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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Medicare Part D Policy: The Cost to the Republican Party

Medicare Part D Policy: The Cost to the Republican Party
by Gary M. Votour, MHCA
UPDATED 04/27/2015

As a nation politically divided approaches another presidential election, health care policy will again move to the front burner of public opinion. The Democrats passed the Affordable Care Act (ACA) early in President Obama’s term, and there will be the inevitable Republican presidential candidate promising to repeal it if elected this fall. I’ll be writing more on the ACA soon, but right now I wanted to share some history from twelve years ago to show how the Republican party has a past record of using health care to win elections.

Medicare Part D was passed in 2003 in a political climate that used it as a tool to ensure the re-election of a President facing a huge deficit. It is representative of the power of lobbying forces to dictate and control public health care policy. Most importantly, it is a cautionary tale on the result of allowing the abuse of political power.

Introduction

Medicare began covering the cost of some of the precription drugs that are taken at home on January 1, 2006. Known as the Medicare Part D Benefit (Part D), this benefit is administered through private insurance companies that offer Medicare approved prescription plans (PDPs) and through Medicare Advantage managed care plans that include a Part D drug benefit (MA-PDs). Part D replaced the coverage formerly provided by Medigap plans, Medicare drug discount cards and many managed care plans. (Matthews, 2006)

For many benefit recipients, Part D reduces their out of pocket expenses for prescription drugs. Patients with very high annual expenses for prescription medication generally realize a significant reduction. For patients with low incomes, however, Part D actually costs them more than they paid prior to its adoption when they were covered by state Medicaid programs. Also, because the legislation that established Part D prohibits Medicare from negotiating lower prices with drug manufacturers, the increases in costs of prescription medications are often passed on to the benefit recipients. (Matthews, 2006)

Much of this situation is due to the nature of how the Part D legislation came into being, and how this happened is a fascinating look at public health policy and how it is influenced by political agendas and profit motives from lobbying forces.

I’m going to focus on two key aspects, the first being the actual passage of Part D in the House by the Republicans in 2003. Second to this, and likely more important in terms of policy impacts is the fact that it profited the pharmaceutical industry more than anyone else by preventing Medicare from using their buying power to negotiate lower prices. I think these two examples show how public policy is often misused for both political and financial gain.

Congress in 2003

Part D has been called many things since its passage, but I believe the most accurate description is that of Comptroller General David Walker, who called it “the most fiscally irresponsible piece of legislation since the 1960s.” In 2003, the Bush administration was projecting the largest deficit in American history. The July 2003 mid-session Congressional budget review projected the fiscal year 2004 deficit would be $475 billion. With an election looming the next year, Bush and the Republican Party decided to gain the votes of America’s seniors by giving them a new program that appeared to be designed to pay for their prescription drugs. (Bartlett, 2009)

This occurred at a time when every fiscal projection pointed to a looming deficit ahead for Medicare. The 2003 Medicare trustees report projected spending was going to rise more rapidly than the payroll tax as baby boomers began to retire. Republican leaders had access to the actual costs of Part D and suppressed them before it was passed, and exerted undue influence on fellow Republicans to get the legislation enacted. The estimated cost stated to Congress was that Part D in its first ten years would incur was $395 billion.

The Bush administration knew this was not accurate. Medicare’s chief actuary, Richard Foster, had previously concluded the cost would be in excess of $535 billion. A Republican appointee at the Department of Health and Human Services, Thomas Scully, actually threatened to fire him if he made his report public before the 2003 vote. (Singer, 2007)

This was because a congressional budget resolution had already placed a cap on the projected cost at $400 billion. If the official estimate from Medicare had been made public, then it would only have taken a single member of the House or Senate to kill it by raising a point of order. (Bartlett, 2009)

There was also an unprecedented move to apply pressure on members of congress to get the law passed. Despite the fact that the Republicans held the majority in the House of Representatives, when the legislation came up for a final vote it was failing by 216 to 218. Then, even though the fifteen minutes allowed for voting came to an end, the vote was kept open for three more hours while pressure was put on republicans to change their votes.

What happened during those three hours was unseen by America, as the C-SPAN cameras were frozen by the republican leadership. House Majority Leader Tom DeLay was later ‘admonished’ by the House Ethics Committee, specifically for attempting to bribe fellow Republican Nick Smith to change his vote by promising he would ensure his son got his house seat when he retired if he voted in favor of the bill. These strong arm tactics eventually got enough Republicans to change sides, and the final vote was 220 to 215 in favor of Medicare Part D. (Bartlett, 2009)

Pharmaceutical Lobbying

In addition to a massive political gain to the Republican Party in the next election, the passage of Part D yielded tremendous financial rewards to several of its key proponents.

Thomas Scully, the man who threatened to fire Richard Foster if he disclosed the projected costs of Part D prior to the vote, was actively pursuing a job as a lobbyist at the time. In fact, when Bush appointed him to his position to run Medicare, he was a hospital industry lobbyist. Scully had already received a special ethics waiver allowing him to negotiate for future jobs with lobbying firms while he was in public office.

He left Medicare ten days after Part D was signed by Bush, and became a lobbyist again, working for pharmaceutical companies. Many of the key figures involved in passing Part D left for positions working with lobbying firms after it was passed, all with substantially higher salaries than they had before. Representative Bill Tauzin, one of the bill’s leading supporters, also left Congress shortly after the bill was passed to become president of the Pharmaceutical Research and Manufacturers of America. (Krugman, 2006)

In retrospect, it seems obvious that the political agendas of many of these key figures were influenced by their goal of pleasing their future employers. The result of these hidden agendas left behind a political mess that has cost the country billions of dollars and created a system that was flawed in several critical ways. (Krugman, 2006)

The Problem with Medicare D

The most lasting effect of Part D’s passage was to fragment the potential purchasing power of Medicare into dozens of smaller entities.

Because none of them have the power to negotiate with pharmaceutical companies to the degree that Medicare would have had, this has given the pharmaceutical industry near complete control of pricing. This is one of the main reasons why the price of prescription drugs in this country is among the highest in the world. (Bartelett, 2009)

Democrats attempted to continue to modify Part D after its passage by amendment, but they did not have the political power to do so. Attempts to extend deadlines for enrollment where met with adamant refusal by the Bush administration, most likely because deals had been made and political favors needed to be paid for. No consideration was given to the actual needs of the beneficiaries. To do so would have given Medicare the ability to control costs by negotiating prices. (Zwillich, 2006)

The ACA Solves Some Part D Problems

It was not until the passage of the Affordable Care Act (ACA) in 2010 that some these issues were finally addressed. A 55% discount was negotiated for Medicare Part D recipients with the pharmaceutical providers that includes most medications.  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. (The ACA and Medicare, 2015). 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 anually in purchasing medications. (Extra Help, 2015)

Conclusion

The passage and implementation of Part D was clearly a part of a larger political agenda. The one stakeholder group that most needed this law, Medicare beneficiaries, actually gained the least from it. The law ended up being written by lobbyists and entrenched the industry’s control over drug prices in the United States. It became a partisan issue, and helped assure the re-election of a president. These were the stakeholders who influenced Part D the most.

Part D was marked by an unprecedented use of lobbying power in congress coupled with a political agenda. Direct control of information by the Bush administration and strong arm tactics on the House floor accounted for a final vote that barely passed. Political payoffs in the form of future employment for those who advocated for Part D’s passage helped guarantee control over drug pricing for the drug industry.

I find that it is ironic that many Republicans who now vehemently opposed the ACA on the grounds that it will add to the national deficit are ones who voted for Part D. While Part D has already incurred a cost of $1 trillion dollars, the ACA only has an estimated cost of $900 billion.

It is also worth noting that Part D simply added to the deficit. It had no dedicated financing, no offsets to cost and no attempt to raise revenues to pay for it. The current health care law is likely to be paid for with a combination of spending cuts and tax increases, and is not likely to add to the national deficit. According to Medicare’s trustees the unfunded drug benefit added $15 trillion (in present value terms) to our national deficit.

In closing his article in Forbes, Bartlett (2009) clearly states the impact the passage of Part D had and continues to have on the credibility of Republican members of Congress: “The national debt belongs to both parties. But at least the Democrats don’t go on Fox News day after day proclaiming how fiscally conservative they are, and organize tea parties to rant about deficits, without ever putting forward any plan for reducing them. Nor do they pretend that they have no responsibility whatsoever for projected deficits, at least half of which can be traced directly to Republican policies, according to Office of Management and Budget Director Peter Orszag. It astonishes me that a party enacting anything like the drug benefit would have the chutzpah to view itself as fiscally responsible in any sense of the term. As far as I am concerned, any Republican who voted for the Medicare drug benefit has no right to criticize anything the Democrats have done in terms of adding to the national debt.” (Bartlett, 2009)

That opinion summarizes my own. It expresses the long term cost to the Republican Party of winning one election… a cost I doubt they planned for, because it was concealed from the party as a whole by members who had much to gain personally by doing so. In the political arena of public policy it is all about paying the price for what you gain, and often that cost is hidden and has very long term consequences.

References

Bartlett, Bruce. (2009). Republican deficit hypocrisy. Forbes.com. 11.20.09.  http://www.forbes.com/2009/11/19/republican-budget-hypocrisy-health-care-opinions-columnists-bruce-bartlett.html

Extra Help With Medicare Prescription Drug Plan Costs, Social Security Administration, (2015). http://www.ssa.gov/medicare/prescriptionhelp/

Krugman, Paul. (2006). The K street prescription. New York Times. January 20, 2006. http://select.nytimes.com/gst/abstract.html?res=F40A17FD395B0C738EDDA80894DE404482&showabstract=1

Matthews, Joseph. (2006). Medicare: Part D. Social Security, Medicare & Government Pensions. pp. 11/37-11/40. Berkeley, CA: Nolo Books.

Singer, Michelle. (2007). Under the influence. 60 Minutes, CBS News. April 1, 2007. http://www.cbsnews.com/stories/2007/03/29/60minutes/main2625305.shtml

The ACA and Medicare, The Official US Government Site for Medicare, (2015). http://www.medicare.gov/about-us/affordable-care-act/affordable-care-act.html

Zwillich, Todd. (2006). Medicare Part D deadline debate heats up. The National Ledger. Apr 21, 2006. http://www.nationalledger.com/cgi-bin/artman/exec/view.cgi?archive=1#=5164

Where is the Health Care Poverty Gap?

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

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* 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

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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

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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

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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)

 

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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Image
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.