Of Living Wills and Butterfly Ballots

Nancy Valko
Reproduced with Permission

Who can forget the infamous "butterfly ballot"? In the presidential election (2000), there were allegations that the butterfly ballot -- one with candidates on both sides of the ballot and arrows pointing to the appropriate hole to be punched -- confused elderly Florida voters into voting for the wrong candidate and thus gave Governor Bush the election.

But in terms of potential confusion -- for young and old alike -- the butterfly ballot has nothing on the "living will". While confusion about ballots is terrible, confusion about matters like the "living will" can be lethal. For example, earlier this year, I received a call from a woman concerned about her 100-year-old mother, who was living in a nursing home. "Joyce" worried that her mother, "Alice", wasn't receiving adequate medical care and food. She cited an instance where she wanted her mother be taken to the hospital for treatment of pneumonia and dehydration.

The problem was that the elderly woman had signed a "living will" eight years before, and listed her son rather than her daughter as the person to make medical decisions. And, according to the daughter who called me, the son was reluctant to authorize any more treatment for his mother because he felt it was time for her to die. Alice, the mom, was now frail and needed help with eating and bathing but was conscious, though usually confused. In cases like this, nursing homes and other institutions rely on the "living will" and other advance directives as the ultimate legal arbiter. The daughter now had no say in her mother's treatment and was even threatened with being barred from seeing her.

Is this what Alice envisioned when she signed her "living will" and, in effect, "voted" for non-treatment?

History of the "Living Will"

Very few people signing "living wills" and other advance directives have any idea of how such documents became a universal aspect of health care today.

In the early 1970s when I was a young nurse, we had never heard of the "living will". When a patient was confused or comatose and appeared to be dying, we discussed such possibilities as "do not resuscitate" (DNR) orders with families. Often, aggressive or useless treatments were discouraged because such measures were considered futile or excessively burdensome in that situation. But one thing we didn't do was offer to withhold or withdraw treatments like antibiotics or feedings to cause or hasten the patient's death

This all began to change with the advent of the "living will" and the increasing acceptance of the newly discovered "right to die".

Actually, the "living will" was originally invented in 1967 by two groups, the Euthanasia Society of America and Euthanasia Education Council, and was touted as a first step in gaining public acceptance of euthanasia. These groups had been struggling for years to get "mercy-killing" bills (which would allow doctors to give disabled or dying patients lethal overdoses) passed in various state legislatures. The "living will" opened up the new strategy of an incremental approach.

Along with the "living will", these groups also made strategic name changes: The Euthanasia Society of America changed into the Society for the Right to Die and the Euthanasia Educational Council became Concern for Dying. In the 1990s, the groups formally merged and are now known simply as Choice in Dying.

The first "living wills" were simple declarations such as "If I should have a terminal illness and I am unable to make medical decisions, I direct my attending physician to withhold or withdraw medical treatment that prolongs the dying process and is not necessary to my comfort or to alleviate my pain". Horror stories about doctors overtreating dying patients -- which sometimes happens -- led people to believe that the "living will" was a necessity. California became the first state to legalize the "living will" in 1976, as the California Natural Death Act. Eventually all other states followed suit. But there were some concerns.

In Missouri, pro-life advocates noted the beginning of court cases involving the removal feeding tubes from non-dying, brain-injured people now called "vegetative" and they feared the "living will" would allow such passive euthanasia. "Right to die" advocates in Missouri disavowed this and, to ensure passage of the pending "living will" bill, a provision was added that food and water were among the kinds of care and treatment that could not be withdrawn. That provision was short-lived.

Euthanasia advocates soon bemoaned the "limitations" of the "living will" and proposed a new document called the "durable powers of attorney for health care" (DPA). This new kind of "living will" allowed another person, usually a relative or friend, to be named to make all health care decisions whenever a person was mentally incapacitated. It also usually added the newly invented term "permanent vegetative state" and a checklist of the types of treatment to be automatically refused.

In response, states like Missouri and New York passed "safeguards" to ensure that feeding tubes could not be removed without "clear and convincing" evidence that the person would have wanted feedings removed if in a "vegetative" state. This was about more than just the "vegetative" state. It allowed the "right to die" position to morph from one where the issue was allowing dying people a natural death to one where choice and legalities were the primary issues, whatever the patient's condition.

This set the stage for the Nancy Cruzan feeding tube case in Missouri, which gave the biggest boost yet to the "right to die" agenda.

Nancy's parents, with the help of "right to die" advocates, petitioned a local judge for permission to withdraw Nancy's feeding tube despite the lack of "clear and convincing" evidence that this is what she would have wanted. This case of a woman said to be in a "vegetative" state for seven years gained national notoriety, and eventually reached the US Supreme Court, which upheld Missouri's "clear and convincing" standard.

But public sympathy for Nancy's parents was enormous and the case went back to the local judge who first ruled that the feeding tube could be removed. Three of Nancy's former friends then came forward to testify that, about ten years previously, Nancy had seemed to agree with statements about not wanting to live in an incapacitated state. The judge determined that these statements met the "clear and convincing" standard and Nancy died twelve long days after her feedings were stopped.

In reaction to the Cruzan decision, the US Congress enabled the Patient Self-Determination Act (PSDA) to be enacted in 1991. Proposed by Missouri Senator John Danforth and New York Senator Daniel Patrick Moynihan, the PSDA mandated that all patients be offered information and documents on their right to refuse treatment and thus prevent another Cruzan case. Hospitals were threatened with loss of federal funding if they did not comply. Despite this, "right to die" advocates were disappointed that relatively few prospective patients actually sign a "living will" or other advance directives. But they were heartened by the media and public acceptance of the "right to die", which made withdrawal of treatment decisions common, whether or not a "living will" was signed. "Right to die" advocates then set their sights on "physician-assisted suicide", using the Nancy Cruzan case to make their case that, since death was the goal of withdrawing feedings from the "vegetative", a constitutional "right to die" should allow lethal overdoses for conscious, terminally ill persons. The US Supreme Court didn't buy this argument, but opened the door for states to "experiment". Oregon passed the first assisted suicide law in 1994 (in effect in 1997).

Now, the "right to die" mentality has so thoroughly permeated health care that even Catholic medical ethics committees discuss "futility guidelines", designed to overrule families or patients who want care continued when a patient is deemed to have a poor quality of life. Some prominent ethicists now recommend rationing health care and denying many routine medical treatments to patients over a certain age. "Living wills" are often interpreted by doctors and nurses as meaning the patient would rather die than live with a significant disability. Families are encouraged to make non-treatment decisions as soon as possible after illnesses such as strokes and asked "would your mom really want to live like this?" Coupled with the current cost-containment mania in health care, the "right to die" is fast becoming the "duty to die".

Alice's "Living Will"

As a nurse, I have seen all types of "living wills" over the years. Some are very long and full of legalese. Some are short and vague. One-hundred-year-old Alice's "living will" is typical of many offered today -- even in Catholic health care facilities -- and contains both a "living will" and a kind of DPA. Alice's "living will", when examined, shows how such documents can cause more problems and confusion than they claim to "solve".

The first page contains the usual terminology about "an incurable injury, disease or illness certified to be a terminal condition ... where the application of life-sustaining procedures would serve only to artificially prolong the dying process and I am unable to participate in decisions regarding my medical treatment, I direct that such procedures be withheld or withdrawn".

Unfortunately, while Alice may have envisioned a coma-like state and a condition such as cancer, the reality is that such conditions as a severe stroke or Alzheimer's are often considered terminal conditions even though the person can live for a long time afterwards. And the "inability to participate in making decisions" can be temporary or permanent and even include conscious states such as simple confusion.

On the second page of Alice's document, as usual, there is the instruction that "if there is a statement below with which you do not agree, draw a line through it and add your initials." (Try adding this instruction to a voting ballot in Florida and hear the howls of "confusing" and "unfair".)

Alice's document goes on to say that it is "the final expression of my legal right to refuse medical or surgical treatment and accept the consequences of such refusal". This exempts the doctor from any legal risk regarding withholding or withdrawing treatment but, ironically, has led to lawsuits where a doctor does provide treatment and the patient survives but is debilitated. Many health care professionals now feel that the safest course when a patient has a "living will" is "if in doubt, do not treat".

The second page of Alice's document expands the terminal condition to "a condition, disease or injury without hope of significant recovery, or extreme mental deterioration or other (fill in the blank)". The document goes on: "Life-sustaining procedures I choose to have withheld or withdrawn include: surgery, heart-lung resuscitation (CPR), antibiotics, mechanical ventilator (respirator), tube feeding (food and water delivered through a tube in the vein, nose or stomach), and other (fill in the blank)" and "a meaningful quality of life means to me that: (fill in the blank)".

The document also conveniently provides permission for organ donation.

Alice, like most people signing such a document, did not cross off anything or fill in the blanks. This left Alice vulnerable to such possibilities as the denial of simple antibiotics if she contracted pneumonia or the withholding of surgery if she fractured her hip. And terms like "significant recovery", "extreme mental deterioration" and "meaningful life" have no real medical meaning and are thus open to various interpretations by doctors or families. Unlike consent forms, "living wills" and other advance directives are not used to inform people about the risks and benefits before treatment in a particular situation. Instead, they are used to cover refusal of treatment in an unknown future situation, which can lead to unintended consequences.

For example, in 1988 my own mother was fully conscious but in a moderate stage of Alzheimer's disease when a growth was discovered in her throat. Surgery was performed and the doctor informed us that the growth was an incurable cancer wrapped around her windpipe. During surgery, he performed a tracheostomy, a hole in her throat. My family was aghast at this and when the doctor started talking about chemotherapy and radiation, they drove him from the room. They assumed the doctor was trying to prolong Mom's dying. And, indeed, if my Mom had signed a "living will" like Alice's, she would have felt comfortable checking off surgery, chemotherapy and radiation as death-prolonging treatment to be refused.

What my family didn't know was that the tracheostomy was performed to prevent future suffocation as the tumor grew. The chemo and radiation were proposed as palliative therapy, hopefully to prevent or minimize the pain as the cancer grew in that sensitive area.

After the dust settled, I explained all this to my father who then authorized the treatments. Mom tolerated them well and, although no guarantees were made, she didn't even need a Tylenol for pain at the end. Three months after the surgery she died as predicted and just the way she wanted -- peacefully in her sleep. I shudder to think what might have happened if Mom had a "living will" and no one to explain options.

Resisting the new "death ethics"

Even Catholic hospitals and nursing homes now offer the kind of "living will" Alice had and, sadly, most people falsely assume that such directives are automatically compatible with Church teaching.

While it has always been true that futile or excessively burdensome treatment or care can morally be refused, the Church has long condemned causing or hastening death, whether by omission or commission.

In 1998, Pope John II said that "a great teaching effort is needed to clarify the substantive moral difference between discontinuing medical procedures that may be burdensome, dangerous, or disproportionate to the expected outcome [what the Catechism of the Catholic Church calls "the refusal of 'over-zealous' treatment" (2278); cf Evangelium Vitae, 65] and taking away the ordinary means of preserving life, such as feeding, hydration, and normal medical care". Unfortunately, some Catholic ethicists have influenced Catholic health care facilities to follow the secular, "right to die" ethic instead.

Groups like National Right to Life, American Life League and the International Anti-Euthanasia Task Force have developed more protective documents like the "Will to Live" and "Loving Will", to address many of the problems in the standard "living will" or other advance directives. These documents can be useful, especially when family members disagree about ethical options, but they are not usually available at hospitals and nursing homes. The documents can be obtained by contacting the organizations themselves (see below) or sometimes through pro-life organizations. An excellent discussion of ethical healthcare decisions can be found in Father Edward Richard's article, "Bioethical Magisterium on Normal Treatment and Ordinary Care", in the June 2000 issue of Voices (available on our web site, see "About Medicine and Morality" page).

However, no "living will" is risk-free and even refusing to sign a "living will" is no guarantee that the "right to die" will not be exercised for you despite your wishes.

The best defense now is to have a loving relative or friend who is informed about ethical options and who can legally speak for you if you cannot because of illness or injury. It is also crucial that you choose a doctor without a "right to die" bias, preferably one with a good understanding of traditional ethical principles.

As a former hospice nurse and current ICU nurse, I can attest that there is a very real difference between allowing natural death and hastening or causing a person's death.

The Culture of Death spawned the "living will" and it has been very successful in seducing society to increasingly ignore this difference, even to the point of accepting assisted suicide. We continue down this slippery slope at our own peril.

Organizations promoting protective health care documents:

1. American Life League, PO Box 1350, Stafford, VA, 22555. Ph: 866-538-5483, Website: http://www.all.org

2. International Anti-Euthanasia Task Force, P.O.Box 760, Steubenville, OH 43952. Ph: 740-282-3810, Website: http://www.iaetf.org

3. National Right to Life Committee, 419 7th St. NW, Suite 500 Washington, DC, 20004. Ph: 202-626-8800, Website: http://www.nrlc.org


1. "Time for a Formalized Medical Futility Policy" by Rev. Peter A. Clark, SI, PhD, & Catherine M. Mikus, Esq., Health Progress, July-August, 2000.

2. "Pope Tells American Bishops: Fight Death Culture" EWTN news, October 2, 1998. Includes full text of "ad limina" address delivered by Pope John Paul II in Rome to the bishops of California, Nevada, and Hawaii.