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.

Advertisements

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/

Medicaid vs. All of Us

Medicaid vs. All of Us
by Gary M. Votour

According to the National Association of State Budget Officers (NASBO) and the National Governors Association (NGA), almost all states are cutting Medicaid funds to balance overwhelmed budgets. During fiscal year 2012 33 states have lowered provider payments to nursing homes, hospitals and physicians. 16 states have frozen provider reimbursements, and 25 states have or are introducing benefit limits for their Medicaid recipients. (NGA & NASBO, 2011).

Should health care providers and advocates be able to sue state-run Medicaid programs when they decide to cut reimbursements for care in order to balance state budgets? The U.S. Supreme Court decided yesterday that yes, yes they should. This decision will now ripple throughout the country, as state governments continue to eliminate funding for their individual Medicaid programs. In most cases, the cuts are being made to balance state budgets and narrow massive deficits. In at least ten states, providers and health care advocacy groups have tried to sue state governments to prevent cutting services to the state’s poor and elderly. Now they are heading to Federal courts in the wake of this decision.

In 2011, New Hampshire’s reductions in Medicaid reimbursements by $115 million to hospitals led to the elimination of the jobs of over 800 health care providers. New Hampshire state government argued that the hospitals can simply tighten their belts and be run more efficiently, and they claim that it will not affect patient safety to force them to do so by giving them less money for the same amount of services. When 10 New Hampshire hospitals tried to sue the Medicaid program in State court to stop these cuts last summer, the New Hampshire Attorney General ruled that they did not have that right, citing that the hospitals themselves had not experienced ‘irreparable injury’ as a result of the cuts. (Monitor Staff, 2011).

Earlier this month, those same hospitals filed a lawsuit in federal court to block the cuts. Their argument is simple. If enough cuts are allowed to Medicaid programs, doctors and hospitals will no longer be able to provide services for Medicaid patients. They argue that less providers accepting Medicaid reimbursements does harm patient safety, and that forcing hospitals to cut services to the poor is illegal. (Gotbaum, 2012)

While sidestepping the central issue of the cuts themselves, the Supreme Court’s narrow 5 to 4 decision decided that lawsuits by health care providers in California could go forward with their lawsuit against California’s Medicaid program (Medi-Cal). This means that the battle in California and New Hampshire (and other states) will continue, as advocates fight to prevent cuts to Medicaid budgets in federal and state courts. Although the Supreme Court is divided on this issue (the vote was split between the liberal vs. conservative judges), it now brings a twist to the legal battle that has been ongoing for several years. The battle to prevent cuts to Medi-Cal has been even more convoluted than the one in New Hampshire.

When the cuts to Medi-Cal were first introduced, health care providers and advocates for the poor sued the state to prevent them. After a long legal battle, they won in State Court when the 9th Circuit Court of Appeals blocked the cuts. Then the Obama administration approved the cuts. So they went to federal court and this case has worked its way all the way up to the highest level. The conservatives on the Supreme Court, led by Chief Justice John G. Roberts, Jr. wanted to block the ability for anyone to file lawsuits in state courts protesting Medicaid cuts. Yesterday’s decision did exactly the opposite. (Savage and Megerian, 2012)

Right now you may be saying to yourself “Gary, this isn’t about ethics, it is about politics. It’s about budgets. It’s about taxes. It’s about eliminating waste and abuse of Medicaid funds.” If that’s you, I say you are wrong. Health Care is an industry in this country that exists to make money. Most hospitals exist to make a profit. Even a non-profit or charitable hospital still needs to make enough money to pay their staff and run their facility. We all pretty much agree that no one in this country should be denied access to health care, but some people cannot afford it. Whether they are elderly, poor or disabled, the reality is that we pay for their care. First of all, we do so because most people live by the golden rule; do to others what we would have them do to us. We all get old. We can all become poor. We can all become disabled. By supporting a society that takes care of us if and when we do, we take care of ourselves. The other reason we do so is even deeper… we do so because it is what is right. It is what is compassionate. It is how we show we care. That is an ethical choice, and it’s the right one.

Many feel that the states should be able to cut Medicaid budgets at will to balance state budgets and prevent higher taxes. They feel these decisions by states should not be something that should be fought by providers and advocates in court. That is the wrong choice. To understand why, you need to bear with me while I explain cost-shifting.

Cost-shifting is a term that is used in health care to describe the process hospitals and doctors use to shift costs between different groups of patients based on how they are reimbursed for the services they provide. When a care provider is being paid by Medicare or Medicaid, the amount of money they receive for their services is controlled by the reimbursement they are paid by the federal or state government. Since both Medicare and Medicaid generally pay less for services than private insurers do, the unpaid cost of the service is shifted to those who can pay more for it. This is really important to understand, so I’ll explain this with an example.

Let us say you run a hospital. On any given day, 100 people walk into your emergency room with an assortment of injuries and illnesses. The average cost for you to provide those services is $1000 per patient. 75 of those patients either pay for your services out of pocket or have private insurance, 20 have Medicare and/or Medicaid and 5 have no insurance and cannot afford to pay. You must provide the same level of care to all 100 patients, because there are laws that require you to do so. So you take the cost of those 5 patients who cannot pay and divide it up amongst all the other patients. That is $5000 (5 times $1000) divided by 95 (patients who can pay) and adds $53 to their bills. Simple enough, and not that big a burden, right?

Now assume that the average reimbursement you can expect to receive from Medicare and Medicaid is only $900. Keeping in mind that your hospital cannot afford to lose money, let’s do the math again. We still have the same patients who cannot pay, but now we must shift that cost to 75% of the patients who have private insurance or who can pay out of pocket. That $5000 (5 times $1000) is now divided by 75 and not 95, adding $67 to each bill. Also, there is now the $100 for the 25 Medicare and/or Medicaid patients that needs to shift. That $2500 ($100 times 25) is divided amongst the 75% percent, adding an additional $34 to the $67, so a total of $101 dollars is added to that original $1000 for each of the 75% with insurance or who pay out of pocket. That is a ten percent increase, and you need to understand that your insurance company is not going to take that extra $100 out of their profits, they are going to pass that back to you and your employer in higher insurance premiums and copays.

Now let’s look at what happens when you are running a hospital in a different part of town… one where far more patients are elderly or poor. Those 1000 patients still cost you the same average of $1000 to care for, but the ratio of who pays is different. Only 50% of your patients here have private insurance or pay out of pocket. 40% have Medicare and/or Medicaid, and 10% can’t pay. Using the same formula as before, you shift the $5000 (5 times $1000) to the 50% with private insurance or who pay out of pocket, adding $100 to each bill. You also shift the $4000 for the 40 Medicare and Medicaid patients ($100 times 40) to the 50%, adding another $80 to the bill, bringing their total up to $1,180.

Now think about what happens when the reimbursement rates for your Medicaid patients are cut by 10% or 20%. To keep accepting Medicare and Medicaid patients, you either lose so much money you eventually have to close, or you shift so much costs to the other patients they go somewhere cheaper. Realizing that you need to lower costs to stay open and compete with other hospitals, you stop accepting Medicare and Medicaid. The break point for this decision comes sooner for the hospitals that provide health care for the higher percentage of Medicare and/or Medicaid patients. That translates to a simple fact… when Medicaid reimbursements are cut by the state, hospitals curtail their services from those who need them most in the places where they are most needed.

The other way to look at this is from the state’s perspective. When cutting funds to Medicaid, governments officials often state that the facilities will need to learn how to make do with less. They will often cite large executive salaries and high overhead costs as areas where the hospital should cut to make ends meet, and justify their decision to cut reimbursements by saying they need to in order to keep from raising taxes. This is a top-down approach to spending that impacts quality of care, no matter what is stated. Although it may translate to fewer taxes, the costs of the cuts are felt proportionately greater by those who either have health insurance or self-pay. The proportionate impact is felt even more by those with high copays when they become sick or injured.

It is important to realize that cutting Medicaid may make a few vocal opponents of government funded health care happy in the short term, but it passes those cuts onto all of us eventually. Even when hospitals close or stop accepting Medicare and/or Medicaid it impacts us all. When the elderly, poor and disabled have less access to health care, they are less likely to avail themselves of preventative services. When people do not approach their own health with a proactive perspective, they suffer more from chronic illness later in life, and this in turn again raises the costs for all of us. In other words, if that local hospital in our second example closes or stops accepting Medicare or Medicaid, the people nearby who need their services the most do without preventative care like cancer screenings. Fewer screenings to detect cancer leads to more cancer patients down the road.

So you see… it is an ethical question. It is one not to be left to state officials who may be serving a vocal constituency or jockeying for public support during a re-election. That’s why the U.S. Supreme Court has decided that if the providers feel that a state’s cuts to Medicaid are illegal or unethical, they can take them to court and force the state to publically defend those decisions, out in the open, in front of all of us. After all, we’re the taxpayers, the ones whose money the state is entrusted to spend on our behalf. They work for us, and everyone should be able to hold their employees accountable.

References

Gotbaum, R. 20102. Lawsuits over state cuts to Medicaid. NHPR. Januray 11, 2011. Retrieved from http://www.nhpr.org/post/lawsuits-over-state-cuts-medicaid

Monitor Staff. 2011. State Responds to hospitals’ lawsuits. The Concord Monitor. September 27, 2011. Retrieved from http://www.concordmonitor.com/article/282284/state-responds-to-hospitals-lawsuit?

National Governors Association (NGA) and the National Association of State Budget Officers (NASBO). 2011. The fiscal survey of states. Spring 2011. Retrieved from http://media.mcknights.com/documents/24/spring_2011_fiscal_survey_5896.pdf

Savage, D. and Megerian, C. 2012. Supreme Court lets providers continue suing to stop Medi-Cal cuts. Los Angeles Times. February 23, 2012. Retrieved from http://www.latimes.com/news/local/la-me-medi-cal-20120223,0,7446743.story

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.