Untangled Health

Consumers Unite To Drive The Changes We Need

Category: The life-cycle of health-care needs

An advocate gets busy while every politician and “talking head” takes credit for healthcare model ideas published long ago.

Reconciling data in my six health portals

Reconciling data in my six health portals

I watched Barbara Starfield again last night. She passed away in 2011 but it seamed as though she was sitting in my living room telling me everything will be alright but many of us will never get our way. Barbara spent several decades studying the characteristics of health systems all over the world. Her final conclusions were simple and easy to implement as long as social agreements were made between consumers of healthcare services and their providers. The contract (sort of) is that my primary care doctor will be available when needed if I promise to contact his or her office before going to the ER for an earache or other non-emergent condition; my doctor also agrees to follow my care as I transition through life stages and address all mental and physical health conditions as they arise by assuring I connect with the correct specialist if required. The specialists in return are in constant contact with my primary care doctor so the primary care clinic is coordinating continuous and comprehensive care and reviewing all interactions between myself and other medical environments. Like I said earlier this week. Someone to watch over me. I first learned of Dr. Starfield in 2001 and followed her publications. Funny, she was never accepted to sit on any best-practice boards but the scientific community considered her work to be spectacular in terms of statistical approach and quality. In other words, she looked for the null hypothesis also.

Again…concerns over repeal and replace.

Some more diatribe with hope at sarcastic humor is written for you below. Please follow through to the end as I pasted a really cool graphic pointing you to a new society of consumers and professionals that might fix the system over the long run.

The conversation doesn’t stop at my dinner table, on my phone, through IM or Facebook. It seems as though my popularity index took a healthy bump after November 8th, 2016. I wish I could be happy about the reasons for the traffic.
“Jeff, you are on Medicare are you concerned?”

Well yes; you see, as we become older the likelihood of needing assistance from case managers, specialists, short stays in skilled nursing or rehabilitation facilities increases. Same with home health services which is always the preferred place to recover from the self-inflicted fractured hip that occurred while my masculine ego informed me of my capacity to clean out my gutters.
One of the most important changes to the clinical language coming from Obamacare is the right for all patients cared for by primary care doctors with Medicare contracts to receive “Coordinated, Comprehensive Care”. Lately you might have heard the terms: “Patient Centered Care” or “Medical Home”. You probably heard President Elect Trump mention “Patient Centered” or a new commercial by Humana presented by a handsome young doctor stating that Humana’s system of Patient Centered Care is superior because of their capacity to coordinate your care within their “medical community”. Then you will watch a local conservative pundit state: “those stupid narrow networks tried through Obamacare didn’t work: here is a toast to repeal and replace.
This stuff cracks me up for the same proponents of patient centered care realize that closely collaborating narrow networks can provide you with clinical personnel that understand your needs better than anyone else! In fact, they have the same attributes of a Patient Centered Care Team using a single medical record and plan of care to increase safety and minimize mistakes. Yet you will hear no one (perhaps save me and a few of us that are tired of scraping the poop off our boots) tell you that the words Patient Centered, Narrow Network, Accountable Outcomes, Value Added Payment, Medical Homes, and all other terms implying a tightly coordinated, error free clinical team surrounding all patients are not original concepts. In fact, they are in place in many of our successful neighbor nations who provide universal enrollment and have always demonstrated lower reliance on emergency room services for basic medicine, better health outcomes and no difference in treatment effectiveness for cancer, diabetes, cardiovascular disease and other leading causes of premature mortality. Our own CMS (The Centers for Medicare and Medicaid Services) have published the policy here July 2016:
So all of a sudden the administration of 2017 will be using terminology invented by others to describe care models that work after years of academic surveillance by healthcare policy analysists and already written into The Patient Protection Affordable Care Act or what the opponents call “Obama-Care”.
My prediction is we will keep the new payment systems for coordinated care and chronic disease care management. However, the credit for the success will fall under a new Trump label. My fears is that the same three insurance companies comprising the oligopoly of payers for American Healthcare will recoup their lost profits of mandated care without premium inflation for the chronically ill by shifting the premiums higher for those with pre-existing conditions. So here is another question from the week:
“Jeff, what will I do now I couldn’t get covered because of my history of cancer before the ACA?” “What if “Trump-care” requires coverage for pre-existing illnesses but allows insurance companies to include the illness in the premium pricing model? “ My response to this question was “not sure, my cost in the NC High Risk Insurance Pool for my diabetes prior to Obamacare was $1200.00 per month not including co-pays. Today it is $350.00.
More on Patient Centered Care AKA Medical Homes AKA Integrated Care AKA Chronic Illness Care.
I discussed the integrated care model and its payment adjustments to my Men’s group on Thursday night as they requested a primer on planning for their last ten years of life. Their hope was that our system of care had evolved and they would not have to lose their homes to cover the long-term care charges. Many of the guys in my group neglected to buy long term care insurance when they were young and healthy, had since suffered a chronic disease diagnosis and episode of treatment and no longer qualified for long term care insurance. They could however place $10 K per month into an account to pre-pay up to one year of long term care. This is what my father did: In 2006 he entered into a contract with a transitional care organization. He paid them $350,000 for full access to assisted living and long term care until his death. They also allowed him to live in the attached apartment complex for independent seniors for an additional rent of $3200 per month including one meal per day. Not a bad deal eh? Oh yeah…one more oversight: My friends ; all retired upper middle class professionals had no idea that Medicare didn’t pay for long term custodial care either in home or inpatient facility.
Now, like I said the other day, I am a bit tired of shouting the truth to those who were unfortunate enough to buy into the following promise: “Oh we will have the most wonderful healthcare system in the world” and “We promise to repeal the expensive policies and replace with something better.
We were on our way folks: The biggest mistake, President Obama’s team was denied the necessary Medicaid expansion for ALL not SOME States by our supreme courts. If you don’t understand the math I will be pleased to describe it in another column. Basically when the folks that would have had access to Medicaid don’t receive the insurance they still consume services. The loss of revenue winds up on the balance sheets of hospitals and providers and they respond by increasing their cost per service. The insurance companies pay more and your premiums increase. So… my neighbors policy (55 year old male) in NC costs $11,000 per year. The very same policy in New Hampshire where they expanded Medicaid costs $5,500 per year. As Mr. Obama leaves keep in mind that the rate of increase in health costs since the inception of Obama Care is the lowest it has been in 40 years.
Somehow, someway; we need to cover everybody. If we do not we cannot cover the losses incurred in the private sector without the Magical Thinking that has been sold you for so many decade. Hide the losses, get others to pay for the losses through modest increases in cost of living and blame the doctors, and hospitals who give away more free care than you could ever imagine.
What would happen if our incredible consumer driven internet harnessed the decision support technology that we use daily on Amazon and instantly brings the right service to you when needed should you or a loved one become ill? What if we harnessed IBM Watson to make the diagnosis thereby reducing error rates and reducing unnecessary utilization of expensive diagnostic procedures?
What if we didn’t need insurance companies any more to assess population risk and perform preauthorization services while we waited for our new medication?
Since we have all of the data connecting lifestyle, culture, nutrition, infection and the human genome can anyone appreciate where we are headed with our capacity to discover the cause of disease and effect of treatment? This is not decades from now my friends; it is within the reach of our children’s lifetime. I have wonderful friends with incredible scientific minds that are creating open source technologies to accomplish human collaboration like humankind has never witnessed. The only barrier to their success is a loss of priority to cure disease, increase well-being and expand the functional-years of human life.
Or…we can keep these technologies secret, forget those we have developed through the natural sequestration of competing private enterprise and traditional silo thinking. If this is where we are headed then the best investment to assure a painless end of life if you are not surrounded by humanitarian friends is my undying support for the second amendment. If you catch my drift.

Check out Right Care Folks!

Right Care Now

Right Care Now

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

What is important! Life, Death and Taxes

Hopeful

Hopeful

The most important messages I carry are personally empowering. They are seldom original but channeled through the “bright spirits” I encounter in life.

To be empowered in this confusing world requires a grasp on reality. I will be 60 next week, a milestone I never cherished; even less so today with recent memory of the loss of my father, mother, brother and best friend of 30 plus years.
I was so freaking sad today when I woke that I found it hard to make a cup of coffee. I preferred to sit in my armchair (nicknamed the neurotic’s spaceship) and discuss the meaning of life with Bodi my loyal canine friend.
When I opened my social portal into the virtual world I discovered a friend’s post. A warm soul I met in a business conference two years ago, April Koontz had posted an important message; another piece of wisdom that I find to be a blessing for all of us.
I have chosen to teach about how to survive in America if one is ill perhaps it is time to focus on the ultimate reality for my lifetime. I will not witness a fix. We are far from agreement on the definition of health and well-being and human rights in American Society to imagine anything close to a satisfactory solution in my generation.

 

So perhaps I will continue to post interesting tidbits and ideas with hope of enlightening those who did not work 35 years in healthcare; but most importantly I will re-state my agreement with the video below; a presentation by @Michael Hebb, the founder of Death Over Dinner’s Ted Talk below – a must see!

A great thanks to April for bringing this to my breakfast table this morning.

A note to the NC Legislature on Compassion

 

 peace 2 you

 

A letter to the NC General Assembly

 

 

 

We seem to be evolving into a nation of binary people. Binary in the sense of our emotional, tactical and strategic response to our surroundings: On one end we have the Concerned and on the other we have the Unconcerned.

 

Of course you realize I say this in jest, but what if I was right? Are you willing to risk your comfort and explore a possible reality with me?

Please place your religious ideals aside for a few minutes and read on:

 

Hypothesis:

 

  • There is no God
  • No-one will inherit the earth, we have no idea what the future holds.
  • Human beings randomly crawled from the primordial soup some billions of years ago and have evolved to the most intelligent form of life on the planet. When I speak of intelligence I mean cognitive ability and nothing else.

 

 

 

Since we became self-aware we have been unable to escape our internal reality: That we are born alone and will die alone. All of the space in-between (a brief 70 +- years) is filled with experiences arising from the environment around us. We learn –or not that our actions influence our environment and well-being; receive –or not, instructions on how to behave in society and together: “Trudge the road of destiny”.

 

Non-sense you say: “we trudge the road together”!

 

Two weeks ago, as I flew home from a medical conference in Denver, this essay was tumbling around in my mind. I was not sure of the words, but I felt an overwhelming drive to write something about how I currently perceive my world: The one where I wake in Raleigh North Carolina each day, aching from diabetic neuropathy, reflexive sympathetic dystrophy and drained by my hepatitis C, a condition undoubtedly resulting from poor lifestyle choices in the 1970’s.

 

I am observing the adults in my Country of origin become firmly rooted in social belief systems. It appears they are evenly divided between the concerned and unconcerned. At the same time, few fall completely into one group as they seem to be willing to sacrifice their beliefs when under personal threat. The ruggedly independent who celebrate life, liberty and the pursuit of happiness in the absence of stringent regulation will sacrifice their black and white thinking to help a nephew or niece who has become dependent on drugs or alcohol. Those who consider themselves intolerant of in-equality and weep over those experiencing disparity in health-care or lack of opportunity will often appear to live up to their values until they too fear losing something of greater importance.

 

I have a friend who calls this: “Integrity in the moment”.

 

Since we are tolerant of a change in our own life circumstances to the point of willingness to think in numerous shades of gray when it comes to self-interest and the safety of our loved ones; how is It we cannot apply this flexibility to everyone?

 

My father asked me if I had ever sacrificed. His opinion at the age of 86 was that his was the last generation to truly be willing to have such willingness. He and his friends in WWII who walked from one end of the Philippines to the next risked their lives daily. I always thought this was for God and Country until I learned much-later that my Dad joined the Army –in his words “to find chicks”.

 

So what I consider the truth today is that few human beings are willing to strictly abide by their convictions. Yet, in my opinion; to ease the pain of ‘oneness’ we find some common characteristics that we share with others and join that group: Until we become threatened that is.

 

So, for all of you Republicans, Democrats, Tea Par-tiers; Independents; Christians, Jews, Muslims, Atheists, Agnostics, or (insert category here): Are you willing to try something new?

 

How about belonging to one group:

Human Beings.

 

 

How about owning some truth:

  • We are a fickle species.
  • We are capable of changing our behaviors and attitudes.
  • We are not God if there is one.
  • We believe in knowledge.
  • We believe that knowledge is best obtained through scientific methodology
  • We would like to live forever, never be hungry, never be lonely, and always be loved and recognized as an individual.
  • When we put our defenses down we realize that each one of us will die and we might experience times when if not dead, we will wish were dead.

 

Now, stop here for a moment. Yes I know you have an important business meeting but please stop for a moment and read on.

 

  • If you own these truths you might feel a bit uncomfortable right-now: Perhaps afraid for yourself, perhaps sad for others who might suffer. In fact, all of a sudden you realize that We All Suffer.
  • What separates you from those who you call entitled. What separates you from the arrogant wealthy movie star; very, very little; perhaps nothing at all?

 

 

So on the flight home from Denver, I met a guy who said his nephew had been living a year in North Carolina. He said he had just got a factory job but could not afford his medicine. He said he was a diabetic who did not have his insulin.

 

As my mind jumped between my judgment and intolerance of numerous human character defects; across a spectrum of political beliefs there was a man about to die from diabetic ketoacidosis.  He had lost 50 pounds in weight and for reasons that were none of my business no medicine.

 

I just hung up the phone after speaking with his aunt: I gave her the number of a community health center where the young man can access a primary care medical home and learn –if he desires- to take care of himself. That is the problem in the moment.

 

Realizing that I am one of those fickle human beings described above I needed to stop thinking and do the next right thing.

 

The next right thing will always be: To decrease suffering for another. When I am so sick that I am unable to help another or take care of myself then the next right thing is to?

 

Ask for help!!!!

 

So, as the North Carolina Legislature places health and well-being above all else, they will have my respect. That said, since they are human, and I am a human, if any one of them needs some groceries they are welcome to split what I have in my refrigerator.

 

You see:

 

At age 10 a man tackled my ‘entitled’ drunken mother as I jumped from our kitchen table on-to his back with a steak knife ready to cut his throat.

 

At the age of 13 I said “I will never drink alcohol or take drugs”

 

At the age of 19 I acquired hepatitis C (guess how)

 

At the age of 25 I had to borrow money for insulin (help of another)

 

At the age of 31 I stopped drinking and drugging (help of many and my higher power)

 

At the age of 36 I had asked a team of people to help people suffering with lung disease become more independent and comfortable: Literally healing people into their inevitable death. I did not have to ask: ten years later; the team simply told me how much they loved me.

 

There have been times in my life when others would throw me away and times when they called on me to feel safe. At what point should I be judged by others. Isn’t it our duty to love unconditionally in the moment: To believe in our truth that people change, life is precious and it is not ours to judge?

 

Moving forward NC Legislature, I hope you all will sit back and reflect on the importance of your actions. How many tomorrows are you sacrificing that do not belong to you.

diab expense nc cos

 

 

 

 

On Care-Giving

Heck! With health insurance we can afford a cup of coffee!

Heck! With health insurance we can afford a cup of coffee!

Please choose the correct response:

We are all care-givers at some point in our lives.

(Yes) (No)

We will all require care-givers at some point in our lives

(Yes) (No)

It is 3PM on a hot August afternoon in North Carolina. Gathering around my brother Bruce in the spare bedroom of my home are my father, my wife Carol, my brother s children and the occasional visitor.

Bruce is 54- although he stopped smoking fifteen years ago we are now tearfully sharing the last moments of his life. Through his semi-conscious mind, he listens to our conversation.

Leaning over my sweet brother I ask him if he would like some more morphine. He struggles to respond, reaching deep within himself and utters a raspy, lungs filling with fluid “JEFF?”

 

I respond with yes and again ask him if he needs more pain medication? Looking up he utters the last words I will hear from him “Yes. Please”.

At 8:30 PM, Bruce loses control of his bowels. My father, Carol and I gently roll him on his side to change the bedding. He struggles against us, yet we accomplish the task.  We quickly change the bedding, clean the poop from his butt and –like a newborn baby, turn him over on his side.

A small trickle of blood spills forth from his lips and his eyes begin to dilate. “My God He’s Gone” says my wife. Leaning down close to his face I stare into his eyes, tell him he is safe, he is loved and to “go toward the light”. Bruce takes one final breath in my arms; his body jerks and he is gone.

Collapsing on his body I scream out the agony of loss. Making sounds like a little boy I weep “My brudder, Bruce, Oh God”. My father falls on top of me. The man who fought in the Philippines, and buried his wife just one year earlier begins sobbing. We become a grief sandwich; my dead brother, my father, my wife and I: All piled up on the hospital bed. Finally…it was over.

Many do not receive the blessing of being present during the death of a loved one at home. For most, this episode occurs in a clinical environment; for a variety of reasons I suppose. But my career in medicine had given me sufficient insight to understand how ill-prepared our society is to “heal a person into death”.

Bruce and I had a contract. When he received his diagnosis 18 months previously we discussed –in detail- his wishes, the mechanisms to determine what the best treatment approach is; the statistical probability of survival and the financial cost his family in a variety of scenarios. One might think this is all done for us by our physician, or social workers, or ‘for-Gods-Sake” someone else. Unless of course, he or she has spent the last 34 years working as clinician, administrator and chronic disease program manager across all settings of healthcare. A new perspective emerges for folks with this occupational history. An awareness of true cost, profit margins and unending business opportunities that have gathered so much wealth for “value added” service providers in a free market economy. We also understand that in America, we spend twice as much per-capita on health care of any industrialized nation, have lower health outcomes and can be the only Nation to claim health care cost as the leading cause of bankruptcy.

Not so? Well, in 1996 I was flown down to New York City by my employer, a skilled nursing organization. My job at the time: Evaluate five patients who were permanently on life support and losing their financial resources. My company, under contract with NY Hospitals would move these patients to another State establish residency for the individual and collect the Medicaid reimbursement from the State where we were located. This reimbursement for a person on a ventilator was double the New York Rate.

As I deplaned from our corporate Cessna that day, one of the Senior VPS’ asked “How long do you think that last case you looked at will live Jeff”. You see, buried deep within that – statement was the profit calculation. I remember that night well. Carol and I had just been married. When I arrived home I sobbed in her arms; Fearing for all of us.

What do I know as a caregiver and care recipient who has had diabetes for 47 of 57 years of his life? Well, that if we have any sense of humanity within our value system and we are human: We will both give and receive care before we die.

Our system is not designed to accept death. As a result, where resources are unavailable many Americans are left to care for their dying loved ones with few skills. However, where the administrative processes are burdensome, we should also recognize the beauty and reward of helping a loved one cope with these phases in their life. In actuality I used to send patients home on ventilators having educated the family to care for them. They did just fine and in over ten years, no-one ever lost their life due to a family member’s ignorance or misjudgment. PLEASE: I BEG YOU TO ASK ME ABOUT THE HOSPITAL IN CONTRAST TO THE LAST STATEMENT.

I suggest that we include a social contract to educate our children as to the process of acquiring health-care and the personal commitment required for managing our cost-of-care as our system changes. High school would be a great place to start.

I know that we have choices but many of us in America do not believe we have any power when it comes to the treatment we receive, the cost of the treatment, the alternatives and best practices. If we did, we wouldn’t require case managers, patient advocates, Accountable Care Organizations to assure we are treated well. Heck, the new health reform assumes we are unable to do our own research or select the right provider. This is why these job descriptions exist and corporations are contracted to keep watch on the quality of care we receive.

I submit that this may be true for now. But I also submit a challenge to Americans:  A challenge for all of us to step away from our televisions and disregard sound-bites. A challenge to become self – educated consumers. It is not as complicated as one might think but you need to understand the shell game.

And by the way, the shell-game is not going away.