CHAPTER 2
INVUNERABLE NOTHINGS
Sue Rodriguez and the Supreme Court of Canada
(Ian A. Hunter)
He hath awakened from the dream of life -
'Tis we who lost in stormy visions, keep
With phantoms an unprofitable strife,
And in mad trance, strike with our spirit's knife
Invulnerable nothings.
Percy Bysshe Shelley,
Adonis, XXXIX
In 1980 Canada turned its back on a century of legal history, on its
customs, conventions, and traditions. In that year we abandoned
parliamentary supremacy for constitutional supremacy, emasculated our
legislators and transformed our judges into philosopher-kings. From
that year on we required our citizens to bow, not to Cod, king, or
country, but to a Charter of Rights and Freedoms, born of political
expediency. It is not surprising then that unlikely, even bizarre,
cases, which once would have been summarily dismissed, would come to
govern life-and-death issues. Even so, it still would have required a
percipient observer to guess that the tragic fate of a 42-year-old
British Columbia woman suffering from amyotrophic lateral sclerosis
(Lou Gehrig's disease) would come within a single vote of inducing the
Supreme Court of Canada to create a constitutional right to be put to
death.(1)
Section 241 of the Criminal Code of Canada makes it an indictable
offence to counsel, aid, or abet anyone to commit suicide.(2) Since
1972 attempted suicide has not in itself been a criminal offence in
Canada.(3) Sue Rodriguez had no wish to counsel, aid, or abet anyone
to commit suicide. What then was the basis for her attack on section
241? Simply, she wanted someone to violate that law by assisting her
to die, and she wanted a declaration of judicial immunity in advance.
It is important to note that at no stage in the protracted litigation
did Sue Rodriguez actually wish to die. Rather she wanted to wait
until she was no longer able to enjoy life, at which time, because of
the inexorable physical degeneration that characterizes Lou Gehrig's
disease, self-destruction would be beyond her. What she sought was a
court order that would allow someone, preferably a physician, to
provide the means and to assist her in taking her life at a time of
her choosing. This is what is called "dying with dignity." Fifty years
ago Sue Rodriguez would have sought solace from a priest; 20 years
ago, from a doctor; today, from a lawyer.
Rodriguez's challenge to section 241 of the Criminal Code was based
on three sections of the Charter:
§.7 Everyone has the right to life, liberty and security of the
person and the right not to be deprived thereof except in accordance
with the principles of fundamental justice.
§.12 Everyone has the right not to be subjected to any cruel and
unusual punishment.
§.l5 (1)Every individual is equal before and under the law and has
the right to equal protection and equal benefit of the law without
discrimination and, in particular, without discrimination based on
race, national or ethnic origin, colour, religion, sex, age or mental
or physical disability.
The Supreme Court was unanimous, and uncharacteristically brief, in
rejecting the section 12 challenge. A statutory prohibition on
assisted suicide does not, even in the Alice in Wonderland world of
Charter-speak, amount to compulsory treatment, still less to state
imposition of cruel and unusual punishment.
There was no unanimity, however, on sections 15 and 7.
Only Chief Justice Lamer, dissenting from his eight fellow justices,
held that section 241 contravened section 15. The discrete group or
class of persons (essential to a section 15 analysis) he held to be
those persons suffering from such a serious physical disability that
they are, or will become, unable to commit suicide without
assistance. Is this a burden or disadvantage? Yes, according to the
chief justice, because "it limits the ability of those who are subject
to this inequity to take and act upon fundamental decisions regarding
their lives and persons. For them the principle of self-determination
has been limited. "(4)
Cited, and heavily relied upon by all judges, was the Supreme Court's
earlier abortion decision, R. v. Morgentaler,(5) which had the effect
of legalizing abortion on demand in Canada. It was to be expected,
perhaps, that a court which ceases to regard the unborn as deserving
of legal protection will evince scant moral repugnance at suicide. In
Morgentaler, the Supreme Court dismissed the notion that human beings
are creatures made in the image of a Creator and chose instead to
accept a view of humanity as self-willed, autonomous individuals
making "choices" without regard to "archaic" concepts like good and
evil. Having accepted the "right to choose" abortion, it should
surprise no one that, within a decade, four Supreme Court judges were
prepared to countenance a right to choose suicide.
The secular wasteland in which the Supreme Court struggles to
articulate "values" is perfectly captured in these words of Chief
Justice Lamer:
Can the right to choose at issue here, that is the right to choose
suicide, be described as an advantage of which the appellant is being
deprived? In my opinion, the Court should answer this question without
reference to the philosophical and theological considerations fuelling
the debate on the morality of suicide or euthanasia. It should
consider the question before it from a legal perspective . . . while
keeping in mind that the Charter has established the essentially
secular nature of Canadian society.(6)
Forgotten, or ignored, is the Charter's preamble, which acknowledges
"the supremacy of God" and the first of the "fundamental freedoms"
freedom of religion.(7)
Having found a violation of equality rights, Chief Justice Lamer next considered whether section 241 might be saved under section 1 as a "reasonable limit ... demonstrably justified in a free and democratic society." The legislative objective of section 241 (deterring others from assisting the young, the innocent, the mentally incompetent, or otherwise vulnerable from taking their own lives) is, he conceded, a valid one, but must yield to the more important principle of "self-determination." Can it be said, the chief justice asked rhetorically, that when Parliament removed the prohibition on attempted suicide in 1972 it intended ". . . to acknowledge the primacy of self-determination for physically able people alone?(8) One blushes even to quote such fatuity. One could be forgiven for imagining that Chief Justice Lamer writes here of lottery benefits or government social assistance, rather than self-annihilation. Parliament removed attempted suicide as a criminal offence in 1972 because only the unsuccessful could be prosecuted. To read back the victim-equality obsessions of the ideological '90s to the more innocent '70s is to engage in what Samuel Johnson called "nonsense on stilts."
Chief Justice Lamer next holds that section 241 fails the "minimal
impairment" component of the by now wearisome Oakes(9) test. While
acknowledging a potential for abuse, Chief Justice Lamer insists that
the suicide option must be available to all equally. But, in typical
Canadian fashion, he strives to find a compromise, a "middle ground"
between the absolute prohibition of section 241 and "complete
decriminalization." He propounds an intricate regulatory scheme for
determining when people may lawfully assist other people to kill
themselves. How very Canadian! Yet judges who find a criminal
prohibition on assisted suicide offensive to human liberty would no
doubt uphold a mandatory requirement to wear a bicycle helmet.
All the other judges in Rodriguez rest their decision on section
7. All concur in finding section 241 an infringement of the "security
of the person" guarantee in section 7.
Madam Justice McLachlin's dissent cites Morgentaler as establishing
"the right of each person to make decisions concerning his or her own
body."(10) From this derives "the autonomy interest of those who wish
to end their own lives."(11) I shudder to contemplate the trivial
conception of human life that judges display. No God, no soul, no good
and evil, no right or wrong, just consumers making choices, including
the choice to die. The trick, as both Morgentaler and Rodriguez
demonstrate, is to convert moral issues into consumer choices. "No man
is an island entire of himself," wrote John Donne. "Any man's death
diminishes me because I am involved in mankind."(12) Our judges are
not involved in mankind; they are involved in vapid rights talk.
None of the dissenting judges shows much respect for, or deference
to, Parliament, the assembly we elect periodically to decide what
should and should not be a crime. True, Justice McLachlin cites two
Appeal Court judges who appealed for restraint,(13)but she goes on to
assert that "as a matter of constitutional obligation, a court faced
with a Charter breach may not enjoy the luxury of choosing what it
will and will not decide."(14) This statement is transparent
question-begging. It is precisely on the issue of whether or not the
Charter has been breached that judicial restraint is called for.
The hard edge of reality in Justice Sopinka's majority opinion comes
as a welcome oasis after the aridity of the dissents.
Justice Sopinka begins by noting two practical effects of the
dissents: first, these judges would recognize a constitutional right
to assisted suicide more extensive than any recognized, or even
seriously advocated, in the Western world; second, the safeguards
proposed by Chief Justice Lamer are "vague, and in some respects
unenforceable."(15) Also, "since many in the medical profession are
opposed to being involved in assisting suicide because it is
antithetical to their role as healers of the sick, many doctors will
refuse to assist, leaving open the potential for the growth of a
macabre specialty in this area reminiscent of Doctor Kevorkian and his
suicide machine."(16)
Justice Sopinka accepts that section 241 "impinges upon" the
"security interest" of Sue Rodriguez; but he holds that such
impingement is not contrary to the principles of fundamental
justice. Alone among the Supreme Court judges, Justice Sopinka
considers "sanctity of life" as a principle of fundamental justice,
even referring to "a generally held and deeply rooted belief in our
society that life is sacred and inviolable."(17) He then quickly adds
that he means "sacred in the nonreligious sense," citing Dworkin
A.D. 1993.(18) rather than Moses(19) circa 1500 B.C. as acceptable
authority:
Section 241 (b) has as its purpose the protection of the vulnerable
who might be induced in moments of weakness to commit suicide. This
purpose is grounded in the state interest in protecting life and
reflects the policy of the state that human life should not be
depreciated by allowing life to be taken. This policy finds expression
not only in the provisions of our Criminal Code which prohibit murder
and other violent acts against others notwithstanding the consent of
the victim, but also in the policy against capital punishment and,
until its repeal, attempted suicide. This is not only a policy of the
state, however, but it is part of our fundamental conception of the
sanctity of human life.(20)
Justice Sopinka is the only judge who appears to recognize the
fundamental distinction between active and passive euthanasia. Subject
to considerations of age and competency, a patient may decline even
life-sustaining treatment.(21) A physician may, for palliative
purposes, administer a drug the effect of which may be to hasten the
patient's death. Such situations are distinguishable from active
euthanasia, where a physician assists a patient for the purpose of
bringing about that patient's death. The distinction lies, as it does
so often in the criminal law, in intent. A physician who continues
life-sustaining treatment against a patient's express instruction
commits a battery.(22) The physician who administers drugs designed to
ease pain, even though a side effect is to hasten death, does so with
the intent not of causing death but o reducing suffering. Justice
Sopinka acknowledges that "factually the distinction may, at times, be
difficult to draw," but "legally it is clear."(23)
Justice Sopinka asserts that no scheme of regulation, short of
absolute prohibition, can protect against abuse. To permit a physician
lawfully to participate in taking life "would send a signal that there
are circumstances in which the state approves of suicide.(24) But
first, last, and foremost, Justice Sopinka reiterates that "the active
participation of one individual in the death of another is
intrinsically morally and legally wrong."(25)
It seems likely that public opinion is today more receptive to active
euthanasia than it once was.(26) In part this is because our culture
emphasizes choice and self-determination. All of us face the
inevitability of death, and all of us fear the debilitation and
dependency of crippling disease. Many Canadians have resorted to
"living wills," because we fear being kept alive in a hospital or
nursing home, our span of life artificially stretched beyond the point
anyone would choose to endure. Death, and the process of dying, have
become timely issues.
In a recent thought-provoking book(27) Daniel Callahan advances three
explanations for the increasing public receptivity to euthanasia and
physician-assisted suicide. First, technological man has come to think
of death not as a natural, contingent event, life's culmination, but
rather as a reproach to medical inadequacy. The medical establishment
wages "war" on diseases, with frequent public appeals for funds to
find a cure; death seems a lost battle in a larger, ongoing
struggle. The unspoken logic of this warfare is a quest for
immortality, not immortality beyond flesh and time, but here and
now. Second, medical technology blurs and eventually erases the
distinction, fundamental to the common law, between act and omission,
between taking life and allowing to die, between malfeasance and
nonfeasance. Finally, medical science has appropriated the vocabulary
of sanctity of life. The physician who violates the Hippocratic oath
by killing rather than treating his patient, whether by the crude
technology of the Kevorkian death machine or the modern pharmacopoeia,
speaks nobly of "death with dignity." Death by disease, to a
generation which cannot accept human finitude, comes to seem a
affront, and the physician who foreshortens life wraps himself in the
rhetoric of "human rights." In the process, moral distinctions are
first blurred, then effaced. We must remember, to quote Callahan, that
"human life had value before technology came along, and if death is an
insult to the human condition, that insult requires a spiritual, not a
scientific remedy. "(28)
In most cultures, questions concerning death and its significance are
openly acknowledged to be spiritual questions. Only in Canada could
one find a chief justice promising to consider life and death "without
regard to philosophical or theological considerations" and another
justice writing of "sacred . . . in the secular sense." The Charter of
Rights, as currently interpreted, precludes religious and spiritual
insight on the ultimate questions of human existence.
All the world's great religions consider that life has a sanctity not
merely because it exists but because it is a gift from a Creator, the
vital source of life. It is a gift held in trust, which, ultimately,
must be surrendered back. It is not that the Supreme Court of Canada
has considered and rejected such a view; rather, the view is rejected
in advance as an illegitimate consideration in the secular Canadian
society supposedly mandated by the Charter.
As Therese Lysaught said to the symposium on "The Sanctity of Life":
Human persons have become idols, worshipped as ends in themselves, cut
off from any sort of context that might provide them with meaning. We
don't know who we are, we don't know how to live (well), we don't know
how to talk together about these questions, and we don't know how to
die. This is precisely a spiritual crisis.(29)
It would be going too far to say that Justice Sopinka's judgment in
Rodriguez speaks to this spiritual crisis. But, alone among the
judges, he seems at least vaguely aware that there is another
dimension, another view of the human condition, above and beyond a
legal view.
Mr. Justice Sopinka has here established himself as a judge with
moral convictions, unafraid to articulate and defend them, and
prepared to rest his decision upon them. If there is hope for even a
partial recovery from the morass of Charter Politics ~ it lies
here. As for Sue Rodriguez, all who face the inevitability of death,
and that means everyone, must have felt the deepest sympathy for her
plight, no less than did Edgar for his stumbling, blind, and suicidal
father, when he counselled:
What in ill thoughts again? Men must endure
Their going hence, even as their coming hither;
Ripeness is all.(31)
CHAPTER 4
AS LIFE ENDS
Professional Care Givers on Terminal Care and Euthanasia
(E. Cassidy, B. de Veber, F. Henry, and I. Gentles)
CONCLUSION
This study of palliative-care professionals clarifies the ideas and
attitudes regarding the care of terminally ill patients of the men and
women who are actually involved in such care on a daily basis. The
great majority believe that modern palliative-care methods can control
the pain of all, or nearly all, terminally ill patients without
significantly shortening their lives. In the comparatively rare
instance where a patient's life might be shortened by large doses of
narcotics, most professionals agree that it would be ethical to
prescribe the narcotics if the primary purpose is to relieve pain and
the patient has made an informed choice. Most also agree that patients
who are allowed to die without artificial hydration and nutrition may
die at least as comfortably as those who receive conventional amounts
of artificial hydration and nutrition. Some, however, believe that
this applies only to artificial feeding. The responses to these
questions are related in that those who indicate that pain is
controllable and that lives are not shortened by the appropriate use
of narcotics are more likely to agree that patients may die in comfort
without the administration of artificial hydration and nutrition.
With regard to medical procedures, a large percentage of
palliative-care professionals agree that it is ethical to stop or
forgo medical procedures at the request of a terminally ill, mentally
competent patient if the illness is progressing and there is very
little chance of halting its progress or restoring the health of the
patient. A number of professionals note that a mentally competent
patient has the legal right to refuse any treatment. They also agree
that it is ethical to stop or forgo medical procedures at the request
of next of kin when a patient in a persistent vegetative state has
left no instructions regarding treatment or nontreatment. Somewhat
fewer care givers, but still a clear majority, believe that it is
ethical to stop or forgo medical procedures at the request of next of
kin for a patient who is conscious but irreversibly demented and who
has left no instructions regarding treatment or nontreatment. For all
three types of patients, care givers are most likely to agree that it
is ethical to stop or forgo CPR, major surgery, chemotherapy, and
artificial respiration, and least likely to agree that it is ethical
to stop or forgo antibiotics and artificial hydration.
Those professionals who agree with stopping or forgoing all eight
procedures are more likely to be physicians, younger males, and
non-Canadians, and also to have been brought up in a religion other
than Catholic and not to attend religious services. Those who agree
with stopping or forgoing all eight procedures listed in the
questionnaire are more likely to agree that patients may die as
comfortably without as with artificial hydration and nutrition.
A substantial majority of palliative-care professionals oppose
euthanasia. This is most clearly shown in response to the question "Is
there an ethical difference between allowing a patient to die by
stopping or forgoing medical procedures and bringing about a patient's
death by means of a lethal injection or in some other painless way?"
Three-quarters of the professional care givers state, "Yes, direct
killing is unethical." However, a number also note that they are torn
between the belief that direct killing is morally wrong and the belief
that it might be more humane in some instances than allowing a patient
to die by withholding medical procedures. A clear majority are also
opposed to the legalization of euthanasia and to its acceptance in
palliative-care wards. In reply to the question concerning the right
of medical personnel to end a terminally ill patient's life at the
request of next of kin, approximately ten times as many professionals
indicate that a physician or nurse should not have this right as
indicate that they sometimes should. As to whether a nurse or
physician should have the right to refuse a request from next of kin
to end the life of a terminally ill patient, nine out of ten
professionals think that they should have the right to refuse. With
regard to the possible effects of legalizing euthanasia, most care
givers believe that patients' trust in physicians and nurses might
decline and that the power might be greatly abused, but they are
evenly divided over whether medical progress in palliative care would
slacken.
Physicians are most opposed and members of nonmedical professions
least opposed to euthanasia. On all question concerning euthanasia
physicians and nurses are in close agreement.
In brief, the majority of palliative-care professionals believe that:
- patient pain can be controlled in nearly all instances with
modern palliative-care methods;
- withholding medical procedures from terminally ill patients is
ethical on condition that the request is made by a mentally competent
patient or by the next of kin for a patient who is in a persistent
vegetative state or who is conscious but irreversibly demented and on
condition that no contrary instructions have been left; and direct
killing is unethical (only one in four thinks that euthanasia should
be legalized, and only one in five favour its becoming an accepted
practice in palliative-care wards).
There is a prevalent misconception among the public and some
health-care professionals that patients who do not have artificially
maintained hydration and nutrition will die less comfortably than
those who do. Most care givers are aware that dying patients do not
normally need artificial hydration or nutrition. But 30 percent are
uncertain or think that these treatments are necessary to keep a dying
patient comfortable. Canadian care givers appear less experienced and
well educated in this area than their colleagues from other
countries. Those who are aware that it quite possible to die
comfortably without artificial nutrition or hydration are also more
apt to support forgoing all eight procedures than those who lack this
awareness. Moreover, those experienced in dealing with dying patients
are usually more willing than those with less experience to omit
life-prolonging measures. Doctors especially ate significantly more
likely to approve stopping or withholding medical procedures from
competent terminally ill patients than nurses or other health-care
professionals.
The belief and fear that pain in the terminally ill cannot be
controlled is refuted in this study. Doctors and nurses in palliative
care have observed that pain can be controlled in almost all
patients. This finding diverges so sharply from conventional wisdom
that the public deserves to be informed of it.
Finally, in spite of widespread public support, which includes many
of the elderly themselves, for legalized euthanasia, the great
majority of those who care for the dying on a daily basis do not
favour its legalization and tend to believe that medical/scientific
progress in palliative care would slacken if euthanasia became
accepted legal practice.
RECOMMENDATIONS
- Medical professionals should promote greater public awareness of the fact that extreme pain can be controlled in almost all terminally ill patients.
- Government agencies responsible for health should continue to support research in the field of pain control and palliative care.
- Medical professionals should promote greater public awareness of the fact that patients' lives are seldom shortened by the appropriate use of narcotics to control pain.
- All palliative-care professionals, especially in Canada, should be educated to the fact that patients who are allowed to die without artificial hydration and nutrition may die as comfortably or more comfortably than patients who receive conventional amounts of artificial hydration and nutrition.
- Existing laws against euthanasia should be maintained.
CHAPTER 6
FEAR AND FALSE PROMISES
The Challenge of Pain in the Terminally Ill
(John Scott)
The Scope of the Problem
In advanced cancer and other terminal disease, tumour cells and toxins
can irritate and compress pain receptors in nerve, bone, and soft
tissue. This signal sets off a cascade of biochemical interactions and
activates complex electrical circuitry in the nervous system.(1)
Recent research confirms, however, that pain is a somatopsychic
experience, being not only a sensation (a conscious awareness of a
noxious stimulus), but also an emotional experience with intense
feelings of displeasure resulting in a set of behaviours.(2) Pain is
always subjective. It remains what the patient says it is and not what
others think it ought to be. Pain is never stationary but always
moving with time and circumstances. Referred to by Aristotle as "a
passion of the soul," it is best compared to hunger and thirst need
states that go beyond sensation and involve the imperative for
action. As we face pain, both at an individual level and a societal
level, we discover this characteristic demand for action.(3)
We all must die. But if I can save him from days of torture, that is
what I feel is my great and ever new privilege. Pain is a more
terrible lord of mankind than even death himself.
Albert Schweitzer (4)
To focus attention on the complexity of pain as both a biological
and a psychological experience, Saunders coined the term "total
pain."(5) Anger, anxiety, depression, and a host of other psychosocial
factors lower a patient's pain threshold, that is, the same noxious
stimulus from the same tumour will cause more pain. On the other hand,
positive outlook, a supportive family, empathy from nurses and
physicians, forgiveness, diversion, and sleep will all raise the pain
threshold and decrease the pain experience.
While the prevalence of pain is relatively low in many terminal
diseases, it remains moderately high in cancer, with approximately 66
percent of patients with advanced disease requiring treatment for pain
relief.(6) Nonetheless, one-quarter to one-third of cancer patients
never experience pain. Because of the rapid aging of the Canadian
population and because of advances in disease therapy, which have led
to longer periods of survival with metastatic illness, it is predicted
that pain in advanced disease will increase by at least 50 percent in
this decade.(7) However, in the past 25 years, we have witnessed major
breakthroughs in our capacity to relieve pain. The World Health
Organization has demonstrated that access to pain-relieving drugs,
along with a simple educational program, can achieve relief in the
vast majority of patients.(8) Specialists in various parts of the
world estimate these basic approaches can control 85 to 98 percent of
cases.(9) The remaining cases require more careful attention and the
use of multiple drugs and therapies to achieve complete relief. The
technology and expertise to deal effectively with the problem of pain
has already been developed. Poor pain relief, when it exists, can
usually be traced to problems of education and resource
allocation.(10) Pain remains unrelieved because of
- a lack of knowledge diffusion about analgesics or other strategies to control symptoms
- inappropriate attitudes and fears in the health-care team and in the public
- lack of access and/or availability of appropriate services
Canada is viewed as an international pioneer and leader in the control
of the pain associated with terminal disease. Other countries use our
policies as models, and the Canadian system of palliative care is
emulated worldwide. Access to the drugs needed for pain relief is
excellent and, when necessary, Canadian physicians demonstrate
boldness in their use of narcotics. In the period 1984 to 1992, there
was a 300 percent increase in the use of opioids (drugs that mimic the
pharmacological properties of opiates) in Canada - one of the highest
increases in WHO statistics.(11) Granting agencies' new interest in
pain research and the new Canadian Cancer Pain Network are expected to
issue in a set of further advances in our capacity to relieve pain. A
new medical discipline, palliative medicine, has emerged that will
further push the frontiers of symptom control. This is already a
recognized specialty in the U.K. and Australia, and training programs
have been developed in Canada.(12) Published in 1993, the 845-page
Oxford Textbook of Palliative Medicine highlights the rapidly growing
sophistication and exciting new opportunities to relieve suffering and
enhance the quality of life for the dying.(13) We must unmask the
deception that there is nothing more that can be done.
PALLIATIVE CARE
What is palliative care and how does it relieve total pain? Following
are the things palliative care is not:
- It is not the withdrawal or absence of acute medical care.
- It is not merely volunteer hand-holding when nothing more can be done.
- It is not sedation or the hastening of death through gradual increasing of drug dosages.
- It is not passive euthanasia.
Health and Welfare Canada defines palliative care as "active
compassionate care directed towards improving the quality of life for
the dying."(14) First introduced into Canada in January 1985,
specialized programs of palliative care now exist in more than 500
hospitals and agencies across Canada.(15) Palliative care involves a
commitment to decrease suffering and to increase the quality of life
(that is, to enhance the substance and not the length of life) when
illness is no longer responding to curative or prolongation
therapies. Palliative care is a philosophy and a system of care that
affirms life when a person with irreversible disease is approaching
death. It is care that enables a person to live as fully as possible
until he dies.
The cornerstone of palliative care is excellence in the assessment,
analysis, and management of pain and symptoms, but its essence
includes whole-person, compassionate, and personalized care, which
focuses nor only on the physical but also the psychological and
spiritual dimensions of life. The philosophy of palliative care is
patient-centred, enabling the patient's agenda to be
preeminent. Palliative care is family-centred, reflecting an even
greater revolution than the one experienced in obstetrics. It means
that the process of dying and the event of death can be restored to
the family. Palliative care is committed to a multidisciplinary
approach, which includes the use of volunteers from the
community. Palliative care should be delivered in a number of sites -
home whenever possible, but when an institution or professional
facility is needed, a homelike environment must be created.
Palliative care is practised in the context of advanced cancer,
acquired immunodeficiency syndrome (AIDS), and the end stage of other
diseases. Palliative care involves a shift in treatment goals. When
cure is no longer possible and when attempts to prolong life become
increasingly ineffective, this should result in a cessation of some
disease-oriented therapies and the initiation of new symptom-directed
ones.
In palliative care we assist colleagues as they come to recognize
that a disease is irreversible and death is near. Certainly, in these
circumstances, we encourage withdrawal of any investigations or
treatments that are no longer achieving their intended purpose. Often
their continuation may be simply a frantic - and futile -attempt to
hold back death. However, in these situations, cessation of therapy
does not constitute "passive euthanasia." Death is not the
intended purpose of the withdrawal or withholding of treatment. Death
would come with or without the therapy, and often the withdrawal of
therapy has little effect on the timing of death. Our society believes
the lie that modern medicine controls the quality and timing of death
and life. In reality we control very little. Our ability to
resuscitate, prolong, and cure is partial and transitory. This
illusion of control over disease has fuelled society's demand for
control over death.
Most Canadians may be shocked to learn that the professionals
involved in the bedside care of the dying are strongly opposed to the
legalization of euthanasia and assisted suicide. (See chapter 4.) The
Canadian Palliative Care Association, representing the approximately
500 formal programs in our country, has forcefully stated its
opposition to the legalization of euthanasia and called for the
provision of effective, accessible palliative-care services.(16) Every
Canadian and international association and forum dealing with
palliative care, including the World Health Organization's Cancer Pain
Relief and Palliative Care Program, has expressed opposition to such
legislation. (17,18) Those professionals who focus their careers on
relievmg terminal suffering believe that euthanasia is not an answer
to pain.
Advocates for assisted suicide falsely accuse palliative care of
promoting a slow and prolonged form of death through sedating drugs,
and many patients fear that pain relief can be achieved only if they
are willing to accept sedation. Regretfully this misunderstanding has
been aggravated by the sloppy, inaccurate use of language by
physicians and nurses. Based on nineteenth-century views of
pharmacology, pain-relieving drugs are often still referred to as
"sedatives." However, in the vast majority of cases, the pain and
symptoms of advanced disease can be relieved without a major impact on
the level of consciousness. In severe or complex cases, pain is
frequently accompanied by multiple organ-system changes, which can
result in problems of confusion and decreasing alertness. It is
important to understand that these are caused by the disease and not
by the pain therapy. In some cases, once the pain has been relieved,
the sleep deprivation caused by the pain leads to a period of
increased sleep and temporary drowsiness. In a few others, the goal of
pain relief requires drugs at doses associated with decreased level of
consciousness. Frequently these drug-induced changes in brain function
are partial and temporary, and are clearly only side effects, not the
goal of treatment. There is close to universal ethical approval of the
bold use of pain-control measures even if their use risks decreasing
the period of survival. Yet palliative-care experience shows this
situation to be extremely rare. The drugs for pain 'relief are very
safe. Palliative-medicine specialists do not agree that good pain
relief shortens life. Pain relief without sedation is a central and
achievable goal of palliative care.(19)
At the same time, we must be very careful about making false promises
about palliative care, especially promises made as a result of feeling
trapped within an artificial framework of media debate. Increasingly
the media ask if palliative care can promise the total eradication of
suffering. Clearly palliative care is committed to the relief of
suffering. Yet, despite rapidly increasing expertise, it would be
foolish to imagine that any system of medical care, whether for
terminal, chronic, or acute illness, can promise total abolition of
suffering. The goal of pain relief can easily be twisted into an
obligation to eradicate all suffering at whatever cost - even if it is
necessary to precipitate death in order to achieve this "relief."
In the development of palliative care we must recognize a further
danger. We are witnessing a serious polarization that arises when
conservative pro-life forces naively and sometimes arrogantly push for
a "pure" stand for life. This often ends in a legalistic and
simplistic approach to protecting life against any hint of euthanasia,
including the refusal of any withdrawal of therapy. In its extreme
form, it counsels against ever saying no to CPR or removing
respirators. In the area of palliative care, it condemns the
discontinuance of intravenous therapy in the last days of life. There
is good evidence that pushing fluids into a body where there is a
multiple organ failure only increases suffering, augmenting shortness
of breath, as well as vomiting and swelling. The use of intravenous
therapy does not seem to affect how long a person survives when the
reason for deterioration and for decreased drinking by mouth is the
underlying disease. Behind the legalistic approach to never stopping a
therapy, one senses fear and the resulting drive to control. Choices
about CPR, respirators, and intravenous procedures in the last weeks
of life should not be viewed as choices for death. We must not tie
these decisions to the term "euthanasia." One can affirm and treasure
life to the last moment without frantically trying to prolong the
days.
MEDIA PORTRAYAL OF DEATH
How do Canadians die? For decades, the media have bombarded us with
dramatic stories of violent, bloody, and sudden death. Daily televised
newsreel images of war victims and fictional depictions of multiple
murders dull our sensitivities and blur the line between reality and
make-believe. The modern health system shields us from the scenes of
real death that once occurred in the family home. In the past five
years we have witnessed a new form of death-sensationalism. Highly
selective and emotive vignettes and media clips have been utilized to
portray dying as a painful process that robs us of dignity and
control. As a result, many caring citizens have come to believe that
prevention of unbearable suffering for the terminally ill requires the
legislated right to euthanasia. We are being told that the only real
choice facing a person with terminal illness lies between a quick and
easy death by assisted suicide or a slow, painful, and meaningless
death by disease progression. The Netherlands experience shows that
poor pain control is rarely a cause for requesting
euthanasia. Nonetheless, Canadians who support some form of
physician-assisted death do so only because they believe that
significant numbers are being forced to face death in unrelieved pain.
In reality, there is solid evidence that
- the pain of advanced disease can be relieved with existing drugs and techniques (20)
- the other psychological and physical problems of dying can be well managed by palliative care (21)
- the dying are not being kept alive, by means of tubes and machines, against their wishes (22)
- most deaths occur gently without agitation or distress (23)
- the option of euthanasia is not seen as necessary or desirable by the frontline doctors and nurses caring for the terminally ill. (24)
Somehow we must tell the other side of the story to the people of
Canada. The cry for euthanasia is not arising from the bedside of the
dying but from powerful minority political groups.
DEPRESSION AND COMPETENCE
Euthanasia is not only an ineffective and inappropriate response to
the pain of advanced disease; it also fails to understand the
psychological vulnerabilities and fears the dying have and
misinterprets their problems of clinical depression, grief, and brain
dysfunction. Those who have not yet encountered death in their own
family are often shocked to learn that most patients facing incurable
illness remain hopeful, positive, active, and fully engaged in life
despite their experience of grief and sadness. However, periods of
intense clinical depression can occur when one is terminally ill and
often lead to suicidal thinking. Assessment, then, becomes difficult
since this condition must be differentiated from the normal patterns
of grief associated with life-threatening illness.(25) Experienced
palliative-care clinicians can usually recognize depression, which is
described as feeling trapped in a corner, caught in a deep and total
hopelessness and worthlessness that will never change. The -words and
emotions and behaviours are those of a suicidal patient, not those of
a grieving patient, even one who is waiting and sometimes wishing to
die. Yet, many psychiatrists, if they are not familiar with terminal
care, find this diagnosis very problematic. Mental-health workers are
correctly concerned that the euthanasia debate fails to appreciate the
subtleties of psychological diagnosis and fear that the sanctioning of
assisted suicide will undermine decades of suicide-prevention
activities. Recent research on the terminally ill indicates that a
strong wish to die is rare and that it is highly correlated with
depression.(26) This study also supports the clinical impression that
such wishes to die are highly unstable and shift when symptom relief
and psychosocial support are provided.
Euthanasia advocates also fail to address the fact that 85 percent of
patients in advanced stages of disease have a measurable delirium.(27)
The capacity to make decisions, especially one as serious as suicide,
is severely impaired.(28) Deterioration in brain function and mental
competence can often be dramatic and fluctuations frequent. In this
setting, the use of a rigid legal framework of consent for euthanasia
would be totally unworkable and the potential for abuse huge. As has
been demonstrated in the Netherlands, the realities of the bedside
would result in any system of legalized suicide being rapidly expanded
to include involuntary euthanasia for incompetent patients.
Even when there is no pain, clinical depression, or delirium, we
still encounter patients who express, either transiently or
repeatedly, a wish to die; Is this not, then, the small group for whom
euthanasia legislation needs to be designed? But here, too, euthanasia
advocates fail to appreciate the richness and depth of the psychology
of dying. Yes, the cries "Let me die," "Help me die," or "I wish I
would die," are real and deep, but they can be interpreted only in the
context of lamentation.(29) Bedside doctors and nurses frequently care
for patients who yearn to discuss their highly ambivalent feelings
about death. These patients need a place of safety in which to pour
out their total pain. For us to interpret such a cry as a request for
a lethal overdose is to miss the mark completely. Lamentation is a
call for support and relief, a search for meaning, and an invitation
for relationship. It is a cry of life.
CONCLUSION
Beneath all pain lies fear - fear within the patient, family,
professionals, and community. The fear of pain itself and of death are
central, yet one also can recognize the fears of:
- abandonment
- losing control of decision-making
- overtreatment or artificial prolongation of suffering
- incontinence
- going crazy
- dying in distress from bleeding, suffocation, etc.
- becoming a burden to family
Relief can only be achieved by attacking what is a viper nest of
terror. Advocates for euthanasia in Canada are, with rare exceptions,
healthy persons who are afraid of death and pain and losing
control. Euthanasia is promoted as the solution to fear, promising to
end our fears of suffering and losing autonomy by offering, instead,
control over the method and timing of death. This is a false
promise. Euthanasia and assisted suicide have arisen as a direct
consequence of unresolved fear and denial; sanctioning it would lead
to a spiral of mounting fear, both in dying patients and in the
worried well of the community. (30)
Euthanasia legislation, far from diminishing suffering, would enhance the pain of dying by
- increasing mistrust between patient and professional care givers
- increasing fear of the drugs of symptom control
- diverting attention and resources away from palliative care.
The relief of pain requires more than sophisticated pharmacology. Both
assessment and therapy are built on a covenant of trust between
patient and care giver. At national conferences in recent months,
frontline palliative-care professionals have said that the fear
generated by the media debate on euthanasia is already having an
impact on the care of patients and families.(31) Increasingly patients
are distrustful of palliative care, concerned that their death will be
hastened in some way. There also appears to be a growing fear of
narcotics and other symptom-relieving drugs, reminiscent of 20 years
ago when oral morphine was first introduced into Canada. Fears of
overdosage and sedation lead patients to refuse relief and endure
unnecessary pain. Of equal importance, at a societal level, the burden
of suffering is increasing because public attention and government
funding are being diverted away from palliative care. While the
submitted briefs and discussions of the Senate Committee on Euthanasia
and Assisted Suicide have been full of rhetoric in support of
palliative care, this appears to be largely politically correct lip
service.(32) There has been no significant increase in the
infrastructure for palliative care within the provincial health
systems since the debate began, and several examples of decreasing
support in many provinces.(33)
The pain of advanced disease presents us with a tremendous
challenge. Canada has the skills and resources to meet this challenge
as long as we maintain our focus and our courage. We must not be
diverted by the mirage of euthanasia, by this seductive quick-fix
approach to suffering and death. Euthanasia, in fact, would open a
floodgate of fear and pain. It would rob us of scarce resources and
block the development of the effective community responses to pain
that we so urgently.