and Butterfly Ballots
By Nancy Valko, RN
Who can forget the infamous "butterfly ballot"?
In last year's presidential election, 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
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
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"
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
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
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
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
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
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: www.all.org
2. International Anti-Euthanasia Task Force, P.O.Box 760, Steubenville,
OH 43952. Ph: 740-282-3810, Website: www.iaetf.org
3. National Right to Life Committee, 419 7th St. NW, Suite 500
Washington, DC, 20004. Ph: 202-626-8800, Website: 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.