Posted on 04/29/2012 4:46:29 PM PDT by Brian Kopp DPM
By Kevin B. O'Reilly, amednews staff. Posted April 16, 2012.
Three decades after hospice emerged as the standard of care for terminally ill patients, the end-of-life treatments that palliative medicine physicians provide are frequently referred to as murder, euthanasia and killing.
More than half of hospice and palliative medicine physicians say patients, family members and even other health professionals have used those terms to describe care they recommended or implemented within the last five years, according to a nationwide survey of 663 palliative care doctors in the March Journal of Palliative Medicine.
Common palliative care treatments such as the use of opiates, sedatives and barbiturates to control pain and other symptoms are enough to draw accusations of murder and euthanasia, the study said. The troubling survey results come nearly six years after the American Board of Medical Specialties approved the hospice and palliative medicine subspecialty certification, and 30 years after the creation of the Medicare hospice benefit.
Nearly 1.6 million Americans received hospice care in 2010, up from about 25,000 in 1982, said the National Hospice and Palliative Care Organization. And palliative medicine has made its presence felt in hospitals, with 85% of 300-plus bed hospitals boasting palliative care teams, according to the New York City-based Center to Advance Palliative Care.
Yet the growing use of hospice and palliative care is creating more opportunities for misunderstandings, experts said. New developments in end-of-life care aggressive pain and symptom management (even to the point of unconsciousness), along with a greater willingness to withdraw advanced, life-sustaining treatments such as mechanical ventilation, dialysis, and artificial hydration and nutrition still strike many people as wrong.
The surveys findings highlight the gap between the well-established ethical and legal boundaries that demarcate acceptable end-of-life care and the understanding of patients, families and other members of the health care team, experts said.
Its alarming, said H. Rex Greene, MD, a practicing oncologist and palliative medicine specialist in Lima, Ohio. To accuse legitimate palliative care physicians of euthanasia and murder is a horrible mischaracterization of whats done to relieve symptoms at the end of life.
Twenty-five of the physicians surveyed said they were formally investigated by their institutions, state medical boards or prosecutors, with about half of those cases related to the use of opiates to manage dying patients pain. Nearly a quarter of the investigations were related to the use of palliative and sedative medications when discontinuing mechanical ventilation. An additional 8% of the investigations were for palliative sedation the practice of sedating to unconsciousness terminally ill patients who have severe, refractory pain.
All of these treatments when conducted with the consent of patients or surrogate decision-makers and implemented with the intent of alleviating pain or other symptoms in terminally ill patients are broadly accepted as ethically and legally appropriate, even if they have the secondary effect of speeding the dying process.
Physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care, says the American Medical Association Code of Medical Ethics. This includes providing effective palliative treatment even though it may foreseeably hasten death.
Although none of the physicians investigated was found at fault, most reported worry, anger, anxiety, isolation, depression and difficulty working as a result of the ordeal. Euthanasia accusations whether voiced in the patients room or in the courtroom could have a chilling effect on physicians treatment of dying patients symptoms, said John G. Carney, CEO of the Center for Practical Bioethics, a Kansas City, Mo., think tank that works to improve end-of-life care.
Im deeply concerned that if we dont pay attention to the message in this article, we are going to be dealing with this issue of physicians who are reluctant to do what they know to be right because they are afraid of what people will say or that someones going to investigate, said Carney, a former hospice executive director.
The distinction between aggressive pain control or the withdrawal of life-sustaining treatments and euthanasia is still lost on many patients and families, physicians said.
These misperceptions are really pretty hard-wired and difficult to eliminate, said David Casarett, MD, chief medical officer of the University of Pennsylvania Health Systems hospice program in the Philadelphia area. Believe me, if there were an easy way to communicate these issues, then we wouldnt have highly qualified physicians called before medical boards to explain their actions. To some degree, this is a cultural change. Were far ahead of where we used to be 20 years ago. On the other hand, we cant wait another 20 years for these things to go away.
Doctors who care care for dying patients should take into account the publics lagging understanding of end-of-life treatments, take time to explain their intricacies and make use of ethics consultation services, said Porter Storey, MD, executive vice president of the American Academy of Hospice and Palliative Medicine.
When I started training in this area 30 years ago, it was a rare thing to remove a feeding tube because nobody lived long enough to get that sick, said Dr. Storey, who practices outpatient palliative care in Boulder, Colo. Now many people are living until they are extremely debilitated on life support. And if you work in an ICU, you want to sit down and take time and talk to people, but when its happening every day, its hard to remember sometimes that the public didnt get informed that things have changed.
Yet confusion about end-of-life care is not limited to patients and families. A majority of the doctors surveyed said that other physicians or health professionals at times characterized their palliative care treatments as murder, euthanasia or killing.
As end-of-life care has become more specialized, the gap between what palliative care specialists see as appropriate care and other doctors perception of those treatments has grown, physicians said.
Those of us in palliative care and hospice dont think that much about putting a patient on a large dose of an opioid like morphine. We do it all the time, and we see patients do well, said Dr. Casarett, associate professor of medicine at the Perelman School of Medicine at the University of Pennsylvania.
Recently, a patient dying of cancer enrolled in Dr. Casaretts hospice program after deciding to stop chemotherapy treatment. The oncologist caring for the patient was upset and talked with Dr. Casarett, saying that the combination of stopping curative treatment and using high doses of opiates was wrong.
He said, We might as well just be walking away, and we might as well just shoot [the patient] now, Dr. Casarett recalled.
It still stings to hear that, he said. But Dr. Casarett takes solace in knowing that he is doing right by his patients. I tell other physicians that this is the standard of care, and that these sorts of medications and interventions are safe and effective.
More than half of palliative care doctors have been told the care they recommended or provided is murder, euthanasia or killing. The frequency of such accusations varies by source and at times includes other doctors.
Patient: 25%
Patients friend or relative: 59%
Physicians friend or relative: 25%
Another physician: 56%
Another health professional: 57%
Source: Prevalence of Formal Accusations of Murder and Euthanasia against Physicians, Journal of Palliative Medicine, March (ncbi.nlm.nih.gov/pubmed/22401355/)
Prevalence of Formal Accusations of Murder and Euthanasia against Physicians, Journal of Palliative Medicine, March (www.ncbi.nlm.nih.gov/pubmed/22401355/)
Opinion 2.201 Sedation to Unconsciousness in End-of-Life Care, American Medical Association Code of Medical Ethics, adopted June 2008 (www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2201.page)
Thats still killing a patient.
The goal should be to let the patient do as much "living" as possible. If a regimen of pain-killers transforms two weeks of agony into one week of comfort, the patient may end up dying sooner than without the painkillers, but may manage to do a lot more "living" before that time than would be possible without.
If the purpose of the medication is to give the patient more quality time, even at the expense of hastening death, there may be nothing wrong with it. Of course, in many cases euthanasia, the supposed "unfortunate side-effect" is in fact the goal, since there's no intention of improving the amount of quality time. But if a patient decides that one day of quality time is better than two days spent in agonizing pain, I would hardly consider such a choice "suicidal".
There is absolutely no doubt that 90% of all cancer patients die of morphine overdose, or stronger opiates.
Thank God.
I want to say something here: Over the last year I've been saying this online and was attacked by the religious zealots...you know, those same zealots that would take their mother to the promised land too...saying either it DOES NOT HAPPEN or that it was murder if it did.
To ALL of them I say go eff yourself and don't stand between me and my family.
Each and every one of them was a Santorum supporter as it was on Santorum threads when he started talking about euthanasia in The Netherlands.
I know there is a difference my good Doctor. But my position is that my life is my own and I’ll live it and die it as I decide, not some Doctor or Priest or Legislator.
If I take the decision that I don’t want any more pain then that’s between my physician, my wife, and me and no one else. I’ll deal with God when I see Him.
You better believe it.
Unfortunately, there is a new document, POLST, that may trump even a durable power of attorney for health care decisions.
Selective Killing Fields: POLST in ActionMonday, March 21, 2011
By Julie Grimstad
In my practice, while I steadfastly refuse to write a prescription with lethal intent or otherwise help the patient commit suicide, I can share with the patient information that he or she already has the ability to exert control over the time [of] death. Virtually any patient with far-advanced illness can be assured of dyingcomfortably, without any additional physical distresswithin one or two weeks simply by refusing to eat or drink. Ira Byock, M.D., American Journal of Hospice and Palliative Care, March/April 1995
Hospitals and nursing homes are becoming (or have already become) selective killing fields. POLST (Physician Orders for Life-Sustaining Treatment) is another in a long line of efforts to persuade people to refuse medical treatment. Living Wills and Powers of Attorney for Health Care (advance directives) have not been as successful in this area as their creators in the right-to-die movement had hoped they would be. Put quite simply, POLST protocols and laws are the death with dignity squads latest attempt to select those whose lives are viewed as futile in order to ensure their speedy demise. POLST forms are designed to limit the use of life-saving technology, life-sustaining treatment and even ordinary care, such as the provision of food and water. Compassion and patient autonomy are the alleged motives for promulgating POLST forms. However, a look at their origin tells a different story.
Analysis of the POLST movement reveals that it is a national effort to manage and control death under the guise of compassion. (Ethics and Medics, 6/2010, The Danger of POLST Orders.) The usual cast of characters is involved in this latest effort to advance the right to die. POLST was developed in the 1990s by the ethics group at Oregon Health & Sciences University, the group that also developed the Guidebook to the Oregon Death With Dignity Act (Oregons physician-assisted suicide law). POLST was developed with grants from George Soros Project on Death in America, as well as the Greenwall Foundation and the Cummings Foundation, all frequent sponsors of right-to-die organizations. Compassion & Choices (formerly the Hemlock Society) promotes POLST. (For more detailed information/a timeline, go to .) POLST was one of the outcomes of the Project on Death in America. On 11/9/2003, the Boston Globe (Carey Goldberg, Globe Staff) reported, The Project on Death in America, financed by billionaire George Soros and the Robert Wood Johnson Foundation, poured more than $200 million over the last decade into end-of-life programs and research.
The POLST form differs from a Living Will or a Power of Attorney for Health Care (advance directives) because, once signed by a physician, it is the physicians orders and may therefore be carried out immediately. Furthermore, the law governing advance directives, which requires two physicians to certify that the patient is capable of making medical decisions, will not apply to a POLST form. POLST leaves the patient wide-open for abuse.
The proposed Wisconsin POLST law is extremely flawed from a moral point of view.
1. The analysis introducing the POLST bill states that the withholding or withdrawal of treatment under this bill does not constitute suicide. If a person chooses to have withheld or withdrawn treatment or care that is life-sustaining, is this not a death wish and suicide/assisted suicide if carried out?
2. The bill itself states (7)(g), Nothing in this section condones, authorizes, or permits any affirmative or deliberate act to end life other than to permit the natural dying process. What does this mean? Is death by dehydration a natural dying process for a person in a persistent vegetative state, or a person with a life-limiting illness, or anyone else, for that matter? Does denial of medical treatment or care that could prevent death merely permit a natural dying process?
3. The POLST philosophy is that patient autonomy is paramount. That is completely contrary to Catholic moral teaching. A person has the moral obligation to use ordinary or proportionate means of preserving his or her life. (USCCB, Ethical & Religious Directives)
4. The POLST forma physicians preprinted order sheethas check boxes to refuse even very ordinary things, including food and fluids. This is contrary to authentic Catholic moral teaching regarding medical decision-making. Whether or not to provide/receive nutrition and hydration is not a choice. They are either medically contraindicated (because they are actually causing harm to the patient or because the patients body can no longer assimilate food and fluids) or they must be provided.a. In March of 2004, Pope John Paul II addressed the International Congress on Life-Sustaining Treatments and Vegetative State. He unequivocally stated that withholding hydration and nutrition from patients when these will sustain their lives is wrong and that death by starvation and dehydration ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission.
b. In 2007, the Congregation for the Doctrine of the Faith strongly reinforced this papal instruction, writing to the bishops of the United States: The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.5. POLST forms are typically filled out as the patients condition changes/worsens, frequently when the patient and his/her agent are under stress. POLST forms supersede previously signed advance directives. Would the same wishes (as are expressed when the physician checks boxes in the POLST form) have been expressed by the patient/agent in a less stressful situation? Since the POLST form overrides the patients Power of Attorney for Health Care and the physicians orders in the POLST form are generally carried out immediately, POLST is extremely dangerous.
6. Confronting patients with such difficult and fateful decisions during a time of crisis seems particularly heartless, especially when they have already signed a Power of Attorney for Health Care expressing their values and carefully stated wishes. Assisted suicide proponent Ann Jackson testified before a Senate subcommittee in 2006. During the course of her testimony in favor of assisted suicide, she said that one of Oregons successes was POLST. She claimed that respect for end-of-life wishes is virtually 100% when POLST is in place. (Testimony before the Senate Judiciary Committees Subcommittee on the Constitution, Civil Rights and Property Rights, The Consequences of Legalized Assisted Suicide and Euthanasia, 5/25/2006.) But does a POLST form accurately convey a persons wishes and values? Filling out the POLST form includes a coaching process designed to elicit the patient responses desired by the physician or other medical professional who is checking the boxes. It is actually not difficult to clarify away a distressed patients previously expressed wishes by presenting what a medical professional considers realistic options. (Medical professionals receive special POLST training in this regard.)
7. POLST sets the stage for neglect, substandard medical treatment, and cost-saving at the expense of patients lives. Although POLST promoters steer clear of mentioning the money motive, it is undoubtedly a factor in efforts to limit treatment.
G.K. Chesterton, in Whats Wrong With the World? answered that question: What is wrong is that we do not ask what is right. We ask what is quick and convenient, what is useful, what is cost-effectivenot does this course of action/inaction respect this person and his or her life? The most right thing we can do is love and respect one another and ourselves. Even if we do not love perfectly, at least we must try to do what is right, not merely what is easy. The sick person should not be offered the option to hasten his or her death, particularly when weak, in pain, feeling overwhelmed or just plain tired of fighting.
Have we grown cold? Have we lost the fervor of our conviction that every human being has dignity and is worthy of life? Those of us who are pro-life must vigorously oppose the POLST movement. We must protect the lives of everyoneincluding ourselves. We must never succumb to the false compassion of those who see planned death as the final solution to human suffering and the burden of caring for one another.
POLST advocates will not accept no. They will keep reintroducing POLST bills. Be vigilant.
Dr. Kopp
I was my husband’s primary caregiver, 24/7, until he died. I cared for him for years before the last months and days. I was surprised and upset ny his death, for I thought he would go on for many more years
I had his favorite drinks (San Pelligrino “Aranciata, Schweppes “Ginger Ale, Filtered Water, “Pepsi”, etc ) all on his bedside, with straws if he wanted, and sponges if that was all he could take.
He eventually refused all of them. It was hard to get him to accept even a swab of his mouth. He didn’t complain of dehydration or thirst. He would reject the swab of his mouth, no matter what we soaked it in. I did it anyway, and kept his lips soft with Burt’s Bees.
Hospice was the most supportive to me, explaining that when someone is dying, they lose the desire to eat and drink, because their systems are shutting down, and trying to do what we think right, forcing food and drink on systems that are shutting down does more harm than good, and can prolong their agony.
If they complain of hunger or thrust, feed them, offer them their favorite beverages, but if they refuse them - who are you caring for, yourself, or them?
Please, people. Those of us who have taken care of a loved one dying of an awful disease do not need to read that we didn’t do right by those we have loved more than life itself.
Hospice, as I understand it, means meeting the needs of people with illnesses that are considered terminal. A strange statistic that isn’t usually discussed - Hospice patients often outlive their counterparts who get conventional medical treatment.
I have read that, but like everything one reads on the internet, it needs to be double-checked.
I was hoping to prolong my husband’s quality of life when he stopped eating and drinking by calling in Hospice. I also had the support of our assisted living center nurses and care-givers, totally separate from Hospice.
Nothing helped. And, I am going to go to my bed and do the usual. Cry myself to sleep, because he was to young and too healthy to have to leave me alone. He was only 72, and hated losing all of his abilities, both physical and mental
Hospice is not to be feared, and I regret the posters who paint these wonderful people in such a bad light. They are wrong, in my humble opinion.
There is a vast difference between “euthanasia” and a “natural death”. The first is criminal, the second can be kind, depending on the circumstances.
Going to bed, hoping for a dream of him.
We are going thru this with my father in-law. He has bone cancer and is in constant pain. His wife was a nurse for intensive care patients. She knows what she is doing and it is tough. She is doing hospice at home. They both agreed to let time pass and die peacefully. Medications and all. Just no resuscitation when everything quits.
He is down to about 50% of his weight. Not eating or drinking. He will probably pass within the next few days.
All families have this discussion before hand. At least we did.
Sorry for the loss of the love of your life.
Thank God.
I want to say something here: Over the last year I've been saying this online and was attacked by the religious zealots...you know, those same zealots that would take their mother to the promised land too...saying either it DOES NOT HAPPEN or that it was murder if it did.
To ALL of them I say go eff yourself and don't stand between me and my family.
Each and every one of them was a Santorum supporter as it was on Santorum threads when he started talking about euthanasia in The Netherlands.
I really don't think Jim Robinson wants his forum used to promote euthanasia.
I knew his brother fairly well. I never dreamed I would have to protect him from his brother, and even if I had, legally I could not have done so. Some things are beyond our control.
well, bye
No, you tortured him for the extra days, weeks or months that he survived under intense...and futile...medical care.
This is one of the most sick and abusive posts I've ever witnessed on FreeRepublic.
Some hospices are very good. Some are indeed to be feared, like the one that killed Terri Schiavo.
The hospice we are working with just had a woman come to her in the past month who had been refused by two other hospices. She has esophageal cancer and has had a feeding tube for years without difficulties. She is starting to go downhill, not on death's door, but in need of hospice care. She cannot swallow on her own due to the prior treatment for the esophageal cancer.
She was told by TWO hospice providers that they would not take her unless she agreed to stop the feeding by feeding tube. She has months to live. Agreeing to their terms, which violate federal guidelines, would be a premature death sentence.
Not all hospices are trustworthy. Some are deadly.
Thanks Jim. I couldn’t believe they posted that here.
I've see stuff in nursing homes I pray never happens to me or a loved one. I don't mean mistreatment. I mean people for which the medical knowledge of the early 1990's could not stop their pain without it becoming a lethal dose. I know because I heard their screams. These weren't the dementia patients these were terminal in pain and death could still be a month or two away.
My conscience in my caring for my dad is clear. People who think the magical answer is tubes etc need to understand THEY HURT and they feel pain much more intense. I've known patient after patient who ripped them out. The process some go through in their last conscious hours makes keeping anything on them or inside them as a catheters virtually impossible. They want everything off of them and out of them clothes, linen, tubes, you name it.
Thanks for all of this. I’m trying to pull myself away as I have an early wake-up for a shift at that pesky women’s hospital tomorrow. This info is quite captivating.
I had brunch with an oncology nurse friend this morning. I must chat with you ASAP
God bless you for this work you are doing, and prayers for those who fail to see the evil that you’re exposing.
God Bless you...I know what it’s like to take care of someone at home, but I wouldn’t have it any other way.
You are so right; that is what they were designed for=death.
Even when hospice comes to your home,it’s to hasten things along and save money.
Hope you are well, and thank you for sharing.Your husband was blessed to have you....
Mrs CT Hillbilly
And, I am so sorry for the loss of yours. Do not let the Hospice-trashers cause you and yours any second thoughts.
When my husband refused food and water, I was so blessed to have people around me to explain the why and the how of how death happens.
We must respect what their bodies are telling us, and not interfere with that wisdom, even if it makes us feel heroic, good about ourselves, or whatever.
If we love them, we respect them. We give them what they want, and if they do not want, we do not force ourselves upon them.
We hold their hands, we tell them how much they have mattered to all of us, and we tell them that we will never forget them.
We tell then that it is ok to go when they think they are ready, and that we will sit with them until that time comes. We tell them again and again, how much we appreciate their lives, what they have given to all of us, and how we will love them, warts and all, forever
My father discovered that he had developed pancreatic cancer too late for anything other than chemotherapy and radiation. Fortunately, he had access to incredible medical care from the best in the pancreatic cancer business.
For those who do not know, this type of cancer is painful and relief from that pain requires a significant amount of medication, including opiates. In addition, not only are there physical aspects to dying that are hard to anticipate and unique, there are also great mental challenges as you begin to face your end on Earth.
My father was a devout Catholic, outspoken anti-abortion, and gave money to a myriad of causes designed to help people in need. He also was very giving of his time, helping countless children mature and grow into responsible adults.
After fighting this horrible disease - nothing can prepare you to watch someone suffer in this manner - for 14 months, he could fight no more. In fact, there came a definitive point where he knew he would soon die. Everyone likes to think that their father is tough, and mine was provably so, but after making every sacrifice, allowing his body to be poked and prodded for more than a year, and trying every available remedy, he accepted that he was destined for Heaven.
We did speak with Hospice, and in fact signed him up for the program for him to die at home as peaceful as possible. However, that same evening he began to experience the greatest pain of his entire journey and instead of calling Hospice, my mother decided to take him to the hospital. That is where he was admitted to the palliative care floor at his hospital, and was where I learned a new phrase (palliative care) and what that entailed.
He had little time left to be conscious, in fact only 2.5 days in hindsight, so there was a flurry of activity to make final plans, say goodbye, and try to make him as comfortable as possible. His doctor, who was the most wonderful, caring, a compassionate person you could ask for, who had stuck with him throughout the journey, was there. He told her that he was ready to die, that he was done fighting, and that if they could give him a shot right there to take him out of his misery, he would take it. In absence of that option, he asked that he be kept free from pain.
From that point forward, it is hard to put into words what I witnessed. Along with my mother, we lived for almost 10 days in that little room (I left for roughly 6 hours in that time period, my Mom almost none) caring for him the best that we were able. I had never witnessed someone die in this manner, let alone my father, and there are sounds, sights, smells, and other things that were horrible to experience. He was essentially unconsciousness for 7 days, though there were a few brief moments where he “woke up” and tried to communicate with us. We had worked with the staff at the hospital to increase his morphine intake until he no longer exhibited outward signs of pain, and it certainly affected his ability to communicate and function.
Regarding hospice care and palliative care, at the time I did not give too much weight to the fact that they only kept him on a slow IV for hydration and no nutrients whatsoever. He asked to be kept pain-free and he acknowledged his fast-approaching death. The reason behind the extreme pain that led him to the hospital this final time was an intestinal blockage that prevented him from digesting food. Essentially, without external infusion of a source of nutrients, he was a goner no matter what at this point - the disease had reached its apogee.
Did the lack of nutrients hasten his death? Probably... Did the large amount of opiates hasten his death? I don’t know, but possibly... Did he want to die? Yes. Would he have accepted a quick death at the end without suffering? Yes, he specifically requested it from his doctor, but she refused.
In hindsight, I did feel that he was at least partially starved to death in the end, but I have to ask - why would we want to prolong his suffering? To what end? He wanted to go to God... He wanted the pain to end. He was tired of suffering and made his choices lucid and after much reflection. Had we given him nutrients, he could have possibly lived for a month or more while in extreme pain from the blockage. As it was, he made it almost 10 days and we were successful in keeping it mostly pain-free, but it wasn’t a 100% pain-free experience.
I miss my Father and it was hard to watch such a strong man get destroyed by such a ruthless disease, but the disease was destined to win over his physical body. This is without doubt or question - He was terminal. Upon reflection, I think that what the staff at the palliative care ward in the hospital accomplished was amazing. To a person, they were loving, kind, sympathetic, helpful, caring, and strong. They worked very hard to make sure that my father suffered as little as possible as he completed his journey here and began his next. Were I in his shoes, I don’t know what I would have done the same or different, but the terminal suffering would have heavily weighed in my decisions. He made his choice to move on and we accepted all of the assistance that we could to help him with his wish.
I don’t think that there ever will be a template that can be used to make these types of decisions, though our “leaders” are going to try. Ultimately, if it can be competently made by the patient, that is who’s wishes should be honored to the best of our ability.
That is exactly how we have done this. We just wish that my in-laws lived closer than 1100 miles so my wife could spend more time helping. We were there a few weeks ago repairing house projects and clearing the blackberries that have over taken the house. All is good for the time being.
Now go to bed and get some sleep.
I am not promoting euthenasia. I’m promoting leave me and mine the Hell alone.
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