FAMILIES WHO DEMAND INAPPROPRIATE MEDICAL TREATMENT FOR MORIBUND PATIENTS

FAMILIES WHO DEMAND INAPPROPRIATE MEDICAL TREATMENT FOR MORIBUND PATIENTS
Editorial Comment: Pittsburgh Post- Gazette, Sunday, October 30, 1994. Reprinted by permission.

David Crippen, MD, FCCM, Director, Surgical Critical care, St. Francis Medical Center, 45th Street off Penn Ave, Pittsburgh, PA,(412) 622-4210.

Recent times have witnessed much discussion regarding the "life is sacred at any cost" philosophy. Current technology is capable of indiscriminately maintaining some of the vital functions of the body, but the same technology does not necessarily allow us to heal underlying disease processes. An unintended side effect of modern technological advances has been the plausibility of maintaining moribund patients in a state of suspended animation for prolonged and sometimes indefinite periods. Unfortunately, we are beginning to see patients stalled in suspended animation; not alive in the sense we enjoy life but not able to die because technology has temporarily arrested the disease but not the disease process. In many cases, reanimation of such patients is clearly impossible even with the advanced medical technology available to us.

In most acute illnesses, time is needed to see if aggressive treatment will improve the patient's condition. As physicians, we are prepared to apply life sustaining technology to patients when the benefit seems to outweigh the risk and when there is a reasonable chance for an outcome that the patient would desire. Decisions to place patients on life support are usually hastened by expectations embellished by the emergent nature of the proceedings. It frequently seems reasonable to buy sufficient time to see if the disease will respond to aggressive treatment by instituting the most invasive life support technology. If, however, organ system failure is not reversible, the reasoning behind life support technology becomes moot, and they serve no further useful function. We must then be prepared to remove supportive technology when it appears in our best judgment that inevitable death is being prolonged rather than meaningful life.

The courts have repeatedly affirmed competent a patient's authority to regulate their medical treatment, regardless of their reasoning. However, when the patient becomes incapacitated, family surrogates are granted virtually unlimited power to dictate treatment options because of their proximate knowledge of what the patient would have wanted before they became incompetent. This position is based on the postulation that any attempt to interject physician paternalism into the surrogate decision making equation is ethically unacceptable. Rational patients and their families are only rarely willing to continue life support after a reasonable trial has demonstrated their benefit has passed the point of diminishing returns. However, we are beginning to see a trend of family surrogates increasingly demanding moribund patients be kept on futile life support after prevailing medical opinions concur that there is no chance of reanimation.

In the best of circumstances, families of moribund patients have difficulty making critical decisions regarding life support systems based on the complex information necessary to assimilate and comprehend. Families frequently cannot understand the qualitative difference between allowing patients to die of untreatable disease processes and hastening death by some therapeutic or anti-therapeutic maneuver. Life support technology can give the appearance of viability when, in reality, there is none once the machines are removed. Under the current rules, surrogates do not have to proffer any reasoning or rationale for demanding futile life support. Some families feel that if life support systems can maintain vital signs for a day or a week, "suspended animation" should be possible indefinitely. These opinions are frequently supported by anecdotal articles in the popular press attesting to patients who have awakened after years of coma. The only test of utility is: "will this treatment result in sustained life?" If the answer is yes, virtually any treatment is fair game, even if it will do nothing to revitalize the patient.

A line of reasoning stating: "we don't want grandma to actually die because we find it emotionally disquieting, therefore, we are willing to allow the taxpayers to alleviate our suffering by avoiding the moment of truth indefinitely," is perfectly acceptable under the current health care system. Like tort liability laws, there is simply a strong incentive to give the great lottery wheel a spin and try your luck. If you lose, you get nothing but you don't lose anything either. If you win, your moribund relative gets a free ICU nursing home. If they (or the patient) desire it, that seems to be good enough reason for taxpayers to support it. Maintaining a moribund patient on mechanical ventilation in an ICU setting can be phenomenally expensive, as much as $2000.00 per day. Under Medicare law, it is illegal for families to be billed for any of this care. Therefore, since they don't have to assume any financial responsibility, families have little incentive to authorize withdrawal as long as the patient does not look uncomfortable and there is the slightest possibility of eventual success.

This notion of futility only as an end stage process where vital signs cannot be supported further is proving to be unworkable. Moribund patients supported by life sustaining machinery in an ICU are different from persistently vegetative patients supported by a feeding tube in nursing homes. It is possible to give them a thin veneer of life, but underneath there is only paper mache.' The cost to support them is disproportionally high, and unfairly borne by the tax base. We need a new definition that takes into account realistic assessments of viability under sophisticated life support systems that render a fallacious appearance of viability. Instead of "futile", we need the option of saying "not medically indicated" because under the current futility rules, false expectations are financed by taxpayers. Patients and families have too strong an incentive to use societal resources for their own ends and too little liability if they persist against expert advice. There is no balance of power between these forces and those who have to pay the bill for their decisions. We need to define futility in terms of numbers of organ systems failed, length of time failed and number of life support machines needed to maintain viability. Dismal predictions of future viability for these kinds of patients are very accurate in the peer-reviewed medical literature.

Should a health care system already strapped with exploding costs force physicians to go against their expert judgment when families insist on maintaining prolonged coma for reasons that are defensible only in emotional terms. Unlike most physician-patient relationships, It seems that we cannot exercise any clinical judgment in futility issues if it differs from judgments of the family. If we allow patients and their surrogates unlimited authority, we must accept the inevitable fact that such a decision will use scarce resources to warehouse increasing numbers of warm cadavers. In an economy seeking to maximize use of scarce resources, how far should we support the autonomy of groups who have an incentive to maximize expenditures of others to support their own ends? How much is society willing to pay for unlimited patient autonomy? The traditional case for avoiding paternalism is weakening with increasing numbers of unrealistic relatives taking the bit in their teeth and running amok in a high tech medical playpen, simply because they are told prospectively they have the authority to do so.

Neither faction, physicians nor family, in themselves, should necessarily have an inside track in decisions involving futility. Squabbles at the bedside between physicians and family surrogates over futility issues do not promote global decisions regarding the equitable use of scarce resources. We, as a society, need to get together and craft effective rules for the use of expensive, high technology medical resources. It seems to me that a consensus is a reflection of the communities affected by these ideas getting together and forging a policy that no one may like, but with which everyone can live. That is the nature of political process. The community that has to pay for these decisions should have the power to decide what they are willing to live with from both factions, physicians and family. If we have a consensus of what all agree on, we then have controls on the unrestrained action of all interested parties.

Tube Feeding: Neither New Nor Rare

In fact, food and water have been provided by means of gastrostomy tube for over 100 years [70] and, according to a government report, at least 848,100 people per year receive food by means of a tube in hospitals, nursing homes or in their own homes. [71] A gastrostomy tube, inserted through the abdominal wall directly into the stomach, is a simple surgical procedure that can be performed under local anesthesia. Once inserted, the small incision heals and its presence causes essentially no discomfort to the majority of people. [72] Yet, in the debate over food and fluids, this simple procedure has been described as one which is highly invasive and highly risky.

The 1984 case of Mary Hier had lived in a state hospital for more than fifty-seven years. Elderly and demented, she thought she was the Queen of England. She was not terminally ill. Because of a Zenkers diverticulum in Ms. Hier's pharyngeal esophagus to her stomach, she had received food by means of a gastrostomy tube for many years. When, in an unexplained incident, Ms. Hier's gastrostomy tube became dislodged, the care facility sought to replace the tube.

Although her guardian ad litem argued that nutrition should be differentiated from treatment, the Court declared, "We do not agree that such a distinction should be drawn as a matter of law." [74] The Court noted that the 1983 President's Commission for the Study of Ethical Problems in Medicine had taken the position that "artificial feeding" should be thought of as a "treatment" decision. [75] Additionally the Court found that replacing Ms. Hier's gastrostomy tube would entail a "major medical procedure" that was "highly intrusive" and entailed a "relatively high risk to the patient due to her age." [76] Permission to replace the tube was denied.

Mary Hier's story and her life might have ended there had it not been for the fact that, just as her case was being reported, another story appeared in the same newspaper. It concerned a ninety-four-year-old woman who was doing well following "minor surgery to correct a nutritional problem." The surgery had been performed on an outpatient basis under local anesthesia. The woman's name was Rose Kennedy and the "minor surgery to correct a nutritional problem" was insertion of a gastrostomy tube. [77] For ninety-four-year old Rose Kennedy, matriarch of a rich and powerful family, tube feeding was a mere correction of a nutritional problem. For ninety-two-year-old Mary Hier, poor and mentally ill, it was termed "medical treatment" that was too invasive and risky for a woman of her age.

Last minute intervention by a local physician and an attorney did eventually lead to Mary Hier's tube feeding being provided again, and both Mary Hier and Rose Kennedy lived for many additional years.

The choice of words to describe the method of providing foods and fluids, as illustrated in the case of Mary Hier, depends upon whether the discussion is intended to lead to their being provided or withheld. Manipulative terminology, using the language of treatment rather than care, has also been used to describe not only the tube but also the food itself. For example, referring to food received by tube as "artificially implanted nutrition and hydration" [78] seemed a patent attempt to create the illusion that food and fluids themselves are exotic medical treatment. Yet it seems doubtful that those who contend that food and fluids become "treatment" if taken by tube would tolerate others calling penicillin or milk of magnesia "food" when taken by mouth.

Lunch Trays Bearing Treatment

Whether one agrees or disagrees with what has transpired, the reality is that, by the time of the Cruzan [79] case, the provision of food and fluids by means of a tube was clearly considered to be a form of medical treatment by society at large and by the courts.

However, by the time that Cruzan was decided, some ethicists and and right-to-die advocates had already begun to expand the boundaries of "treatment" once again - this time to include oral feeding as a medical intervention that could be withheld or withdrawn ethically. The spotlight had now shifted from method by which food and fluids were provided to the actual food and fluids, no matter how provided.

It is no longer unusual to observe a dispassionate discussion among ethicists and medical professionals about the withdrawal of oral feeding from frail, elderly or brain damaged, but non-dying patients. Such discussions take place at many conferences, and can also be observed on the Internet. They certainly take place in the clinical setting.

The willingness to extend denial of even spoon feeding was also apparent in the 1988 testimony of Ronald Cranford, M.D., in the Cruzan case. Cranford, an associate physician in neurology at Hennepin County Medical Center in Minneapolis, testified there really is no definition of "artificial" feeding. [80] He said that, if Ms. Cruzan were able to take food orally, he would still consider provision of food in this manner to be "medical treatment." [81]

This 1988 statement, that no definition of "artificial" feeding exists, differed from a position Cranford had held only four years earlier when he differentiated between "artificial" feeding exists, differed from a position Cranford had held only four years earlier when he differentiated between "artificial means" (nasogastric tubes, gastrostomy tubes, hyperalimentation and intravenous lines) and the ability to take food by the "natural route." At that time he specifically stated that "it may be justifiable to consider withdrawal of fluids and nutrition given by an artificial route." [82] However, by the time he testified in 1988, he included spoon feeding in the category of what might be considered "artificial feeding." "There is a legitimate difference of opinion concerning spoon feeding," he said. "It is not fair to say that artificial feeding would only characterize what we call gastrostomy and so forth." [83]

He stated that spoon feeding is denied in cases of like Ms. Cruzan's (where profound brain damage has occurred) because to spoon feed her "would be totally inconsistent" with what was wanted (i.e. death for the patient). [84]

In another 1988, case also involving the denial of food and fluids for a patient who was no longer able to make medical decisions, a physician reasoned that if a patient is in a convalescent care facility, even the patient's normal diet must be prescribed; therefore it is always medical treatment. [85] Thus, in the minds of some, the food on a nursing home patient's tray had now become "treatment" and, as such, could be considered optional.

By 1994, virtually anything that a physician authorizes, prescribes or performs was said by some to fall within the meaning of "treatment." This was evident in testimony given before the Senate Finance Committee by Eric J. Cassell, M.D., of Cornell University Medical College, who stated, "Treatments are not merely technologies or drugs, virtually everything done to or for a sick person is part of the treatment." [86]

The notion that any and all patient care - even the provision of food and fluids taken by mouth - was "treatment" which could be withheld or withdrawn had gained wide acceptance within professional circles. However, the general public was still far from embracing death by starvation and dehydration as a desirable, noble "option" to be sought. The bridge from tolerance of the concept to widespread support for it was still needed if assisted suicide was to gain a foothold.

As far back as 1972, at a conference of the Euthanasia Educational Council, [87] Cassell acknowledged this when, during a discussion of effective ways to commit suicide and assisted suicide, he stated:

"Maybe we ought to accord the right of the suicide [sic] to make it an elegant and noble move. What you're describing is a turn around of society in which death becomes the elegant thing: in which you achieve an age when it's proper for you to die and to get help in your dying, and you arrange for a death that's appropriate to your life, with all the fittings, without pain and the proper pill. [88]

...What seems to me I hear [when people request assisted suicide] is a way to dignify it, making it an honorable thing to do, make it respected by other people. That's a profound change in the structure of society which may well come, but it's going to be a while coming. It's not just the finding of the pill - that can be found. It's the finding of the world in which one would have one's death as one would have one's wedding and a few other things...." [89]

By 1996, the Euthanasia Educational Council (which by now was called Choice in Dying) had begun to list dehydration in a guide to end-of-life options. The organization noted that among the legal ways to end life was to do without food and water: "A tray of food is considered treatment. You have the right to refuse it. A growing body of research indicates voluntary dehydration is not a painful or unpleasant way to die." [90]

"Graceful Death" by Dehydration

The process of dignifying death by starvation or dehydration began in a 1994 article by David Eddy, MD., Ph.D., published in the Journal of the American Medical Association. [91] In it, dehydrating to death was portrayed as a way for an elderly woman - who had no life threatening condition - to end her life "gracefully." Dr. Eddy wrote that his mother was a spunky, self-sufficient widow who had enjoyed an abundant life and who, when ailments made her quality of life no longer acceptable, decided it was time to die. "As a physician's wife, she was used to thinking about life and death and prided herself on being able to deal maturely with the idea of death." [92]

With her son she explored ways to end her life. "Can I stop eating?" she asked. He told her that if she was really intent on dying she could stop drinking too since, "without water, no one, not even the healthiest, can live more than a few days." [93]

On her 85th birthday, Virginia Eddy celebrated with her family at a party with all the trimmings. Then, her son wrote, "She relished her last piece of chocolate, and then stopped eating and drinking." [94] Her son arranged for her to be placed on a self-administered morphine drip to relieve the pain of dehydration. She died six days later.

"This death was not a sad death; it was a happy death," Eddy wrote. "She had done just what she wanted to do, just the way she wanted to do it." According to Eddy, his mother had chosen the time and manner of her death and this had been a positive experience for the entire family: "Although we will miss her greatly, her ability to achieve her death at the 'right time' and in her 'right way' transformed for us what could have been a desolate and crushing loss into a time for joy." [95]

Clearly, this article was intended to significantly influence its readers' attitudes. In fact, the piece was referred to in a report about the impact of medical journal articles on public opinion, clinical-care standards and health care policies. George Lundberg, M.D., who oversees all of the American Medical Association's forty-seven professional journalists, including JAMA, called Eddy's article the "most important article published in the last 50 years." He said, "The openness of the presentation, the competence and compassion, and the method of dying - by withholding food or drink - were all salutary. The argument presented was legal, ethical, moral and loving." Lundberg predicted it would become "a landmark model of dying." [96]

The Hemlock Society's medical director, Richard MacDonald, M.D., who was, at that time, campaigning to legalize assisted suicide in Oregon, jumped on the bandwagon. He wrote, "She [Mrs. Eddy] chose a very rational course, which is the right of every patient - to refuse treatment [i.e. post-birthday meals and beverages] which can extend life but is futile as far as improving the quality of life or curing the diseases contributing to that poor quality." Then, making a pitch for Oregon's Measure 16, MacDonald added that "such a peaceful end to suffering is not often available to someone who doesn't have the good fortune to have a physician for a son, as this patient did." [97]

It was not the method of induced death that was emphasized but rather the "right" to choose how, when, where and why to die - and the right of someone else to "assist" in bringing about that death - that was being promoted. MacDonald and other campaigning for the Oregon initiative were working to extend the "good fortune" of Mrs. Eddy to all Oregonian's by legalizing what would later be termed "comfort care."

Poisonous Prescriptions As "Comfort Care"

The Eddy article was indicative of yet another attitudinal shift - one that now saw intentionally ending life with a doctor's assistance as a graceful exit from life. The right to be free of unwanted treatment had been totally transformed into the right to be free of unwanted life.

It had taken many years, many attempts, many returns to the drawing board, so to speak, and - more than anything else - careful manipulation of language. In November 1994, Oregon, with the passage of Measure 16, became the only state in the history of the nation to approve a proposal permitting physicians to intentionally prescribe lethal overdoses to certain patients. (Because of an on-going legal challenge, [98] Measure 16 has not gone into effect.) As in previous attempts in Washington and California to legalize assisted suicide and euthanasia, proponents had always stated that the purpose of the law was to give a new "right" to patients.

In fact, the major impact of legalizing assisted suicide was not to give rights to those who would be dead, but was to bestow immunity on those who would be instrumental in making them dead. This was acknowledged by Barbara Coombs Lee, Measure 16's chief petitioner, who described the measure, saying, "The [Death with Dignity] act creates a safe harbor in Oregon's assisted suicide laws for an attending physician to provide a prescription for lethal medication...."[99] Lee has been vague in describing how the waters in this "safe harbor" would be navigated.

Asked how patient deaths would actually be brought about, she said that the new law isn't specific since "it would be pretty outlandish to tell physicians what particular mode of care to provide." [100] When questioned about the need to educate physicians regarding assisted suicide, she opined that courses dealing with assisted suicide would eventually be taught in medical schools, saying, "Writing a lethal prescription is one very small aspect of the total care of terminally ill individuals." [101]

Problematic, of course, is the way a prescription for "care" of this type would be labeled. Lee explained that a physician might write something like, "take as needed to control symptoms." [102] Without question, a prescription for this type of "care" would "control symptoms" - permanently. That, however, leads to the difficulty about how the outcome of this "care" would be described.

Almost immediately, after Measure 16's passage, rhetorical gymnastics reached Olympian proportions as attempts were made to come up with a label for the new death-producing medical procedure. The problem was, how should deaths in compliance with Measure 16 be categorized, particularly on death certificates? If the law survives legal challenges and goes into effect, such deaths can't be called "suicides" because Measure 16 prohibits suicide and assisted suicide. [103] Lee claimed that the word "suicide" would not apply and asked that deaths resulting from the legal drug overdose be called "self-administration under Measure 16," [104] while the Oregon Health Division recommended that the cause of death be designated "drug overdose, legally prescribed." [105]

As far as categorizing the deadly practice for purposes of payment, Oregon's Medicaid director, Jean Thorne, said the procedure would be covered under a part of the Oregon Health Plan called "comfort care." [106]

Terminology Matters

As Oregonian reporter Mark O'Keefe observed, "One thing is certain. Terminology matters. If it did not, politicians would not call tax increases 'revenue enhancements.' Corporations firing thousands of employees would not describe the act as a 'work-force adjustment.' [107] And a group that provides suicide assistance would not call itself "Compassion in Dying." (During the first 13 months of its operation, before it brought a court challenge to Washington's law prohibiting assisted suicide, Compassion in Dying counseled 24 patients who committed suicide with prescription drugs. Since then it has refused to divulge the number of deaths with which it has been involved.) [108]

Compassion in Dying grew out of the Hemlock Society's failed 1991 attempt to pass an "aid-in-dying" initiative in Washington State. Until recently the group was headed by Ralph Mero, who had previously served as executive director of Hemlock of Washington State. (In the summer of 1996, Barbara Coombs Lee, Measure 16's chief petitioner, left her position as a vice president for a large Oregon managed care program and took over the helm of Compassion in Dying.)

As the first U.S. group to admit publicly to offering assistance in committing suicide, [109] this Hemlock spin-off received a gigantic boost in achieving one of Hemlock's objectives - the right to decide the manner and means of death [110] - when Judge Stephen Reinhardt wrote that there is a constitutionally-protected liberty interest in determining the "time and manner" of death. [111]

The Compassion in Dying opinion presents a stark picture of the progress that has been made toward accomplishing the euthanasia agenda by distorting legal precedent, misrepresenting philosophical principles, and twisting the meaning of words. For example, contrary to Judge Reinhardt's opinion, Cruzan [112] did not recognize a "liberty interesting in hastening one's own death." [113] It had, as its underlying rationale, the right to be free of bodily invasion, not the right to be free of life. Similarly, Judge Reinhardt's contention that the principle of double effect permits a doctor to intentionally "assist" a patient "to die through medical treatment" [114] completely disregards that principle's elements. [115] Judge Reinhardt not only gave a judicial approval to the intentional termination of a patient's life, he did so in a style previously reserved by the most outspoken euthanasia activists - placing the labels "medical treatment" [116] or "medical function" on actions that have death as their "necessary and inevitable consequence...." [117]

For a number of years, Jack Kevorkian has been carrying out actions that have death as their inevitable consequence. Like Judge Reinhardt, he refers to such acts as medical treatment. [118] By mid-August 1996, when the body count from Kevorian's "treatment" had reached thirty-eight "patients," Linda Emanuel, vice president of ethics for the American Medical Association, remarked, "The bizarre has become normal and the ghastly is no longer seen as ghastly." [119]

Judge Reinhardt has given the ghastly a judicial seal of approval.

Conclusion

The success or failure of political or social revolutions often depends on the terms used in the debate. If the movement is in accord with accepted values as expressed by language, success is often the result.

But what if the existing lexicon and traditional understanding of words and phrases hurt the cause and bog down the movement? The answer is simple: If the people don't want to follow where you want to take them, make the destination appear more attractive. This is precisely what proponents of the "right to die" have done. By using fuzzy euphemisms, by blurring vital distinctions, by using imprecise phraseology, and by redefining well-understood concepts and ethical principles, they created an Alice Through the Looking Glass World, where previously understood concepts no longer apply. It's as if "up" were now "down" and "hot" were now "cold." Words only mean what the speaker intends them to mean, regardless of the understanding of the listener.

Terms like "killing" and "suicide" which have precise definitions but negative connotations have become outcasts, replaced by subjective, feel-good, meaningless phrases such as "gentle landing," "deliverance," "chosen death," or the ubiquitous "death with dignity." Thus the ongoing revolution in ethics and values was preceded by a radical shift in the use of language, all intended to beckon us to embark on a journey to radical social change.

That direction may or may not be where we, as a society, will want to go. But one thing is certain. We need to use clear definitions and accurate terminology if we are to truly understand what awaits us at the end of that road.

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