An Open Letter to the U.S. Congress

Dear Senators and Representatives of the United States Congress,

My name is Gary M. Votour. I have lived in Columbia, SC for the last six years. Although I am disabled, I volunteer my time as a personal health care advocate. As a Christian, I follow the teachings of my savior, Jesus Christ. I follow my calling and help my fellow men and women when they are dealing with complex medical issues by helping them prepare for life-threatening treatments. I assist them in getting second opinions, understanding informed consent, assigning health care proxies and preparing living wills.

That is not what I am writing to you about today. In 2006, my first wife and I lived in Massachusetts. She was diagnosed with a rare form of bone cancer, and a high-risk surgery to arrest its development went horribly wrong. Ischemic strokes during the surgeries left her almost completely paralyzed and in constant pain for the rest of her life. After 6 months in 3 different hospitals, we were fortunate enough to return to our rural home where she struggled to continue living in spite of what happened. After 30 months of ICU level home care, she gave up and stopped eating and drinking. She died in 2008.

Throughout the hospitalization and home care period, I never left her side. Her strength and determination inspired me to dedicate my life to helping others. After she died, I returned to school, obtained a Masters Degree in Health Care Administration and became the advocate for others I am today.

When her surgery went badly, her employer terminated her. For eighteen months, the Massachusetts Medicaid program, MassHealth, reimbursed us for the COBRA payments needed to keep her private insurance. MassHealth also paid for virtually everything not covered by her HMO. This included visiting nurse visits several times a week, home care supplies, physical therapy, and most importantly funding for the staff we needed at home to help me care for her. A special program funded by MassHealth paid for 90 hours of staff weekly, that we could hire locally and train. Without MassHealth, her care at home would not have been possible.

After the 18 month COBRA period ended, her HMO would not insure her. Her “pre-existing” condition gave them the right to deny her coverage. Medicare became her primary insurer, and MassHealth continued to fund what they did not cover. We were fortunate enough to be in the only state in the country that had adopted such a progressive Medicaid program. This was because our state legislation had passed what was known as Romneycare, named for our Republican governor Mitt Romney. That is the program, as I am sure you know, that the Affordable Care Act’s (ACA) Medicaid expansions were modeled after in 2009 for the entire nation.

If we lived in South Carolina today, and this happened to us, the outcome for my wife would have been very different. Because this state has not expanded and strengthened their Medicaid program under the ACA, caring for my wife at home would have been near impossible. The best care we could have hoped for here would result in her being warehoused and left to die in a nursing home, with a standard of care far less than what we were able to provide for her at home. Even that meager care for her likely shortened life would most certainly have meant foreclosure on our home and bankruptcy for me before she would have been eligible for any Medicaid assistance once her COBRA protected insurance ran out.

After the ACA was passed, I hoped that every state would expand their programs using the freely available funding provides by the ACA. Unfortunately, as you also know, a six-year political struggle between liberals and conservatives decided otherwise in 19 states, including the one I know call home. The originally partisan ACA became a victim to political battles, and thousands of people have already died as a result in those states that did not expand Medicaid to cover their working poor.

As an advocate for the ill, I can tell you there is no shortage of need here in South Carolina. As an advocate for those in need, I must urge you to reconsider giving any support to the American Health Care Act (AHCA).

The AHCA includes changes to the law that would allow insurers to charge extra for those who may have preexisting conditions. That alone should mandate your opposition, and I write to you today to remind you that what happened to my wife could happen to any of us at any time. No one should lose their insurance when they become ill or are dying. The ACA made it mandatory that insurers offer affordable insurance to all, regardless of their medical condition.

You must see that there, but for the grace of God, goes any of us.

Also, Medicaid is a vital program designed to protect all of us in times of trouble, whether it be financial or medical. We both know that if the presidential election was decided by popular vote, the 19 remaining states would likely now be expanding their programs to do more for the poor, not less. Block grants for Medicaid will cause the eventual destruction of the program, as State’s will be forced to ration care to the needy. You will, in effect, be creating the mythical Obamacare “death panels” people theorized about years ago, but they will be at the state level as they are forced to do less and less for the poor into the future.

I ask you from my heart to use all of your power as my elected representative to end the forward progress of the AHCA. Force it to be tabled, not amended. Require that it be removed immediately from legislative consideration until both Democrats and Republicans can sit together and craft legislation that guarantees no one will be denied their right to insurance because of illness or income.  Ensure that Medicaid programs in all 50 states are strengthened, not diminished. Create incentives for the remaining states to expand coverage, don’t reward them for allowing their citizens to die needlessly.

Our country is a great nation, a shining light on a hill to the rest of the world. We have a unique opportunity to show everyone that America is indeed the most merciful nation on the planet. As President Kennedy said in 1961, “Today the eyes of all people are truly upon us—and our governments, in every branch, at every level, national, State, and local, must be as a city upon a hill—constructed and inhabited by men aware of their grave trust and their great responsibilities.”  Instead of embracing the slogan “Make America Great Again” let us agree that America is already a great country that can afford to do better for those who have less.

In closing, I leave you with the biblical passage that guides my life in the hope that it will guide your thoughts on this issue.

When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. He will put the sheep on his right and the goats on his left. Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’ The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’” -Matthew 25, 31-40

I look forward to your reply.

Peace.

Gary M. Votour, MHCA
Columbia, SC 29223

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The Affordable Care Act: Why “Repeal and Replace” is Not the Answer!

gps-id-icon-94414The Republican party’s direction for health care has become the proverbial circus car with 20 clowns inside, none of them driving. President Trump is on the roof, shouting conflicting directions to no one.

The ACA is the GPS.

Donald Trump is now our country’s President. Despite the efforts of the Democrat party to gain control of the Senate, it remains in the hands of the Republican party, along with the House of Representatives. The reality is that for the third time since 1945, the conservative party has control of the Presidency, the Senate and the House (1). Since President Trump ran with an overwhelming number of campaign promises solely designed to gain voter support, we will likely find that a lot of what he promised will not happen.


The future of the Affordable Care Act (ACA) is now under attack.

From the start of the 8-year term of President Barack Obama in 2008, he was met with Republican opposition to almost everything he tried to accomplish (2). This has been particularly true for the ACA, which became law in 2010. The Republicans in the House of Representatives have voted over 60 times to repeal it, at a cost to taxpayers of $87 million (3). 19 states still refuse to expand Medicaid to include all of their working poor under the ACA, despite the ACA reimbursement of 100% for three years and the enhanced federal match of 90% to cover the costs. The ACA has met with great opposition, more than any other piece of health care reform in our country’s history. That political opposition has hindered its success more than anything else.

aca-iconOne of the most important things the ACA did was to reorganize the entire health insurance market for people who buy their own insurance. This included the establishment of online health care exchanges where people could shop for competitive prices for policies that fit their needs. Those same exchanges are where they
could find out if they were eligible for tax credits based on their income that has helped discount the cost of insurance. The ACA set new standards for health insurance to protect people from buying policies that were previously overpriced and provided little actual coverage of value.

The changes to the insurance industry brought about by the ACA were indeed disruptive. It left some people who were required to buy insurance upset and angry. Ineligible for subsidies because their incomes were too high, they feel they were forced to buy insurance with high deductibles to save money. They don’t feel the value of what they bought was worth it. (8)


Most people are pleased with the ACA

Most Americans are quite happy as they realize the value of the insurance they now have. The Commonwealth Fund, a Washington think tank, recently surveyed Americans on this issue. They have found that 77% of adults with marketplace plans purchased under the ACA and 88% of those newly enrolled in Medicaid were satisfied with their health insurance. When asked to rate their insurance, 66% of marketplace enrollees and 77% of new Medicaid enrollees said their coverage was good, very good, or excellent.

maThey also found that 7 out of 10 enrolled in a marketplace plan or newly enrolled in Medicaid said they had used their coverage to go to a doctor, hospital, or other healthcare provider or to fill a prescription. 6 out of 10 of them also said they would not have been able to access or afford this care prior to getting their new coverage. Among those who were previously insured, half said they would not have been able to access or afford this care before getting their new insurance. (9) The majority of self-insured Americans are happy with the ACA, and millions of people now have insurance they did not have a decade ago and are using it.

The number of uninsured is at an all times low, down to 8.6% from 9.2% last year, and from 15.7% before the ACA. This is the lowest uninsured rate in 45 years. Millions of lives have been extended and saved by newly found health insurance, particularly among our country’s poorest people in the 31 states that did expand Medicaid under the ACA. Households with incomes below $500,000 also benefited greatly from the ACA, their uninsured rate dropped as well to an all-time low of 7.4%. Health insurance premiums on average are actually 32% lower now than they would have been without the ACA if you account for annual historical increases and the higher benefit of the plans. (16)


The ACA is a success

The quality of care has improved, and the cost of health care is starting to stabilize as the expanded markets lower the rate of increase each year since the ACA was passed. People with pre-existing illnesses can get insurance now. Insurers can not drop you if you become sick. They can not cap your benefits annually or over your lifetime. Parents can keep their children on their insurance until they are 26. We have more rights when appealing insurance company denials. Businesses that offer health insurance to their employees get tax breaks. Subsidies help lower income families afford to buy their own insurance. (18)

The ACA also expanded Medicaid in 31 states that agreed to do so, bringing health insurance to over 10 million people, who are mostly the unemployed and working poor of our country. These are people who work in jobs that do not provide insurance and who do not make enough money to qualify for subsidies. They are also the children of poor parents, disabled people who weren’t eligible before the ACA, and people who have chronic health problems that limit their ability to work full time. Because of the ACA, they now have access to health care that provides them with a physician, diagnostic testing, and preventative care that will ensure they live longer, healthier and happier lives. (10)

All of these gains have come from the Affordable Care Act. Without the laws’ protection for those with pre-existing conditions and financial supports for those having trouble affording it, many Americans will find themselves without health insurance again. The Congressional Budget Office (CBO) has predicted the outright appeal of the law would increase the number of uninsured Americans by 22 million, and defunding the parts that make it work would likely have the same effect. (11)


Insurance Companies Will Become Broken

If Republicans are allowed to repeal the ACA, they would need to have an effective replacement to ensure the health insurance industry does not collapse financially. The ACA was a compromise that included insurers as partners, allowing them to stay profitable by increasing the risk they provide insurance for across a wider, healthier population. That’s how insurance works… the more people who have insurance, the cheaper it becomes for everyone.

downloadIf the individual mandate is repealed, millions of Americans will simply cancel their health insurance. Because they are healthy, they don’t think they should be forced to buy something they don’t need. What they do not understand is that the risk they take is that a single illness or accident can drive them into medical bankruptcy. They risk finding their care limited to emergency rooms and urgent care centers instead of the primary care physicians and the extended networks of specialists that insurance gives. Without preventative care, such as annual physicals and diagnostic screenings, they risk losing the benefits of early detection of often fatal illnesses, which decreases their chances of survival.

If healthy people stop buying health insurance, hospital costs will rise dramatically when some of them become ill or injured and they can not afford to pay their bills. Hospitals use cost-sharing practices to pass that cost on to insurers. Insurers will be forced to drastically raise premiums to cover those who still have insurance. As premiums go up, the number of enrollees will decrease, creating a feedback loop that will cause what is called a death spiral. The American Health Insurance Plans (AHIP), the health insurance industry’s largest trade group, has predicted that “That same dynamic would play out across different age groups, in different states, and in different low- and middle-income brackets. The ACA’s tools for balancing the risk pool would be ineffective, and, would resemble the ‘death spiral’ phenomenon accompanying the failed state reform efforts of the 1990s”. (12)


Medicaid will be block granted into oblivion

The Republican plan includes radical changes designed to force states to cut or limit enrollment in Medicaid. States that have not expanded Medicaid would no longer be eligible for ACA funding to expand. All states would have to choose between a block grant or a per capita cap that would severely limit federal reimbursement.

The latest version of the plan being drafted would phase out by 2020 the Medicaid expansion that has covered millions of people under the ACA. Instead, states would begin to receive a set dollar amount for each person covered by the program, a drastic change from the open-ended entitlement the program is now. (29)

bearish1600.jpgThe current plan is to replace the existing Medicaid program with grants to the states that let the money be spent with little if any, federal oversight. This is a long-term attempt to deprive the poor of the health care that Medicaid now provides. The grants amounts will likely be determined at a set rate of money per person living in poverty within each state.

A major problem with this is the lack of any provision to increase that rate as the cost of health care continues to increase in the future, effectively limiting state’s abilities to maintain their programs or increase the number of people covered in the event of a recession. State’s will be forced to do less for its poor, in fact, the Republican plan acknowledges it by stating that enrollment caps and waiting lists for new enrollees will be allowed. Medicaid will quickly become “dead on the vine”, and one of our country’s greatest safety nets for the poor will be torn to shreds.


The destruction of Medicare as we know it

The other federal program that provides health insurance is Medicare, which insures seniors over the age of 65 directly without state involvement. The ACA made significant improvements to Medicare, by eliminating a great deal of the existing fraud, waste, and abuse. This saving, estimated at $716 billion so far, has been reinvested back into Medicare to improve care for seniors. This included closing the Medicare Part D “donut hole”, which has saved Medicare recipients $11.5 billion since 2010 in prescription drug payments. Over the next 10 years, each Medicare beneficiary will save about $4,200 due to lower drug costs, free preventive services, and reductions in the growth of health spending (14). Either repealing or defunding the ACA will eliminate these savings to our nation’s elderly and those who are disabled.

Additionally, Republican Speaker of the House Paul Ryan has been pushing to phase out Medicare and replace it with private insurance for several years. Since the election, Ryan has stated “What people don’t realize is because of Obamacare, medicare is going broke, medicare is going to have price controls because of Obamacare, Medicaid is in fiscal straits. You have to deal with those issues if you are going to repeal and replace Obamacare. Medicare has serious problems because of Obamacare. Those are part of our plan.”

This is simply untrue. The ACA is not the problem with Medicare. In fact, the savings created by the ACA have extended the solvency of Medicare by at least ten years. Leftover from his failed run for Vice President with Mitt Romney four years ago, Ryan’s plan to privatize Medicare is not only unpopular with seniors it is also built on false assumptions. What do Republicans mean when they discuss plans to phase out Medicare?

According to Ryan’s website, “For younger workers, when they become eligible, Medicare will provide a premium-support payment and a list of guaranteed coverage options – including a traditional fee-for-service option – from which recipients can choose a plan that best suits their needs.” (15)  Allow me to translate that for you…. If you have Medicare now, you’ll keep it. If you aren’t old enough yet to be on Medicare, when you become 65 you’ll get a check that will allow you to buy health insurance from those same providers that are about to either drastically increase premiums or simply go out of business if they repeal or defund the ACA.


The GOP healthcare backpack is empty

bpdownload.jpgThe GOP plan is also short on the details that are necessary to develop an accurate estimate of its cost to taxpayers. The Congressional Budget Office (CBO) could determine the actual future cost of the Republican plan if they provided sufficient details about how it would be implemented, but they are deliberately not doing so. We have no idea whether or not what they propose will actually save any money, but we do know it will harm the poor. Speaker of the House Paul Ryan has stated, “Our proposal is like a health-care ‘backpack’ that provides every American access to financial support for an insurance plan chosen by the individual and can be taken with them job-to-job, home to start a small business or raise a family, and even into retirement years.” For anyone looking closely at their plan, the “backpack” appears to be empty, void of detail and substance. (13)

If you’ve followed this so far, by now you understand that the simplistic three-word promises of a campaign (“Repeal and Replace”) can not solve anything. The Democrat platform had a plan that would have repaired much of what was wrong with the ACA. Ranging from enhanced enticements for states that have not yet expanded Medicaid to tax credits to help Americans with high insurance deductibles, those options are gone now. All we can do now is protect the progress we have made in the last six years by defending the ACA.


President Trump speaks to Congress about the ACA

In his first Congressional address last week, President Trump made the following statements (19). I’ll explain how each and every one of them is patently false and deliberately misleading.

680918-200“Tonight I am also calling on this Congress to repeal and replace Obamacare with reforms that expand choice, increase access, lower costs, and at the same time provide better health care. Mandating every American to buy government-approved health insurance was never the right solution for our country. The way to make health insurance available to everyone is to lower the cost of health insurance, and that is what we are going to do. Obamacare premiums nationwide have increased by double and triple digits.”

maThe ACA includes a mandate that everyone should have health Insurance, but that mandate actually only affected a small percentage of Americans. In 2015, 49% of Americans get health care insurance through their employers, and 20% receive Medicare because they are either retired or disabled. This did not change much because of the ACA. 14% of Americans receive health insurance because they are income eligible for Medicaid, about 9% purchase their own insurance, and another 9% are uninsured. About half of those without insurance would be Medicaid eligible if their states expanded their programs to include the poor under the ACA. Lowering the cost of health insurance will not change those numbers. As I said before, the ACA has actually slowed the rate of health insurance premium increases by 32% if compared to what they would be without the ACA. What is meant by “lowering the cost of health insurance” is removing the minimum standards defined by the ACA and letting insurers sell inferior plans across state lines to employers and the self-insured that do not cover as much, have higher deductibles and impose limits on the care one can receive, both in terms of the actual care and the quantity of care.

680918-200“As an example, Arizona went up 116 percent last year alone. Gov. Matt Bevin of Kentucky just said Obamacare is failing in his state — and it is unsustainable and collapsing. One-third of counties have only one insurer, and they are losing them fast. They are losing them so fast, they are leaving, and many Americans have no choice at all. There is no choice left.”

Is this true? Yes and no. According to CNN, “The Department of Health and Human Services confirmed the Obamacare premium increases for 2017 in the final months of the Obama administration — an average of 25% in states served by the federal Obamacare exchange, healthcare.gov. Arizona was slated to see an average 116% premium increase, the highest of any state by far. These hikes are for the benchmark silver plan upon which subsidies are based.” (20) The premium increases cited by President Trump are before federal subsidies are accounted for, and for many middle and lower income families, the premium increase will be less than 2%. The ACA subsidies were designed to offset premium increases for those who could least afford them. (21)

As to the number of counties with “only one insurer”, although this is true it is deliberately misleading. The number of counties with just one health insurer selling on Healthcare.gov did rise from 182 counties in 2016 to 960 counties (out of a total of 3,142) in 2017. (22) Once again, remember that this affects only the 1 out of 10 Americans who purchase their own insurance plans. More importantly is the question of why insurers have dropped out of these state exchanges, and the answer to that has little to do with the ACA.

UnitedHealth announced in April that it would stop selling on the marketplaces after suffering more than $1 million in losses. Aetna followed in August, reducing the number of states where it sells from 15 to four. Although UnitedHealth’s decision to drop out seems based solely on profitability (24), Aetna’s decision has been found by a Federal judge to be a response to a federal lawsuit blocking its proposed $34-billion merger with Humana. Aetna threatened federal officials with the pullout before the lawsuit was filed, and followed through on its threat once it was filed. (23)

The ACA is having growing pains, but it certainly not imploding or failing. Despite all of the uncertainty being created by the rhetoric of the GOP, 12.2 million Americans signed up for coverage this year. Couple with Medicaid expansions in 31 states, these two arms of the ACA has brought health insurance to over twenty million people. (29)

680918-200“Remember when you were told that you could keep your doctor and keep your plan? We now know that all of those promises have been totally broken.”

Yes, before and during the roll-out of the ACA President Obama made this statement repeatedly. It was inaccurate but the reason why a very small number of people found their plans canceled by their insurers was because the insurers decided to cancel them. The ACA actually included provisions that allowed those plans to be grandfathered, basically exempting them from complying with the new law. That exemption also included a provision that grandfathered plans could not be altered. Once insurers decided to offer only plans that complied with the ACA standards, they canceled the plans.

Obama’s “promise” was intended to convey that those who already had insurance through their job or through Medicare would not be forced into the new health-care exchanges. At the same time, his statement did not convey the fact that those with skimpy coverage would likely be required to purchase upgraded plans that complied with the standards set by the ACA. (25)

Keep in mind that 3/4 of medical bankruptcies occurred with people who had health insurance plans that not only excluded people with preexisting conditions but also imposed caps on coverage, the very things that the ACA eliminated to protect patients from insurers. To put this in perspective, the best estimate of how many people were affected by this is around 2.6 million, about 10% of the 22 million people who buy insurance on the marketplace. That’s less than 1% of the 320 million people with insurance, and over half of them were likely eligible for federal subsidies because of the ACA. (26)

Let us look at the five guiding principles also mentioned by President Trump in his address.
680918-200“First, we should ensure that Americans with preexisting conditions have access to coverage, and that we have a stable transition for Americans currently enrolled in the health care exchanges.”

Access to coverage does not mean access to affordable coverage. Access to coverage does not mean a right to have coverage. Both as President and as a candidate for President, Donald Trump repeatedly pledged that his plan to replace Obamacare would involve “insurance for everybody.” What he did not say to Congress was that he wants to ensure that health plans can’t discriminate against Americans with preexisting conditions. Instead, he says he wants to make sure that those people have “access to coverage.”

2009-10-14-denied_iconIn fact the leading plans on Capitol Hill, which require insurers to offer coverage to everybody, also lets health plans charge higher prices to people with preexisting conditions who have a break in coverage. That is a lot of people: Before the ACA, the Commonwealth Fund in the mid-2000s estimated that about 36 percent of Americans had a gap of coverage at least one month long in an average year. Although the Republican replacement plan for the ACA may include some protections for those with preexisting conditions, it will be weaker than what exists now, under the ACA. (27)

680918-200“Secondly, we should help Americans purchase their own coverage through the use of tax credits and expanded health savings accounts. But it must be the plan they want, not the plan forced on them by our government.”

The ACA already includes tax credits (and subsidies) to help make coverage more affordable for low- and middle-income Americans. The tax credits are on a sliding scale, giving more financial help to the Americans who earn the least. Republicans are battling amongst themselves on this issue. Centrist congressional leaders favor continuing the tax credits, though some would favor basinimagesg them on age rather than income. Other more conservative republicans in Congress are opposed to any tax credits. They worry that this will create another level of entitlement programs, without doing anything to decrease insurance premiums. This is the currently the biggest battle going on within the Republican party. President Trump’s comment to Congress is a deliberate attempt to shift that battle, but it remains to be seen how responsive to it the conservatives will be. (28)

680918-200“Thirdly, we should give our state governors the resources and flexibility they need with Medicaid to make sure no one is left out.”

Medicaid now provides health insurance to 73.5 million Americans in all 50 states. Medicaid expansions in 31 states funded by the ACA have brought health insurance to 14.5 million people, 3 million of which were already eligible for Medicaid before the ACA but just did not know it. The President’s language is deliberately vague, as many Republican Governors and Senators are pushing to maintain the Medicaid expansions. If Medicaid is altered, the leading plan likely to gain majority support is the conversion to block grants I mentioned before.

Cd99c4b93321e61c40d15c4cf41e90806hanging how Medicaid functions and how money is brought to the state level by the federal government is an incredibly complex and politically risky issue. Currently, the feds reimburse states for a certain percentage of their state Medicaid expenses. Only those new enrollees (11 million people) are reimbursed at a higher rate (90% in 2020) under the ACA. The other 64 million people covered by Medicaid are reimbursed by the feds using a percentage that varies from state to state, depending on economic factors.

Looking at how that money is currently spent is a glimpse into how complicated it would be to simply convert the program to block grants that would “make sure no one is left out”. Breaking down Medicaid’s $530 billion annual budget shows us that 42% goes to managed care organizations (Health Maintenance Organizations and Prepaid Health Plans), 30% goes directly to fee for service acute medical care (hospitals and doctors), 21% goes to fee for service long term care (nursing homes). A small percentage goes to Medicare (3%) to pay for Medicare premiums for those enrolled in both programs, and Direct Hospital Subsidies (3.5%) are paid directly to hospitals which provide large amounts of charity care to those with no insurance. (30)

Converting this program to a simple per capita block grant system will be a complete disaster. States are currently required to contribute between 30% and 50% of the money their programs use, and under a block grant-style of federal funding, those requirements would certainly be weakened. Coupled with the lack of flexibility in block granting the funds into the future to match unexpected growth during times of economic recession or drastic increases in health care costs due to an unstable health insurance system, it is a recipe for disaster.

680918-200“Fourth, we should implement legal reforms that protect patients and doctors from unnecessary costs that drive up the price of insurance and work to bring down the artificially high price of drugs, and bring them down immediately.”

The first part of this point seems to be a reference to medical malpractice reform, which actually has not been a major part of the Republican effort to replace the ACA. The Congressional Budget Office does not even score medical malpractice reforms like capping payments to patients as meaningful in lowering health care premiums in any fashion.

d_1xThe second part, regarding the cost of prescription drugs, is interesting. Previous statements by President Trump have included “We’re the largest buyer of drugs in the world. And yet we don’t bid properly. We’re going to start bidding.” Unfortunately, the prescription drug coverage provided by Medicare Part D, which was passed under President Bush in 2003, does not allow Medicare to bid or negotiate drug prices with pharmaceutical companies. This was partly resolved by the ACA when a 55% discount was negotiated for Medicare Part D recipients with the pharmaceutical providers that includes most medications. Also, because of the ACA, the infamous “donut hole” where recipients are required to pay high prices for medications until huge annual deductibles are reached is being closed and will be gone by 2020. (31) In the meantime, the “Extra Help” program was implemented as part of the ACA to provide financial assistance for those Medicare recipients making less than $13,000 a year and provides up to $4,000 of help annually in purchasing medications. (32) Simply put, repealing the ACA will actually result in higher prices for drugs for Medicare recipients.

680918-200“And finally, the time has come to give Americans the freedom to purchase health insurance across state lines, which will create a truly competitive national marketplace that will bring cost way down and provide far better care. So important.”

Since the start of his campaign, President Trump has called for an end to the ACA restrictions that prevent health insurers from selling insurance across state lines. He has repeatedly stated that he wants to be able to allow insurers in one state to be able to sell insurance in other states, even if the plan they are offering does not meet the other states mandates and regulations. This does not really make any sense, since health insurance plans rely heavily on having a local network of providers, both hospitals, and doctors, in order to keep costs lower and profit high. There is zero evidence that this would bring down costs or actually increase consumer options. Most state level officials do not even like the idea, as it would limit their own ability to regulate the market within their own states. (28)


What President Trump did not say to Congress

He didn’t say anything about how this would be paid for. Repealing the ACA means repealing the funding mechanisms that were a part of it. More importantly, he did not even mention the most controversial and contested part of the ACA- the mandate that everyone should have health insurance. The currently proposed Republican plan disguises the mandate as a requirement maintain continuous coverage or face much higher costs for pre-existing conditions if they don’t. (28) President Trump’s choice of Tom Price to head the Department of Health and Human Services gives us an idea of what they have planned. As a Senator, Price has proposed to change the pre-existing conditions exemption in the ACA to a qualified restriction that allows insurers to deny or charge more for anyone who has had a break in insurance coverage in the previous 18 months. This means that losing your job can not only lose your employer provided insurance, but if you develop a “pre-existing” condition you will be once again at the mercy of insurers who will likely deny you insurance. It will change the right to insurance guaranteed by law under the ACA to a penalty imposed on people who become sick.

Before the ACA, 30% of all adults under the age of 65 were uninsured due to conditions like cancer, heart disease, diabetes, and obesity. Millions more had premiums that made their insurance unaffordable. Women were routinely charged more than men for the same health insurance. The ACA ended all of this, by requiring that everyone must have insurance. This spread out the cost of insuring those with illnesses or other reasons for higher costs across a larger, healthier population. This allows insurers to provide the insurance required to cover everyone and still stay profitable. We can not have guaranteed coverage for everyone regardless of pre-existing conditions without the mandate that everyone has insurance, one can not exist without the other. (33)


So now you hopefully see what I meant at the beginning…. The Republican party finally has the ability to repeal and replace the ACA, but they are hesitant. Now that it is within their grasp, all they really need is leadership. All they are getting is confusion and conflict. Their party leadership shouts turn right, the President shouts turn left, and all those satisfied voters are shouting go straight ahead.

It is up to us to tell them to turn on the GPS and follow the directions set by the ACA. We need to be united in telling them we, the people, think America is already great. Equal access to health care is where we begin, and we are almost already there.

We can do better. Together, we will.


How you can help protect the ACA

First of all, share this blog. Follow it so you can get updates.Talk about it with your friends and family.

Follow the links I’ve included below and learn more about the different parts of this issue.

Most importantly, schedule a few minutes this week to make a few phone calls to your state senators and representatives. Better yet, if they hold a Town Hall meeting go and ask them questions.

Tell them you will hold them accountable if the ACA is repealed or defunded. They are the ones who actually can make or break President Trump and Speaker Ryan’s plans to damage Medicare, Medicaid and the ACA.

Let your elected leaders know that you are promising to vote against them in 2018 if they do not stand with you.

They respond to this threat, in fact, it is the one thing that motivates them the most… our votes.

Send postcards to them as well. Buy a card that has your state name on it, or buy the ones I’ve created at CafePress (see below). Write them a short message, letting them know you will not vote for them and their party at the next election if they repeal or damage the Affordable Care Act.

And if you live in one of the 19 states that have not expanded Medicaid, call you Governor and elected state congresspeople and tell them to start caring for the working poor of your state… and fight to be able to expand Medicaid for the working poor in your state! Thousands of people across the country are literally dying from preventable diseases and illnesses every year that they use this issue for partisan purposes.

expansionmap.jpg


Important Information

Find out who your congresspeople are, along with their addresses and phone numbers.
https://www.usa.gov/elected-officials

To buy ready-made postcards with this message pre-printed.
http://www.cafepress.com/fierceadvocacy.2046100784

To find Town Hall meetings near you that you can attend.
https://townhallproject.com/

To find Protests that you can attend.
https://www.resistancecalendar.org/

To get even more involved in changing the future.
http://www.commoncause.org/

I am leaving comments on for this post. If you have questions, ask. I’ll answer.
If you prefer to do so privately my personal email is garyvotour@gmail.com.

Tell Congress…
Keep Your Hands of Our Healthcare!

Let them know you want them to
Preserve Medicare!
Expand Medicaid!
Repair the ACA!

References

(1) http://wiredpen.com/resources/political-commentary-and-analysis/a-visual-guide-balance-of-power-congress-presidency/
(2) http://www.pbs.org/wgbh/frontline/article/the-republicans-plan-for-the-new-president/
(3) https://www.healthinsurance.org/obamacare-repeal-votes/
(4) https://www.donaldjtrump.com/positions/healthcare-reform
(5) http://www.cnn.com/2016/11/13/politics/kellyanne-conway-trump-special-session-congress/
(6) https://www.washingtonpost.com/news/monkey-cage/wp/2016/11/14/this-is-why-senate-republicans-might-not-go-nuclear/
(7) http://www.foxbusiness.com/politics/2016/11/14/did-trump-just-endorse-obamacares-most-harmful-provision.html
(8) http://www.nytimes.com/2015/11/15/us/politics/many-say-high-deductibles-make-their-health-law-insurance-all-but-useless.html
(9) http://www.commonwealthfund.org/publications/issue-briefs/2016/may/aca-tracking-survey-access-to-care-and-satisfaction
(10) http://obamacarefacts.com/sign-ups/medicaid-enrollment-numbers/
(11) https://www.cbo.gov/sites/default/files/114th-congress-2015-2016/costestimate/hr3762senatepassed.pdf
(12) https://www.healthinsurance.org/blog/2015/03/04/anatomy-of-a-true-health-insurance-death-spiral/
(13) https://fierceadvocacy.wordpress.com/2016/09/23/handwriting-on-the-wall/
(14) http://obamacarefacts.com/obamacare-medicare/
(15) http://talkingpointsmemo.com/edblog/ryan-plans-to-phase-out-medicare-in-2017
(16) http://www.motherjones.com/kevin-drum/2016/07/another-obamacare-success-its-cut-premiums-30-50
(17) http://www.motherjones.com/kevin-drum/2016/07/another-obamacare-success-its-cut-premiums-30-50
(18) http://obamacarefacts.com/obamacare-facts/
(19) http://www.vox.com/a/trump-speech-transcript-joint-session-of-congress-annotated
(20) http://www.cnn.com/2017/02/28/politics/donald-trump-joint-address-fact-check/
(21) http://www.ncsl.org/research/health/health-insurance-premiums.aspx#Exchange_premiums
(22) http://www.vox.com/science-and-health/2016/10/26/13407610/obamacare-counties-one-insurer
(23) http://www.latimes.com/business/hiltzik/la-fi-hiltzik-aetna-obamacare-20170123-story.html
(24) http://money.cnn.com/2016/04/19/investing/unitedhealthcare-obamacare-exchanges-aca/
(25) http://nymag.com/daily/intelligencer/2013/10/you-like-your-plan-you-can-keep-it-sort-of.html
(26) http://healthaffairs.org/blog/2014/03/03/how-many-nongroup-policies-were-canceled-estimates-from-december-2013/
(27) http://www.commonwealthfund.org/Publications/In-the-Literature/2012/Aug/Gaps-and-Transitions-in-Health-Insurance.aspx
(28) http://www.vox.com/policy-and-politics/2017/2/28/14771954/trump-congress-obamacare-plan
(29) http://www.pbs.org/newshour/rundown/ap-fact-check-trumps-first-address-congress/#.WLbadA-2JP4.facebook
(30) http://kff.org/medicaid/state-indicator/distribution-of-medicaid-spending-by-service/
(31) https://www.medicare.gov/about-us/affordable-care-act/affordable-care-act.html
(32) https://www.ssa.gov/medicare/prescriptionhelp/
(33) http://time.com/money/4644137/obamacare-repeal-continuous-coverage-preexisting-conditions/

ho-postcard

 

 

Where is the Health Care Poverty Gap?

Where is the Health Care Poverty Gap?
By Gary Votour, MHCA

table hcpg
* In Wisconsin, the state is providing Medicaid coverage for adults in 2014.

The Affordable Care Act is already cutting health care costs, especially at hospitals that in the past provided charity care for uninsured, low-income patients. The reduction in charity care in states that have expanded their Medicaid programs with federal funds means the costs for this care are no longer being shifted to insured and self-paying patients, which makes health insurance more profitable for hospitals and insurers without increasing consumer costs.

But this drop in costs is happening only in the states in about half of the nation that have expanded their Medicaid programs. The other states — mostly in the South and the Plains — have been involved in political struggles that have blocked expansion of health insurance for their poor residents.

Expanding state-run Medicaid assistance programs has been called critical for the success of the new federal health care law. In states that haven’t expanded Medicaid, it is currently available to those who have incomes at or below the federal poverty line, which in 2014 is $11,670 for a single person and $27,910 for a family of four. In the states that have expanded their Medicaid programs, the eligibility level is 138%, or $16,104 for an unmarried person and $37,375 for a family of four.

The federal health law was written with this expansion in mind, and it offers most people with incomes ranging from 138% to 400% of the federal poverty level the opportunity to be eligible for federal subsidies as they purchase health care policies through the new health insurance exchanges.

173353332These subsidies were to be paid for by decreases in Medicare reimbursements to hospitals and doctors. The U.S. Supreme Court decided that the federal government could not force states to expand their Medicaid programs, but the cuts in Medicare reimbursements did not change.

Unfortunately, the cutoff point for a subsidy was set at 138%, leaving those between 100% and 138% with no options in the states that didn’t expand their Medicaid programs. The resistance to Medicaid expansion is creating a poverty gap.

“It’s a crime,” Lisa Dubay, a senior fellow at the nonpartisan Urban Institute, said of the poverty gap. “These are the most vulnerable people in our society. They have no other access to health care. We have no way to take care of them and that just seems wrong.”

Aside from the ethical dilemma of not providing health care to low income people who don’t have the ability to purchase subsidized insurance, there is a significant financial cost for the states that aren’t expanding. This cost is being passed on to providers and insurers alike, and they are beginning to exert pressure on state governments to agree to the federally funded expansions.

In the states that haven’t expanded Medicaid, at least 4,805,380 people are in the poverty PovertyUSAgap.

These people won’t receive federal subsidies to help them purchase insurance, and they will continue to require costly charity care that is shifted to those with insurance and self-payers.

The Americans who fall into the poverty gap in their state also won’t be able to get preventive care they need and this in turn could shorten their lives. In addition, the number of bankruptcies will continue to grow, as nearly 2 out of 3 filings are caused by medical bills.

No one can predict the outcomes of these efforts, but one thing is certain:
The ones who are suffering the most are those being left behind in the health care poverty gap.

Here’s a closer look at four states — Maine, North Carolina, Utah and Virginia — that haven’t expanded their Medicaid programs with federal funds. These states have adopted widely differing approaches to the question of Medicaid expansion.

Maine

220px-PaulLePage
Maine Governor Paul LePage (R)

In Maine, Gov. Paul LePage, a Republican, who has vetoed legislative attempts to expand Medicaid in his state, cites the future costs once the federal subsidies for expansion end. The Democratic majority in the legislature plans to continue to introduce and pass legislation aimed at expanding Medicaid for the 24,390 people who are in the poverty gap.  Jeffrey Austin, vice president of government affairs and communication at the Maine Hospital Association, said the state’s 39 community-governed hospitals need Medicaid expansion to make up for scheduled cuts in Medicare payments. “The logic behind the tradeoff is sound,” he said in testimony. “Hospitals will receive less reimbursement under one program (Medicare) in order to expand another program (Medicaid). When the Supreme Court ruled that Medicaid expansion was optional, it did not rule that the associated cuts were optional as well. So hospitals across the country faced the prospect of significant pain (Medicare cuts) without the bargained for gain (Medicaid expansion). That is why you have seen significant hospital advocacy in favor of expansion in Maine and across the country. So it matters to us that people understand 100% federal financing of expansion in large measure equates to hospital-financing of expansion. Hospitals can not afford $30, $50 and $100 million annual cuts in Medicare without the benefit of Medicaid expansion.

North Carolina

Rick_glazier
NC Representative Rick Glazier (D)

In North Carolina, GOP state legislators have refused to expand Medicaid for the 318,710 people in the poverty gap, and are considering cuts to the state’s Medicaid program. Two weeks ago, 100 members of the North Carolina Hospital Association joined together to tell states legislators how difficult these cuts would make their job of delivering health care to current Medicaid participants. They told lawmakers that government programs pay for 2 out of every 3 patients hospitalized statewide and generally at rates that are below the cost of care. “They mean truly people getting care, people not, people getting jobs, and for some hospitals, they may mean survival,” said Democratic Rep. Rick Glazier. In recent years, after control of both houses shifted to Republican hands, the conservative agenda that trimmed rights and cut back on social services set off widespread citizen protests called “Moral Mondays.” To date, over 1,000 people have been arrested statewide for acts of civil disobedience.

Utah

Gary_Herbert_crop
Utah Governor Gary Hebert (R)

In Utah, Republican Gov. Gary Hebert is trying to work with the federal government to create a program to use federal funds slated for Medicaid expansion in his state to help the 57,850 who would be in the poverty gap purchase private insurance plans. The governor’s plan would use federal Medicaid funds to purchase health care insurance for all residents earning less than 138% of the federal poverty level. Unlike other Medicaid expansions, this proposal would allow Utah to drop the eligibility to 100% of the federal poverty level in three years, when federal officials expect the states to pick up 10% of the cost of the expanded Medicaid programs. Opponents of the proposal are worried that employers will cut back on insuring low-earning employees and that at the end of the three-year pilot project, there will be more uninsured residents if the state returns to the 100% level. Utah House Speaker Becky Lockhart said she would rather use $35 million in state funds for limited coverage. “Attaching ourselves as a state to Obamacare is extremely concerning to me,” she said.

Virginia

Virginia_Governor_Democrats_Terry_McAuliffe_095_Cropped
VA Governor Terry McAuliffe (D)

In Virginia, a court battle is brewing between  and the GOP-led state legislature over 190,840 people in the poverty gap. Citing a moral imperative, McAuliffe tried to use his existing executive powers to create a procedural path to provide Medicaid to Virginia’s 400,000 potentially eligible adults. “Secretary Hazel will have a plan on my desk by no later than September 1st detailing how we can move Virginia health care forward even in the face of the demagoguery, lies, fear and cowardice that have gripped this debate for too long,” McAuliffe said about Bill Hazel, the state’s Secretary of Health and Human Services. Virginia’s House GOP leaders warned the governor that they will block him. “We are prepared to challenge this blatant executive overreach through all available avenues, including the court system, ” said a joint statement recently by Republican House Speaker William Howell. McAuliffe just vetoed seven items, including an amendment passed by Republicans that stated Medicaid can’t be expanded unless the General Assembly explicitly appropriates money for it.

 

This article was originally published on NerdWallet’s Advisor Voices.

Learn more me on NerdWallet’s Ask an Advisor
or visit my web site at Fierce Advocacy.

numberofuninsured
Source: Kaiser Family Foundation

Un-Informed Consent.

Un-Informed Consent.
By Gary M. Votour

If you are a patient facing surgery during a major, life-threatening illness,
or you are a surgeon proposing surgery for that patient,
you MUST read this before giving or seeking informed consent.

Near the end of 2005, my wife Lyn and I were at one of the largest surgical hospitals in the country, waiting to give her informed consent for surgery to remove the second vertebra (C2) from her neck. Lyn had a congenital form of bone cancer, Chordoma. The cancer had been found in a routine X-Ray following a car accident almost a year before and we had been to a half dozen local oncologists and orthopedists before we were sent to a large cancer hospital and then referred to the surgical hospital. Traditional treatments for bone cancer like radiation or chemotherapy had been ruled out long before as too risky or ineffective.

Chordoma Cells

Doctors had told us that with Chordoma, there were only two outcomes if untreated. The first was that the cancer would travel to her head, causing fatal bone spurs to grow into her brain. The alternative was that the weakened vertebrae would simply break apart. If that happened, the spinal cord would be severed, and her brain would lose control of her heart and lungs. She would literally have dropped dead, or had her brain crushed by bone tumors from within.

After months of misdiagnosis and false leads, the doctors at the surgical hospital had finally done a biopsy of the cancer and identified it as Chordoma. This is a very rare type of cancer that only affects hundreds of people each year in the United States. Not only is it difficult to diagnose, but the small number of patients affected by it means very few doctors have experience treating it. The average life expectancy is only 5 to 10 years without treatment, and for Lyn that treatment was a C2 Chordectomy. This entailed the surgical removal of the second vertebrae in her neck, intact, through the back of her throat and its’ replacement with titanium hardware. (About Chordoma, 2008)

Lyn was very fearful of losing her mind if the cancer reached her brain, and had decided to take the surgical route. The confidence of the doctors, especially the surgeon who would be performing the surgery, led her to decide this was her only chance to live a longer life.

Yet I sit here, alone since 2008, missing her. You see the surgeries did not go well. Following the second phase of Lyn’s C2 Chordectomy an ischemic stroke deprived almost a third of her brain of the blood it needed to survive. It left her mostly paralyzed and in permanent pain. The woman who walked into the hospital with me at her side… my wife of almost thirty years… rode home in ambulances six months later. most of which we spent in the Intensive Care Unit (ICU) together. She was unable to walk or eat, with a whisper of a voice, and had a tube in her stomach for feeding, a permanent catheter for urinating, and a bag attached to her stomach where her colon had been removed due to complications during recovery. She cried in her sleep for the next three years, while I sat next to her. I was unable to do anything but manage her care in our home, which had become the ICU we thought we had escaped from. Eventually the results of that stroke, not the cancer, ended her life with her decision to stop eating and drinking. I sat by her side as she took her last breaths.

AdvocacyAfter almost 30 years together, I was left alone with a massive emotional hole in my heart that will never fully heal. For a long time, I focused on surviving the greatest emotional suffering most could ever even imagine, the loss of my wife. I waited for the intense pain of what we had gone through together to abate. Eventually I realized that my heart would always hurt from the loss I felt, and I learned I could live with that pain. I decided to instead focus on giving our experience a greater meaning. I returned to school, earned a Master’s degree in health care administration and became a Patient Care Advocate. From great adversity often come great advocates.

I try very hard not to second guess the decisions we made then to have the surgery, but I have had the most difficulty coming to terms with one lingering question… were we given the information we needed to truly allow Lyn to give informed consent? In order to answer that question, one needs a clear understanding of what informed consent is and the value it provides. I hope that by explaining this answer to patients who are facing similar choices, I can save them or someone they know from making a wrong choice. I also hope to show their doctors how to ensure truly informed consent is given.

I also write this with doctors in mind… if you are a doctor, I hope I can instill in you the desire to examine how you pursue consent from your patients. Although what I am about to say may make some of them uncomfortable, my goal is to help them to live well with the ethical ramifications of the pursuit of consent by ensuring that consent, when given, is truly an informed decision.

So let us start at the beginning. What is informed consent?

The origins of the concept of informed consent are found in the ethical principles of enhancing a patient’s wellbeing (do no harm) and the need for respecting a patient’s right to make decisions for themselves that are based on factual information (autonomy). This belief has its roots in a famous court case almost 100 years ago which stated “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” The value this has comes from how it is now interpreted: that every patient “should be able to participate in decisions about their medical care, weighing the risks, benefits, and alternatives of a proposed intervention to ensure that the care they receive reflects their goals, preferences, and values.” (Meisel and Schenker, 2011)

omd0910_a09_fig01Informed consent is generally given in the form of a patient signature on a form prior to every procedure or treatment in a health care setting, from surgery to participation in clinical trials. As described by Aiken (2009), it has 8 components. The form must include the name of provider(s), the patient diagnosis, a disclosure of conflicts of interest, a description of the procedure or treatment and its purpose, a description of the potential risks, likely outcome and available alternatives and a statement of consequences of no treatment. Health care professionals have several key responsibilities when seeking informed consent. It is specifically the responsibility of the physician performing the procedure/treatment to obtain the consent, although the actual presentation of the form can be accomplished by his/her authorized agent, such as a Physician’s Assistant. Others providers (ex. nurses) can act as witness to the signature. Effort must be made to ensure that patients who speak a different language are provided with translation services. When circumstances require a third party (a spouse or other proxy holder) to give the patient’s consent, the conversation leading to that must be documented as well.

Truly informed consent requires a truthful statement of the potential risks and most likely outcomes.
What happens when we can not trust our doctors to be truthful to us, or even possibly to themselves?

In a 2009 survey of over 1900 doctors was conducted by the journal Health Affairs. They found that “approximately one-third of physicians did not completely agree with disclosing serious medical errors to patients, almost one-fifth did not completely agree that physicians should never tell a patient something untrue, and nearly two-fifths did not completely agree that they should disclose their financial relationships with drug and device companies to patients. Just over one-tenth said they had told patients something untrue in the previous year.”

That means a third of the doctors surveyed would hide an error, a fifth of them felt it was all right to mislead a patient regarding the truth, and a tenth of them admitted to lying to a patient within the last year. That equates to a fair amount of uncertainty that a doctor will always be honest even if you ask them the right questions when deciding to give informed consent. (Lezzoni et al, 2012)

So… as shocking as it is to realize some doctors will admit to lying about errors,
does that mean they would be less than truthful when seeking informed consent?

ann_dishonest_doctor_120208_wgApparently it does. ABC News in 2012 ran a story called “8 Things Your Doctor’s Not Telling You”. On the list of what they will not say is “I’ll always push surgery”. They reported that many doctors will always recommend surgery as the only option, even when studies show that some surgeries do not actually improve patient outcomes at all. “You should always ask what the alternatives are to surgery, including an approach that most physicians feel uncomfortable offering: to do nothing,” stated Christopher Meyers, head of the Kegley Institute of Ethics at California State University.  (Dailey, 2012)

All too often we make choices based on incorrect information. Lyn had been told the cancer would proceed a certain way, but my own research later shows that was not a certainty. Without evidence of growth, a Chordoma site can stay dormant for years. Despite multiple X-Rays, CTs and MRIs there was no evidence to indicate that her lesion had grown in the ten months since it had been discovered.

If it was me, I’d have the surgery.”
or
 “If it was me, I’d skip the surgery and live my life to the fullest.”

Not only were there possible flaws in Lyn’s diagnosis, there was an absence of personal opinions from those recommending the surgery. Not one doctor ever said “If it was me, I’d have the surgery.” Nor did they say, “If it was me, I’d skip the surgery and live my life to the fullest.” We did not ask them that question. We assumed that because they proposed it as a solution for her, it was what they would have chosen for themselves. And today, looking back, I believe that assumption was the single greatest mistake we made.

I recently read an article written by Ken Murray, a physician at USC titled “How Doctor’s Die.” What he had to say on this subject made me think hard on what had happened to Lyn. He wrote, “Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill persodoctor.rn near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist.”

Those are strong words indeed…
“misery we would not inflict on a terrorist.”

He is correct… when futile care is brought to bear on a terminal illness, what is accomplished? Often it nothing but pain, suffering and anguish. The last few days or weeks are spent clouded with medication to relive the pain and suffering, and often that pain is from the treatment itself. If there is no cure to grasp, no solution at hand… why then do we as patients often choose futile care rather than begin to prepare for death? I used to think it was because we are tenacious beings who simply want to live no matter what the cost. I felt that every day lived, regardless of accomplishment within that day, was important. I was wrong. This is the bitter pill of health care we all will likely face someday, either for ourselves or with someone we love… and it is simple.

Accepting death in the face of a terminal illness is not giving up. I am not advocating that everyone with an illness that is terminal should forgo treatment… That is not what I mean. What I am talking to you about here is the situation where there is no realistic treatment that will have a positive outcome. It is fine to buy more time with treatment, but I am stating that we all need to understand what the quality of that time would be when making the decision to pursue it.

hospital-300x199When a surgery has a high risk, we are making a choice between treatment and doing nothing. Would we give up up months spent living, spending time with our friends and family, fulfilling our dreams and goals, checking off the items on our individual ‘bucket lists’… in exchange for a year or two spent extension of life spent in pain, staring at a ceiling, watching those who love us suffer along with us? Sometimes that is the actual question we are answering when we decide to give consent to a treatment or not. Sometimes giving informed consent means asking yourself “Do I trust this doctor to cut me apart and reassemble me without error?” Those are the actual choices Lyn made when she gave her consent. I believe we do not always receive the information we need to make that informed consent… and we need to understand why.

Dr. Murray believes the reasons for this are three-fold: the patients, the doctors and system. Patients facing a life ending illness are scared of dying and overwhelmed by despair. Desperate for a different outcome, when a doctor offers them a choice of survival, no matter how slim it is, they grasp at it without thinking of the alternatives. If you are drowning and someone throws you a life preserver, do you look to see if it is tied to a boat or an anchor? It is hard to blame a dying patient for wanting to live and despair does cloud one’s judgment.

Then there are the doctors. Dr. Murray points out, even doctors “who hate to administer futile care must find a way to address the wishes of patients and families.“ He argues that because many doctors are poor communicators, they often find themselves in situations where they agree to the wishes of a patient and their family. They lack the ability to explain the downside of a particular treatment or course of action, and focus on the outcomes that end in success. It is, after all, a calling to save lives that brought most of them to their chosen occupation. Take his opinion along with the study I mentioned earlier… factor in that percentage of doctors who will lie about errors or give a rosier picture of a prognosis… and the blame shifts even more to them.

co-surgeons-300x198I would add that, from my personal experience, sometimes it even goes a bit further. Surgeons in large hospitals are often under extreme pressure to perform high risk procedures to gain acceptance from their peers. Even the very best surgeons are often in a competitive environment, where their fellows grant them acclaim and acceptance based upon their ability to perform complicated procedures. Being able to meet the high performance standards set by others in their own field can drive them to minimize the risks of a procedure and even overstate their own skills when seeking a patient’s informed consent. When this occurs, the patient facing a high risk surgery is not always given a clear understanding of the realistic risks of complications.

It is indeed unfortunate that Lyn’s doctors were not more like Dr. Murray. He describes his approach “…of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly.” Lyn’s doctors spoke in clinical terms like ‘transmandibular approach’ and stated a risk level no higher than any other surgery. We did not know that there were other, less risky approaches that could be used to gain surgical access to the tumor. In surgical reviews of this procedure, this approach is defined as “provides the most complete exposure, but it is a morbid procedure and is associated with the risk of complications.” (Celtiklioglu, 2001). The term morbid is defined from its Lation roots, where morbi means to “to die” and is generally defined in medicine as meaning “Adverse effects caused by a medical treatment such as surgery.” (Morbidity, defined. 2013)

Doctor’s need to supply a patient with a complete view of the risks of the surgeries they seek consent to perform. They need to use words that patients can fully understand when explaining procedures and risks, and have an actual discussion of the risks of any surgery, not simply a passing statement of the likelihood of complications.  If any of the doctors on Lyn’s consultation team had shown us the stroke care floor at the rehab we ended up in and told her she could end up there, I am certain she would have taken those few months or maybe even years walking, talking and living instead.

Then there is the system itself. Once again, Dr. Murray sums it up. “In many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.”

All of this leads me to one inevitable conclusion, the one and only answer to the question that plagues me still.  Lyn didn’t say no to the surgery because she had truly no idea what could happen.

Back we go to that day a little over six years ago when they explained to Lyn what the surgery entailed while seeking her informed consent. Using clinical terms like ‘transmandibular approach’, barely discussing the elevated risks, and never once discussing the alternatives, Lyn was not told whether they would have the surgery themselves if faced with this diagnosis. I know we did not ask, but we did not know enough to be able to. They did know the risks and the high likelihood of failure and complications, and had an ethical obligation to tell Lyn what they knew. But they did not do so.

imag014Consent was given that fateful day,
but it was not an informed one…
and there’s my answer.

I just wish I could accept it. I can understand now why Lyn made this choice, but that’s only because in hindsight I have knowledge that comes from study and wisdom that comes from experience. All I can do now is help others not to make the same mistakes, and if they do help them improve their outcome. As patients we are evolving into far more educated consumers. As more educated consumers, we are demanding transparency and the truth that comes along with it.


I am not alone in this belief. David Mayer, a doctor who speaks about the growing need for transparency, sums up this need quite succinctly. He writes, “[Our patients] want Transparency in outcomes. …They want Transparency in shared decision-making. Informed consent doesn’t cut it anymore. More and more patients want their caregivers to fully understand their values, preferences, needs and goals before any discussions on care options, risks, benefits and alternatives begin. They want information on the hospital and their physician’s experience related to the procedure they will undergo–more succinctly–how many similar procedures have we performed, and how well have we done? They want to know our infection and complication rates. And more and more patients also want to understand the costs related to different treatment options. … It is my opinion these new patient demands for transparency have been long overdue, are badly needed, and will help move us to a more cost-effective, higher quality, lower risk patient care model. It will be a new and better health care system, but history has taught us change will not come easily or quickly.”

He also instructs doctors on how to better reach out to their patients. “…When you enter a patient’s room, instead of standing at the foot or side of the bed (as I had done for so many years) pull up a chair, sit down and have a true conversation with them. Research has shown that patients perceive caregivers who did this to have spent twice as much time in the room with them, versus a comparison group of physicians, who actually spent the same amount of time with the patient, but stood at the foot of the bed while talking to them.”

So I say, veteran_with_doctor_bedsideon behalf of Lyn and all other patients who have given un-informed consent, to every doctor:

Sit next to us, and explain it to us
as if was you lying in this bed.

Tell us if you would have this surgery or treatment yourself whether we ask the question or not.

Remember we are desperate to survive our
illnesses and injuries and may not think to ask.

Above all else, tell us the truth.


Sources

About Chordoma. (2012). The Chordoma Foundation. http://www.chordomafoundation.org/chordoma/

Aiken, T. (2009). Legal and Ethical Issues in Health Occupations. St. Louis: Saunders Elsevier.

Celtiklioglu, Feridun. (2001). A new case of a branchial cyst of the parapharyngeal space. Ear, Nose and Throat Journal. June 1, 2001 http://www.thefreelibrary.com/A+new+case+of+a+branchial+cyst+of+the+parapharyngeal+space-a076877194

Dailey, Kate, 20120. “8 Things Your Doctor’s Not Telling You”. ABC News, April 20, 2012 http://abcnews.go.com/Health/Wellness/things-doctors-telling/story?id=16175754

Lezzoni, L., Rao, S., DesRoches, C, Vogeli, C and Campbell, G. (2012). Survey shows that at least some physicians are not always open or honest with patients. Health Affairs. February 2012, vol. 31 no. 2 pp.383-391. http://content.healthaffairs.org/content/31/2/383.abstract

Mayer, D. 2013. Sitting Down with Patients. Educate the Young. March 18, 2013. http://educatetheyoung.wordpress.com/category/patient-advocacy /

Meisel, A. and Schenker,Y. (2011). Informed Consent in Clinical Care: Practical Considerations in the Effort to Achieve Ethical Goals. Journal of the American Medical Association. AMA. 2011;305(11):1130-1131.

Morbidity, defined. A Wiki based open content dictionary. June 7, 2013.
http://en.wiktionary.org/wiki/morbidity

Murray, K. (2011). How Doctors Die: It’s Not Like the Rest of Us, But It Should Be. California HealhCare Foundation, Zocalo Public Square. http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

Medical Air-rogance

Medical Air-rogance
by Gary M. Votour, MHCA

In the middle of February, 2006, I had been living in the neurosurgical ICU for the last few weeks hoping for my wife, Lyn, to wake up from a coma following a massive stroke. The stroke was a result of a high risk surgery to remove a cancerous vertebrae from her neck. Her surgeon had told us that the stroke had occurred becaus_dsc0213_475x316e Lyn had a congenital defect in her heart that had allowed a clot to reach her brain during the surgery. There was no evidence that this was the cause, and despite many tests in the coming weeks, there never was.

An expert neurosurgeon from another hospital had been flown in to consult on Lyn’s case. He had agreed with Lyn’s surgeon that the theory about her heart was valid and suggested some follow-up tests. While he was there he presented several of his cases to the surgical team of the hospital and, strangely, I had been invited to attend the presentation. I sat through a three hour presentation and watched with horror as he showed slides of his patients surgeries. I was the only person in the room not wearing a white coat. At the end he presented what he said was his most successful case.

He told us he couldn’t show pictures of the patient because the patient had not given consent, but that he had decided he could show what had been removed during the surgery. On screen was a female body, from the lower abdomen down, lying on a stainless steel table. The patient had a spinal cancer that was very advanced, and he had removed her hips and legs in order to save her life. He went on to tell the room how well she had done following the surgery, even recovering to the point where she was able to return to work as a secretary, although she had to sit in a bucket instead of a chair.

Then he explained that despite all he had done for her, she had let him down because years later she died from lung cancer. He said it was because she had so little respect for herself that she did not quit smoking. While many of the older doctors laughed along with him at that comment, most of the younger residents did not. I felt like I was in a room surrounded by humans who had fallen from God’s grace.

At the end of the presentation, I was waiting for the elevator when Lyn’s surgeon and the expert approached me. He said how much he respected me for staying by Lyn’s side, and reassured me that her surgeon had not caused the stroke. Then he asked me if I wanted to go to lunch with them. I turned away, and with a mouth tasting of bile, I said words I will forever remember… “No thank you. There would never be a restaurant large enough go hold both of your egos and still have room for me to sit in.” Foregoing the elevator, I walked down the nearby stairs, back to Lyn’s side.

Years later, I read what Max Lucado has written about air-rogance. He used the term to compare arrogance to climbing a mountain and breathing thin air.

“You can climb to high for your own good. It’s possible to ascend too far, stand to tall, and elevate too much. Linger too long at high altitudes, and two of your senses suffer. Your hearing dulls. It’s hard to hear when you are higher than they. Voices grow distant. Sentences seem muffled. And when you are up there, your eyesight dims. It’s hard to focus on people when you are so far above them. They appear so small. Little figures with no faces. You can hardly distinguish one from another. They all look alike. You don’t hear them. You don’t see them. You are above them.”

I realized that on that day I had briefly visited that mountain. What I saw there scared me so much that and I quickly climbed back down to reality. Many of the doctors in that room had been there so long they actually saw nothing wrong about their laughter regarding that patients death. They saw nothing disrespectful about that image of a discarded life, burned now into ca93bb6d5753fcf422bb810e3866a0e9my memory. Worse than all of that, they acknowledged they felt the visiting surgeon had the right to be angry and disappointed that his patient had shown HIM such disrespect. Only the newer ones, hoping to find acceptance amongst their seniors but not fully acclimated to the thin air, remained silent.

I believes God hates human air-rogance. It must make him very sad when people, especially doctors that he has gifted with great life-saving skill, decide to live on that mountain. I believe God hates to see his children fall from His grace. The Bible has much to say about pride and arrogance, many of which we have all heard before: “When pride comes, then comes disgrace, but with humility comes wisdom…. Do not keep talking so proudly or let your mouth speak such arrogance, for the Lord is a God who knows, and by him deeds are weighed… Pride only breeds quarrels, but wisdom is found in those who take advice… The eyes of the arrogant man will be humbled and the pride of men brought low… Pride goes before destruction, a haughty spirit before a fall.”

The most relevant quote is in Obadiah 1:3 “The pride of your heart has deceived you, you who live in the clefts of the rocks and make your home on the heights, you who say to yourself, ‘Who can bring me down to the ground?’ ” Isn’t it amazing that words written so long ago continue to have such relevant meaning? “The pride of your heart” is the arrogance that comes from unbalanced egotism. I say “unbalanced” because egotism is not necessarily a terrible thing- it is much like self-confidence, and it can come from a sense of self-pride that is well deserved images (5)amongst those who have great skills bestowed upon them. Yet egotism must be balanced by great compassion and humility, for to be uncaring of those who have lifted you up to that mountain is to risk a great fall from God’s grace.

The cure to medical air-rogance is humility. C.S. Lewis once wrote “Humility is not thinking less of yourself, it’s thinking of yourself less.” It means you think of others more than yourself… and is that not why most of you chose a career in medicine in the first place? “Do nothing from rivalry or conceit, but in humility count others more significant than yourselves.” (Philippians 2:3-4)

To those on that mountain, please… Come back down.

The thin air of air-rogance will not sustain you.
You can be forgiven you for being there, but only if you come back down.
When you find yourself breathing that thin air, look for the stairs.Mountain-Stairs-485x728 (1)

 

Keisha’s Kairos Moment

Keisha’s Kairos Moment
By Gary M. Votour, MHCA
A kairos moment in health care… can you name one from your life?
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The ancient Greeks had two words for what we call time. One was chronos, which referred to the linear progression of time itself. Chronos is the one day follows another method we measure the passage of time with, as in “yesterday, today and tomorrow”. Whenever we measure time in seconds, minutes, hours, days, weeks, years, decades or centuries, we are speaking of chronos time, or as we more commonly call it chronological time.
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The Greeks also had another word used to define time, kairos. This unique word is lost in our language, but its meaning is still with us. Kairos refers to specific moment (or moments) of time where we make a decision based on possibilities presented to us in that very moment. What makes these moments in time different than chronos time is their potential. A kairos moment has the potential to change the future based on the decision the person experiencing the moment makes. Obviously, in some ways life is filled with reflexive kairos-like moments. We couldn’t walk down the stairs without falling down them if we didn’t decide to move our feet forward and down with each step. Kairos moments are somehow different, moments where we make decisions we should not make casually or based on reflex.
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kairosA kairos moment can be the second when a  someone decides to say “I do” to a marriage proposal, or it can be the moment you and your spouse decide you want to have children. It can even be the moment you decide to give a homeless person the extra ten dollars you found in your wallet this week. A true kairos moment is when God gives us a unique opportunity to make a mindful decision to make a difference in our own or someone else’s life. A kairos moment in health care is no different, for both patients and providers alike.

Putting aside his own feeling that he has failed to save a life, a doctor decides to advise a terminally ill patient that the treatment they are seeking may prolong their life but will likely have an adverse impact on the quality of the time they have left. He recommends they consider hospice instead of treatment. A nurse chooses to speak up on behalf of a patient in her care regarding the ethics of a doctor, knowing that although it will likely improve her patient’s outcome she will probably have to face repercussions from the respect she is given professionally by that doctor and her own peers in the future. A therapist decides to visit a discharged patient at their home to give them moral support in their recovery, knowing that it is against her employer’s policy to do so and risks punitive action from her employer by doing so.

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These are all examples of kairos moments in health care, where health care providers make a decision when they feel God has given them the opportunity to make a decision that shapes lives, a chance to express their compassion and love for the people they care for, regardless of the personal consequences. I have personally witnessed examples of all of these decisions, and can testify to the power they had to make a difference in the lives of others.
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KairosPSD
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It is not just providers that are given these opportunities to make life altering choices. Patients, family members and friends get these wonderfully unique opportunities given to them when someone they or someone they love is recovering from an illness or injury or even dying from a terminal disease. Visiting in the hospital, offering a meal, offering  companionship and even consciously praying for someone all have the potential to be kairos moments. Sometimes it goes even deeper, and we find ourselves challenged by God to make the right ethical or moral choice.
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In 2006, I was living in the ICU of a major surgical hospital in Boston. My wife, Lyn, was struggling to survive a surgical stroke. We were in that ICU together for weeks on end, and I met other family members who were struggling as well.  At my worst one day, when I was filled with self pity and feeling hopeless that we could possibly survive the ordeal, I met a young woman I will call Keisha and her parents. I’ll never forget them. Once I tell you about them, I doubt you will either.
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Keisha was 17. I met her parents in the waiting rooms one day, and they let me visit her whenever I wanted. She was an awesome young lady that I will never forget. She had been having tumors in her brain sue to a rare form of cancer all of her life. Over a dozen surgeries over a ten year period removing tumors had been performed successfully. She was back this time because after a two year remission, her latest scans showed three new ones. Keisha and her parents had decided to tempt fate one last time.
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I first met her a week before her last surgery, so I did not get to know her very well. But I will never forget the first time we met. She was sitting in her bed, her scarred head shaved and prepped. Just sitting looking out the window.  I told her about Lyn, who was three ‘rooms’ away. I asked her if she’d like some company, and she said, “Sure. Pull up a chair”. I asked her what we were looking at. It was snowing outside and we were up on the 12th floor, so all you really could see was the snow swirling around outside the window.  She told me, “Outside.. we’re just watching outside. I need to know it’s still there waiting for me.”
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I sat there, quietly looking outside with her for an hour or so. We didn’t say much. Then she started to cry. I reached over and held her hand, and she said “My parents love me so much… but to be honest with you… I hope I don’t make it through this again. I hate watching them suffer along with me.”
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It was an epiphany for me. My eyes opened through all the pain I felt and saw how hard it must be for anyone to actually be so accepting of their own death. To be so selfless and loving that the only reason a fighter – a survivor like her- the only reason she would give up would be her love of others.
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Palliative-CareI remember holding her hand for hours over the next few days, rather it was her holding mine. I would quietly disappear back to Lyn’s side when her parents were around. After they would visit the three of us would get a bite to eat. They told me stories of their daughter growing up, how strong she was, and how they knew she would survive this and that eventually she would be OK, and I knew Keisha was right. She couldn’t live up to their expectations any longer.

I said goodbye to Keisha after her parents left in preop before her last surgery. We held hands as the meds started to kick in. As she fell asleep, she looked at me and said, “Would you tell them I am sorry?” I promised I would.

She did not survive the surgery. She passed on in recovery. I was with her parents when it happened. I sat and cried with her parents, wondering how I could possibly tell them what she had asked. I knew I would probably never see them again after that day.  Then her mother said “She was always struggling and trying so hard… I knew she did this for us. We should have never asked this of her again.” Through my own tears, I looked at her and said “She wanted you to know she was sorry… she asked me to tell you.” Her dad said, “We know. We were both outside when she told you. It was the last thing she said…”

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Keisha and her parents had created one of the most notable kairos moments in my life. I learned that day that the things we promise to do for those who are dying are not as hard as they may seem. It is an honor and a privilege to help someone at the moment of their passing.  I am honored to have known Keisha. My memory of her and her softly spoken words helped me get through what came in the next few years.
I hope it helps you someday.
Keisha would like that.
I share her story to honor her memory.

snowing

Do No Harm, or at Least Make No Profit From It When You Do.

Do No Harm, or at Least Make No Profit From It When You Do.
by Gary M. Votour, MHCA
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There is a really big reason why most Health Care Organizations (HCOs) do not support the changes to our health care system being driven by the Affordable Care Act… and that is that it will cut into their profits. It is time for us, as their consumers, to understand why so we can demand change. Health care in the United States is big business. As costs have been driven upward for the last fifty years, so have profits. Contrary to what many politicians like to say, the health care industry in the United States is not a free market,an economic system in which prices and wages are determined by unrestricted competition between businesses, without government regulation or fear of monopolies. In reality, the health care industry in our country has become a seller’s market,a system in which goods and services are scarce and prices relatively high. (Davis, 2013)
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ImageI am not referring to the occasional emergency room visit for a broken arm or the trip to your primary care provider for antibiotics during a relatively mild illness. In major urban and suburban areas, choices exist for those with more routine medical issues. The proliferation of “Doc in a Box” health care services, which are often franchised out like fast food restaurants, are options for those with insurance or who can self pay, and add value to their service by allowing the convenience of drop-in appointments with little or no waiting time. It is when you or someone in your life is hit with a major illness or a complicated life threatening condition that your options become narrowed to the nearby specialized care providers, and that’s where free market competition ends. When it comes to specialized care it is a seller’s market, and what they are selling for profit is life itself.
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It is all about the profit. We have “for-profit” hospitals and “non-profit” hospitals in this country. Study after study shows hospitals whose decisions are controlled by shareholders seeking profit do not offer services that do not make as much money, which in itself is hardly surprising. Instead, they specialize into the areas where the maximum profit from investment can be made. Hospitals which do not make a profit are more likely to offer the services most people need, like emergency rooms, preventative programs and home care based services. In fact, studies have shown that patient mortality rates increase when nonprofit hospitals switched to become profit-making, and their staff levels declined. Many politicians, sponsored by health care organizations making profit, argue that we need less government involvement, less regulation and more competition. American consumers hear arguments that more privatization and less governmental control will lead to lower costs and higher quality when it comes to the medical care we need. Unfortunately, a lot of people do not understand enough about the economy and what drives it to realize that these arguments are self-serving and spurious. (Porter, 2013)
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ImageThe reality is that HCOs make money providing treatment to patients, and there is money to be made whether the problem being treated is from an illness or from a complication cause by an error. This problem is even more of a concern when the patient has private insurance. A recent study published in the Journal of the American Medical Association (JAMA) found that when patients with private insurance had complications following surgery, hospitals made nearly $40,000 more profit than when there were no complications. For patients insured by Medicare, that profit is reduced to less than $1,800 for the same surgery with the same complications. The profit difference is because Medicare does not reimburse for overhead and fixed costs, it only pays for the items and services directly involved in a patient’s care. Atul Gawande, one of the studies’ co-authors and a Professor of Surgery at Harvard Medical School, said ” The magnitude of the numbers was eye-popping… That’s an indication of the level of perversity here. Having a complication was profitable, and fighting complications was highly unprofitable.”(Shute, 2013)
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The JAMA study indicates that this the case in 90% of the hospitals in this country. The reason is that there is no financial incentive to hospitals to reduce errors. The Affordable Care Act includes changes that will make changes to the system, including reductions in payments for complication related care. A major step forward are changes to Medicare that include bundled payments, where the hospital is paid the same amount for a procedure, with or without complications. They still have to provide the care, they simply will not be reimbursed for it. Even this solution is not going to solve the problem, for hospitals will simply shift the uncharged costs to their patients with private insurance. What needs to happen is reform system wide, an adoption of a consumer driven standard that takes control of the system that is running out of control. Mark Lester, executive vice President of Texas Health Resources, was another of the JAMA studies’ co-authors. “It’s just more evidence that payment reform is key to health care reform. We’ve unmasked some hidden perverse incentives that are just part of our system…. We’re all moving toward payment reform. It’s happening incrementally, because it’s very complex.” he said. (Shute, 2013)
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ImageI am not trying to build a case against a health care system based on profitability. In fact, profit is essential in health care as it can be used to drive innovation, research and ultimately improved levels of care.  If there was no profitability in health care, there would be no doctors, no nurses and no hospitals. In order for them to defend their right to make a decent living, there must be an ethical decision about when and how that profit is made. Amesh Adja summarized this belief in his recent opposing editorial in Forbes magazine. He wrote, “For those who want to preserve and extend the advances in the standard of living that have been made possible by innovations in medicine, the moral defense of profit–against those who view profit as an evil to be banished–is a crucial and necessary step.” His explanation is thorough and thought provoking. “…physicians are often considered by the public to be part of an exalted class who labor tirelessly with no thought other than serving their fellow man and are, for the most part, paid well for their sacrifice. To ascribe profit-seeking to a profession that is heralded as an embodiment of self-sacrifice would offend the sensibilities of the public and many physicians”, he wrote. He is correct, and that is where the thinking needs to change. Consumers and providers both need to acknowledge that health care is built around the concept of profitability. Once we do that, we can begin to decide where it is morally acceptable to  make that profit, and how much profit is enough. I am proposing that we declare complications that are caused by errors are not ethically profitable. (Adja, 2013)
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Can these changes be made without reducing the overall profitability of the health care system?
Of course they can, but not without the cooperation of HCOs
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At The Brigham and Women’s Hospital (The Brigham) in Boston, MA an innovative approach to reducing errors has been introduced and we should all be watching how this unfolds. Since 2011, a monthly newsletter to its 16,000 employees called “Safety Matters” has included anonymous yet detailed accounts of patient errors and descriptions of the steps they have taken to remedy them. By providing the narrative details of specific cases where errors have been made, the leadership of The Brigham are trying to make the steps needed to solve this problem. Dr. Elizabeth Nabel, The Brigham’s chief executive has said that one of her goals is to create a more open culture around medical errors, in which staff can report them and seek help without shame. She even describes the occasion when, years ago at a different hospital, she was repairing a patient’s heart valve when she accidentally punctured a ventricle of the heart with a wire. This caused bleeding and required the patient to undergo surgery.  She did disclose the error to the patient but felt she had no one else she could discuss it with besides her husband. She said, “I felt very insecure and my confidence was shaken… Think about how much easier it would have been if I could have talked to my colleagues rather than living in fear I would get stabbed in the back because I made this mistake.”  (Kowalczyk, 2013)
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Janet Barnes, The Brigham’s executive director of compliance, was at first hesitant about the project.  Concerned that disclosing errors in a public forum could give lawyers grounds for lawsuits, her staff review each newsletter to make sure the event is related factually and without editorializing. “There’s definitely a balance,’’ she said. “We want people to know we are working to improve. But you want them to come here and feel safe and not come in the door and worry.’’ Their goal is to tell of the problems they encounter in a more memorable way than a simple statistical report, so that the staff retain a greater understanding of the importance of the changes being introduced as a result. (Kowalczyk, 2013).
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ImagePhysicians take an oath, to do no harm. At it core is the belief that every patient has a right to complete autonomy, and that it is unethical for a physician to withhold information from a patient concerning any aspects of their condition or the potential positive or negative outcomes of a recommended treatment. This is in direct opposition to the traditional paternalistic views held by physicians in the past. Practitioners of medicine long considered themselves as the the givers of life saving treatment and patients as the recipients. This has its origins in the core of values defined by Hippocrates that relied on the fact that physicians had more information in the form of advanced knowledge about medicine than patients. This perspective gave them the right to make the decisions on the behalf of their less knowledgeable patients. His original precepts of medicine, which included ‘do no harm’, established the strongly paternalistic view that a patient had no need to know their current diagnosis. It was a cultural belief, not far removed from religion. Hippocrates lived in the 5th century BC, and his version of the physicians oath guided medicine (with many modifications designed to keep it in contemporary terms) until this century, when a sense of ethics began to change medicine and challenge the paternalistic physician view. (Garrett, 2010)
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In 1964, Louis Lasagna (while serving as the Academic Dean of the School of Medicine at Tufts University) wrote a new oath for doctors that is used in many medical schools today. Lasgana’s oath, in part, states “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug. I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death.  If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.  I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” (Tyson, 2001)
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Prevention is preferable to cure.  As medicine has become more and more complex, the quality of the health care services we receive as patients continues to increase. Yet with that increased complexity inevitably comes errors. The standard that we, as consumers of a very profitable segment of our economy, must insist on is a standard of excellence based on transparency. Errors must be examined to prevent them from recurring. To the 90% of hospitals still operating under the concept of profitability above all else, I challenge you… adapt to the new standards. Embrace changes being mandated regarding errors. Do not delay, do not hesitate, for your patients require it now. Our lives are the ones impacted by errors you choose to ignore and repeat.
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The Oath above contains strong words that I believe sum up the ethical principles of most doctors, and they bear repeating. “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” It is not just the oath a doctor swears to uphold, it is the ethical principle we insist that every HCO must uphold. We want them all to be like The Brigham, and embrace the changes that are coming. We are fine with them making a profit, they deserve to do so in exchange for the services they provide and the financial risks they take in doing so. At the same time, we are becoming more educated about the choices they make in pursuing that profit, and we can not and do not have to tolerate profit from errors.
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Do no harm, or at least make no profit from it when you do.
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Sources:
Adlja, Amesh. 2012. “Why are profits in the healthcare sector so demonized?” Forbes OP/ED, November 01, 2012
Davis, Paula. 2013. “Learn about obscene profits of health care industry.” Standard Examiner. March 06, 2013.
Garrett, B. (2010). Health Care Ethics Principles and Problems.  5th  Ed. Boston, MA: Prentice Hall.
Kowalczyk, Liz. 2013. “Brigham and Women’s airing medical mistakes:Hospital reports errors to staff in drive for improvement”. The Boston Globe. April 09, 2013.
Porter, Eduardo. 2013. “Health Care and Profits, a Poor Mix.” New York Times, January 08, 2013
Shute, Nancy. 2013. “Quality Conundrum: Complications Boost Hospital Profits.” National Public Radio, April 16, 2013.
Tyson, P. 2001. The Hippocratic Oath Today. NOVA, PBS. March 27, 2001.