Responses - Declarations / DPA / Advance Directives / Talking Points

The Living Will – Expansion or Erosion of Patients' Rights?

BACKGROUND
 Not long ago, the concept of legalized assisted suicide, or lethal overdoses or injections for sick or handicapped people would have been considered outrageous and obscene, reminiscent of the ugly time earlier in this century in which medicine ran amok and society pledged “never again.”  Court-approved starvation of persons who are severely brain-damaged would have been utterly unthinkable.  Any suggestion that we balance the budget at the expense of hurrying death for vulnerable people would have sparked outrage from all but the most heartless fiscal conservative or elitist bigot.

Yet today, each of these concepts has gained some social acceptability – and in many circles, respectability.  To a great extent, the question is no longer whether euthanasia ought to be permitted, but under what “very limited,” “carefully controlled” circumstances it should be permitted.

* Since the 1980’s, dozens of courts have authorized withholding life-sustaining food and fluids from severely handicapped persons who were not dying.  Each of these cases has further eroded protections for the rights and lives of medically vulnerable people.

* In 1990, the United States Supreme Court ruled on its first euthanasia case, that of Nancy Cruzan, a Missouri woman who was severely brain injured but was not dying.  Ms. Cruzan depended upon others for help with basic care and feeding (she had a feeding tube), but did not require any “heroic” life-sustaining measures. 

According to court records, Ms. Cruzan could see, hear, and respond to ordinary pain (such as menstrual cramps).  She smiled at amusing stories and wept when her visitors left.   
 

 

Before her feeding tube was put into place, she was eating solid foods (link sausage, mashed potatoes, scrambled eggs) by mouth and drinking a glass of juice with each meal.  The feeding tube was inserted primarily for the convenience of the nursing staff.

In the Cruzan case, the Court affirmed the right of states to require “clear and convincing evidence” that a patient would want life-sustaining treatment and care, including food and fluids, discontinued.  However, by failing to recognize the state’s duty (not to mention society’s responsibility) to protect persons with severe handicaps, the situation now exists where a profoundly disabled person may be protected in one state, yet subject to the ultimate bias – death by dehydration and starvation – in a neighboring state.

Nancy Cruzan’s case was then returned to a lower court which, on the basis of a verbal statement reportedly made years earlier, ruled that Nancy could be starved and dehydrated to death.  The feeding tube was clamped and she died after 12 days without food or water.

 * The withholding or withdrawal of what used to be considered routine, necessary and available medical treatment and care (including food and water) with the intent to hasten death is preparing the way for the legalization of lethal injections or suicide prescriptions.  After all, it is argued, once the decision is made to dehydrate a person to death – a process long and painful to suffer (and ugly to watch) – it would surely be more “merciful,” more “compassionate” (and certainly ore practical) to speed the process with a quick fatal injection.  (Just this argument was raised in the 1987 Colorado case of Hector Rodas, who was disabled.)

 * In 1990, Dr. Jack Kevorkian, an unemployed pathologist from Michigan, used his “self execution device” to kill 54-year old Janet Adkins, who had early Alzheimer’s disease, in the back of his rusty Volkswagen van.  Since then, he has engineered the deaths of twenty four more people, most of them middle aged and not terminally ill by conventional definition.  Dr. Kevorkian, who captures the essence of euthanasia movements past and present, has skillfully employed the media to advance his crusade for “aid-in-dying.”  Each time he strikes, he is on the national television, while his lawyer romances the press.

 * Final Exit, a book offering explicit directions on how to kill oneself (or kill someone else and avoid detection) was, for a short time, a highly publicized bestseller.  Several deaths, including those of children, have been directly attributed to this “recipe book” for death.

 * In November, 1994, Oregon became the first jurisdiction in the world to legalize euthanasia.  By a slim margin, voters approved the Oregon Death with Dignity Act,” permitting physicians to prescribe lethal agents for patients.  Even while the measure is temporarily derailed in a Federal Court, questions are surfacing:  Will the law’s so-called “safeguards” prove meaningless, as they have in Holland where euthanasia is widely practiced – and widely abused – in a quasi-legal arrangement?  Will those who are vulnerable because of emotional or physical impairments be manipulated into “choosing” death?  Will Medicare or Medicaid be forced to pay for suicide assistance in the name of “comfort care?”  Will “suicide clinics” pop up?…

 * More than a dozen states have considered or are considering bills to legalize “aid in dying.”  “Aid-in-dying,” a calming euphemism for what is currently first degree murder, would permit doctors to write suicide prescriptions or to directly kill patients.

HISTORY
 Pro-euthanasia societies are alive and growing in America today, both in numbers and influence.  Organizations with primary or special interest in promoting euthanasia include the Society for the Right to Die (formerly, the Euthanasia Society of America) and Concern for Dying (previously the Euthanasia Education Fund, then the Euthanasia Educational Council), which merged in 1990 to become Choice in Dying; The Hemlock Society and its offshoot, Americans Against Human Suffering.  These organizations operate under the international umbrella, the World Federation of Societies for the Right to Die.

Most Americans are unaware of the deep eugenic roots of the American euthanasia movement.  More than a half-century ago, the Euthanasia Society of America proposed legislation to legalize “voluntary” euthanasia – but it was clearly stated that the society hoped “eventually to legalize the putting to death of non-volunteers,” since euthanasia was “needed mainly for defectives” [New York Times, January 27, 1938].

Today, the influence of these organizations is clearly evident in courtrooms and legi

slatures, in the fields of medicine, ethics, religion and law, and in the media.  Children in elementary and high school classrooms study euthanasia and death-related issues in classes as varied as Sociology, Are (“design your tombstone”), English (“write your own obituary”) and Death Education (where some students are encouraged to become “comfortable” with death by climbing into caskets.)

Euthanasia advocates have always had one primary goal:  to achieve social and legal acceptance of “total self-determination in dying.”  This includes the “right” to suicide, to refuse ordinary means and even to have the doctor give what they euphemistically call “aid in dying” – a fatal injection.  They claim all individuals (of any age, not necessarily terminally ill or dying) should have the “freedom to choose” the time, place, means and circumstances of their death – “autonomy” without limits.  For those who are unable to participate in their own “medical treatment decisions,” others [surrogates] will, no doubt, decide.  This is often referred to as “substituted judgment” or “proxy decision making.”  The legal mechanics for this are already in place.

LIVING WILL AS CORNERSTONE OF EUTHANASIA

The document known as the living will, more than any other single factor, has influenced attitudes and advanced the cause of euthanasia.  It was developed in 1967 for the Euthanasia Society of America by Luis Kutner.

Gradually, magazines, newspapers, trade and scholarly journals, television and radio were calling for the living will.  The greatest boost to the concept came, however, when syndicated advice columnist Abigail Van Buren embraced living wills and the “right” to die as her most important cause.  (“Dear Abby” was a member of the advisory board of the Euthanasia Educational Council for a number of years; her work was warmly acknowledged at the 1988 conference of the World Federation of Societies for the Right to Die.)

By skillfully using the media, creating a climate of prejudice and fear, and promoting half-truths, advocates of euthanasia persuaded legislators and the public that legalized living wills are necessary.

 * Today, every state legally recognizes advance directives. (“Advance directives” are oral or written statements made in advance of need regarding preferences for medical care.  In the written form, this can be a “living will,” Durable Power of Attorney for Health Care [“proxy”], or a combination of the two.)

 * The Patient Self-Determination Act of 1990 (which is discussed later) requires that health care providers which participate in Medicare or Medicaid must provide every patient, upon admission, an opportunity to sign an advance directive.

 * Promoters of “aid-in-dying”admit that living wills are the first, necessary step.  Attempts to legalize “aid-in-dying” – measures built on existing living will laws – have failed in Hawaii, California, Washington, New Hampshire, Texas, Iowa, Wisconsin, Michigan, Main, New York, Maryland, Massachusetts and New Jersey.  Similar efforts are planned for every state.

Living wills are deceptively named – they have little to do with living and everything to do with dying.  They are, more accurately, death contracts.

Clarification On “Heroic” Or “Extraordinary” Measures
A chronically ill, disabled or dying person, like any human individual, has the right to compassionate humane and medically indicated treatment and care, in order to live with dignity until the moment of natural death.  For many, a time comes when it is recognized that nothing more can be done to heal; but much still can be done to comfort.  The focus of palliative care is to relieve pain and suffering, rather than to cure.

Fear of pain and helplessness is very natural.  Hospice care recognizes this, and offers loving, skilled, compassionate and common-sense care of the dying.  In its pure form, the hospice concept addresses body, mind and soul, meeting physical, emotional, social and spiritual needs.  We all owe a great debt to gratitude to Dame Cecily Saunders and Richard Lamerton, M.D. of the British hospice movement for teaching us how to help dying persons to live well while dying, and for their pioneering work in pain control.

However, euthanasia advocates, as part of their concerted efforts to confuse and frighten the public, imply that modern medicine is capable of prolonging the dying process interminably and that patients will be “hooked up” and “plugged in” against their wills (perhaps long after rigor mortis sets in!) if they have not signed legally-binding advance directives.

It is crucial to understand: there is no law, medical group, church nor anti-euthanasia organization which insists on unnecessary, useless, heroic or unduly burdensome measures to keep a dying person alive.

LIVING WILLS:  LANGUAGE

Studies show that most living wills and Durable Powers of Attorney for Health Care (DPAHC) require reading skills at an advanced college level; even well educated patients may find it difficult to understand the terms, conditions and implications.

By its very nature, a living will must be so elastic it stretches to include any and every situation.  But each patient’s actual situation (physical, family, mental, emotional and spiritual) is different.  This one-size-fits-all rubber band can work in two ways:  it will bind so tightly that it will strangle communication and common sense (and tie the hands of health care professionals), or it will stretch so far it will snap back in the faces of vulnerable patients and their families.

Living wills depend on vague, confusing and deceptive terminology.  Definitions are open to broad interpretation – or mis-interpretation.  (Winston Churchill’s phrase “terminological inexactitude” is appropriate!)

All living wills, regardless of state of source, say something like this: “To my family, my physician, my clergyman, my lawyer:  If the time comes when I can no longer participate in my health care decisions, and I have an incurable condition with no reasonable hope of recovery, and my death is imminent, don’t use heroic or artificial means to prolong my life.”

Sounds pretty safe, doesn’t it?  But let’s carefully compare what this seems to mean to what words and phrases in a living will or DPAHC could actually be interpreted to mean….

 * “To my family, physician, clergyman, and lawyer.”   (Let’s hope that the signer has a loving family, physician, clergyman and lawyer.)  Actually, few people have the old-fashioned family doctor today – most have an HMO [health maintenance organization], group health plan or clinic.  Indeed, in the course of a 24-hour period in a hospital, one may have three attending physicians plus a bevy of residents and specialists – people without any detailed knowledge of you or what your religious and moral beliefs are.

 * “No longer able to participate in medical treatment decisions” could include patients affected by medication, overwhelmed or depressed by problems, “pleasantly senile,” temporarily unconscious, comatose, suffering from Alzheimer’s – or, as one lady told m, what the hospital considered her husband to be because he had lost so much weight from cancer that his dentures didn’t fit,  he spoke with a very heavy German accent, and the nurses couldn’t understand him!  (No law requires the patients or their families be notified of a living will going into effect.)

 * “Incurable or irreversible condition” could include asthma, diabetes, arterioslerosis, cerebral palsy, problems caused by heart or stroke, etc. – many of which can be controlled, though not cured. Some versions make reference to a “terminal condition”, defined as any condition that, with or without treatment, will cause death. This could include almost anything.

 * “No reasonable hope for recovery.”  What’s reasonable? What is unreasonable in 1996 or 1998 when a document is signed could be very reasonable in 1999 when the document may come into effect.  What is unreasonable in a small community hospital could be very reasonable in a metropolitan medical center or teaching hospital.

What is recovery?  Remember: “prognosis is the most fallible of the medical arts.”  Many of us know someone whose condition was once called “hopeless,” but who recovered (perhaps even to outlive the doctor!)  After a serious injury or illness or even in the normal process of aging, do we ever completely “recover” to what we once were?  Does recovery imply a return to the full empowerment of the best of youth – or age 30, or 50?  Many people have thought, “I’d never want to live like that” – but, after suffering a stroke or heart attack or cancer or disability, live and rejoice in each day to the fullest.
 
“Terminally Ill” Or “Imminent” Death?

“When death is imminent” does not necessarily mean those last minutes or hours when loved ones are called to the bedside.  In legal and medical terms, this has been interpreted to mean weeks or months, even years! 

The concepts of terminal and imminent are crucial:

* In 1983, Wisconsin passed a living will law allowing the removal of “life-sustaining procedures” from persons who had a life expectancy of 30 days or less.  Considered too restrictive, the law was amended in 1986 : 30 days was changed to “when death is imminent,” so as to include those with a life expectancy greater than 30 days.

* In 1986, the Supreme Court of the State of Virginia refused to hear an appeal in the case of Hazelton v. Powhatan Nursing Home.  The case marked the first time the word “imminent,” as used in living will laws, was defined by courts.  Harriet Hazelton’s doctors had agreed she could live for months but disagreed whether, with a life expectancy of approximately six months, her death could be considered “imminent.”  The court decided that a death which is expected to occur in months should be considered “imminent.”

*In a 1987 Stanford Law Review article, “Equality for the Elderly:  A Proposal for Dignified Death,” it was explained that death is to be considered “imminent” if the patient’s life expectancy is one year or less.

 *In a 1988 paper titled, “Prolonging Life and the ‘Right to Die’,” Florida “has interpreted ‘imminent’ to mean that death will occur within one year” for the purposes of implementing Florida’s living will law in accord with hospital policy.

 *The United States Veterans Administration [Policy M-2, Part I, Chapter 3l, 1991] defines terminal illness as a “debilitating condition which is medically incurable…and which can be expected to cause death…[and] includes but is not limited to conditions where death is imminent, as well as chronic and debilitating conditions from which there is no reasonable hope of recovery (emphasis added.)”  This wide-open definition could permit the withholding or withdrawal of ordinary treatment from veterans with heart disease, asthma, schizophrenia, arthritis, alcoholism, etc.

“Heroic” Means?

Most living wills warn “don’t use heroic means.”  But remember:  no church, law, medical association, or pro-life or anti-euthanasia group has asserted that unnecessary, heroic, or unduly burdensome measures must be used.

In considering “heroic,” let’s take a moment to consider the level of care offered by, and appropriate to, various institutions.  In a hospital emergency room, critical care unit (CCU) or intensive care unit (ICU) little is heroic.  Every patient admitted there expects – and health professionals are there to provide – whatever it takes to get a patient through a crisis.

The level of care offered will vary with facilities, (Note:  this is level of care, not quality of care at a particular level.)  What is ordinary in an ICU may be unusual in a nursing home, and simply unavailable, impossible or not indicated in hospice or in-home care of a terminal illness.

Ideally, some decisions regarding the proper level of care can be made in advance, based on what is appropriate for an individual patient.  For example, if a home care or nursing home patient is near death (truly imminent) from cancer or heart disease and breathing becomes labored, it may not be appropri

ate to dial 911 for aggressive, emergency care – especially if the patient wanted to die in familiar surroundings without any medical “heroics.”

 * “Don’t artificially prolong my life” and "don’t use life-sustaining procedures” open up vast, gaping holes – holes big enough to drive a hearse through!  The signer may think this means “don’t use CPR or a heart-lung machine or a ventilator when it’s futile and I’m near death”. 

In fact, it could include usual, customary, and easily available things like insulin for a diabetic, heart medication upon which a person is dependent, antibiotics, diuretics – and even food and water.  It could also include suctioning, temperature control, oxygen or other measures which may not cure but will make the patient more comfortable.

Living wills more often add to the legal and ethical confusion than diminish it.

FOOD AND FLUIDS:  THE FIRST STEP TO “AID-IN-DYING”

The increasingly common practice of withholding food and water from persons to hasten their deaths is greasing the skids for “aid-in-dying.”

Many people envision “artificial feeding” as “heroic” pumps, tubes and needles. 

They may not realize how simple and routine assisted feeding can be.

Imagine a baby bottle:  is this a “natural” or “artificial” means of feeding an infant?  Why, it’s artificial of course.  (The natural way is for a baby to nurse at her mother’s breast.) 

No one is suggesting withholding babies’ formula bottles, but the analogy is important:

 * A nasal-gastric tube is a thin, flexible tube inserted in the nostril, a conduit to the stomach.  While there may be some discomfort (nothing compared to the discomfort of dehydration), tube feeding is neither painful nor exceptionally risky.  Nurses learn how to insert NG tubes by practicing on one another; they are widely used in health care facilities.

 * A gastrostomy tube (G-tube) is a bit thicker (like a pencil), and is inserted through a small incision (which heals and scars over) in the abdominal wall.  Some have a bulb or balloon that is inflated just inside the stomach incision to prevent leakage or movement of the tube.  This is neither new nor “high” technology.  An 1896 Kentucky State Medical Society journal shows a photo of a young boy living successfully with a G- tube. Many people who use G-tubes are cared for at home; some have full-time jobs and lead active lives.

A G-tube was provided to Nancy Cruzan (the focus of the U.S. Supreme Court case) – although she was able to chew and swallow on her own and was doing so every day – to make her long term care easier [for others].

With both an NG tube and a G-tube, a thick, milkshake like liquid (like Ensure ®)
is used.  It doesn’t cost any more to feed a patient by tube and, in many cases, less (about $7.20 a day.)

While the tube itself may be artificial, the food that goes into it is natural (or at least as natural as anything most of us have eaten today.)  Liquid diet supplements such as Ensure® are advertised in McCall’s and Family Circle magazines.  Available in grocery stores, they are sometimes referred to as “sport shakes.”  Like regular milkshakes, they come in chocolate, vanilla and strawberry flavors.

Feeding tubes are not comparable to a ventilator, which takes over the functioning of the lungs.  They aren’t an artificial stomach.  The feeding tube is merely a means of providing nutrition – a conduit, like a baby’s bottle or a McDonald’s® drinking straw or a fork.

Most people won’t define food as “medical treatment” – they call it lunch. 

(If food and fluids are medical treatment, why can’t we deduct our grocery bills as medical expenses?)

WITHOLD SPOON FEEDING?

In arguments in the Nancy Cruzan case, Minnesota neurologist Dr. Ronald Cranford, who is considered an expert (proponent) on euthanasia issues, testified that even spoon feeding of someone unable to feed himself can be considered optional medical treatment.

Increasingly, court quests to hurry death involve persons who are less disabled than the previous case.  The Busalacchi case followed on the heels of the Cruzan case.  Christine Busalacchi was not terminally ill; she was not “unconscious;” she wasn’t even sick.  Although brain damaged from a care accident, she could see, hear, smile and laugh, and respond to requests.  She said “hi” to two doctors who examined her, responded to pain and enjoyed TV and ice cream.  Christine was capable of taking her entire nutritional needs by mouth and was, according to court records, taking thee meals a day orally.  Nevertheless, her father – who waged a two year legal battle for her death – insisted that the feeding tube be resumed, presumably because it would appear more “acceptable” to stop feeding by tube than by spoon. 

On March 7, 1993, 22-year old Christine died of cardiac arrest due to imposed dehydration and starvation…

These and too-many other cases make it clear: it is not the method of providing food and fluids which is at issue, but the food and fluids themselves.  Simply put:  are we going to feed those who can not feed themselves?

Except in rare cases where a person is very near death and can no longer assimilate food and fluids, the provision of nutrition and hydration should be considered ordinary care, reflecting a fundamental trust between members of the human family.

Death By Dehydration, Starvation

If water and food are denied to any human being, death will come with certainty – usually within five days to 21 days. 

The following symptoms are likely:
 *The mouth will dry out and become caked or coated with a thick material.  Lips become parched and cracked.

 *The tongue will become swollen and may crack.

 *Cheeks become hollow and eyes sink back into their orbits.

 *The mucosa (lining) of the nose may crack and cause the nose to bleed.  Skin becomes dry and scaly.

 *Urine becomes highly concentrated, causing burning in the bladder.

 *Hyperthermia, a very high body temperature, will develop.

 *Dry heaves, vomiting and convulsions may occur.

 *Eventually, major organs (lungs, heart, brain) fail.

Everyone knows that if we don’t feed a dog or a horse it will die. 

So will an Olympic athlete or a sick granny. 

The goal of the euthanasiasts is death by design:  the planned acceleration of death for those not dying quickly enough, those who are considered by some to be economic, familial or social “burdens”…

Do Not Resuscitate (DNR or “No Code”)

There can be times when a DNR or “no code” order is morally appropriate and medically indicated.  This can be when the outlook for the patient is bleak, when further treatment appears futile, and when death is coming as a friend.  It is a time when we recognize that we can no longer cure, but we pledge to care, providing TLC (“tender loving care”), food and fluids (so long as the body can assimilate them), pain relievers, an appropriate bed, attendance to hygiene, etc.

Before signing a DNR for yourself or a loved one, there are several important factors you should consider:

 * Any decision to chart a DNR (or DNI– do not intubate, or DNH– do not hospitalize) must be made in the best interests of the individual patient – not the family, the health care facility, the insurance company, or society at large

 * All involved parties should agree on what a DNR means:  no cardio-pulmonary resuscitation (CPR) if the heart or breathing stops.  This should not prevent helping a patient who is choking; it should not automatically preclude antibiotics for pneumonia or drugs for other conditions.  While there have been reports that some “coded” patients receive, in general, less immediate attention and/or inadequate help, this should not be the case.

 * It must be the treatment (in this case, CPR) which is judged to be heroic, futile or excessively burdensome, not the patient.

 * Such directives should be periodically reevaluated.  Patients sometimes improve, surviving the crisis which precipitated the order; making it now inappropriate.

Defensive Living Wills?

In the most recent marketing ploy, proponents try to reassure us that, by signing an advance directive, we can also request specifically what we want – even if we want “everything” – along with what we don’t want.

Few people really want “everything” (total aggressive care), and “everything” any not be medically indicated, available, affordable (or reimbursed by insurance) – or even effective.

But more important, this once more puts the burden on the citizen/patient to assess and make medical judgments.

Advance Directives For Cost Containment

Politicians and social planners have learned to avoid “duty to die” talk like the season’s new flu.  Even when refined, price tag arguments are hard to sell, especially to the burgeoning “silver haired lobby.”  So how do number crunchers persuade folks to give up their share of the health care dollar?  By sneaking a living will bill – the Patient Self-Determination Act (PSDA) of 1990 – into the national budget bill at the last minute. 

Nicknamed the “medical Miranda warning,” it was promoted as a measure to “improve communication in health care” and protect each person’s “right to self determination.”  But, like the Pied Piper returning for the old people, advance directives will guide many citizens to certain, but cost effective, premature deaths.
 
NATIONAL LIVING WILL BILL (PSDA)

The PSDA is a pyramid of tyranny:  the federal government putting pressure on health care providers to put pressure on citizens to “voluntarily” relinquish health care.

As of December 1, 1991 – under the threat of losing federal funds – any hospital, nursing home, hospice or HMO which receives Medicare or Medicaid must inform patients of their right to refuse medical treatment and to sign an advance directive (living will or DPAHC.)  The health care provider must document whether or not each patient has a directive.  Providers who are unable to implement a patient’s wishes must transfer care to another provider.

The legislation also requires the Secretary of Health and Human Services to conduct a study to determine how the act is being complied with and to make recommendations for further legislation to carry out purposes of the Act.

It has been estimated that the measure could trim billions of health care dollars – identifying it as the cost containment measure it is.

The PSDA puts the federal government into the position of pushing the programs and agenda of euthanasia societies.  The results may prove to be deadly:

 *It will discriminate especially against the poor who often get medical care only at a time of acute illness or emergency.

 *Many will be unlikely to question
the content or reasons for the document, especially when faced with the numerous forms requiring signatures upon admission.

 *Many elderly persons and others, already vulnerable because of diminished health, isolation, fear, financial or familial pressures, may be coerced by a distorted sense of altruism, feeling they should “get out of the way” and “not be a burden.”

 *The measure forces additional layers of bureaucracy, paperwork and cost on a financially overburdened health care system with no provision for paying that cost.

Already, under DRGs [diagnostic related groups under Medicare], patients are being sent home from hospital “quick, still sick.”  As our aging population increases (and the number of upcoming workers who would support them diminishes), and as millions of people are un- or under-insured while health care costs skyrocket, the problem will not be over-treatment of patients, but a fight to receive necessary, ordinary and available medical treatment and care.

Not long after the national living will bill became law, at least one state introduced legislation requiring even health care facilities which do not receive federal funds to make advance directives available upon admission.

For now, the PSDA requires only that patients be given an opportunity to sign an advance directive.  Some proponents maintain that living wills are necessary for cost and/or population control and should be mandatory, at least for certain groups (welfare recipients, AIDS victims, some residents in nursing homes and veterans’ hospitals, etc.)  At least one state had considered legislation which allows insurance companies to give discounts to people who have living wills.  Given the history and progress of living wills, such incentives to die early may not be far off.

EXPERIENCE SINCE LIVING WILL LEGISLATION

Let’s look at what has happened since living will-type legislation has become common:

 **According to the American Medical Association, only 15% of Americans have filled out some type of advance directive.  (The percentage is lower among health professionals, which should tell us something.)

 **Living wills vary considerably from state to state – in intent and content.

 **Only one state (Mississippi) requires registration of living wills, a practice which tabulates advance directives and might insure patient protection.

 **Litigation has not diminished.

 **Malpractice insurance rates have increased.

 **“Mercy” killings, murder/suicides and double suicides have increased.

 **Protections for those who are medically vulnerable have decreased.

 **Amendments to expand the scope of the legislation have been proposed and/or passed (for example, eliminating requirements for witnesses; lowering age of consent by changing “competent adult” to “person”; putting living will designation on drivers’ licenses; allowing immunity for being only in “substantial compliance.”)  In some states, courts have interpreted legislative provisions in terms beyond original legislative intent.

 **In 1991, the Illinois legislature passed startling legislation which allows family or “friends” to order withholding or withdrawal of “medical treatment” and food and fluids from patients who are “terminally ill,” “permanently comatose,” or suffering from a condition which “imposes severe psychological or physiological pain or discomfort [emphasis added].”  Illinois already recognizes living wills and durable powers of attorney.  Since this bill apparently would allow someone to order death for someone else, even without such directives, one must wonder (again) how vulnerable people can be protected.

 **Amendments have been drafted to expand current living will statutes to include assisted suicide by lethal dose or injection.

 **In 1989, the University of Iowa Law Review published a “Model Aid in Dying Act,” which would allow lethal injections for two groups of people:  Those who had signed living wills and those who hadn’t (the latter being children and incompetents.)  It carefully laid out plans for “aid in dying boards” who would conduct hearings, policies for life insurance companies, and a State registry for specially trained people (called “telostricians”) who would do the killing.  (Dr. Jack Kevorkian refers to such specially trained killers as “obitiatrists.”

Others Note Living Will’s Shortcomings

…No matter what the packaging, problems with terminology remain.  Living wills sabotage the concept of free, informed consent and put the burden (rather than “choice”) on the patient.  Living wills spring not from the need to protect patients, but from drives for (1) immunity for health care providers, (2) cost containment and (3) legalized “aid-in-dying.”

Is There Anything Good About A Living Will?

…Actually, it’s not too early for any of us to think about what we might want if we are unable to care for or speak for ourselves.  It is important to identify those who would be making decisions for us if we can not do so.  These issues can stimulate valuable discussion between family members, helping us to face reality and avoid future conflict.

This is both a valuable and important exercise.

But locking oneself into a detailed, ambivalent, legalized document is unnecessary, counter-productive and dangerous.
 
PRO-LIFE ALTERNATIVES

In the past, it always has been assumed that the next of kin would make decisions in case of emergency for a family member who was no longer able to do so for themselves. (Many people carried wallet identification, “In case of emergency, notify _____________.”)  Now, the law has intervened, creating barriers between the patient and physician, the family and physician, and the patient and family.

In response to the requirements of the national living will law, individuals may feel pressured to sign an advance directive.  Because of this and other developments, two highly respected anti-euthanasia organizations have developed protective documents:

 **The Protective Medical Decisions Document (PMDD) from the International Anti-Euthanasia Task Force (1 ) and

 **The Patient Self-Protection Document (PSPD), from the Center for the Rights of the Terminally Ill. (2)

These are not living wills.  Like a Durable Power of Attorney for Health Care, they enable signer to name a trusted family member or friend as the “agent” to make medical decisions if he/she is unable to do so.  But they differ from other documents in that they:

 * Explicitly define and prohibit euthanasia.

 * Specify that food and water are to be provided unless death is inevitable AND truly imminent so that the effort to sustain life is futile or unless one is unable to assimilate food and fluids.

 * Specify that the signer is to be provided with ordinary nursing and medical care, including pain relief and comfort care.

By necessity, these documents use some of the same terminology that is problematic with living wills.  But, with the protective documents, the designated proxy will be interpreting what the patient meant by those terms.

Unfortunately, the PMDD and PSPD will be protective only for those who already have a person they know and trust to make decisions in accordance with their personal and moral convictions.  It does nothing to protect those who are most vulnerable:  most often the poor, the less educated, the isolated, and those who are already incompetent or incapacitated.

CONCLUSION
 …Modern medicine and technology can alleviate pain, promote healing, extend life and overcome disability – as well as create difficult choices…

The living will, seriously flawed from the start, favors death as a solution to some very real and very serious human problems.  It does not emphasize the individual circumstances and the individual desires that should determine the character of terminal care.  It promotes attitudes that the elderly and infirm are financial and emotional burdens on society.  It removes disability, dying and death from the context of love, life and meaning.  For just as there is meaning in living, so also can be found meaning in adversity, suffering and death…

Rather than seeking to insure the so-called “right to die,” we should be working for the right of all persons to live with dignity, until the moment of natural death.
 
About The Author:
 Mary Senander has followed euthanasia-related issues since 1963 when she wrote a high school term paper on the topic.  It was concern about the euthanasia issue which brought her into the right to life movement in 1969.  In 1985, Mrs. Senander co-founded the International Anti-Euthanasia Task Force.  She currently serves as an advisor to several U.S. and Canadian organizations which work to combat euthanasia and ensure human rights, and remains an active writer, speaker and resource person.

NOTES
(1) The International Anti-Euthanasia Task Force, Protective Medical Decisions Document.  Available from P.O. Box 760, Steubenville, OH 43952.  A donation is requested.
(2)  Center for the Rights of the Terminally Ill, The Patient Self-Protection Document.  Available from P.O. Box 54246, Hurst, TX 76054.  A donation is requested.

[The Living Will – Expansion or Erosion of Patients’ Rights?, 1996, Mary Senander]