Hospice Patients Alliance: Consumer Advocacy

Muddy Waters

by Ron Panzer
President, Hospice Patients Alliance
May 6, 2005




If you hike up into the mountain country you may appreciate the pure air, brilliant blue sky, deep green forest and the crystal clear sparking streams. You can almost reach up and touch the white fluffy clouds, and the mountain streambeds glisten with beauty. The waters reflect the sky above, and in a timeless moment, you may be reminded how majestic the Creation truly is. You may actually wonder at how beautiful it all is, more beautiful than you could ever have imagined.

You may wonder at Who could have created such beauty and perfection, a perfection that science reveals as intelligently organized down to the nth level of microscopic minuteness, to the incredible organization, function and structure of the human body, the interplay of all the cycles of life on Earth and all the way to the vast reaches of outer space. That there is orderliness to the physical world is something many take for granted.

Our scientists discover the laws of nature and pat themselves on the back for learning something new. Yet, they often refuse to acknowledge that were it not for the orderliness that pre-existed their discoveries, the scientific method, experimentation, and the ongoing accumulation of knowledge could not be possible. Without the orderliness of nature, there could be no predictable results when scientifically developed technology is applied.

Although the intelligent orderliness of our universe is the basis for all scientific explanation and knowledge, science does not explain where the orderliness of the world comes from; it does not explain how it all came to be, though scientists have put forward many theories over time. Scientists can explain how water evaporates, how clouds are formed, how rain falls and how streams and rivers are formed, but they cannot explain why they (or anything) exist(s). And no matter how much is discovered and explained, there always is and will be "the next level" of discovery, whether in the microcosm or macrocosm.

As you move along and descend from the summit, moving step-by-careful-step down the mountainside into the valleys, the waters change. All sorts of plant life, fish and animal life enter into the waters. The streams no longer hold inches of water, but feet of water, flowing deep and fast. The clear streams are replaced by often turbulent rivers, chaotic eddies and swift currents that cloud the water as they stir up mud from the depths below.

The difference between the clear mountain stream and the muddy river below is striking, yet the water in both is the same. There is continuity, a connection, and if you think about it, the huge river is simply a "development" of the stream: the stream and the river are one, just as the river and the ocean are one. And although they are "one," that does not mean they are in all respects exactly the same.

The form the water takes is at one place a stream, and further down, a river. Can we draw a line between the water of the stream and of the river? Can we draw a line between the water of the river and the water of the ocean it flows into? When exactly does the stream become "river? And when exactly does the river become "ocean?"

Though the appearance of the mountain stream and river are different, they are part of the same reality. And so it is with much of this world, including a human individual from conception to childhood, adulthood or old age. So it is with the individual even if he is ailing, disabled or unable to communicate. The appearance of the person changes over time, but he remains the same person.

So it is with America, whether colonial or Revolutionary America, a newly formed United States, or the United States we see today. There are always different perspectives from which to view the "reality" of the river, the person, this world or this nation. Each perspective has its own validity; each is just one "snapshot" of the one reality.

We have some glorious qualities as a nation that serve as an inspiration to people all over the world. Our nation's founding documents express lofty ideals and values based in a deep respect for the sanctity of human life. And our nation provides opportunity unparalleled in any other nation. Yet, our nation has also joined in perpetrating some of the darkest deeds in the ever repeating story of man's inhumanity to man. We don't enjoy remembering our nation's dark deeds, and some label those who expose our nation's dark deeds as "unpatriotic." However, if "patriotism" means ignoring the total reality of our nation's history, then it is quite a shallow patriotism.

We need to be realistic about our nation's depths as well as its heights, whether physical or historical. When the ships brought Africans over into slavery in Colonial America it was one of our lowest points. The slave masters conveniently justified their horrible acts by saying that the African natives were not fully "human." When native American Indians were rounded up, mistreated and even killed, soldiers and settlers alike conveniently justified their actions by saying that the native Americans also were "savages" and not fully "human."

And the economic benefit of "free" African slave labor or "free" American lands to be taken by settlers was strong enough motivation for most supposedly Christian settlers to "forget" the Judeo-Christian teaching to treat others as one would want to be treated. They chose to conveniently first consider those who were to be exploited as less than human, and then chose to systematically exploit huge populations for centuries!

On every occasion when there has been a pattern of discrimination, exploitation, or oppression against any ethnic group, it has been justified by saying that those being targeted were not "fully" human. And there often are huge economic benefits that are to be gained through the victimization of the other, targeted group of individuals. The rationale of denying the "personhood" of any individual is the first step into muddy waters, turbulent waters. Once accepted, the denial of personhood is used as justification for all sorts of abuse, neglect, and exploitation, ... even atrocities.

If you choose to deny the "personhood" of any group of individuals, you are stepping into the company of those notorious villains who committed terrible crimes against humanity: the Nazis, the slavers, the Ku Klux Klan, those who massacred noncombatant native American men, women and children, or those who have victimized the disabled, the elderly and others.

Adolf Hitler justified his war of conquest by spreading a belief in a new glorious German empire or "Reich." The German people were thrilled with the idea of renewed national pride and power. Many were also thrilled when they were able to seize the assets and businesses of the Jews and others who were forcibly relocated first to the designated ghettos, and then to slave labor in factories and the "concentration" camps. Similarly, settlers in the USA were thrilled to seize the lands of the nomadic tribes when they were forcibly relocated first to designated camps, then to reservations.

Working to achieve his empire, Hitler and his troops swept away millions of people, and seized vast swaths of Europe. 40-50 million people are estimated to have died as a result of battle during World War II, plus about 10 million as a result of genocide.

In the mid-1800s in the U.S., a new idea of "Manifest Destiny" took hold in our nation, suggesting that American expansion from the East Coast all the way to the West was inevitable and ordained by God. Before that time, it was assumed that the western regions belonged to Mexico or the Native Americans. "Manifest Destiny" was a convenient rationale settlers used to justify their seizure of lands held by the wandering Native American tribes.

Although large percentages of Native Americans died from diseases carried by settlers, those who survived exposure to those diseases were systematically threatened by discrimination, forced relocations to reservations and violent death. In a huge clash of cultures and populations, the American nation we know was established and many Native American Indian tribes were swept away into the dustbin of history.

The treatment of the Native Americans, African slaves and their ancestors is part of our very muddy American waters. The treatment of the disabled and the treatment of the very elderly in America is also part of our very muddy American waters. We don't like to look at that part of our history; we don't like to think about it. We prefer to proudly speak of the Bill of Rights, Declaration of Independence, a victorious American Revolution and the spread of democracy across the land. We like to speak about our democratic process, the smooth transition of power between elected officials of any political party. However, the total reality in U.S. history is rather muddied, even though we have our crystal clear streams of democratic documents and history. The clash between whom we say we are as a people and who we actually are as a people is stark.

During the Civil War, the Confederate states seceded from the United States in order to retain the convenient economic benefits of slave owning in the South. The Union of northern states fought to preserve the United States and to end slavery. Over one-half million people were killed in the war to preserve the Union. The prosperity of the powerful in the South was dependent upon continued slave labor. Once the war was lost, many plantation owners lost their lands. Others kept their lands by continuing to oppress the newly "freed" slaves by instituting sharecropping policies that kept the workers perpetually indebted to the landowners. Along with oppressive practices and discrimination, the Ku Klux Klan began a campaign of terror designed to keep African Americans subservient, afraid and powerless.

We face just as great a clash today between whom we say and believe we are as a people and who we are actually are as a people. While we have laws forbidding murder, state and federal law (and the courts' interpretation of our law) allows the widespread murder of various categories of people aside from the very rare execution of a small number of convicted murderers.

Women are allowed to kill their unborn or partially born children (individual human beings), scientists are allowed to kill cloned individuals, and our courts allow the killing of severely disabled individuals. The law enforcement agencies, the courts and the law allow the very elderly to be denied treatment with the intent that the elderly die, even when they could be helped by such treatment.

Legal "permission" to kill within a health care setting has been achieved through a combination of incremental steps towards the legalization of euthanasia and/or assisted suicide. Just as killing Native Americans, African slaves or the Jews during the Holocaust was rationalized by labeling them as "nonpersons," killing vulnerable elderly, disabled and chronically ill today is rationalized (by some) by considering them to be less than complete human beings.

One such incremental step is the redefinition of basic necessities of life such as "food and water" into "medical treatment" when that food and water is provided through a tube feeding. Another incremental step is using the well-promoted patient's "right to refuse" medical treatment, as a justification to withhold tube feedings. Another step towards legalized killing is the bestowal of unlimited powers upon individuals who serve as guardians for dependent patients. When a guardian (who is supposed to see to the welfare of the ward) acts to end the life of the patient, today's courts usually will not challenge that action, though it would have been challenged just a few decades ago.

The fiercely defended "right to privacy" becomes a cloak of secrecy to hide the killings occurring throughout our health care system. How can an accurate investigation of these killings be done when the privacy laws forbid the release of the information needed to conduct such an investigation?

And we now are told that patients are not being "killed," they are being "allowed" to die!

In practice, removing life-support such as a ventilator from a ventilator-dependent brain-injured patient is not considered killing; it is considered to be "allowing" the patient to die. However, if the patient demonstrated conscious awareness and intelligence, as did actor Christopher Reeve, society would consider the removal of ventilator support as "murder."

Why? Because our society has largely bought into the belief that quality of life, not sanctity of life, determines when a patient's life should be protected. If we accept the sanctity of life ethic, one may never intentionally end the life of a patient, and death is allowed when it naturally occurs. With the "quality of life" ethic being the deciding factor, when a patient is mentally retarded, brain-injured, in a coma, or somehow mentally incompetent, ending the patient's life is not considered "really" killing.

It is clear that an open "hunting season" has been declared targeting the severely disabled, elderly and chronically ill.

Removing food and water from a person who is dependent for nutritional needs is no longer considered killing; it is considered to be "allowing" the patient to die. I suggest that removing a fish from the water must therefore (according to such twisted "logic") also not be considered "killing," but merely "allowing" the fish to die. I suggest that (according to such twisted "logic") placing a plastic bag over the nose and mouth of a person is not "killing," but merely "allowing" the person to die. And I suggest that (according to such twisted "logic") removing blood from the arteries and veins of a person by shooting him or her is no longer "killing" them, but merely "allowing" the victim to die.

Where do the "logical" absurdities end? Our society has certainly entered very muddy waters. And many people are confused. We have been led to believe that it is "ok" to end the lives of others under so many "certain" circumstances that would never have been accepted just a few decades ago. Practices that are commonly implemented today would have been prosecuted as crimes just a few decades ago.

Are you confused? Sometimes, it is difficult to know what is the best course of action. We are hearing conflicting advice. Doctors, lawyers and many around us advise us to end the lives of the very elderly, to "allow" them to die. We are told to put them into hospice even though they are not terminal. We are told "it's all for the best." We are told, "there's nothing else you can do." Or, "you've done what you can." "Time to let go." But everything can be misapplied. What may be good advice at the very end when someone truly is dying is inapplicable to those who are not dying.

But we can clarify the decision-making process by comparing two scenarios:

Imagine: you are again up at the mountaintop, with the crystal clear water flowing in the stream before you. Imagine that you are standing before God as you contemplate ending the life of a vulnerable person. The sun is shining bright in the sky as you consider choosing to kill the vulnerable, needy, dependent person before you. Do you have any doubt about the "rightness" of your choice? Do you think God might condemn you for killing the one who is dependent upon you for care?

Would you hesitate? Are you sure you are "right?"

Can you stick a knife in? Or shoot the one who needs you to care for them? Imagine you go ahead and do so. Blood flows everywhere. Would you be pleasing God? The waters of the stream turn blood red. Are you pleased? Do you think God is pleased?

Now, ask yourself, why is it any different if you have a "medical" way of ending their life? Just because you kill with a pill, or kill by dehydrating someone to death within a "supportive" health care setting, does that make it morally acceptable? You are deciding to end someone's life and are actually ending their life!

Now, imagine you are choosing to continue to care for the vulnerable, needy, dependent person before you. Imagine that you are again standing before God as you contemplate continuing to care for the one who needs you. The sun is shining bright in the sky as you consider loving and continuing to care for the vulnerable, needy, dependent person before you. Do you think God would condemn you for caring for the one who is dependent upon you for care?

I cannot believe God would condemn us for caring, but I do believe we would be condemned for killing.

"But!" you say. "BUT!" you say louder: "It is hard!" "It is difficult!" "I have to sacrifice so much!" "It is 'ruining' my life!"

Few willingly seek difficult challenges, and nobody is saying here that doing the right thing would be easy. Nobody said it would not entail sacrifice, ... perhaps sacrificing all through your life. But what is this life about?

Are we here to serve, or to serve ourselves?

Are we here to do what is convenient for us, or to do what is a blessing to all around? We hear talk of further "treatment" being a burden on the patient, and at the very end of life, when death is truly unavoidable, further treatment may be ended, allowing for a natural death. But when treatment is said to be a burden and the patient is not dying, and when life itself is said to be a burden, what are we really talking about? Those who promote this line of thinking continually ask, "who would wish to live like that?" They ask, "would you wish to live like that?"

That is not the right question, for people change how they think, and though many believe they would rather die than be disabled, those who are disabled tell us that life goes on, that meaning is found in their lives, that they want to live. Beyond that, there is always a purpose in life, though we may not fully understand that purpose now.

Are we deceiving ourselves when we consider killing the vulnerable an act of "compassion?" Is a more likely explanation found by recognizing that we as a society, or as individuals, selfishly consider the lives of the vulnerable to be a burden to us?

If we kill those who are "inconvenient," do we have any hope of retaining our humanity?

If we learn to heed the call to serve and follow a path upstream where the waters are clearer and purer, our way will be made clear. We can leave the muddy waters behind. And as we work through all the difficulties and sacrifice, we will know that not only are we not condemned, we are blessed!
 







The Hospice Patients Alliance is a 501(c)(3) charitable patient advocacy organization acting to preserve the original hospice mission and to promote quality end-of-life services.




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