural America into a single force. My prayer is that The RightCare Alliance will provide the necessary gravity to bring us together.

From Obama to ObamaTrumpCare

someone-to-watch

Someone to watch over me…….
Dear Doctor, will you please make sure I receive the RIGHT CARE!
What do you know about me Doc?
Do you have time to spend with me today; perhaps discuss who I am in the world, what my goals are and what I think might help me feel better?
Are you interested in my Well-Being? Do you and your staff ever discuss Well-Being or is it all veiled in a pile of healthcare acronyms; where Well-Being is described by absence of symptoms and disease?
Do you have the opportunity to discuss my goals and interventions with my other doctors? Sometimes I am not sure you folks talk because my information: from religion and employment history to list of medicines varies between practices. I thought someone was fixing all of the electronic health record issues ten years ago?
I noticed that all of my personal physicians that I have chosen over the last fifteen years are selling their practice or merging into some sort of healthcare system that appears to be managed by the local hospital; is this a good thing? I am really not sure you see me because the person at the registration desk doesn’t recognize me and your Medical Assistant told me that you only had time for 10 a minute appointment today.
Actually, to be honest with you; I am concerned for your Well-Being Doc because you have dark circles below your eyes and tell me that you are up until 10:00 PM each night completing your records at home. I realize that the new electronic health records are cool but shouldn’t they increase your quality of life as opposed to drain any remaining discretionary time you have with your family?
Ya know Doc, I have learned allot about healthcare in my life: Yeah, some because of my training and work but mostly because I have these….”conditions”. The “conditions” have presented adequate challenge to require me to understand the “bits and pieces” that string this system together. I’ll bet you don’t learn much about being a patient in medical school. I am not sure how you could do it without adding another two years to your fourteen years of post-grad education.
Did you know that I have spent ten hours in the last month trying to get a prescription authorized? You know the prescription that makes living with RSD and diabetic neuropathy tolerable! It appears that someone didn’t install your e-prescribing system correctly; something to do with prescription received and filled acknowledgments? I don’t know Man; it seems like the fax machine and pharmacy calls worked better than this e-Rx stuff. The long and short of it is that between your practice, my insurance carrier, and my CVS pharmacy the most efficient transaction I can hope for when I am in pain is 48 hours. My “Well-Being” wasn’t so “Well” this month…..
BUT my A1c is 6.5, my blood pressure is 124/78, my immunizations and other measures of health process and management outcomes are all great. I am pleased to be one of the good data points on your quality report and certainly testify to CMS and Blue Cross that you deserve an extra 5% for your hard work. Might be nice though if I received a discount on my insulin copay for the snappy A1c that has kept my feet attached to my legs and my body out of the hospital these last 50 years.

So what is Right Care? How do we know if we get it? Is it through the Diabetes DM report? Is it through the patient satisfaction survey that I take at each and every service provider I see? They all are very similar, I wonder if anyone has ever considered a “whole system measure”; at least something better than the Service Excellence Survey that reminds me of the material sent to me by American Airlines after every business trip. By the way, I always give my providers 5 stars with the exception of the conglomerate that bought up the primary care practices; their employees seem miserable. I find it amusing that their employees all where buttons that say “Ask me about the “Name of Healthcare Institutions” WAY. I guess they all have some kind of culture that is supposed to make my experience less painful as a consumer? Perhaps more like Disney Land I suppose.
What I really long for is my diabetes pediatrician from 1965. Dr. Lipmann. He always asked me to discuss how I was feeling about school, whether I had enough to eat at home, did I have any dreams and whether or not my diabetes would prevent me from achieving my dreams. Heck, he called me on Sunday night to as how I was feeling when my urine sugars were running 4 plus. When I left his care at the age of thirteen he had illuminated an interest in human biology that has carried me through my life. On a darker side of my childhood life he also notified “Children’s Protective Services” when he discovered I was living in an alcoholic flop-house!
My friend Tony is from another country. His mom had a CVA last year. She was transported to the ER, hospitalized, transferred to a facility with real rehabilitation specialists and doctors on staff daily, discharged home with visiting nurses and therapists and returned to society as a healthy 75 year old woman who is now completely independent. Her cost? Well there was no cost to her and the average cost per person for health services in her country is 1/2 of what it is in the USA.
In meeting with my insurance adviser the other day I was informed that my healthcare cost will be more than $500,000 between now and my death; with my diabetes, RSD, neuropathy etc. I wonder how we will cover the services. I really don’t want to be one of those patients that I cared for early on in my career. You know….like the old man and WWII B17 Aviator that looked up at me shortly before he died and said “Ya know Jeff; I used to be somebody once”.
The end of his life was no different than my fathers. Dad died last year from pneumonia at the age of 87. We had just celebrated Memorial Day. He called me complaining of a chest cold and 48 hours later I found myself sitting at his bedside with new onset dementia, consolidated breath sounds, a temperature of 101 degrees and abdominal cramps. I asked the Nursing Assistant to get him a bed pan and she informed me that he “just got off the pan”. A few minutes later I overheard her complaining to her supervisor that she had no intention of getting my Pop out of bed because he was a difficult transfer due to his combativeness. Pop was angry for sure but not combative. Then I witnessed the IV nurse insert a 18 gauge catheter into my pops wrist. She never registered IV access and proceeded to deliver 500 cc of solution into the sub-cutaneous space. This was the only vein he had left since they had made the same error the night before in the opposite hand. By 6PM his hand was as large as a soft-ball and this was hours after I complained about her technique.
So the following day Pop got a PICC line. PICC lines are infection risks!

Three days later I took him to the SNF with his PICC line and met with the therapists. Dad was becoming more lucid but I had concerns. I met with the Charge Nurse and facility director to assure his good care. I was concerned about the additional risk for infection from his new PICC line. You see, this facility was part of his life-long $450,000 investment in a continuing care environment; supposedly the best available in Huntsville Alabama. I used to direct clinical services departments in these facilities earlier in my career and was aware of their financial strain as they attempted to deliver hospital level care for 1/3 the cost.
I saw Pop the next day while he was cycling on the recumbent bicycle in the rehabilitation department. He had 20 minutes of therapy to go but as soon as I showed up to watch his work-out the therapist terminated the session and quickly wheeled Pop to his room so we could chat. Dad looked horribly sad, I knelt down to say good-bye kissing him on the forehead I said “I love you Dad!”; he looked up and said “And I love you Jeff”. These were our last words.
Three days later I received a call at 3AM from a person who could not speak English. He mentioned my father’s name and I asked for someone who could speak more clearly. The second person I spoke with also could not speak English. Finally a paramedic picked up the phone…”Mr. Harris, your father is unresponsive and we are taking him to the hospital”.
After a quick dialog I was able to determine that Pop had explosive diarrhea several hours earlier and simply lost consciousness. I called ahead to the Emergency Department to inform them of my father’s forthcoming arrival and that I was worried he might be septic. I told the doctor that Pop was a DNR patient and he should call me when he arrived. When Pop was evaluated the ER Doctor called me with his lab results and it was quite evident that he was dying and most certainly had been allowed to dehydrate while at the Rehabilitation Hospital OOPS I mean Skilled Nursing Facility OOPS I am not sure what I mean. God did I weep as the ER doctor and I discussed his DNR.
I wrestle with the fact that I might have been able to save Pop if I had pushed for re-hydration, antibiotics and other therapy but I couldn’t help think about Pops state of well-being. You see my brother and I had spent years shuffling him around between neurosurgery in Birmingham and other clinical facilities. At one point I had imitated a physician to keep my father from being discharged prematurely after his brain tumor operation. He had been in the hospital for a week. The Medicare Prospective Payment was going to pay for eight days and the hospital was pushing him out to a skilled nursing facility. I watched my Pop eating and realized he had an aspiration problem. Fearful of aspiration pneumonia I asked to have him discharged to the rehabilitation beds at the University Medical Center. I wanted him to receive a speech language therapy evaluation for aspiration risk and rehabilitation services. To get the transfer to rehabilitation where a doctor and therapists would be available; I had to retrieve every clinical skill I had when meeting with the staff to justify his case. When they assumed I was a doctor, I let it ride. Feeling shame the next day I convinced myself that I would do whatever I needed to protect my father.
You know, to make sure he would receive the
Right Care.

As the ACA (Obamacare) was implemented I began to have hope. You see, this year 2017 is the beginning of Medicare’s observation of how well inpatient hospitals and post-acute care facilities integrate. One important measure they are watching is the frequency of readmission to acute care for the same diagnosis. This combined measure of how well institutions, nursing homes, home health networks and primary care communicate regarding a patient’s process as they are handed off between facilities is to prevent patients from becoming ill and requiring re-hospitalization. Trust me folks, it used to be horrible: I can remember turning patients around as they arrived at our rehabilitation hospital and sending them straight back to the Medical Center that had just discharged them. You see, some were still in heart failure and semi-conscious; not only could they not participate in rehabilitation; to attempt rehabilitation might have killed them. But you see, the hospitals were not linked to the rehabilitation and skilled nursing facilities through a common therapeutic goal and reimbursement mechanism. The hospital in Boston just wanted to discharge the patient prior to exceeding their Medicare reimbursement allotment. We however had marketing nurses out in the field accepting any warm body with a heartbeat that just might survive a 21 day Medicare stay in a Skilled Nursing Environment.
My friends had no idea why I never lost my job by reversing the trajectory of these patients. What they did not know was that I had a compassionate family owned corporation employing me who trusted my clinical intuition.
Alas… as of today….Obamacare is being repealed and we have yet to be informed about “TrumpCare”. My guess us that we will return to the past with the exception of mandatory care for persons with pre-existing conditions. Then we will see just how much our policies cost and what our end of year out of pocket expense will be.
For my wife and I,
We are searching once more for our peeps. This week I have looked at my well-being through the end of my life if we ex-patriate to Canada. My cost will be $0.00 for healthcare. My waiting time for a CAT scan will double but Canada’s outcomes for Cancer and Cardiovascular Disease and diabetes are slightly better than in the USA. So what do we have to lose? In fact, Canada doesn’t amputate many diabetic limbs. You know why? Because all of their diabetics have access to care!

Fondly thinking of you fellow patients and consumers;
Jeffrey Halbstein-Harris
• An advocate for those who feel lost
• Always watching
• Harnessing the compassion that surrounds you in a time of crisis
• Connecting you with the best science available
• Minding your pocketbook
• Working to return you home safely