Futility of Care Guidelines and The Killing Fields of the Future

Medical Ethics and Managed Care

Futility of Care Guidelines and The Killing Fields of the Future

Lawrence R. Huntoon, MD, PhD

It is no coincidence that the debate over physician-assisted suicide and euthanasia has arisen at a time when managed care has been forced on employees and socialized medicine is being surreptitiously implemented in a piecemeal fashion in our country. There has been increasing talk of a "right to die" and of "death with dignity." Marching close behind those who insist on the "right to die" are those who feel it would be in society's best interest to create a duty to die.

Author of Forced Exit: The Slippery Slope From Assisted Suicide to Legalized Murder, Wesley J. Smith notes "something frightening is happening to American medical ethics."(1) Indeed it is. Doctors overriding the patient's and family's wishes by putting a DNR on a nursing home patient's chart, feeding tubes being disconnected in the "cognitively disabled," overt rationing of care based on age, and the list goes on. In fact, the "Oregon Department of Health recently declared assisted suicide to be a form of 'comfort care,' a covered treatment in Oregon's Medicaid rationing scheme."(1)

So, what exactly does this concept of "futile care" encompass? Well, Smith describes "futile care theory" this way: "When a patient reaches a certain predefined stage of age, illness, or injury, any further treatment other than comfort care shall be deemed "futile" and shall therefore be withheld, regardless of the desires of the patient or family. The personal values and morals of the patient are no longer relevant. End of story, and often end of life."(1)

If you're a sick patient and want to live, you better hope for a doctor who is able to play the "bureaucratic game" well and who can tweak your quality of life score high enough so that the bureaucrats won't demand your termination. Consensus, subjective guidelines, public policies and the ability to obtain medical care outside of a government system have taken on a whole new meaning in the era of cost containment and futility of care guidelines. Futility of care guidelines, you see, are "based on the perceived subjective value --- or better stated, the lack thereof --- of the patient's life."(1) Worth is in the eye of the bureaucratic beholder. Stated plainly, "futile care advocates view people who reach these stages of life as better off dead --- for their own benefit, for that of their families, and for society."(1)

In order to legalize the killing of patients whom government bureaucrats determine have lives not worthy to be lived, there are some who propose that we simply change the definition of death to include those individuals who technically aren't dead yet so that we can, in their view, achieve a better result for society. Knowing what government-run health care programs like Medicare have already done to pervert and bureaucratize the practice of medicine in our country, one can only imagine the scenarios that might arise under the bureaucracy of government futile care guidelines. Can you imagine, for instance, having to argue with a government bureaucrat as to whether a patient is actually dead or not? Sound far fetched? Couldn't happen? Well, perhaps a brief digression to the "Huntoon File of Medicare Horrors" would be instructive here:

Nearly 10 years ago, multiple HCFA and Medicare bureaucrats refused to believe me when I told them that a Medicare patient I had treated was, in fact, still alive.(2) According to these government bureaucrats I was guilty of providing medical care to a dead person! Never mind the fact that this elderly patient went down to the local Social Security office with identification in hand to prove her living state. No sir; that didn't matter one bit. These elite government bureaucrats had appointed themselves to be the ultimate judges of medical necessity and other important health matters, and if they determined that she was dead well by golly she was not just merely dead but most sincerely dead. And, they had the data in their main computer database to "prove" it. I, of course, subsequently wrote to my Congressman...at which point the bureaucrats reluctantly agreed to resurrect the patient in their system. Just imagine what these bungling government bureaucrats could do with futility of care guidelines. What's that you say? You aren't quite done using your kidneys yet? I'm sorry sir, but you do meet all of the guidelines and we did notify you of your death in the mail last week. And, according to the new mandatory organ donation law, we have the right to all of your organs after death unless you object, which you can't officially do, of course, because you're dead. Nothing personal sir. Just following orders.

Pure lampoonery you say? Hardly. Some of these folks in the "medical establishment" are deadly serious about these futile care guidelines. In May 1994, Dr. Marcia Angell, executive editor of The New England Journal of Medicine, wrote in the Journal that the legal presumption in favor of life as applied to patients diagnosed with permanent unconsciousness should be removed so that demoralized care givers won't be forced to provide care they believe is futile or which wastes valuable resources. How? One way suggested by Dr. Angell would be to change the definition of "death" to include a diagnosis of permanent unconsciousness. A November 1, 1997 article in the British medical journal Lancet, took the next logical step by urging that such "dead" patients have their hearts stopped by injection so that organs could be harvested."(1)

But what if you want nothing to do with the government's futile care guidelines, and have the audacity to suggest that you have some sort of inalienable right to Life, Liberty and Pursuit of Happiness? Or, maybe you just want a little more time to decide for yourself. Well, in the view of some collectively minded people, that would make you an "outlier" (socio-legal equivalent of "outlaw"). "Realizing the PR difficulties inherent in declaring a breathing body a corpse, Dr. Angell wrote that she would settle for mandatory time limits on providing medical treatment for the unconscious or the creation of a legal presumption forcing families with the 'idiosyncratic view' that their loved ones should be given life-sustaining treatment to prove in court that the patient would want such care."(1)

A professor of medical ethics and author of "Is There A Duty To Die?" (March-April 1997, The Hastings Center Report), John Hardwick, goes even further by saying that those who don't accept their duty to die have a "moral failing, the sign of a life out of touch with life's basic realities."(1) But, whatever happened to the ethical Hippocratic concept of doing what is best for each individual patient, one patient at a time? Well, according to the head of the Colorado Collective for Medical Decisions (a Futilitarian Think Tank), that outdated tradition has to change. "Health will be a community concept as much as an individual one, and will include other community considerations such as the need for recreation and transportation. Doctors' duty to their patients will be subsumed by their overarching responsibility to the collective. Consequently, the parameters of private health care decision-making will be limited to those choices considered appropriate by the community."(1) The AMA Council on Ethical and Judicial Affairs (CEJA) says that hospitals and managed care institutions should "adopt policies on medical futility as defined in the CEJA report."(3) CEJA member Dr. Victoria Ruff describes a due process approach that "can accommodate various community and institutional standards and perspectives. It insists on a hearing for the patient's or proxy's assessment of worthwhile outcomes, as well as for physicians' or other providers' perception of intent in treatment. It offers the parties a chance to discuss whether the primary purpose of the treatment is to prolong the dying process without benefit to the patient or others with legitimate interest."(3) And, not to be outdone in the ethical arena, the Robert Wood Johnson Foundation is offering grants totaling $11.25 million for "The Community-State Partnerships to Improve End-Of-Life Care" which will be administered through their Midwest Bioethics Center.(4)

Ethics clearly is not the limiting factor for many physicians in considering government futility of care guidelines. Many are just waiting for the government to OK such things as physician-assisted suicide and even physician administered euthanasia. Here are some of the results from the American Academy of Neurology's recent End of Life Survey:

° 14% of neurologists could conceive under certain circumstances that they would prescribe medication with the intent of aiding a patient in death; and up to 43% would be willing to do so if the legal constraints were lifted.

° 3.2% of neurologists acknowledge that under certain clinical circumstances they would participate in voluntary active euthanasia with 26% concurring if legal constraints were lifted.

° 30% of neurologists agreed that they had the same ethical duty to honor a terminally ill patient's request for physician-assisted suicide as they do to honor a patient's refusal of life sustaining treatment.

° 20% agreed that economic issues could also be an important consideration of discussions about the implementation of physician- assisted suicide.

° 49% agree that physician-assisted suicide should be made explicitly legal by statute for terminally ill patients."(5)

We conclude that many of the above respondents were simply mouthing the words when they swore to uphold those things in the Oath of Hippocrates on graduation from medical school.

It is clear from the above that nothing less than the creeping perversion of morals and ethics is taking place in our country. Absolute moral standards are becoming passé and everything is being relativized on its head. What is evil is now being called good. What is dark is now being called light. And he who is sick, old or defenseless is now being called worthless.* All of which makes it clear that freedom's not just another word for nothing left to lose. In the era of futility of care guidelines, if you lose the freedom to make your own medical decisions, you may very well have lost everything.

Footnote

* For what history has to say about this affair, the slippery slope of "a duty to die" and where all of this may lead, the reader should review Faria, MA, Jr., "Euthanasia, Medical Science and the Road to Genocide" (Medical Sentinel 1998;3(3):79-83), summarizing Dr. Leo Alexander's 1949 classic "Medical Science Under Dictatorship."---Ed.

References

1. Smith WJ. Futile care theory and medical fascism: the duty to die. Heterodoxy 1998;6(2).
2. Huntoon LR. My Other Foot. AAPS Pamphlet No. 1043, October 1995.
3. Ruff V. Ethics Forum: What are your responsibilities to stop futile care? American Medical News, June 1, 1998.
4. End-of-life Care Grants, American Medical News, May 25, 1998.
5. The American Academy of Neurology End of Life Survey, results presented at the Neurological End of Life Care Town Hall Forum, 1998 AAN annual meeting, April 27, 1998.

Dr. Huntoon is a neurologist in Jamestown, New York, president-elect of the AAPS, and serves on the Editorial Board of the Medical Sentinel.