Our Constitutional Right To Health

This speech was given by Gary M. Votour at the Healthcare For All rally held by Our Revolution South Carolina on April 15, 2017

constitutional“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. — That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, — That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.”

This is the second paragraph of the Declaration of Independence. Written in 1776, the Declaration stated the fundamental truths that our country was founded upon. It included specific concepts that everyone has a right to have: life, liberty, and the pursuit of happiness.

Without a doubt, our founding fathers also felt that health was something everyone had a right to. Even if the actual word itself was absent, the inclusion of life as a human right clearly implies the need for health.

Thomas Jefferson even wrote about it in 1787: “health, without which there is no happiness.” The Constitution of our country specifies that we “promote the general welfare” of our citizens in its very first sentence.

Health care and health care insurance was not specifically mentioned for a good reason… Neither existed yet. 250 years ago, humans had not yet discovered germs, and illness and disease were treated by barbers using leeches and bloodletting. It would be another 100 years until antiseptic surgery and hospitals would begin the transition to health care we know today.

Yet these are the words that have helped shape the greatest nation on the planet Earth, and the United States of America has stood for these things since its founding. Despite epidemics of disease, wars both abroad and at home, terrorist attacks from within and without, economic depressions and recessions this country has held several fundamental beliefs. These include that all people are equal and that everyone has the right to live, to be free, to pursue happiness… and to be healthy.

Most importantly, we believe we all must work together for the common good and welfare of ourselves and future generations. Our government exists for the sole purpose of helping us realize these goals. We also believe that if our government works in ways contrary to the authority we have given it, we have the right to alter it.

These goals, including health, have evolved in step with our society’s growth. As our country grew, these words, written by our founding fathers, have been reinterpreted often. We have always focused on the conceptual meaning of the Declaration and the Constitution. A perfect example of this is the right to own firearms, which when written would have pertained to muskets. Now we recognize that as weapons evolved, so to have the rights of individuals to own them.

Unfortunately, the extreme partisanship of the last decade being exhibited amongst our elected leaders has led our government astray from many of these goals, in particular the right of everyone to have access to healthier lives.

Let’s start by looking at how we, as a country, compare to other countries around the globe. The Gross Domestic Product, or GDP, is the total amount of goods and services produced by a country withing a specific time period, usually a year. It is a way to measure how the money being spent by the people living in that country goes to different types of things.

As a large country with ample resources and production capability, the U.S. ranks first in GDP globally. The percentage of our GDP we spend on health care also tops the worldwide list. Looking at the % of GDP spent on health care for the top countries, we top the list at 17%.

In fact, if you look at the average amount the rest of the world spends on health care per person, the U.S. spends twice as much at nearly nine thousand dollars per person.

A FINAL how the US compares 01

With all of that money being spent, wouldn’t you think we’d have the best health care in the world? We don’t.

When compared to the other developed nations spending high percentages of their GDP on health care, we rank poorly.

A FINAL how the US compares 02Our infant mortality rate is nearly twice that of the leading country, France. Our obesity rate is more than four times greater than the first ranked, Switzerland. Our lives are shorter as well. In the U.S. the life expectancy at birth is less than 77 years, as compared to France and Canada at over 80 years.

When you combine these and other factors globally, we do even worse.

When compared globally the U.S. is consistently near the bottom of the list for chronic lung disease, drug-related deaths, general disability, heart disease, low birth weight, obesity and diabetes.

A FINAL how the US compares 03

How can this be happening in the country that spends more than any other nation on health care? The answer is simple… it’s not about how much we spend, but who we spend it on. These scores are all based on averages within each country. Averages take into account everyone, and not everyone in the U.S. has equal access to health care.

The high-ranking countries like England, Canada, France, and Germany all have health care systems which provide health insurance that provides access to healthcare for 100% of their population.

A decade ago, the U.S. percentage of people with health insurance was only 86%. Despite the major advances we have made in ensuring everyone in this country has access to healthcare, we fall short when it comes to our poor.

Now, thanks to the Affordable Care Act of 2010 (The ACA or more commonly called Obamacare) in 2016 the number of uninsured in this country dropped to a historic low of 9%.

A FINAL the successes of the ACA

The ACA included a mandate that required everyone to have health insurance and included generous subsidies for many who could not. The ACA was designed to include a complementary mandate that all 50 states would expand their Medicaid programs to include the poor.

Medicaid is a U.S. policy program that provides health care insurance to our nation’s poor, elderly and disabled. Administered by States and paid for by a mix of federal and state funds, it was established in 1965 as a part of the Social Security Act, which also created Medicare.

Medicare is a federal program of health insurance that covers the elderly and disabled, regardless of income. This is different than Medicaid, which provides a different level of health insurance to the elderly, disabled and poor.

Because of partisan political opposition to the ACA, 19 states have refused to expand their Medicaid programs, despite the fact that for the last several years the federal government is paying for 100% of the cost. This has prevented the ACA from being as effective as it could have been if they had all expanded.

Almost all of these states refusing to expand Medicaid are on the top ten list for percentage of uninsured nationwide. In descending order, the ten states that have the highest uninsured rates are Texas at 17%, Georgia, Oklahoma, Florida, Louisiana, South Carolina at 13%, Mississippi, North Carolina, Utah, and Alabama at 11%. Of these, only one (Louisiana) has expanded their Medicaid program to include their poor under the ACA.

A FINAL how the US compares 04

When it comes to health care, we rank poorly as a nation because we don’t let everyone who lives here have equal access to it. We are ignoring the fundamental rights our country was founded upon: life, liberty, happiness and health.

That right is being denied to millions of U.S. citizens based on the geography of where they live. Let’s take a quick look at one example of the geographical inequality in health care that has resulted from this ongoing political battle.

The twin cities of Fulton, Kentucky and South Fulton, Tennessee lie on the border between their states, neatly bisected by the state line which runs through it horizontally.

Around 1900, Fulton, KY was known as “The Banana Capital of the World”, because the rail lines moving bananas north from New Orleans all stopped there to get fresh ice for their cargo. South Fulton, TN, whose town motto is “Becoming Better Together”, co-hosts the “Twin City Banana Festival” each year with its sister city, and a 2,000-pound banana pudding is the star of the annual event.

Despite a colorful history, the economy of the area is depressed. The largest employer in the area is now the Walmart distribution center north of Fulton.

These two adjacent cities have nearly identical demographics. Both cities have about 2400 residents, and about 1 in 5 families live in poverty.

Kentucky expanded Medicaid under the ACA in 2014, and about 700 non-elderly adults in Fulton became eligible for Medicaid. Tennessee has not expanded Medicaid, and nothing changed for those living in South Fulton.

The people in these cities are not being treated equally. The people in both cities pay taxes. They both work hard to make a living and struggle with poverty. Yet on the Kentucky side of the state line the poor get access to primary care, diagnostics and treatments for often fatal illnesses and preventative care that can help keep them healthier and live longer, more productive lives.

A hundred feet away, on the southern side of that same line in Tennessee, the same person would get none of those benefits. They will live shorter lives, be more likely to forgo preventative care because they can’t afford it, and more likely to go bankrupt paying medical bills if they fall ill than their neighbors to the north.

A FINAL A City Divided

This is not the equality our forefathers intended. How did we get to this? To understand, We need to look back in history for a moment.

In 1963, the United States grieved as a nation, shocked by the assassination of President John F. Kennedy. Vice-President Lyndon B. Johnson became President, and the following year he was elected in a landslide vote against his Republican opponent, Arizona Senator Barry Goldwater. As president, President Johnson pursued a liberal agenda he called “The Great Society” that attempted to address many social issues: civil rights, voting rights, poverty, arts, education issues, and most importantly for us… health care insurance.

President Johnson’s first speech to Congress began the push to create a different federal approach to health care insurance. He opened that speech with the same quote by Thomas Jefferson that I started this out with, “Without health, there is no happiness. An attention to health, then, should take the place of every other object.”

In closing his address with the following words, he set the stage for the first of several significant federal legislative initiatives to address the need for health care and insurance in the United States.

“Whatever we aspire to do together, our success in those enterprises–and our enjoyment of the fruits that result–will rest finally upon the health of our people. We cannot and we will not overcome all the barriers–or surmount all the obstacles–in one effort, no matter how intensive. But in all the sectors I have mentioned we are already behind our capability and our potential. Further delay will only compound our problems and deny our people the health and happiness that could be theirs.”

Under President Johnson’s strong leadership, Congress began to push forward with the creation of Medicare, which created a national health insurance plan for everyone over the age of 65.

In 1965, they created two tiers of insurance. Medicare Part A, funded by employer and employee payroll taxes, provides hospital and some nursing home care for adults covered by the Social Security Act. Medicare Part B is a premium supported plan that is funded by general revenues and beneficiary co-payments, pays for physician visits and some services.

Congress worked with the opposition to gain their support. The plan left many service areas that insurers could still work within. Doctors would not be required to participate. Hospitals would receive direct payments for care.

The third tier of the plan was Medicaid, and it was defined as “welfare medicine” from the start. It was not “social insurance” like Medicare, and it connoted dependence on the goodwill of government to those in need. It paled in comparison to Medicare, but it was a beginning.

States were not required to offer Medicaid programs, but if they did they had to meet federal guidelines for some basic requirements. To satisfy state concerns about control, they were given great latitude over how these requirements would be met.

Eventually, the scope of services Medicaid provided would expand, as did the number of states deciding to join the program. By 1970, 48 states had committed to some form of acceptable Medicaid program.

medicare vs medicaid

Let’s skip ahead through 45 years of changes and additions, made by both parties that improved both Medicare and Medicaid. Medicaid was expanded to include pregnant women and children living in poverty. Medicare grew as enrollment increased as an entire generation began to live longer past retirement. Both programs became more expensive for the Federal and State governments that paid for them, using the taxes we pay. An entire branch of the Federal government was created to develop and administer both programs with efficiency. At the same time a for-profit industry grew to provide the same benefits to the rest of us, usually provided as a benefit by employers who competed to get the best employees by offering not just the highest pay but also the best insurance.

Then President Obama was elected and became president in 2008. Realizing there was a unique opportunity to make progress in the governmental role of improving the health of all Americans, he worked with Congress to create the Affordable Care Act, the ACA, also known as Obamacare.

This all fact. I know it is a bit boring, but in order to move forward, we need to understand where we’ve been, both as a nation and as individuals. I deliberately did not introduce myself yet, because I did not want my story to distract you from the far more important story of how health insurance, Medicare, and Medicaid came to be.

Now seems like a good point to remedy that shortcoming in my speech to you today.

I’m Gary Votour. I have lived here 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 to 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.

It may seem to be an unusual calling to some of you, but I believe sometimes the Lord shapes our lives according to his plan for us and we are then called to follow His plan. He certainly has for me.

Over a decade ago, 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.

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. I held her hand as she took her last breath after nearly 30 years together.

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, called 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 ACA was modeled after 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 nearly 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, 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, likely tens of thousands, have already died as a result in those states that did not expand Medicaid to cover their working poor.

Just a few weeks ago the Republican Party attempted to honor the current president’s campaign promise to repeal and replace the ACA with something they called the American Health Care Act (AHCA). I just call it NoCare, because that’s all it would have given anyone.

Put together in secret, literally written in the Congressional basement over a couple of weeks, the AHCA tried to tie together both the moderate and extremely conservative elements of the GOP in order to get the votes needed to move it forward without the support of a minority liberal congress.

NoCare included changes to the law that would allow insurers to charge extra for those who may have preexisting conditions. 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.

Also, Medicaid is a vital program designed to protect all of us in times of trouble, whether it be financial or medical. We all 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.

Yet the GOP NoCare replacement would have instituted flat funded block grants for Medicaid that would have caused the eventual destruction of the program, as State’s would be forced to ration care to the needy.

They would have, in effect, been creating the mythical Obamacare “death panels” people theorized about years ago, but they would have been at the state level as they are forced to do less and less for the poor into the future.

When the initial draft of NoCare failed to garner enough support from the extremely conservative Freedom Caucus, they even proposed stripping out the essential health benefits required for all insurance by the ACA, even for insurance provided by employers. This would have left most of our country under the control of for-profit insurers, who would certainly have worked together to plunder those benefits away from everyone.

We must stay vigilant and pressure our elected representative to end the forward progress of the NoCare plan, no matter what form it comes back in.

We must force it to be tabled, not amended. When they renew their efforts to pass it again, and they will, we must demand 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.

We must ensure that Medicaid programs in all 50 states are strengthened, not diminished. We must continue to create incentives for the remaining states to expand coverage, not reward them for allowing their citizens to die needlessly.

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.

We can, indeed we must, do better.

A national health care plan is an option that is progressive and builds on our success as a country that believes in equality. Whether it be a Medicare for All shift away from private insurers OR a Public Option to let anyone who chooses to buy a Medicare policy OR an income based subsidized replacement for Medicaid… It should be up to us, the American people, to decide how we will interpret that constitutional mandate was written so long ago that has served us so well until now. Life. Liberty. Happiness. And now, health care. These must be our demands!

And if our elected government fails to listen, if they fail to do what we, the voters demand of them… we must then speak even louder at the voting booth.

Thank you!

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

cloud

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.
– –

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.

– –
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.
– –
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.
– –
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.
– –
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.”
– –
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.”
– –
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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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.

Re-Defining Patient Advocacy

Re-Defining Patient Advocacy
By Gary M. Votour, MHCA

FA HATI was recently asked what patient advocacy means to me. An advocate is technically defined as a person who speaks or writes in support or defense of another person, a person who pleads for or on behalf of another or a person acting as an intercessor for another person. The origin of the word gives it additional meaning…in the late 1300s it was a Latin word, advocātus, which was a legal counselor, and the origin of that meaning came from France, advocāre, meant to call to one’s aid.

As a patient advocate, I help patients by answering their call for assistance when hospitalized. I believe having a advocate who understands your directives can improve your outcome when you are hospitalized. I chose this term to describe the service I provide, but it has different uses and meanings. First I’ll discuss the classical definition of a patient advocate, with references to patient rights provided by the American Medical Association (AMA) and the World Health Organization (WHO), and then I will explain how I define the term for the services I provide.

name-badge-advocate

The health care industry generally defines patient advocacy as a service provided by Health Care Organizations (HCOs) that encompasses several areas. It is described as a component of a proactive process designed to help ensure positive outcomes during care episodes. Many organizations employ dedicated staff with this title who not only respond to patient complaints, but also are involved with constant measuring of patient satisfaction through the use of surveys and questionnaires. HCO-employed advocates may conduct patient information efforts designed to educate patients about their illness in order to make them more effective partners in their own care. Not only do these efforts all have a proven positive effect on patient outcomes that affect the individual patient, employing dedicated patient advocates in health care organizations lowers error rates, increases patient satisfaction and can even help employees in the organization to feel better about their jobs. (Abdelhak et al, 2007)

The questions this raises are obvious. While the advocate employed by a HCO is certainly effective at achieving the goals we just listed, those goals are those of the HCO, which at times are inevitably going to be different than the goals of a patient. What happens when the two sets of goals do not align? How does a HCO-employed patient advocate truly advocate for the patient if, at the end of the week, they are getting a paycheck from the HCO?

ama_logoLet us dig deeper into the rights every patient has and see how this works. Foremost among the goals of this concept of patient advocacy is the American Hospital Association’s (AHA) “Patient Bill of Rights”. Often times we will see these framed and on the wall of hospitals with the title “You Have the Right to…” followed by a list of patient rights. The AHA is attempting to make this list more relevant and easier to understand by reframing those rights as the central components of the ‘patient care partnership’.

This approach emphasizes the improvements in health care currently happening that acknowledge the desire of most patients to be more involved in their care decisions. In essence, it is a guarantee of expectations that hospitals provide to patients that encompasses several important aspects of their stay. Here is a brief summary of five of the six aspects. (AHA, 2011).

High Quality Care

This component generally covers a patient’s right to receive the best possible care and to have pain managed with the best possible treatment. It also guarantees a patient the right to know the names of all doctors, nurses and staff involved in their treatment, and that their status as students, residents or trainees will be disclosed.

A Clean and Safe Environment

Hospitals guarantee patients that they will utilize procedures designed to prevent patient errors and maintain a clean environment for them to stay in. They also promise to acknowledge when errors occur and discuss with the patient how this may affect the outcome of their stay.

Protection of Privacy

This is an acknowledgement of a patient’s right to have their medical records treated confidentially. Facilities generally give each patient a Notice of Privacy Practices that defines the measures they use to meet both state and federal laws regarding patient records, and that describes how they use, disclose and safeguard the information from each care episode.

Assistance with Bills and Insurance Claims

Hospital bills and insurance claims are often very complex, and they can be the last thing a personal needs to be dealing with during a care episode. Hospitals provide the patient with explanations about their bills and assistance with filing insurance claims. Most hospitals will even provide assistance to uninsured patients who need to apply for Medicare or Medicaid, when they are eligible, in order to pay the bills.

Preparation for Patients and Families for Discharge

Treatment for serious illnesses continues after the patient leaves the hospital. Many times that means there is a need for follow-up care with other doctors or a recuperative period at home or at another facility. The hospital has a responsibility to assist in the planning of these services. They also have a responsibility to disclose if they have a financial interest in the recommendations they are making. (AHA, 2011)

All of these are important functions that are handled in HCOs by their own patient advocates. In many cases, these components are dealt with by social workers and other staff acting as advocates. In very large hospitals, entire departments deal with some of these issues.

Involvement in Patient Care

The sixth item is the one I think is the most important aspect of patient advocacy. The AHA breaks this down into several components that provide a good starting place for this discussion. This is essentially a discussion of the growing importance of allowing patients to become more active participants in the treatment decisions that affect them. The two most important aspects of this component are informed consent and patient information.

Informed consent, the first component, is what happens when the patient and their doctor make the decision to pursue treatment in a hospital for an illness. For this to be a fully informed decision, it must include discussions about treatment options that include both the benefits and risks associated with them. The patient must know what to expect from the treatment, both in terms of short term gains and in long term impacts it may have on them for the rest of their lives. They must also understand what they will need to after discharge to most effectively maximize the likelihood of a successful outcome. (AHA, 2011)

I’ll be writing more about informed consent in my next blog entry.

Living_willPatient information is another key component, and this revolves around the patient being committed to providing the HCO with all of the information they need effectively and safely treat their illness. Including information about past health issues and treatments as well as current medications and allergies, this information is critical to the design of the patient’s treatment plan. This is where maintaining an up to date personal medical record is important.

All too often the information needed is scattered across several care providers, and it is the patient’s responsibility to collect and maintain this fragmented record in one place. This record should also include a statement of what the patient’s health care goals and spiritual beliefs are that can impact a HCOs development of a treatment plan that accommodates those concerns. This record also needs to include information about who should be allowed to make decisions for the patient if they cannot do so themselves. (AHA, 2011)

WHOLogoThese key elements are even addressed by the World Health Organization (WHO) as basic human rights of all people. They have set forth four components that are essential to ensuring equal health care rights worldwide, providing a much larger framework on a global context. They define these components as:

Availability: Functioning public health and health-care facilities, goods and services, as well as programmes, have to be available in sufficient quantity.

Accessibility: Health facilities, goods and services have to be accessible to everyone without discrimination, within the jurisdiction of the State party.

Acceptability: All health facilities, goods and services must be respectful of medical ethics and culturally appropriate, sensitive to gender and life-cycle requirements, as well as being designed to respect confidentiality and improve the health status of those concerned.

Quality: Health facilities, goods and services must be scientifically and medically appropriate and of good quality. (WHO, 2011)

United Nations Secretary-General Kofi Annon defined this as “A rights based approach to development describes situations not simply in terms of human needs, or of developmental requirements, but in terms of society’s obligations to respond to the inalienable rights of individuals, empowers people to demand justice as a right, not as charity”. (WHO, 2011) The AMA and the WHO have the same goals… providing access to the best possible care while protecting the confidentiality and rights of health care recipients.

We all have inalienable rights as members of our society, and those rights are no different when we are sick. We have the right to receive health care. We have the right to make informed consent. We have the right to make our own choices based on truthful disclosure. We have the right to know about treatment errors and demand they be remedied. Most importantly, we have the right to ask for help from an advocate of our own choice. That advocate does not have to be one employed by the HCO, because by the very nature of who they work for there are always going to be limitations in what they can advocate for on our behalf

card02I offer my services to individuals, not to HCOs. This not only allows me to act as a patient’s advocate (without any possible conflict with an HCO-employer) but also empowers patients and their families to demand better outcomes. I give them a larger voice in the decisions that affect their health care outcomes. From helping them to establish a personal health care record and deciding on who holds their health care proxy to clearly declaring what their wishes are in light of their own spiritual beliefs; from guiding them with facts about treatment choices and possible results to locating facilities and doctors that will give them the best outcomes; from actually sitting by their sides when they are in a HCO or providing an external telepresence via webcam or conference call… my view of a personal health care advocate encompasses all of this.

References

Abdelhak, M. Grostick, S. Hanken, M.A. Jacobs, E. (2007). Health information: Management of a Strategic Resource, third edition. Missouri: Saunders, Elsevier Inc.

American Hospital Association. (2011). The Patient Care Partnership. Retrieved from http://www.aha.org/aha/issues/Communicating-With-Patients/pt-care-partnership.html

World Health Organization. (2011). 25 Questions and Answers about Health and Human Rights. Retrieved from http://whqlibdoc.who.int/hq/2002/9241545690.pdf

Suicide and Hell

Suicide and Hell
by Gary M. Votour, MHCA

In about two months it will be four years since my wife ended her own life. I still grapple with one very large question… does the act of ending one’s own life condemn us to an eternity of suffering? I believe the answer depends on what you hold as your own spiritual beliefs.

In the Roman Catholic Church, with its strict and literal interpretations of the Bible, the answer would be yes. They believe that suicide is a mortal sin, and that to die with unforgiven mortal sins condemns one to hell instead of heaven. They also hold as truth that Christ conferred the power to forgive sins only upon the apostles and their successors. Anglican and Eastern Orthodox Catholic churches generally agree with this position.

Since this view holds that only the Church itself can forgive sins, a person must do all that they can to ensure one enters eternity with the Church’s forgiveness for all their sins. This is why they administer “last rites” to those who are dying. Since the act of suicide would presumably take place after any possible administration of “last rites”, eternity is entered with unforgiven sins.

The Protestant Christian view of sins and how they are forgiven resembles the actual scriptures more than that of the Catholic position. Protestant denomination believe that the actual scriptures hold greater authority than that of any church. They direct one to Christ as the only true redeemer of mankind and his sins. The Evangelical Christian view holds that all sins are forgiven the moment one accepts Christ as savior. This includes all sins, past, present and future.

This view is mine. I look in the Bible and I find these words that support it:

“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” – John 3:16

“For whosoever shall call upon the name of the Lord shall be saved.” – Romans 10:13

“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” – Ephesians 2:8-9

So we can see that one’s own beliefs and interpretation of the Bible must be what shapes the answer to this question. Let us return to the core question… does the Bible itself hold that suicide is justifiable at times?

I believe that the answer is yes, it does.

One specific instance is when the suicide is an act of redemption. Samson, a wayward Israelite judge, had allowed himself to be compromised and imprisoned by Israel’s enemies. His prayer and subsequent suicide appear to be pleasing to God because he was acting to atone for his transgressions. Another specific instance would be a soldier in combat who throws himself in the line of fire to save his comrades in arms. So atonement and selflessness would seem to be justifiable reasons to end one’s life.

Those instances do not apply to one who chooses a subtler form of suicide to end their own suffering, but since there are clear exceptions to the rule, there is room to explore further to find the answer. After all, where there is one exception there must be others.

What about the terminally ill, who have no hope of living and can not expect a high quality of life for what life remains? We accept that foregoing treatment and choosing hospice care is not a sin. It is simply a choice to let an illness run it’s course. See my previous post about the existence of hope in hospice care for more about that at https://fierceadvocacy.wordpress.com/2012/02/22/is-there-hope-in-hospice-care/

Going a step further, what about a person who is stable medically but in constantly increasing amounts of pain? Is it a suicide to stop eating and drinking and let starvation end one’s own life? If it is, does that constitute a sin that will condemn one to hell?

I’ve read a lot on this issue,
and there are no clear answers.

I only know what I know in my heart,
and that is where the answer, for me, must be.

My wife, Lyn, suffered greatly following a surgical stroke that left her mostly paralyzed. The surgery was to delay a congenital form of bone cancer that would have been fatal within a few years. The stroke destroyed parts of her brain that controlled motor control, pain perception and emotional control. After six months by her side in three hospitals, we had returned to our home, which was now an Intensive Care Unit. With 100 hours of staff coming and going weekly, I managed her home care for over two years. In that time she made great strides in recovery… she regained her voice and could eat some solid foods again. She would never walk. She would never smile. Worst of all, the pain she felt continued to increase to the point where to control it, she was practically sedated most of the time.

She fought for 27 months to recover as much as she could, despite the pain.  Awake and alert for only a few hours each day, she eventually decided to stop eating and drinking. She made us stop the tube feed. She said her goodbyes. After two weeks, she took her last breath with friends and myself at her side.

I have at long last concluded that she went to heaven, and no one can tell me otherwise. She had time to make her decision. She had the ability to decide for herself. Her death was not an act of redemption. It was not an act of selfless valor. It was simply what came next. Once no more progress in recovery could be made, she decided what was left of her life was not worth the pain and suffering that each waking moment caused her. So she simply stopped living. Although her technical suicide was a sin, it was forgiven before it was ever committed.

Christ loves us that much.
That is my belief, as it was hers.

If God Had Facebook.

If God Had Facebook

by Gary M. Votour

For years I have qualified my faith in God… and I am willing to consider I have been wrong. In order to realize why this has something to do ethics and health care, consider this. What is ethics? Ethics, also known as moral philosophy, is a branch of philosophy that involves systematizing, defending, and recommending concepts of right and wrong behavior. Where do those recommendations come from? The answer is far more than a technical definition can provide. Since I write about ethics in health care, I need to know where mine come from. To see both sides of an issue and propose an ethically correct perspective requires me to be mindful of my own beliefs about what is ethical. More importantly, to have my opinions be meaningful to you I must ensure you know where they come from.

I was raised Catholic, but pretty much walked away from that church once I became an adult. I retained an ethical and moral code, telling myself that it was simply because I felt it was right. Most of that code came from my parents, who taught me what was wrong and what was right. For them, there were very few gray zones of uncertainty, but they lived in a different time than we do now. Even though I no longer considered myself Catholic, there were plenty of times when I prayed to God for help, and I felt that sometimes he answered those prayers. One example is when my companion dog Isis got sick.  I asked God for a few months more with her. I bargained, I promised Him I wouldn’t let her suffer. Months later when she showed the first signs of discomfort from the cancer I took her to my vet and put her to sleep by my own hand.

In 2006 my life was changed forever. Sitting by my wife’s side in an ICU for weeks, then months…  I prayed.  I prayed for her to recover. She didn’t recover, but she survived. I prayed for her to not have lost all that made her the person I loved. She lost a lot, but she felt she was the same person.  Later at home, I sat by her side and prayed some more for almost three years. I prayed for her not to suffer. She was in pain all the time for three years, until she ended her life. With that her suffering ended.  Was I to be thankful that she survived, that she felt she was the same person, or that she found the strength to let go of her life? I was not.

After she died, I was angry with everyone, including God. Especially God. I’d lash out at anyone who said “She’s in a better place now” or “God needed another angel so he called her to him”. Fueled by rage and grief I would respond “How dare you presume to think she was someplace that was better than by my side?” and “Does not GOD have enough angels already? He has so many he has been known to cast them out!”

I was furious with God. Had he not heard my prayers? Why had he let her suffer to the point where she felt she had to die? Why had he not helped her, given her comfort, healed her? Where was the miracle that restored her brain so she could move again? Why had he let so many of our friends turn their backs on us because they could not face her suffering?

In my grief I was angriest at myself. Grief almost killed me.  I had put my grief on hold for three years to take care of her. I delayed grieving for the loss of my partner, the loss of intimacy, the loss of unconditional support and love I had received from her for 25 years. I had waited for her to die, I felt she would die when the cancer returned or a complication set in that we could not handle in home ICU.

I had delayed grief overlapping with anticipatory grief and I didn’t dare let take hold because I felt she would see it. I didn’t even let her see me cry for most of that time, until near the end. Then I had grief from guilt because I could not help her find enough meaning in what was left of her life to want to go on living. Yet I was still here… survivor’s guilt. So, for many months after she died I drank myself into a near coma every waking moment.  It dulled the pain.

Then I forgave myself. I stopped drinking and started studying to become a health care advocate. I enrolled in school and started working on a Master’s degree. I let myself make friends again, and reached out to many I had turned away from while grieving.  I forgave those I had condemned in my mind for not being there for us when Lyn was dying.

I found that I could forgive myself because as my pain subsided I realized I had done all that I could to ease her pain. I had dedicated almost three years of my life to caring for her, three long years of tube feeds, catheter changes and bed baths. I had acted selflessly, out of love for Lyn, even when she decided to stop eating and drinking. I told her it was ok, that I understood why she had to go, and helped make it as easy for her as I could. Once I understood and believed that, I could release some of the grief and find forgiveness for myself.

I found I could even forgive the ones who weren’t there for us during our time of need.  I realized everyone holds themselves accountable for those kinds of things and they carried their own guilt for that, just as I was carrying mine. I had learned that personal guilt is far heavier a burden to carry than anger from another, and by forgiving them I could lighten their loads… so I did. Yet no one could lighten my load except myself.

Now all that’s left is to forgive God, and that’s the tough one. For me, my anger at Him comes from my own disappointment.  I never really expected a miraculous cure, that one day we’d wake up and find a third of her brain had regenerated itself and she could walk by my side again.  It would have been nice, but reality is reality. I just did not expect His silence.

Now I have repurposed my life to become an advocate for those facing what Lyn faced.  I find I can write about the ethical issues that confront those in health care, one of the largest industries in this country where literally billions of dollars are made every day because human beings have weaknesses and frailties. Ethics is how we all decide what is right and what is wrong. In health care, ethical issues confront all of us every day. They surround life and death issues ranging from contraception and abortion to euthanasia and medically assisted suicide.  Our society tries to codify the correct choices into laws that affect quality of life as well, ranging from medical liability, access to care and cost controls.

As I write this, the US Supreme Court is trying to decide whether Congress exceeded their authority when it passed the Affordable Care Act a couple of years ago, and their decision will have far reaching impacts on the health of many people in this country. So clearly ethics are the cornerstone of our health care system. Most hospitals even have internal ethics committees made up of their wisest care providers who attempt to make decisions regarding the ethical issues that arise in their patient’s care.

Yet how do we know what is right and what is wrong?

Where do we find the moral imperative that helps us decide? For many people, it is their religious and spiritual beliefs, which come from a deep seated belief in God, and that’s where His silence comes into play. We cannot simply ask him for answers. After all, it’s not like God has a Facebook page where we can just send him a message. Yet imagine for a moment if he did.

I can see it in my mind, a page on Facebook where everyone sees what they believe is God.  The picture each person sees is the one they imagine in their minds eye when they think about God. Some see an old white man surrounded by clouds ready to strike down evil with lightning bolts, some see a bearded young male who died on a cross to save us all from original sin, some see an earth spirit that created the universe and those who live in it, and some just see that blank outline face every Facebook account starts with.  He doesn’t ‘post’ anything, for that would end his mysterious appeal. So no hymns from YouTube appear on God’s wall. He has no ‘likes’, because that would make him judgmental. He doesn’t ‘check in’ when he goes out to eat, for he is everywhere at the same time.  He lets us all comment on his wall, but he never responds. And he has no privacy settings, so anyone who wants to see his timeline can see everything there. And he does not have a farm in Farmville. He is a bit too busy for games that ‘simulate’ life. After all, he owns the original version.

 I think that God’s ‘About Me’ page simply says:

I am God.
I made you,
  so worship me if you choose.
I have given you free will,
  so use it to make good choices.
I have given you all a conscience,
  so you know right from wrong.
Listen to it,
  and you shall find Me.

It really is that simple. Our sense of ethics that helps us decide what is right and what is wrong is instilled in our very core.  We were made this way for a reason.  Ethics are about the choices we make… not what we say, but what we do.  Ethical choices are how we define our own perspective of what God is to each one of us and how we choose to show the world what that perspective is.

The Devil may be in the details, but God is in the choices we make.

It is hard sometimes to know what the right choice is, but it is far easier to see which choices are wrong. For me, that’s enough for now. I will still work on forgiveness for His silence, but I am pretty sure that problem lies in my expectations, not in what I have wrongly seen as a broken promise. I forgave myself when I realized I had done all I could. I forgave my absent friends once I understood why they made their choices and I could let go of my anger towards them. If I can never understand why God makes the choices he does, I may not be able to forgive him.

To sum it up, I will walk with Him. I will listen to His words. I will look to his teachings when I need to decide between right and wrong and my moral compass is spinning wildly. But… I am not ready to forgive him.

And I am betting He is okay with that. I am, for now.

“From the end of the earth will I call unto thee, when my heart is overwhelmed:
Lead me to the rock that is higher than I.”  – Psalm 61:2

When One is Sick, Two Need Help.

When One is Sick, Two Need Help
by Gary M. Votour

Introduction

Spousal caregiving is defined as a spouse who provides the majority of care and support for an ill partner for any length of time exceeding a few months. Because this is generally a financially uncompensated (unpaid) role, it is categorized under the term informal caregiving. Spousal caregiving is a difficult thing to recognize or support within the community, as it is often done quietly and in private. Spousal caregiving saves our society a great deal of resources, especially money. Despite how it helps keep health care costs lower for everyone, all too often it is unsupported by the community. After examining some statistics and identifying several important issues, I will set forth some ways that communities can provide more assistance.

Informal Caregiving Defined

What is informal caregiving?  Informal caregiving is the term used to define the unpaid support and help given by friends and family members to people who are either temporarily or permanently unable to function independently. Caregiving is best described as the process of providing support to another person that involves a wide range of activities. This can range from emotional support to direct assistance with personal hygiene. Informal caregivers are rarely paid for what they do and generally have no training that helps them learn how (LA Health, 2010).

Informal Caregiving Value

An estimated 40 million American over 18 years of age have provided unpaid care to another adult in the preceding year. Informal caregivers now provide 80% of the long term care in this country. When considering the financial value this care provides as a component of the larger picture of health care in this country, it is important to consider this one simple fact: During 2007, informal caregivers provided $375 billion or approximately 2.7% of the U.S. Gross Domestic Product (GDP) at no direct cost to society or health care insurers. That amount exceeds the money spent by federal Medicare and state Medicaid programs combined. The increase in informal caregiving is being driven by shorter hospital stays and increased usage of outpatient procedures, both of which are changes being made in this country’s health care system designed to increase profits for health care providers and insurers (LA Health, 2010).

Informal Caregiving Statistics

In 2007, the Los Angeles County Health department surveyed adult caregivers. They found that 16% of adults reported themselves as being informal caregivers.  Most informal caregivers are between 50 and 59 years old (21.3%), and one-third of all care-receivers live with their caregiver (33.2%).  Nearly one out of every ten caregivers are caring for their spouse or partner (9.8%).  Almost half of caregivers reported that the person they are caring for depended on them for assistance with two or more of the following activities of daily living (ADLS): transportation, eating, toileting, bathing, dressing or taking medication (45.7%) (LA Health, 2010).

Maintaining their own health status is a primary concern amongst informal caregivers.  Often referred to as the “Caregiver Burden”, adult informal caregivers are highly susceptible to a state of physical, mental and emotional exhaustion due to the intense demands of caregiving.  This is due to the fact that caregivers have a hard time recognizing their own needs and seeking help for their own exhaustion and frustration, which in turn puts more strain on their health (LA Health, 2010).

The National Family Caregiver’s (NFC) association reports similar findings from their own surveys of family caregivers.  The NFC also reports that 3 out of 4 caregivers report they do not go to their own doctor as often as they should, and over half of caregivers admit to skipping doctor’s appointments for themselves. NFC also found that 6 out of 10 caregivers describe that their own eating and exercise habits become significantly worse after they began caregiving. Over half of family caregivers exhibit clinically significant symptoms of depression, and many of them meet the diagnostic criteria for major depression. One of the most significant findings is that studies have shown that the constant stress combined with the lack of self-care caregivers experience can cause premature aging, often taking up to ten years off their life (NFC, 2011).

Spousal Caregiving Defined

Spousal caregivers are a subset of informal caregivers who are caring for a spouse or partner. They have a complex set of emotional issues that need to be addressed in addition to the physical health concerns. As mentioned previously, an important component of long term caregiving is called “self-identification”, where the caregiver realizes and adjusts to their new role. A spousal caregiver and President/CEO of the National Family Caregivers Association, Suzanne Mintz discusses her own self-realization.

“By identifying ourselves as family caregivers, we are in a position to fight for our rights, to begin to change the way society regards us, to start feeling better about our situation because we are identifying it for what it is-a painful job that we are so often asked to do alone, regardless of physical, emotional and financial costs. For too many years I did not have a name for what had happened to my life when my husband Steven was diagnosed with Multiple Sclerosis. For too many years I was angry and unable to be comfortable with myself.” (Mintz, 2010).

Self-Identification of Spousal Caregivers

Richard Anderson, past President of the Well Spouse Association, sums up the needs of spousal caregivers by quoting the motto of Well Spouse, “When one is sick, two need help.”  His experience as a spousal caregiver is typical of other long term spousal caregivers  (Well Spouse, 2010).

“My story, like that of so many spousal caregivers can be summed up by a mantra I adopted: WIT: Whatever it Takes –i.e. resilience in the face of many difficulties. Married to Vivienne for 31 years, I was her caregiver for 29 years. In the first decade she had many symptoms of a baffling illness that was finally diagnosed in 1985 as an auto-immune disorder, scleroderma, in a rare form that affects the internal organs. She died in 2004, only 1½ years after a diagnosis of liver cancer. Although some estimate that 80% of marriages in which one partner receives a diagnosis of chronic illness and/or disability break up, ours did not. She loved me and I loved her and remained committed the whole way through. But it got harder and harder. Change was a constant in our lives, mostly from her illness, and fatigue and other symptoms can strip the intimacy from a marriage, and turn it into more of a parent-child relationship. I felt increasingly alone, I had the feeling that so many caregivers have, that no one understands their situation. Self-identification — recognizing that one is a caregiver — and reaching out for help are difficult for many caregivers. Men take longer than women to do both. And of all family caregivers, spousal caregivers take the longest – due to the more intense nature of the intimacy relationship.” (Anderson, 2009).

Anderson speaks very eloquently on the self-identification problem, often referring to it as the “Keep it all Going, Superman” syndrome.

“Of all family caregivers, spousal caregivers are the last ones to recognize that they actually are doing caregiving. They can go on an incredibly long time picking up the pieces of the household tasks: cleaning, cooking, finances, shopping, as well as helping the ill partner in bouts of illness, or taking them to and from doctor’s appointments and hospital visits… and all this while holding down a full-time job, and sometimes moonlighting at another one as well to keep the finances from totally dwindling. But no, they don’t even consider they are caregivers. They are doing it out of love or duty, and somewhere along the line they lose themselves, and become absorbed by the battle against their spouse’s illness. This is the Superman complex and inevitably, it leads to a crisis point and burnout or even breakdown for the caregiver.” (Anderson, 2009).

Anderson also writes at length about what differentiates a spousal caregiver from other family caregivers. He identifies several key areas of concern.  First of all, spousal caregiving comes from a starting point of great intimacy, and it usually involves a loss of that very intimacy.

“This is probably the sine qua non of the spousal caregiver relationship. No other caregiver – whether of a parent, a child, a friend, a sibling or other further removed relationships starts out with the close intimacy that a couple has, right from the start.  And for spousal caregivers and their ill husbands, wives or partners, the almost universal experience is a loss of intimacy in the relationship. Whether they take note of it, or repress or deny it, this adds another layer of stress, from grieving the loss of the close relationship.” (Anderson, 2009).

Another major difference identified by Anderson is the financial impact that spousal caregiving brings. Most family caregivers live in two-income families, but for the spousal caregiver the norm is one income. Major out of pocket expenses for uncovered medical costs are also more common (Anderson, 2009).

Not all spousal caregivers work through a long period of adjustment followed by a more stable ‘self-realized’ role that lasts for years. Many spousal caregivers are caring for a person who has no hope of recovery from illness or even the possibility of anything but a steady decline in health, leading to a shift from home care to palliative care and home hospice, followed by death.  Since a spousal caregiver is taking care of their partner in life, it often becomes an intimate involvement in the end of the life of that most meaningful person in their life as well. The New England Journal of Medicine reports that there is a significant increase in death rates for spouses when their partner is hospitalized for a serious illness. More importantly for spousal caregivers, there is an even more significant increase in surviving spousal death rates that occurs after illness causes the death of their spouse (Allison and Christakis, 2006).

Compassion Fatigue

Compassion fatigue is a new term used to describe the secondary traumatic stress disorder experienced by many spousal caregivers.  The Compassion Fatigue Awareness Project (CFAP) is an excellent resource for spousal caregivers. They are working to raise caregiver awareness of the possible impacts that caring for a loved one can have on the caregiver. They define the signs of Compassion Fatigue clearly.

“Compassion Fatigue symptoms are normal displays of stress resulting from the care giving work you perform on a regular basis. While the symptoms are often disruptive, depressive, and irritating, an awareness of the symptoms and their negative effect on your life can lead to positive change, personal transformation, and a new resiliency. Reaching a point where you have control over your own life choices will take time and hard work. There is no magic involved. There is only a commitment to make your life the best it can be. ” (CFAP, 2012)

CFAP lists specific symptoms on Comapssion Fatigue, which include excessive blaming, bottled up emotions, isolation from others, substance abuse to mask feelings, compulsive behaviors, poor self-care, apathy and sadness,  and mental and physical tiredness. They have created a caregiver’s Bill of Rights that helps the process of self-realization and healing. (CFAP, 2012)

Strategic Solutions

The successful support of spousal caregivers can be broken down into several layers. Starting with individual action, it is important for spousal caregivers to feel as if they are not doing this alone. They often feel guilty about asking others for help. They often feel a need to keep their own pain to themselves, redirecting sympathy and concern to their spouse. Friends and family can help them with the process of self-realization by encouraging them to discuss it and helping them maintain their own physical and mental health. Simply being there when the spousal caregiver needs someone to talk too, or offering them a ride to a doctor’s appointment of their own, can make all the difference (LA Health, 2009).

Anderson feels that it is also the responsibility of those who have been spousal caregivers to explain this to others.

“Keeping it in the marriage, not talking, not realizing they are caregivers and need to take care of their own spiritual health… is it any wonder that spousal caregivers are under-recognized? A familiar complaint is, many people ask the caregiver ‘how is the ill spouse?’, but don’t ask how the caregiver is. ‘Is he/she better yet?’ is the cry from some, which shows a refusal to acknowledge the ever-presence of chronic illness. So, we need to come out of the closet, so to speak, tell friends, family, and workmates of what our needs as a caregiver are, so that they will know better how they can help.. And yes, there are a lot of good people about, who are willing to help. They just need to learn about the need, and then be asked!” (Anderson, 2009).

Government agencies, community-based organizations and employers can help ease the burden of spousal caregiving as well. They can help by actively educating the public concerning the health and financial consequences, and by increasing the availability of support and education programs. Health officials can develop care interventions designed to identify caregivers as patients, determine their specific needs and connect them with the support services they need.  Health professionals can participate actively in efforts to raise awareness of the importance of identifying the signs of depression and psychological distress in spousal caregivers who are their patients, and to ensure they have access to mental health services (LA Health, 2009).

At the highest level, policy makers across the U.S. need to recognize both the financial burden and the emotional stresses that are placed on spousal caregivers. Employer policies that allow for flexible work and telecommuting options for spousal caregivers can be a great help.  Tax credits for employers who provide job protection for workers who leave the workforce to become spousal caregivers can give them something to return to. The Family Medical Leave Act should be expanded to include domestic partnerships. Medicare and Medicaid should provide reimbursement for providers of spousal caregiver respite services (LA Health, 2009).

As the population of this country continues to age and life expectancies continue to increase, the need for spousal caregivers increases accordingly. Local, state and federal government can recognize and support the immense contribution of spousal caregivers by following the strategies recommended here.  Community health organizations can help by placing an emphasis on the health of spousal caregivers as patients themselves. Most importantly, friends and family can make sure that spousal caregivers do not feel alone. Communities, friends and families simply need to remember that “When one is sick, two need help.” (Wellspouse, 2010).

References

Allison, P. and Christakis, N. (2006). Mortality after the hospitalization of a spouse. New England Journal of Medicine. February 16, 2006. 354:719-730. Retrieved from http://www.nejm.org/doi/full/10.1056/NEJMsa050196#t=articleDiscussion

Anderson, R. 2009. The life of a well spouse. CarePages. Retrieved from http://www.carepages.com/blogs/lifeofwellspouse/posts/april_23_2008

Compassion Fatigue Awareness Project (CFAP). 2012. Retrieved from http://compassionfatigue.org/index.html

LA Health. 2009. Informal caregiving: implications for public health. County of Los Angeles Public Health. February, 2010. Retrieved from http://www.lapublichealth.org/ha/HA_ALPHA_REPORTS.htm

 Mintz, S. 2010. The importance of self-identifying as a family caregiver. National Family Caregivers Association. Retrieved from http://www.nfcacares.org/who_are_family_caregivers/suzanne_mintzs.cfm

NFCA. 2010. Caregiver statistics. National Family Caregivers Association. Retrieved from http://www.nfcacares.org/who_are_family_caregivers/care_giving_statstics.cfm

Well Spouse Association. 2009. About Well Spouse. Retrieved from http://www.wellspouse.org/