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

Keisha’s Kairos Moment

Keisha’s Kairos Moment
By Gary M. Votour, MHCA

A kairos moment in health care… can you name one from your life?

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The ancient Greeks had two words for what we call time. One was chronos, which referred to the linear progression of time itself. Chronos is the one day follows another method we measure the passage of time with, as in “yesterday, today and tomorrow”. Whenever we measure time in seconds, minutes, hours, days, weeks, years, decades or centuries, we are speaking of chronos time, or as we more commonly call it chronological time.

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The Greeks also had another word used to define time, kairos. This unique word is lost in our language, but its meaning is still with us. Kairos refers to specific moment (or moments) of time where we make a decision based on possibilities presented to us in that very moment. What makes these moments in time different than chronos time is their potential. A kairos moment has the potential to change the future based on the decision the person experiencing the moment makes. Obviously, in some ways life is filled with reflexive kairos-like moments. We couldn’t walk down the stairs without falling down them if we didn’t decide to move our feet forward and down with each step. Kairos moments are somehow different, moments where we make decisions we should not make casually or based on reflex.

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A kairos moment can be the second when a  someone decides to say “I do” to a marriage proposal, or it can be the moment you and your spouse decide you want to have children. It can even be the moment you decide to give a homeless person the extra ten dollars you found in your wallet this week. A true kairos moment is when God gives us a unique opportunity to make a mindful decision to make a difference in our own or someone else’s life. A kairos moment in health care is no different, for both patients and providers alike.

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

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These are all examples of kairos moments in health care, where health care providers make a decision when they feel God has given them the opportunity to make a decision that shapes lives, a chance to express their compassion and love for the people they care for, regardless of the personal consequences. I have personally witnessed examples of all of these decisions, and can testify to the power they had to make a difference in the lives of others.

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It is not just providers that are given these opportunities to make life altering choices. Patients, family members and friends get these wonderfully unique opportunities given to them when someone they or someone they love is recovering from an illness or injury or even dying from a terminal disease. Visiting in the hospital, offering a meal, offering  companionship and even consciously praying for someone all have the potential to be kairos moments. Sometimes it goes even deeper, and we find ourselves challenged by God to make the right ethical or moral choice.

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In 2006, I was living in the ICU of a major surgical hospital in Boston. My wife, Lyn, was struggling to survive a surgical stroke. We were in that ICU together for weeks on end, and I met other family members who were struggling as well.  At my worst one day, when I was filled with self pity and feeling hopeless that we could possibly survive the ordeal, I met a young woman I will call Keisha and her parents. I’ll never forget them. Once I tell you about them, I doubt you will either.

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Keisha was 17. I met her parents in the waiting rooms one day, and they let me visit her whenever I wanted. She was an awesome young lady that I will never forget. She had been having tumors in her brain sue to a rare form of cancer all of her life. Over a dozen surgeries over a ten year period removing tumors had been performed successfully. She was back this time because after a two year remission, her latest scans showed three new ones. Keisha and her parents had decided to tempt fate one last time.

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I first met her a week before her last surgery, so I did not get to know her very well. But I will never forget the first time we met. She was sitting in her bed, her scarred head shaved and prepped. Just sitting looking out the window.  I told her about Lyn, who was three ‘rooms’ away. I asked her if she’d like some company, and she said, “Sure. Pull up a chair”. I asked her what we were looking at. It was snowing outside and we were up on the 12th floor, so all you really could see was the snow swirling around outside the window.  She told me, “Outside.. we’re just watching outside. I need to know it’s still there waiting for me.”

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I sat there, quietly looking outside with her for an hour or so. We didn’t say much. Then she started to cry. I reached over and held her hand, and she said “My parents love me so much… but to be honest with you… I hope I don’t make it through this again. I hate watching them suffer along with me.”

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It was an epiphany for me. My eyes opened through all the pain I felt and saw how hard it must be for anyone to actually be so accepting of their own death. To be so selfless and loving that the only reason a fighter – a survivor like her- the only reason she would give up would be her love of others.

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I 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.

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.

Is there Hope in Hospice Care?

Is there Hope in Hospice Care?
By Gary Votour, MHCA.

What is hope? Hope is desire accompanied by an expectation of or belief in fulfillment. One can use the word as a verb (I hope for something) or a noun (I have hope I will find something). Does the move from recovering from an illness in a hospital to anticipating the end of life as a hospice patient entail giving up hope?

Hospice care in this country is a relatively new branch of medicine and health care. As it continues to evolve, new dimensions to its core function are being addressed by the medical community. One of the areas of recent research is the ways in which a hospice care provider can provide spiritual support to patients who are approaching the end of their lives.

Traditionally, Western medicine has adopted a view of detachment from the religious or spiritual explanations of illness and cures. Biomedical approaches focus primarily on the physical body and its diseases and illnesses and adopt a scientific view of both. At the same time, most acute care providers have chaplains who strive to bring spiritual comfort and hope to patients in times of illness.  This creates a tension between traditionally trained care providers who have been taught to disregard the spiritual needs of their patients in favor of a clinical view and those who have adopted a profession of providing spiritual hope to those same patients.  (O’Connell, 2001)

Hope is an important aspect of spirituality. The hope for a cure or a rapid recovery is its most common manifestation in acute care settings. In hospice, that hope often becomes a hope for an afterlife as death approaches. Hope belongs in the intersection of clinical and existential concerns… and as a patient moves from one to another, a sense of hope is often what binds one to the other.

Figure 1. Domain of overlapping clinical and existential concerns.
(Josephson and Peteet, 2004)

Hope and Hospice Care

Patients who are facing death draw hope from a number of sources, most importantly from their own individual spiritual view of the world. By developing a better understanding of the worldview of a hospice patient, care providers can better provide the spiritual support a patient needs to maintain hope. Hope may be as simply as wanting a pain free end to a life cut short by illness or accident. Hope may be as simple as wanting time to bring your mortal affairs to an end. Hope may be as simple as needing time to reflect and prepare oneself to meet their creator or move into a new life in different world.  (Moll, 2010)

A spiritual worldview that includes hope helps bring a patient closure to mortal affairs and an acceptance of death in anticipation of a spiritual afterlife. For each patient, hope is different.  The job of the care provider is not to decide what a patient should hope for based upon their own beliefs or perceptions, but to discover what the patient believes and provide support for that belief.

As a patient moves into hospice care, a shift from a world of authority to one of autonomy occurs. In an acute care setting, authority is given to the doctors and other care providers to act on one’s behalf. This authority is reinforced by a world of white coats and clinical settings.  The decision to accept one’s death goes against that world, and doctors in particular often feel they have failed a patient if they choose to pursue hospice care and forego treatment for a fatal illness.  The guilt that feeling of failure creates often leads a doctor to make a patient feel as if they have somehow failed the doctor if they choose hospice… but it is the patient’s choice to regain autonomy, and it is their right to do so when and how they choose.   For many patients, hospice brings a period of peace and a release from pain before they die. That time is worthy of hope.  (Moll, 2010)

Hospice is a philosophy of care where the emphasis is on the quality of life, not about prolonging its length.  Those that provide hospice care are touched by death over and over, and often they begin to lose hope themselves. They disconnect, become clinical and forget that part of their job is to help their patient hold on to hope.  For them I offer the following quote by Rob Moll, author of The Art of Dying.

“As anyone who has observed a good death can attest, it is in many ways a life changing event for those who watching. While tremendously sad and even horrible, a good death can be beautiful and deeply moving. … There is less mystery as we see how the physical body ceases to function. There is less fear as we see caregivers assist the dying in their last moments. There is more hope as we watch, even for a moment, the veil lifted and a dying person drawn into eternity. When we’ve seen a friend or loved one die, it’s easier to learn to die.”

Is there hope in hospice care?

Of course there is.

It’s at the very core of it.

It is even in the word itself.

One simply has to look for it

to find it there.

References

Josephson, A and Peteet, J. (2004) Handbook of Spirituality and Worldview Clinical Practice. Arlington, VA. American Psychiatric Publishing, Inc.

Moli, R. (2010). The Art of Dying.  Downers Grove, IL. InterVarsity Press, Inc.

O’Connell, L. (2001). Integrating spirituality into health care near the end of life. Innovations in End-of-Life Care. USA. Education Development Center, Inc.