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"Morality is not correctly the doctrine of happiness : rather
it is the doctrine of how to feel worth being happy."
(Immanuel Kant)
Not every possible action is a good action.
Here is a collection of personal reflections on some particularly hot
topics (currently and probably even in future !). They all are organized
as tentatives of response to the following questions :
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| Life |
prenatal diagnosis |
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Methods of execution :
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| Freedom |
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| Health |
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| gene testing | |||
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| negative eugenics |
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| gene enhancement in somatic cells | |||
| euthanasia
: Terri Schiavo was severely brain-damaged in 1990 after an AMI. Her husband
has fought to allow her to die; her parents have opposed this on the grounds
that she shows some signs of awareness and might recover. The debate escalated
dramatically in February 2005 after a Florida judge permitted Schiavo's
feeding tube to be removed last week, prompting President George W. Bush
to sign emergency legislation ordering a review of her case. But on Tuesday
22 March, a federal judge turned down a request to have the tube reinserted. |
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therapeutical tenacity
/ overtreatment
: therapy should be practiced for the patient' sake alone and not for
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Organ trade is unlawful; organ gift is promoted on condition it is gratuitous, anonymous and spontaneous. The idea of graft and transplantation is understood differently according to culture, religion and ability of a region to supply to its needs in the field of health. The patient's eagerness can explain his quest of a donor in whatever country he is. Even those physicians who have strict ethical guidelines must pay attention not to be involved in blameable jobs. The only way to avoid rewarded organ gifts is to prohibit transplantation touring and grafting from friends, at the risk to loose true-hearted and noble donorsref. As the waiting list of patients requiring organ transplantation grows, there is a subtle but noticeable shift in society towards accepting organs as a commodity which can be paid for. Although nowhere is the organ trade legal, the commerce of organs goes on in different parts of the world, especially in developing countries such as India. This is largely due to societal and governmental failure to implement the existing "transplant laws". It is high time the medical profession ceased being an accomplice to this unscrupulous trade, which exploits the poor, deters altruism retarding the living-related and cadaver transplant programs, commercializes the human body and jeopardizes human dignityref. In the Netherlands, cross-over kidney transplantation has been introduced as an extra option in the living kidney donation programme. In cross-over transplantation, patients who cannot be given their own partner's kidney for immunological reasons are given a kidney from the partner of another patient in exchange for a kidney from their own partner. There is no difference in the medical indications and contraindications between direct and indirect living donation. There are no ethical obstacles since the net gain for the two couples is no different from that of direct living kidney donation and because the exchange takes place on the basis of equality. One should be aware that the extra possibilities may result in more psychological pressure on potential donors. It is important that the donation procedures start at the same moment and that the wishes of patients and donors for anonymity be preserved. A successful cross-over kidney transplantation programme requires a large pool of donors and patients. Therefore, this has been organised in a national programme. The Dutch Transplantation Foundation is responsible for the allocation of cross-over kidneys. Organ trade will thus be impossible. The 7 Dutch centres for kidney transplantation have developed a protocolref1, ref2, ref3. Brazil does not need to use LURD because they have not optimized their cadaver donor pool. The exploitation of LURD might be a good option for developed countries, but it is not useful for developing countriesref Web resources : Organs Watch |
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| cosy dynamics that exist between the pharmaceutical industry, drug
regulatory authorities, and the medical profession
Web resources : No Free Lunch |
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| Knowledge | informed
consent
: mental incapacity is common in acutely ill medical inpatients, and clinicians
tend not to recognise it. Screening methods for cognitive impairment could
be useful in detecting those with doubtful capacity to consent. Clinical
teams rarely identified patients who did not have mental capacity: in a
study only 24% (vs. actual 31%) were rated as lacking capacity. Factors
associated with mental incapacity were increasing age and cognitive impairmentref. |
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| education |
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| Work | |||
| Tolerance | humbleness | ||
| political intolerance | |||
| religious intolerance | |||
| war : "In accordance with the principles of double-think it does not matter if the war is not real. For when it is, victory is not possible. The war is not meant to be won, but it is meant to be continuous. Hierarchical society is only possible on the basis of poverty and ignorance. This new version is the past and no different past can ever have existed. In principle the war effort is always planned to keep society on the brink of starvation. The war is waged by the ruling group against its own subjects and its object is not the victory over either Eurasia or East Asia but to keep the very structure of society intact." (George Orwell, 1984; quoted at the end of Michael Moore's Fahrenheit 9/11) | |||
| Respect |
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| Solidarity |
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indifference | |
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tissue/organ donations |
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foreign debt of developing countries | ||
For the first time in the history of the United States, Congress met
in a special emergency session on Sunday, March 20, to pass legislation
aimed at the medical care of one patient — Terri Schiavo. President George
W. Bush encouraged the legislation and flew back to Washington, D.C., from
his vacation in Crawford, Texas, so that he could be on hand to sign it
immediately. In a statement issued three days earlier, he said: “The case
of Terri Schiavo raises complex issues. . . . Those who live at the mercy
of others deserve our special care and concern. It should be our goal as
a nation to build a culture of life, where all Americans are valued, welcomed,
and protected — and that culture of life must extend to individuals with
disabilities.”ref
The “culture of life” is a not-terribly-subtle reference to the antiabortion
movement in the United States, which received significant encouragement
in last year’s presidential election. The movement may now view itself
as strong enough to generate new laws to prevent human embryos from being
created for research and to require that incompetent patients be kept alive
with artificially delivered fluids and nutrition. How did the U.S. Congress
conclude that it was appropriate to attempt to reopen a case that had finally
been concluded after more than seven years of litigation involving almost
20 judges? Has the country’s culture changed so dramatically as to require
a fundamental change in the law? Or do patients who cannot continue to
live without artificially delivered fluids and nutrition pose previously
unrecognized or novel questions of law and ethics? The case of Terri Schiavo,
a Florida woman who is in a persistent vegetative state, is being played
out as a public spectacle and a tragedy for her and her husband, Michael
Schiavo. Mr. Schiavo’s private feud with his wife’s parents over the continued
use of a feeding tube has been taken to the media, the courts, the Florida
legislature, Florida Governor Jeb Bush, the U.S. Congress, and now President
Bush. Since Ms. Schiavo is in a medical and legal situation almost identical
to those of two of the most wellknown patients in medical jurisprudence,
Karen Ann Quinlan and Nancy Cruzan, there must be something about cases
like theirs that defies simple solutions, whether medical or legal. In
this sense, the case of Terri Schiavo provides an opportunity to examine
issues that most lawyers, bioethicists, and physicians believed were well
settled — if not since the 1976 New Jersey Supreme Court decision in the
case of Karen Quinlan, then at least since the 1990 U.S. Supreme Court
decision in the case of Nancy Cruzan. Before reviewing Terri Schiavo’s
case, it is well worth reviewing the legal background information that
has been ignored by Congress and the President. In 1976, the case of Karen
Quinlan made international headlines when her parents sought the assistance
of a judge to discontinue the use of a ventilator in their daughter, who
was in a persistent vegetative state.2 Ms. Quinlan’s physicians had refused
her parents’ request to remove the ventilator because, they said, they
feared that they might be held civilly or even criminally liable for her
death. The New Jersey Supreme Court ruled that competent persons have a
right to refuse life-sustaining treatment and that this right should not
be lost when a person becomes incompetent. Since the court believed that
the physicians were unwilling to withdraw the ventilator because of the
fear of legal liability, not precepts of medical ethics, it devised a mechanism
to grant the physicians prospective legal immunity for taking this action.
Specifically, the New Jersey Supreme Court ruled that after a prognosis,
confirmed by a hospital ethics committee,
that there is “no reasonable possibility of a patient returning to
a cognitive, sapient state,” life-sustaining treatment can be removed and
no one involved, including the physicians, can be held civilly or criminally
responsible for the death (In re Quinlan, 70 N.J.10, 355 A2d 647 (1976)).
The case of karen quinlan. The publicity surrounding the Quinlan case motivated
2 independent developments: it encouraged states to enact “living will”
legislation that provided legal immunity to physicians who honored patients’
written “advance directives” specifying how they would want to be treated
if they ever became incompetent; and it encouraged hospitals to establish
ethics committees that could attempt to resolve similar treatment disputes
without going to court. Although Quinlan was widely followed, the New Jersey
Supreme Court could make law only for New Jersey. When the U.S. Supreme
Court decided the case of Nancy Cruzan in 1990, it made constitutional
law for the entire country. Nancy Cruzan was a young woman in a persistent
vegetative state caused by an accident; she was in physical circumstances
essentially identical to those of Karen Quinlan, except that she was not
dependent on a ventilator but rather, like Terri Schiavo, required only
tube feeding to continue to live. 3 The Missouri Supreme Court had ruled
that the tube feeding could be discontinued on the basis of Nancy’s right
of self-determination, but that only Nancy herself should be able to make
this decision. Since she could not do so, tube feeding could be stopped
only if those speaking for her, including her parents, could produce “clear
and convincing” evidence that she would refuse tube feeding if she could
speak for herself. 4 The U.S. Supreme Court, in a 5-to-4 decision, agreed,
saying that the state of Missouri had the authority to adopt this high
standard of evidence (although no state was required to do so) because
of the finality of a decision to terminate treatment (Cruzan v. Director,
Missouri Dept. of Health, 497 U.S. 261 (1990)). In the words of the chief
justice, Missouri was entitled to “err on the side of life.” Six of the
nine justices explicitly found that no legal distinction could be made
between artificially delivered fluids and nutrition and other medical interventions,
such as ventilator support; none of the other three justices found a constitutionally
relevant distinction. This issue is not controversial as a matter of constitutional
law: Americans have (and have always had) the legal right to refuse any
medical intervention, including artificially delivered fluids and nutrition.
Supreme Court Justice Sandra Day O’Connor, in a concurring opinion (her
vote decided the case), recognized that young people (such as Karen Quinlan,
Nancy Cruzan, and now Terri Schiavo — all of whom were in their 20s at
the time of their catastrophic injuries), do not generally put explicit
treatment instructions in writing. She suggested that had Cruzan simply
said something like “if I’m not able to make medical treatment decisions
myself, I want my mother to make them,” such a statement should be a constitutionally
protected delegation of the authority to decide about her treatment. 3
O’Connor’s opinion was the reason that the Cruzan case energized a movement
— encouraging people to use the appropriate documents, such as health care
proxy forms or assignments of durable power of attorney, to designate someone
(usually called a health care proxy, or simply an agent) to make decisions
for them if they are unable to make them themselves. All states authorize
this delegation, and most states explicitly grant decision-making authority
to a close relative — almost always to the spouse above all others — if
the patient has not made a designation. Such laws are all to the good.
Terri Schiavo had a cardiac arrest, perhaps because of a potassium imbalance,
in 1990 (the year Cruzan was decided), when she was 27 years old. Since
1990, she has lived in a persistent vegetative state in nursing homes,
with constant care, being nourished and hydrated through tubes. In 1998,
Michael Schiavo petitioned the court to decide whether to discontinue the
tube feeding. Unlike Quinlan and Cruzan, however, the Schiavo case involves
a family dispute: Ms. Schiavo’s parents objected. A judge found that there
was clear and convincing evidence that Terri Schiavo was in a permanent
or persistent vegetative state and that, if she could make her own decision,
she would choose to discontinue life-prolonging procedures. An appeals
court affirmed the first judge’s decision, and the Florida Supreme Court
declined to review it. Schiavo’s parents returned to court, claiming that
they had newly discovered evidence. After an additional appeal, the parents
were permitted to challenge the original court findings on the basis of
new evidence related to a new treatment that they believed might restore
cognitive function. 5 physicians were asked to examine Ms. Schiavo — 2
chosen by the husband, two by the parents, and one by the court. On the
basis of their examinations and conclusions, the trial judge was persuaded
by the 3 experts who agreed that Schiavo was in a persistent vegetative
state. The appeals court affirmed the original decision of the trial court
judge, quoting his sympathetic conclusion: Despite the irrefutable evidence
that [Schiavo’s] cerebral cortex has sustained irreparable injuries, we
understand why a parent who had raised and nurtured a child from conception
would hold out hope that some level of cognitive function remained. If
Mrs. Schiavo were our own daughter, we could not hold to such faith. But
in the end this case is not about the aspirations that loving parents have
for their children. It is about Theresa Schiavo’s right to make her own
decision, independent of her parents and independent of her husband. .
. . It may be unfortunate that when families cannot agree, the best forum
we can offer for this private, personal decision is a public courtroom
and the best decision-maker we can provide is a judge with no prior knowledge
of the ward, but the law currently provides no better solution that adequately
protects the interests of promoting the value of life (In re Guardianship
of Schiavo, 800 So. 2d 640 (Fla. 2d Dist.Ct.App. 2001)). The Supreme Court
of Florida again refused to hear an appeal. Subsequently, the parents,
with the vocal and organized support of conservative religious organizations,
went to the state legislature seeking legislation requiring the reinsertion
of Ms. Schiavo’s feeding tube, which had been removed on the basis of the
court decisions (Goodnough A. Victory in Florida feeding case emboldens
the religious right. New York Times. October 24, 2003:A1; Kirkpatrick DD,
Stolberg SG. How family’s cause reached the halls of Congress: networks
of Christians rallied to case of Florida woman. New York Times. March 22,
2005:Al.). The legislature passed a new law (2003-418), often referred
to as “Terri’s Law,” which gave Governor Jeb Bush the authority to order
the feeding tube reinserted, and he did so. The law applied only to a patient
who met the following criteria on October 15, 2003 — in other words, only
to Terri Schiavo: (a) That patient has no written advance directive; (b)
The court has found that patient to be in a persistent vegetative state;
(c) That patient has had nutrition and hydration withheld; and (d) A member
of that patient’s family has challenged the withholding of nutrition and
hydration. The constitutionality of this law was immediately challenged.
In the fall of 2004, the Florida Supreme Court ruled that the law was unconstitutional
because it violates the separation of powers — the division of the government
into three branches (executive, legislative, and judicial), each with its
own powers and responsibilities. The doctrine states simply that no branch
may encroach on the powers of another, and no branch may delegate to another
branch its constitutionally assigned power. Specifically, the court held
that for the legislature to pass a law that permits the executive to “interfere
with the final judicial determination in a case” is “without question an
invasion of the authority of the judicial branch.” In addition, the court
found the law unconstitutional for an independent reason, because it “delegates
legislative power to the governor” by giving the governor “unbridled discretion”
to make a decision about a citizen’s constitutional rights. In the court’s
words: If the Legislature with the assent of the Governor can do what was
attempted here, the judicial branch would be subordinated to the final
directive of the other branches. Also subordinated would be the rights
of individuals, including the well established privacy right to self determination.
. . . Vested rights could be stripped away based on popular clamor (Bush
v. Schiavo, 885 So.2d 321 (Fla. 2004)). In January 2005, the U.S. Supreme
Court refused to hear an appeal brought by Governor Bush. Thereafter, the
trial court judge ordered that the feeding tube be removed in 30 days (at
1 p.m., Friday, March 18) unless a higher court again intervened. The presiding
judge, George W. Greer of the Pinellas County Circuit Court, was thereafter
picketed and threatened with death; he has had to be accompanied by armed
guards at all times. Ms. Schiavo’s parents, again with the aid of a variety
of religious fundamentalist and “right to life” organizations, sought review
in the appeals courts, a new statute in the state legislature, and finally,
congressional intervention. Both the trial judge and the appeals courts
refused to reopen the case on the basis of claims of new evidence (including
the Pope’s 2004 statement regarding fluids and nutrition (Shannon TA, Walter
JJ. Implications of the papal allocution on feeding tubes. Hastings Cent
Rep 2004;34(4):18-20)) or the failure to appoint an independent lawyer
for her at the original hearing. In Florida, the state legislature considered,
and the House passed, new legislation aimed at restoring the feeding tube,
but the Florida Senate — recognizing, I think, that this new legislation
would be unconstitutional for the same reason as the previous legislation
was — ultimately refused to approve the bill. Thereupon, an event unique
in American politics occurred: after more than a week of discussion, and
after formally declaring their Easter recess without action, Congress reconvened
two days after the feeding tube was removed to consider emergency legislation
designed to apply only to Terri Schiavo. Under rules that permitted a few
senators to act if no senator objected, the U.S. Senate adopted a bill
entitled “For the relief of the parents of Theresa Marie Schiavo” on March
20, 2005. The House, a majority of whose members had to be present to vote,
debated the same measure from 9 p.m. to midnight on the same day and passed
it by a 4-toone margin shortly after midnight on March 21. The President
then signed it into law. In substance, the new law (S. 686) provides that
“the U.S. District Court for the Middle District of Florida shall have
jurisdiction” to hear a suit “for the alleged violation of any right of
Theresa Marie Schiavo under the Constitution or laws of the United States
relating to the withholding or withdrawal of food, fluids, or medical treatment
necessary to sustain her life.” The parents have standing to bring the
lawsuit (the federal court had previously refused to hear the case on the
basis that the parents had no standing to bring it), and the court is instructed
to “determine de novo any claim of a violation of any right of Theresa
Marie Schiavo . . . notwithstanding any prior State court determination
. . . ” — that is, to pretend that no court has made any prior ruling in
the case. The act is to provide no “precedent with respect to future legislation.”
The brief debate on this bill in the House of Representatives (there were
no hearings in either chamber and no debate at all in the U.S. Senate)
was notable primarily for its uninformed and frenzied rhetoric. It was
covered live by C-SPAN. The primary sponsor of the measure, Congressman
Thomas DeLay (R-Tex.), for example, asserted that “She’s not a vegetable,
just handicapped like many millions of people walking around today. This
has nothing to do with politics, and it’s disgusting for people to say
that it does.” Others echoed the sentiments of Senate majority leader and
physician Bill Frist (R-Tenn.), who said that immediate action was imperative
because “Terri Schiavo is being denied life-saving fluids and nutrition
as we speak.” Other physician-members of the House chimed in. Congressman
Dave Weldon (R-Fla.) remarked that, on the basis of his 16 years of medical
practice, he was able to conclude that Terri Schiavo is “not in a persistent
vegetative state.” Congressman Phil Gingrey (R-Ga.) agreed, saying “she’s
very much alive.” Another physician, Congressman Joe Schwarz (R-Mich.),
who was a head and neck surgeon for 27 years, opined that “she does have
some cognitive ability” and asked, “How many other patients are there with
feeding tubes? Should they be removed too?” Another physician-congressman,
Tom Price (R-Ga.), thought the law was reasonable because there was “no
living will in place” and the family and experts disagreed. The only physician
who was troubled by Congress’s public diagnosis and treatment of Terri
Schiavo was James McDermott (D-Wash.), who chided his physician-colleagues
for the poor medical practice of making a diagnosis without examining the
patient. Although he deferred to the medical expertise of his congressional
colleagues with M.D. degrees, Congressman Barney Frank (D-Mass.) pointed
out that the chamber was not filled with physicians. Frank said of the
March 20 proceedings: “We’re not doctors, we just play them on C-SPAN.”
The mantras of the debate were that in a life-or-death decision, we should
err on the “side of life,” that action should be taken to “prevent death
by starvation” and ensure the “right to life,” and that Congress should
“protect the rights of disabled people.” The following day, U.S. District
Court Judge James D. Whittemore issued a careful opinion denying the request
of the parents for a temporary restraining order that would require the
reinsertion of the feeding tube (Schiavo ex rel. Schindler v. Schiavo,
No. 8:05-CV-530-T-27TBM (M.D. Fla. Mar. 22, 2005) (slip opinion)). The
judge concluded that the parents had failed to demonstrate “a substantial
likelihood of success on the merits” of the case — a prerequisite for a
temporary restraining order. Specifically, Judge Whittemore found that,
as to the various due-process claims made, the case had been “exhaustively
litigated”; that, throughout, all parties had been “represented by able
counsel”; and that it was not clear how having an additional lawyer “appointed
by the court [for Ms. Schiavo] would have reduced the risk of erroneous
rulings.” As to the allegation that the patient’s First Amendment rights
to practice her religion had been violated by the state, the court held
that there were no state actions involved at all, “because neither Defendant
Schiavo nor Defendant Hospice are state actors.” Whittemore’s decision
is reasonable and consistent with settled law, and it seems likely to be
upheld on appeal. The religious right and congressional Republicans may
nonetheless turn this decision to their advantage. Despite the fact that
Congress itself sent the case to federal court for determination, these
Republicans may cite the ruling as yet another example of “legislating”
by the courts. For they liken the action permitted — the withdrawal
of a feeding tube — to unfavored activities, such as abortion and same-sex
marriage, that courts have allowed to occur. All three activities, they
argue, represent attacks on the “culture of life” and necessitate that
the President appoint federal court judges who value life over liberty.
A vast majority of Americans would not want to be maintained in a persistent
vegetative state by means of a feeding tube, like Terri Schiavo and Nancy
Cruzan. The intense publicity generated by this case will cause many to
discuss this issue with their families and, I hope, to sign an advance
directive. Such a directive, in the form of a living will or the designation
of a health care proxy, would prevent court involvement in virtually all
cases — although it might not have solved the problem in the Schiavo case,
because the family members disagreed about Terri Schiavo’s medical condition
and the acceptability of removing the tube in any circumstances. Despite
the impression that may have been created by these three cases, and especially
by the grandstanding in Congress, conflicts involving medical decision
making for incompetent patients near the end of life are no longer primarily
legal in nature, if they ever were. The law has been remarkably stable
since Quinlan (which itself restated existing law): competent adults have
the right to refuse any medical treatment, including life-sustaining treatment
(which includes artificially delivered fluids and nutrition). Incompetent
adults retain an interest in self-determination. Competent adults can execute
an advance directive stating their wishes and designate a person to act
on their behalf, and physicians can honor these wishes. Physicians and
health care agents should make treatment decisions consistent with what
they believe the patient would want (the subjective standard). If the patient’s
desires cannot be ascertained, then treatment decisions should be based
on the patient’s best interests (what a reasonable person would most likely
want in the same circumstances). This has, I believe, always been the law
in the United States (Annas GJ. The rights of hospital patients. New York:
Discus Books, 1975:81-4). Of course, legal forms or formalities cannot
solve nonlegal problems. Decision making near the end of life is difficult
and can exacerbate unresolved family feuds that then are played out at
the patient’s bedside and even in the media. Nonetheless, it is reasonable
and responsible for all persons to designate health care agents to make
treatment decisions for them when they are unable to make their own. After
this recent congressional intervention, it also makes sense to specifically
state one’s wishes with respect to artificial fluids and hydration — and
that one wants no politicians, even physicianpoliticians, involved in the
process. Most Americans will agree with a resolution that was overwhelmingly
adopted by the California Medical Association on the same day that Congress
passed the Schiavo law: “Resolved: That the California Medical Association
expresses its outrage at Congress’ interference with these medical decisions.”
If there is disagreement between the physician and the family, or among
family members, the involvement of outside experts, including consultants,
ethics committees, risk managers, lawyers, and even courts, may become
inevitable — at least if the patient survives long enough to permit such
involvement. It is the long-lasting nature of the persistent vegetative
state that results in its persistence in the courtrooms of the United States.
There is (and should be) no special law regarding the refusal of treatment
that is tailored to specific diseases or prognoses, and the persistent
vegetative state is no exceptionref1,
ref2,
ref3.
“Erring on the side of life” in this context often results in violating
a person’s body and human dignity in a way few would want for themselves.
In such situations, erring on the side of liberty — specifically, the patient’s
right to decide on treatment — is more consistent with American values
and our constitutional traditions. As the Massachusetts Supreme Judicial
Court said in a 1977 case that raised the same legal question: “The constitutional
right to privacy, as we conceive it, is an expression of the sanctity of
individual free choice and self-determination as fundamental constituents
of life. The value of life as so perceived is lessened not by a decision
to refuse treatment, but by the failure to allow a competent human being
the right of choice.” (Superintendent of Belchertown State School v. Saikewicz,
373 Mass. 728, 742, 370 N.E.2d 417 (Mass. 1977). Copyright © 2005
Massachusetts Medical Society.)
The story of Terri Schiavo should be disturbing to all of us. How can
it be that medicine, ethics, law, and family can work so poorly together
in meeting the needs of this woman who was left in a persistent vegetative
state after having a cardiac arrest? Ms. Schiavo has been sustained by
artificial hydration and nutrition through a feeding tube for 15 years,
and her husband, Michael Schiavo, has been locked in a very public legal
struggle with her parents and siblings about whether such treatment should
be continued or stopped. Distortion by interest groups, media hyperbole,
and manipulative use of videotape have characterized this case and
demonstrate what can happen when a patient becomes more a precedent-setting
symbol than a unique human being. Let us begin with some medical facts.
On February 25, 1990, Terri Schiavo had a cardiac arrest, triggered by
extreme hypokalemia brought on by an eating disorder. As a result, severe
hypoxic–ischemic encephalopathy developed, and during the subsequent months,
she exhibited no evidence of higher cortical function. Computed tomographic
scans of her brain eventually showed severe atrophy of her cerebral hemispheres,
and her electroencephalograms have been flat, indicating no functional
activity of the cerebral cortex. Her neurologic examinations have been
indicative of a persistent vegetative state, which includes periods of
wakefulness alternating with sleep, some reflexive responses to light and
noise, and some basic gag and swallowing responses, but no signs of emotion,
willful activity, or cognition (Jennett B. The vegetative state: medical
facts, ethical and legal dilemmas. New York: Cambridge University Press,
2002). There is no evidence that Ms. Schiavo is suffering, since the usual
definition of this term requires conscious awareness that is impossible
in the absence of cortical activity. There have been only a few reported
cases in which minimal cognitive and motor functions were restored three
months or more after the diagnosis of a persistent vegetative state due
to hypoxic–ischemic encephalopathy; in none of these cases was there the
sort of objective evidence of severe cortical damage that is present in
this case, nor was the period of disability so longref1,
ref2.
Having viewed some of the highly edited videotaped material of Terri Schiavo
and having seen other patients in a persistent vegetative state, I am not
surprised that family members and others unfamiliar with this condition
would interpret some of her apparent alertness and movement as meaningful.
In 2002, the Florida trial court judge conducted six days of evidentiary
hearings on Ms. Schiavo’s condition, including evaluations by four neurologists,
one radiologist, and her attending physician. The two neurologists selected
by Michael Schiavo, a court-appointed “neutral” neurologist, and Ms. Schiavo’s
attending physician all agreed that her condition met the criteria for
a persistent vegetative state. The neurologist and the radiologist chosen
by the patient’s parents and siblings, the Schindler family, disagreed
and suggested that Ms. Schiavo’s condition might improve with unproven
therapies such as hyperbaric oxygen or vasodilators — but had no objective
data to support their assertions. The trial court judge ruled that the
diagnosis of a persistent vegetative state met the legal standard of “clear
and convincing” evidence, and this decision was reviewed and upheld by
the Florida Second District Court of Appeal. Subsequent appeals to the
Florida Supreme Court and the U.S. Supreme Court were denied a hearing.
So what is known about Terri Schiavo’s wishes and values? Since she unfortunately
left no written advance directive, the next step would be to meet with
her closest family members and try to understand what she would want under
these medical circumstances if she could speak for herself, drawing on
the principle of “substituted judgment.” Some families unite around this
question, especially when there is a shared vision of the patient’s views
Dr. Quill is a professor of medicine, psychiatry, and medical humanities
and the director of the Center for Palliative Care and Clinical Ethics
at the University of Rochester Medical Center, Rochester, N.Y. and values.
Other families unravel, their crisis aggravated by genuine differences
of opinion about the proper course of action or preexisting fault lines
arising from long-standing family dynamics. Here Ms. Schiavo’s story gets
more complex. Michael Schiavo was made her legal guardian under Florida
law, which designates the spouse as the decision maker above other family
members if a patient becomes irreversibly incapacitated and has not designated
a health care proxy. After three years of trying traditional and experimental
therapies, Mr. Schiavo accepted the neurologists’ diagnosis of an irreversible
persistent vegetative state. He believed that his wife would not want to
be kept alive indefinitely in her condition, recalling prior statements
that she had made, such as “I don’t want to be kept alive on a machine.”
The Schindler family, however, did not accept the diagnosis of a persistent
vegetative state, believing instead that Ms. Schiavo’s condition could
improve with additional rehabilitative treatment. The relationship between
Mr. Schiavo and the Schindler family began breaking down in 1993, around
the time that a malpractice lawsuit revolving around the events that led
to Ms. Schiavo’s cardiac arrest was settled. In 1994, Mr. Schiavo attempted
to refuse treatment for an infection his wife had, and her parents took
legal action to require treatment. Thus began wide-ranging, acrimonious
legal and public-opinion battles that now involve multiple special-interest
groups who see this case as a cause célèbre for their particular
issue. Michael Schiavo has been criticized for being motivated by financial
greed, and his loyalty to his wife has been questioned because he now lives
with another woman, with whom he has two children. The Schindlers have
been criticized for not accepting the painful reality of their daughter’s
condition and for expressing their own wishes and values rather than hers.
The right of competent patients to refuse unwanted medical treatment, including
artificial hydration and nutrition, is a settled ethical and legal issue
in this country — based on the right to bodily integrity. In the Nancy
Cruzan case, the Supreme Court affirmed that surrogate decision makers
have this right when a patient is incapacitated, but it said that states
could set their own standards of evidence about patients’ own wishesref.
Although both the Schiavo and Cruzan cases involve the potential withdrawal
of a feeding tube from a patient in a persistent vegetative state, the
family was united in believing that Nancy Cruzan would not want to be kept
alive in such a state indefinitely. Their challenge, under Missouri law,
was to prove to the court in a clear and convincing manner that this would
have been Nancy Cruzan’s own wish. The Schiavo case raises much more challenging
questions about how to define family and how to proceed if members of the
immediate family are not in agreement. The relevant Florida statute requires
“clear and convincing evidence that the decision would have been the one
the patient would have chosen had the patient been competent or, if there
is no indication of what the patient would have chosen, that the decision
is in the patient’s best interest.” Since there is no societal consensus
about whether a feeding tube is in the “best interest” of a patient in
a persistent vegetative state, the main legal question to be addressed
is that of Terri Schiavo’s wishes. In 2001, the trial court judge ruled
that clear and convincing evidence showed that Ms. Schiavo would choose
not to receive life-prolonging treatment under her current circumstances.
This ruling was also affirmed by the Florida appeals court and denied a
hearing by the Florida Supreme Court. When Terri Schiavo’s feeding tube
was removed for the second time in 2003, the Florida legislature created
“Terri’s Law” to override the court decision, and the tube was again reinserted.
This law was subsequently ruled an unconstitutional violation of the separation
of powers. On March 18, 2005, Ms. Schiavo’s feeding tube was removed for
a third time. The U.S. Congress then passed an “emergency measure” that
was signed by the President in an effort both to force federal courts to
review Ms. Schiavo’s case and to create a legal mandate to have her feeding
tube reinserted yet again. Although the U.S. District Court in Florida
denied the emergency request to reinsert the feeding tube, the final outcome
of Congress’s extraordinary maneuver is not yet clear. This sad saga reinforces
my personal belief that the courts — though their involvement is sometimes
necessary — are the last place one wants to be when working through these
complex dilemmas. Although I have not examined her, from the data I have
reviewed, I have no doubt that Terri Schiavo is in a persistent vegetative
state and that her cognitive and neurologic functions are unfortunately
not going to improve. Her life can be further prolonged with artificial
hydration and nutrition, and there is some solace in knowing that she is
not consciously suffering. I also believe that both her husband and her
family, while seeing the situation in radically different ways, are trying
to do what is right for her. If and when her feeding tube is permanently
removed, her family may be reassured that dying in this way can be a natural,
humane process (humans died in this way for thousands of years before the
advent of feeding tubes)ref.
In considering this profound decision, the central issue is not what family
members would want for themselves or what they want for their incapacitated
loved one, but rather what the patient would want for himself or herself.
The New Jersey Supreme Court that decided the case of Karen Ann Quinlan
ot the question of substituted judgment right: If the patient could wake
up for 15 minutes and understand his or her condition fully, and then had
to return to it, what would he or she tell you to do? If the data about
the patient’s wishes are not clear, then in the absence of public policy
or family consensus, we should err on the side of continued treatment even
in cases of a persistent vegetative state in which there is no hope of
recovery. But if the evidence is clear, as the courts have found in the
case of Terri Schiavo, then enforcing life-prolonging treatment against
what is agreed to be the patient’s will is both unethical and illegal.
Let us hope that future courts and legislative bodies put aside all the
special interests and distractions and listen carefully to the patient’s
voice as expressed through family members and close friends. This voice
is what counts the most, and in the Terri Schiavo case, it has been largely
drowned out by a very loud, self-interested public debate.
The media spectacle that surrounded the dying of Terri Schiavo is now 2 months past, and America's culture warriors have moved on to other battlegrounds. Much has been said about which political players won or lost and whether key voting blocs will care. But does the experience offer any useful lessons about the subject in dispute — decision making at the end of life? There is a widespread perception that the law failed Terri Schiavo, her family, and the country by not yielding a quick, clear resolution. Cultural conservatives and others who rallied to the side of Schiavo's parents condemn the courts for failing to keep her alive. Many who backed her husband's efforts to withdraw her feeding tube urge increased use of advance directives and living wills — and safeguards against challenges to the judgment of surrogate decision makers. Both sides look to the law to set clear rules, though the 2 sides differ sharply on what those rules should be. Almost forgotten in this debate, and ignored in press coverage of the Schiavo affair, is the peripheral role of law when end-of-life dilemmas arise. The law sets some limits: active killing, for example, is impermissible, and clear advance directives must be followed if they have been properly given. In most U.S. jurisdictions, suicide is unlawful, as is the assistance of physicians in self-killing. But within these bounds, end-of-life questions are almost always resolved in the private sphere, by patients, their physicians, and their family members, working with nurses, social workers, and members of the clergy. In tens of thousands of cases each year, patients and families handle catastrophic illness or injury without going to court. They do so with unsung courage, in the face of fear, anguish, and sometimes bitterness. Every loss of a loved one is, in part, a loss of hope — hope for healing of old rifts and fulfillment of thwarted possibilities. Anger and denial are common, especially when relationships were conflict-ridden beforehand. Cast-off parents, rival siblings, children who never measured up to their parents' expectations bring much to the bedside beyond their religious and philosophical leanings. Anger, denial, and other nonrational influences can lock family members into warring stances over whether to treat a devastating illness aggressively or discontinue life-sustaining measures. What is remarkable, given the intensity of the feelings at stake, is how rarely such conflicts make their way to court. It is a measure of how discreetly such squabbles are handled that we know little about how often they arise. And it is a measure of people's character under this pressure that families usually come together to make these judgments or to honor the preferences their loved ones have expressed. This is for the good: to rend families asunder at the end of a loved one's life does spiritual violence to all concerned. Within wide boundaries, we are committed to honoring patients' clearly stated wishes. This commitment not only safeguards patients' liberty and dignity; it protects against family strife when a patient's intentions are clear. When the patient's wishes are unstated and illness precludes asking about them, it is important to limit the possibilities for family conflict and lasting anger. Enabling families to mourn and move on — and discouraging them from playing out old resentments as end-of-life battles — should be a clinical and social priority. The law can help to pursue this goal by making it difficult for any one party to impose a decision when family members or others concerned disagree with it. Answers dictated by the law yield clear winners and losers, heightening long-term resentments and inviting further strife. A large literature suggests that solutions crafted by the parties to a conflict come with a sense of shared ownership that dampens discord. By making it harder to invoke a court's final say, law can encourage conversation aimed at reconciliation or, at least, mutual accommodation. The proposition that law should promise quick, clear answers is a recipe for intensified family and social strife, since we are nowhere near national consensus on what the answers should be. Some features of current law support the family-friendly resolution of agonizing end-of-life questions. The law's inquiry into what the patient would want when there is neither a clearly stated prior preference nor a designated surrogate decision maker is a legal fiction, since a person in a persistent vegetative state or a similarly incapacitated condition cannot formulate a preference. But this fiction sends the right moral message. It centers problem-solving conversation on something family members and friends have in common — their commitment to the patient's interests. This focus, in turn, encourages more mature handling of old wounds and resentments, even if they cannot be resolved. Efforts to enmesh the law in end-of-life choices through detailed advance directives and the formal selection of surrogate decision makers risk stoking conflict. Advance directives cannot anticipate all scenarios, and the law's commands can crowd out benevolent feelings. The more detailed the directive, the greater the possibilities for lawyerly argument about its application to situations that its author did not precisely foresee. Opting for a surrogate decision maker solves this problem but introduces another: selection of one person may hurt or offend others, reawakening old resentments. When conflicts seem likely, these risks are worth taking; when ties among loved ones are strong and cooperation prevails, the case for involving the law is weaker. Resort to the courts by warring family members to try to narrow the acceptable range of end-of-life choices on religious grounds is more worrisome. The clinical options at issue in the Schiavo litigation — removing the feeding tube and allowing a patient with a devastating brain injury to die or continuing tube feedings and embarking on an almost certainly futile therapeutic course — were both within the range allowed by ethics and law. To their credit, the judges who heard the case declined to narrow this range. The escalation of a family dispute through fiery religious references represented an attempt to reduce the latitude allowed by law. A Florida bishop's op-ed piece invoked "the passion of Terry Schiavo," and some insisted that, to God, stopping tube feedings is murder. The attempt failed, but the incendiary language set a new standard for family divisiveness at the end of life. What, then, are the lessons of the Schiavo affair for the management of end-of-life conflict? First, we should keep in mind that the affair represented an extraordinary exception: the overwhelming majority of such cases are handled privately, by patients, family members, and caregivers. We should take pride in this fact and not overstate the problems to be solved. Second, the overarching goal of courts, clinical caregivers, and others with a say in end-of-life disputes should be to pursue private, family-friendly accommodation within the wide limits set by law. Caregivers should, of course, defer to advance directives and to properly designated surrogate decision makers. They should, moreover, encourage patients to make their end-of-life preferences known to those closest to them, preferably through standardized means. But in so doing, caregivers should assert themselves gently: to push too hard for a living will or advance directive is to put patient trust at risk, particularly in this era of escalating worry about pressure to cut costs. In addition, caregivers should encourage conversation about end-of-life questions among patients, family members, and others who are closely involved. And when the clinical picture takes a catastrophic turn and a patient can no longer formulate preferences, caregivers should give high priority to detecting hints of discord. At the first sign of tension, physicians, nurses, and social workers should become active listeners in search of smoldering feelings that might give rise to conflict. If and when conflict erupts, end-of-life choices shouldn't be treated as purely ethical questions, divorced from the regrets and resentments involved. Psychiatric and social-work consultation should be part of the management plan, and mediation merits study as an approach. Mediators' methods of listening, exploring parties' needs, reframing problems, and proposing solutions have been well honed in work with divorcing couples, estranged business partners, and others in life-transforming crises. These skills are well suited to the work of guiding warring family members toward agreement on end-of-life choices for their loved one. At times, physicians, and even insurers, become parties to these conflicts. Financial incentives, real or perceived, can shape positions and sow distrust. Cost-control strategies that engage caregivers in covert rationing can have toxic effectsref, particularly when medical futility is at issue. Our national unwillingness to acknowledge the conflict between efforts to limit medical spending and insistence on all possibly beneficial care worsens this toxicity. Good mediation technique can help to clarify misunderstandings, soften anger, and ease irrational distrust. But it cannot finesse contradictions that, as a country, we refuse to face. For the last six years of Terri Schiavo's life, Robert Lynch, the local Catholic bishop, tried unsuccessfully to meet with her parents and husband to reach a solution through mediation. As their personal struggle became an international spectacle, Lynch broke with the Church hierarchy by refusing to side with the parents. Instead, he called on "both sides [to] step back" and to try for "a heroic moment of concern for the feelings of each other."5 In a public appeal that was ignored by all sides, he said: "The legacy of Terri's situation should not be that of those who love her the most, loathing the actions of one another."ref Schiavo's legacy has turned out to be worse than he feared. After her death, her parents and husband continued to battle — over access to her remainsref. At the time of the autopsy, her brain weighed 615 grams, about half of that of a healthy woman of her age. There was no evidence of trauma contributing her collapse, no evidence that there was any abuse or neglect, and no evidence that drugs were administered illegally while she was in the Florida hospice.
Lethal injection is the most common way people are legally put to death in the USA. To be exact, this method has been used to kill 788 of the 956 men and women who have been executed in the USA since 1976, when the death penalty was reinstated by the Supreme Court. Lethal injection is supposed to be humane, and thus not in violation of the US Constitution's Eighth Amendment proscription against "cruel and unusual" punishment. Indeed, compared with electrocution, gas, gunfire, or hanging, killing people with drugs seems almost humane. Typically, the condemned man or woman is strapped to a chair or trolley. Two intravenous lines are inserted, one as a back up. The lines are kept open with saline solution. Then, at the warden's signal, the injection team administers: first, sodium thiopental to induce anaesthesia, then pancuronium bromide to cause paralysis, and finally a bolus of potassium chloride to bring about cardiac arrest. It seems so clinical and clean. However, in a fast-track Research Letter in this week's Lancet, Leonidas Koniaris and co-workers report that these killings may not be as free from cruelty as death-penalty proponents claimref. The research team obtained information from Virginia and Texas, where since 1976 nearly half of the executions in the USA have been done. Among the facts they learned were that neither state has a record of how they developed their execution protocol, that the injection teams were made up of medical technicians or individuals from medical corps with no training in administering anaesthesia, and that there was no assessment of the depth of anaesthesia before the paralysing agent and potassium chloride were injected. The researchers also obtained toxicological reports from four other states which indicate that post-mortem thiopental concentrations in the blood of 43 of 49 executed inmates (88%) were lower than those needed for surgical anaesthesia, and 21 (43%) episodes were consistent with awareness. That is: those being executed may have been awake. Of course, because they were paralysed, no one could tell. It would be a cruel way to die: awake, paralysed, unable to move, to breathe, while potassium burned through your veins. That is why, as Koniaris and his co-authors point out, the American Veterinary Medical Association and 19 states, including Texas, prohibit the use of neuromuscular blocking agents to kill animals. The authors call for a halt to executions by lethal injection and a public review. They also argue that because "participation of doctors in protocol design and execution is ethically prohibited", a more effective, humane protocol cannot be developed. But, ethically prohibited or not, many doctors are willing to participate in putting people to death. A survey of US physicians found that although the American Medical Association (AMA) ethical guidelines forbid physicians to participate in executions, 19% said they would inject lethal drugs and 41% said they would perform at least one action prohibited by the AMA guidelines, such as starting intravenous lines. In fact, only 3% of those asked were aware that there were guidelines. Clearly, for a substantial number of physicians, the putting to death of condemned people is not considered contrary to the precept "first, do no harm". What justification can there be for capital punishment at all? The two main arguments for the death penalty are deterrence and retribution. Few experts believe that the threat of capital punishment is an effective deterrent. That leaves retribution. But to justify capital punishment, the retribution must be meted out fairly, and that is clearly not the case. In only 1% of murders do prosecutors seek the death penalty. Whether you receive the death penalty depends not on what you have done, but where you committed your crime, what colour your skin is, and how much money you have. The use of the death penalty not only varies from state to state (12 US states have no death penalty) but from jurisdiction to jurisdiction within a state. Repeated studies have shown a pattern of racial discrimination in the administration of the death penalty. Of the 205 people executed for inter-racial murders in the USA, for example, 193 were black defendants charged with killing a white person, while only 12 were white defendants charged with killing a black individual. 90% of defendants are too poor to hire their own lawyer--most rely on overworked court-appointed lawyers. Capital punishment is not only an atrocity, but also a stain on the record of the world's most powerful democracy. Doctors should not be in the job of killing. Those who do participate in this barbaric act are shameful examples of how a profession has allowed its values to be corrupted by state violenceref1, ref2. Since 1976, when the death penalty was reinstated, 959 people have been executed in the USAref. Lethal injection has eclipsed all other methods of execution because of public perception that the process is relatively humane and does not violate the Eighth Amendment prohibition against cruel and unusual punishment. US courts recognise "evolving standards of decency that mark the progress of a maturing society", and prohibit punishments that "involve the unnecessary and wanton infliction of pain", "involve torture or a lingering death", or do not accord with "the dignity of man" (Beardslee vs Woodford. 395 F.3d 1064, 1070 & n.8 (9th Cir 2005)). Lethal injection usually consists of sequential administration of sodium thiopental for anaesthesia, pancuronium bromide to induce paralysis, and finally potassium chloride to cause death (Denno D. When legislatures delegate death: the troubling paradox behind state uses of electrocution and lethal injection and what it says about us. Ohio St Law J 2002; 63: 63-261). Without anaesthesia, the condemned person would experience asphyxiation, a severe burning sensation, massive muscle cramping, and finally cardiac arrest. Thus, adequate anesthesia is necessary both to mitigate the suffering of the condemned and to preserve public opinion that lethal injection is a near-painless death. By contrast with its medical applications, however, anaesthesia in execution has not been subjected to clinical trials, governmental regulation, extensive training of practitioners, standardisation, or the supervision of peer-review and medicolegal liability. Furthermore, the American Medical Association and American Nurses Association strictly oppose participation of their members in executions. We postulated that anaesthesia methods in lethal injection might be inadequate. To assess anaesthesia methods, we sought protocol information from the states of Texas and Virginia, where 45.4% of executions are done, by a combination of statutory records requests to the Texas Department of Criminal Justice and the Virginia Department of Corrections, along with personal interviews and sworn testimony of corrections officials involved in executions. We noted that: neither state had a record of the creation of its protocol (Texas Department of Criminal Justice Assistant General Counsel, January and February, 2004; and Virginia Department of Corrections Director of Communications, December, 2003; written communications); executioners--typically one to three emergency medical technicians or medical corpsmen--had no training in anaesthesia (Virginia Department of Corrections Director of Communications, written communication; and personal interview of a former senior Texas corrections official who witnessed 219 Texas executions); after placement of one or two intravenous lines, executioners stepped behind a wall or curtain and remotely administered drugs to the conscious inmate; no direct observation, physical examination, or electronic monitoring took place for anaesthesia (Virginia Department of Corrections Senior Warden Charlie Davis; Testimony in Reid vs Johnson, Civil Action No 3:03cv1039 (Sept 1, 2004)) and there was no data collection, documentation of anaesthesia, or post-procedure peer review (Virginia Department of Corrections Director of Communications, written communication; and personal interview). No assessment of depth of anaesthesia or loss of consciousness was done; apparently anaesthesia is assumed because a relatively large quantity of thiopental is specified (usually 2 g) compared with the typical clinical induction dose of 3-5 mg/kg, immediately followed by 1-1.5 mg/kg per min for maintenance; this dose equates to 270-450 mg for induction and 90-135 mg/min maintenance for a 200 lb man. The assumption that 2 g thiopental assures anaesthesia is overly simplistic, however. First, technical difficulties or procedural errors by poorly trained executioners might hinder administration of the total dose. Second, if thiopental anaesthesia were maintained at standard infusion rates, the total dose for a 10-min procedure in a 100 kg man would be 1.3-2.0 g. Thus the dose used is not excessive for the average time from injection to death (8.4 min, SD 4.7) and might be inadequate if the process took longerref. Third, a person anticipating execution would be fearful, anxious, and hyperadrenergic, and would need a higher dose of thiopental than would a premedicated surgical patient. Fourth, inmates with histories of chronic substance misuse problems might have high tolerance to sedative hypnotics and would need increased doses of anaesthetic. Because no documentation of anaesthesia in the execution chamber existed, the only available objective data were postmortem concentrations of thiopental. Texas and Virginia refused to provide such data, but we obtained autopsy toxicology results from 49 executions in Arizona, Georgia, North Carolina, and South Carolina. Toxicology reports were generated by MedTox Laboratories (St Paul, MN) for Arizona and are available in Beardslee versus Woodford, No C-04-5381 (Northern District of California, 2004). Data from the Division of Forensic Sciences Georgia Bureau of Investigation are available in State versus Nance, Superior Court Indictment No 95-B-2461-4. North Carolina reports were obtained directly from the Office of the Chief Medical Examiner. South Carolina Law Enforcement Division Toxicology Department reports were obtained by attorney David Barron, Kentucky Department of Public Advocacy Capital Post-Conviction Unit (personal communication) and are available in Hill versus Ozmint, No 2:04-0489-18AJ (District of South Carolina, 2004). Although the protocols of all four states are similar to those of Texas and Virginia, and specify that 2 g thiopental is used, concentrations of the drug in the blood ranged from only trace amounts to 370 mg/L (median 15.5 mg/L). Thiopental concentrations did not fall with increased time between execution and blood sample collection, consistent with data showing that thiopental is quite stable in stored human plasmaref. Extrapolation of antemortem depth of anaesthesia from post-mortem blood thiopental concentrations is admittedly problematic. To estimate concentrations of thiopental in the brain from concentrations in the blood in life, details of the rate and duration of drug administration are needed. Unfortunately, such details are usually not specified in lethal injection protocols. Furthermore, no data about post-mortem distribution of thiopental are available. However, a large range of blood concentrations resulted from nearly identical protocols across and within individual states--from 8.2 mg/L to 370 mg/L in North Carolina for the same sampling site (subclavian artery) and similar collection times (same day or next day, respectively). This finding suggests substantial variations in either the autopsy or anaesthesia methods. Contrasting the expertise of state medical examiners with the relatively unskilled executioners, however, would strongly suggest that the variation is probably due to differences in drug administration in individual executions. If post-mortem thiopental concentrations are taken as a surrogate marker of concentrations in the blood during life, most of the executed inmates had concentrations that would not be expected to produce a surgical plane of anaesthesia, and 21 (43%) had concentrations consistent with consciousness. In a careful study in which actual serum thiopental concentrations were measured against clinical endpoints, the steady state serum concentration needed to produce a 50% probability of no muscle response (Cp50) after intubation was defined as 78.8 mg/L (SD 2.9)ref. The Cp50 for movement after trapezius muscle squeeze, a stimulus equivalent to skin incision, was 38.9 mg/L (3.3). Remarkably, 43 of the 49 inmates had blood thiopental concentrations below this level. Most worryingly, 21 inmates had concentrations < the Cp50 for repression of movement in response to a vocal command. In view of these data, we suggest that it is possible that some of these inmates were fully aware during their executions. We certainly cannot conclude that these inmates were unconscious and insensate. However, with no monitoring and with use of the paralytic agent, any suffering of the inmate would be undetectable. With little public dialogue about protocols for killing human beings, it is pertinent to consider recommendations from animal euthanasia protocols. The American Veterinary Medical Association (AVMA) panel on euthanasia specifically prohibits the use of pentobarbital with a neuromuscular blocking agent to kill animalsref, and 19 states, including Texas, have expressly or implicitly prohibited the use of neuromuscular blocking agents in animal euthanasia because of the risk of unrecognised consciousness (Beardslee vs Woodford. 395 F.3d 1064, 1070 & n.8 (9th Cir 2005)). Furthermore, AVMA specifies that "it is of utmost importance that personnel performing this technique are trained and knowledgeable in anaesthetic techniques, and are competent in assessing anaesthetic depth appropriate for administration of potassium chloride intravenously. Administration of potassium chloride intravenously requires animals to be in a surgical plane of anesthesia characterized by loss of consciousness, loss of reflex muscle response, and loss of response to noxious stimuli"ref. The absence of training and monitoring, and the remote administration of drugs, coupled with eyewitness reports of muscle responses during execution, suggest that the current practice of lethal injection for execution fails to meet veterinary standards (Denno D. When legislatures delegate death: the troubling paradox behind state uses of electrocution and lethal injection and what it says about us. Ohio St Law J 2002; 63: 63-261). Our data suggest that anaesthesia methods in lethal injection in the USA are flawed. Failures in protocol design, implementation, monitoring and review might have led to the unnecessary suffering of at least some of those executed. Because participation of doctors in protocol design or execution is ethically prohibited, adequate anaesthesia cannot be certain. Therefore, to prevent unnecessary cruelty and suffering, cessation and public review of lethal injections is warranted. When Socrates was executed, Plato described the action of hemlock as a slowly rising chill, beginning in the feet and ending life when it eventually reached the heart. As it did so, Socrates' last request was for an offering to thank Asclepius, patron of healers, for such an effective poison. It is an ignoble legacy that 2400 years later, medical science continues to affect the efficiency, rather than the ethos, of execution. But there is now an opportunity to redress this shortcoming, by considering evidence that demonstrates the barbarity of lethal injection.
Michael Morales was scheduled to have been executed on Feb 21 in California for torturing, raping, and murdering a teenage girl. His attorney, Kenneth Starr, claimed that execution by lethal injection would be a cruel and unusual punishment, which is prohibited by the Eighth Amendment to the US constitution. Ratified in 1789, this amendment was designed to end punishments such as burning and disembowelling, in which death was secondary to the infliction of pain and retribution. Afterwards, hanging became the recommended procedure until bungled public executions caused authorities to look elsewhere. Thomas Edison proposed that electrocution would be instantaneous. It wasn't. Gas followed, and then lethal injection. By the 1970s a minority view of the US Supreme Court held that execution would be cruel and unusual under any circumstances. Similar motions before the same Californian court in 2004 and 2005 had failed. But now Starr could cite Koniaris and colleagues' Lancet paper, which found that despite a theoretically lethal dose of barbiturate, 21 of 49 executed US inmates had postmortem thiopental concentrations consistent with consciousness. In addition, records from San Quentin prison revealed that of the 13 inmates executed by lethal injection in California, 6 continued to breathe until after pancuronium had been injected. Among those with a lingering execution was Tookie Williams, a former gang-leader, turned children's author in an attempt to warn youngsters away from violence. Judge Jeremy Fogel ordered that the state could execute Morales, but must do so without inflicting undue pain. Therefore, the state must either rely solely on thiopental, or else have a qualified individual confirm unconsciousness before the injection of pancuronium and potassium chloride. 2 anaesthetists who had volunteered to observe the execution refused to accept the new terms in which their role of monitoring vital signs would constitute active participation; furthermore it was unclear how they should act if the plane of anaesthesia was inadequate. This decision leaves the future of current US lethal injection protocols in doubt. Of the 1012 executions carried out in the US since capital punishment was re-established in 1977, 844 have been by lethal injection. Nebraska is the only state, among 38 with death penalties, that relies on another method. New Jersey has suspended lethal injections after concerns about the procedure, and challenges to this method are being heard from Missouri and Florida. Meanwhile, 646 condemned inmates wait with Michael Morales on death row in California. Despite questionnaires showing willingness among some US physicians to participate in state executions, such behaviour contradicts the principles of many professional organisations in the USA, including the American Medical Association, American College of Physicians, American Society of Anesthesiologists, American Nurses Association, and Association of Emergency Medical Technicians. In California, the 30000-strong state medical association is sponsoring legislation to outlaw medical participation in executions. But why are health practitioners involved at all? Is it to ensure outcomes, or to salve the conscience of the public by providing a façade of compassion and clinical efficiency? This is a pivotal point in history. A moment when individuals, like Judge Fogel, and the anaesthetists who refused to participate, have given voice to their conscience. They have articulated the concerns of an increasing number of Americans, whose support for capital punishment has dropped from 80% to 64% in the past decade. It is a voice to be heeded. As Judge Fogel noted, the Eighth Amendment has been interpreted as prohibiting punishments that are “incompatible with the evolving standards of decency that mark the progress of a maturing society”. In 2004, China, Iran, Vietnam, and the USA accounted for 97% of the world's executions. From which of these countries will a mature society take the lead, and abolish the atrocity of state execution?ref
Officially, most people who are hospitalized or under therapy for mental illness are in that treatment by choice. Part of a print from an 1880 painting by Robert Fleury. The caption reads: "Dr. Philippe Pinel at the Saltpêtrière, 1795. The great pioneer of humanitarian reform orders the chains removed from patients at the Paris asylum for insane women.” Pinel is credited with having introduced rational, ethical mental health care, but debate continues over the proper role of coercion in treating the mentally ill. But you might well not know that if you asked them. Some recent studies have found that many patients hospitalized for mental disorders feel they were coerced into getting treatment, even when there was no legal order requiring the treatment. Coercion is far from a new phenomenon in the treatment of the mentally ill. In Western countries it started as early as the Middle Ages, at least if you count stuffing someone naked into a dark cage as “treatment.” The centuries since then have brought more rational, humane therapies and a drop in the use of laws to force treatment on people, though most agree this must remain a last resort for some cases. Yet in the past dozen years or so, research has shed light on a different phenomenon: the way patients who are supposedly voluntary, not subject to any legal orders, experience coercion. Such patients sometimes perceive coercion not from the law, as before, but from family, doctors or others, researchers have found. One survey of such patients found that when hospitalized, two-thirds of them either weren’t sure they were free to leave, or positively believed they weren’t allowed to. Another survey found that one third of studied recipients of “electroshock” therapy—a treatment used for some difficult mental illness cases—didn’t feel they had freely agreed to it, despite having signed consent forms. Both these surveys, conducted in Britain, add to growing number of studies in other countries documenting feelings of coercion among ostensibly voluntary mental patients. The studies come from nations generally seen as advanced, such as Norway and the United States. “Perceptions of coercion will vary according to culture” and laws in every place, wrote Jonathan Bindman of the Institute of Psychiatry, London, an author of both the studies, in an email to World Science. Yet several studies have turned up similar statistics across countries in terms of how many psychiatric patients feel coerced. For instance, Bindman’s study on hospitalized patients, published in the February issue of the journal Social Psychiatry and Psychiatric Epidemiology, found that a third of them feel “highly coerced,” with a few reporting threats or force. A similar study on Norwegian patients published in the November 1, 2002 Nordic Journal of Psychiatry found that 32 percent perceived “high levels” of coercion. In the United States, the Chicago-based MacArthur foundation reported in February 2001, based on a series of studies, that “a significant minority of legally ‘voluntary’ patients experience coercion.” The opposite also occurs, the studies found: some patients who are in treatment under orders think they are there only by free choice. One reason it has taken some time to bring these issues to light is that coercion is hard to measure, researchers say. “For many years coercion was equated with legal compulsion, which had the advantage of being clearly defined and straightforwardly measurable,” Bindman and colleagues wrote in a February, 2001 report commissioned by the U.K. Department of Health. But “the relationship between legal restraint and coercion is not a direct one, some patients accepting voluntary admission only after a process of persuasion (by professionals, family, or others) in which coercive elements are clearly present.” The problem may ironically have come to the forefront because in recent years, industrialized countries have changed laws to sharply reduce the open, legal use of forced treatment. The trend, called deinstitutionalization, was part of a shift in societal attitudes towards greater tolerance and respect for civil liberties. But critics argue that the process created a wave of untreated, sick patients who pose a danger to themselves and others. One treatment that stirred controversy both before and after deinstitutionalization is electroconvulsive therapy, also known as electroshock therapy. In this treatment, a strong electric current is passed through the brain. It is widely considered effective for difficult cases of depression and some other illnesses, but some advocates for the mentally ill have also decried it as dehumanizing. One new study found that despite the dramatic rollback of laws allowing forced treatment, electroshock therapy is still often associated with coercion—official or not—at least in the United Kingdom. In a paper published in the January 2005 British Journal of Psychiatry, Bindman and colleagues found that about one-third of electroshock patients who had participated in studies didn’t feel they had freely consented to the therapy, despite having signed a consent form. Around half of them also didn’t feel they had gotten enough information on the procedure and its side effects, added the researchers, who based their findings on a review of previously published medical literature. Neither current nor proposed safeguards for patients are sufficient to ensure informed consent,” the researchers wrote.Apart from the electroshock cases specifically, information could also be a useful antidote to the feelings of coercion among patients more generally, Bindman and colleagues wrote in their Social Psychiatry and Psychiatric Epidemiology paper. The medical community should consider informing all psychiatric patients “of the powers of detention which may be used once they are admitted, and of the circumstances in which they might be used,” the researchers wrote. Moreover, Bindman and colleagues wrote in the 2001 report, for patients not under legal orders, mental health professionals may have to make up their minds between two sometimes tough choices. One is to eliminate the coercion. The other: reopen a page from the old rulebook—make the coercion official.
British Special Operations Executive (SOE) : the ingenious gadgets of the SOE Catalogue, available to the well prepared SOE saboteur. These gadgets were used to great effect in many theatres of war. For instance, one of the most successful SOE operations of the war was Jaywick. This resulted in 30,000 tons of Japanese shipping being sunk in Singapore harbour, with all the agents returning safely. Another operation of major importance was Operation Gunnerside, which destroyed the German supplies of 'heavy water' in Norway and so hindered the German attempt to develop an atomic bomb
Stuart Newman, a professor of cell biology and anatomy at New York Medical College in Valhalla, says he opposes the patenting of living things. Newman, working with Washington, DC, activist Jeremy Rifkin, filed a patent application in 1997 for a theoretical creature he never actually made. For "tactical reasons," Newman says he eventually split his patent application into two: one involving primates and the other focused on other animals. Using what he calls the "embryo chimera technique," Newman sought to patent a creature combining human embryo cells with cells from the embryo of a monkey, ape, or other animal to create a blend of both. Other scientists have used similar methods to create a "geep" (part goat, part sheep) says Newman, adding that his chimera could be used for drug testing and as a source of organs to transplant into humans. After 7 years and several rejections and appeals, the USPTO turned down both of Newman's patent applications in August 2004, saying, among other things, that his creatures would be too close to human. Newman and Rifkin let the 6-month appeals period lapse and declared victory in February 2005. Both Rifkin and Newman say they expect the ruling to prevent scientists and biotechs from obtaining similar patents for 20 years, the time a patent is usually viable. Rifkin says crossing species boundaries is a form of animal abuse and a violation of nature and human dignity. 25 years ago, US scientist Ananda Chakrabarty, who worked for General Electric at the time, obtained the first patent on a living organism, a genetically engineered bacterium that consumes oil spills. The patent office originally denied the application, believing it could not patent living organisms, according to Brigid Quinn, USPTO spokesperson. The case landed in the US Supreme Court, which in 1980 ruled that patents could be awarded on anything that was human-made. Since then, some 436 transgenic or bioengineered animals have been patented, including 362 mice, 26 rats, 19 rabbits, 17 sheep, 24 pigs, two chickens, 20 cows, three dogs, and many more. Many say the 1980 ruling led to the birth of biotechnology in the United States. However, US law clearly prohibits the patenting of people. Irving L. Weissman, a professor of cancer biology, pathology, and developmental biology at Stanford University has created mice with brains that contain about 1% human tissue. Weissman says recent news reports that he plans to create a mouse with a 100% human brain are "inaccurate." A pioneer in the field of stem cell research, Weissman is credited as being the first scientist to identify and isolate hematopoietic stem cells from mice and humans. He says that the news reports were fueled by an academic inquiry he made to find out, in theory, what his university ethics panel thought of the idea. He says he has no current plans to create such a mouse. The Newman/Rifkin patent is "a new attempt to block science," while the "use of human-mouse chimeras is old," Weissman says. In 1988, J. Michael McCune patented the SCID-hu mouse, "a severe combined immunodeficient mouse with human organs, bones, lymphoid tissue, thymus, and liver," says Weissman, who is also director of Stanford's Institute of Cancer/Stem Cell Biology and Medicine and a cofounder of Stem-Cells and other companies. "The precedent is there, the discoveries are long published, and people's lives have been affected by those discoveries. Would they take back all those discoveries and be happy if the therapies discovered through them were taken away?" Weissman dismisses the Newman/Rifkin case as "typical Rifkin," adding that "one example doesn't hold. It doesn't invalidate the others, so it's a hollow victory. The case is not the precedent they think." Austin Smith, director of the Institute for Stem Cell Research at the University of Edinburgh, agrees. The case is "irrelevant to mainstream stem cell research and the companies interested in this area. They're not interested in creating monsters. It's absurd. The idea of using them to create body parts is just ludicrous." Smith notes that the point of much of stem cell research is to develop cells that can be transplanted into patients to cure disease. "You can only test the medication by injecting it into animal models – an already made animal, not an early embryo – which means part of the animal will be chimeric," he says. "Of necessity, it will have some human cells in it." While there is a legitimate ethical discussion concerning the mixing of very early cells from a human embryo and an animal embryo, such as a chimpanzee, it's not an application anyone is pursuing, says Smith. "Nobody's ever proposed doing that. It's like some dark fantasy. No scientist would ever think of doing that because there's no reason to do that," he says. "I can't see any business use of primary embryo chimeras," says Smith. "For late chimeras, yes, it's an important testing system to research and test therapies for degenerative diseases like Parkinson's or juvenile diabetes, so a company might want to use it, absolutely. To get it into the clinic, you need commercial involvement." Robert Lanza, medical director at Advanced Cell Technology, Worcester, Mass. says the patent case is most likely "a publicity stunt." Certain changes are acceptable, such as introducing a specific human gene into pigs to prevent transplant patients from rejecting pig organs, he says. However, he adds that it's "inhumane to create any chimeric animal that causes it distress or solely for entertainment purposes, such as glow-in-the-dark fish." In 2002, a Taiwanese company inserted DNA from jellyfish into zebrafish, creating glow-in-the-dark fish. To address ethical issues, Canada passed the Assisted Human Reproduction Act last year, which bars the transfer of a nonhuman cell into a human embryo or of human cells into a nonhuman embryo. In the United States, the National Academy of Sciences is expected in the spring to issue voluntary guidelines for researchers who work with human embryonic stem cells. Lila Feisee, director for intellectual property for the Biotechnology Industry Organization, a trade group, says companies are aiming to provide life-saving treatments, not patent people. "No one from our industry that I'm aware of has applied for a patent on a human being." McGlynn says chimeric animals, and patents, are crucial to a biotech's ability to develop cures for human diseases. To protect its investment, for example, StemCells has > 43 US patents on its stem cell technology, though none are on bioengineered mice. "If the private sector cannot receive a patent on all its work and invention," he says, "it's unlikely to engage in the work because it takes so much time and effort and money." Looking to cure a host of neurodegenerative diseases, StemCells, a Palo Alto, Calif.-based company, has transplanted human neural stem cells into the brains of thousands of mice. The mice are technically chimeras, or is a mix of two or more species. (The word "chimera" refers to the Greek mythological creature that has a lion's head, a goat's body, and a serpent's tail.) President and CEO Martin McGlynn says his biotech company is now waiting for the FDA's permission to test human neural stem cells – the ones already tested in mice – in human patients.
Direct-to-consumer advertising (DTCA) of prescription medications is controversial, with claims that it may cause overuse of unnecessary medication or prevent underuse of effective medication. In a randomized trial it was shown that patients’ requests have a profound effect on physician prescribing in major depression and adjustment disorder. Direct-to-consumer advertising may have competing effects on quality, potentially both averting underuse and promoting overuseref.
Harold Fredrick Shipman, a British general practitioner, was convicted on January 31, 2000, of murdering 15 of his patients (and of forging a will of one of them) while he was practicing in a small town in northwest England. He had killed these patients by administering lethal doses of diamorphine (diacetylmorphine). He was sentenced to 15 concurrent terms of life imprisonment but committed suicide while in custody on January 13, 2004ref.
"When a doctor does go wrong he is the first of criminals. He has nerve
and he has knowledge."
Sir Arthur Conan Doyle, "The Speckled Band"
The Netherlands' first reported case of a doctor complying with a request for assisted suicide from a patient with Alzheimer's disease was lawful. The case was reported to the Netherlands' assessment committee system, which consists of five regional committees and checks whether doctors have followed the requirements of the law. If members of the relevant committee judge that the legal requirements have been met, they do not forward the case to the public prosecution service. Committee members have defended their decision, maintaining that approval for the case did not show that the country was on a "slippery slope" towards a general acceptance of euthanasia for cases of Alzheimer's disease. The case emerged in the 2004 annual report of the five committees of doctors, lawyers, and ethicists to whom doctors must report euthanasia. The committees judged that four out of 1886 cases of euthanasia and assisted suicide in 2004 failed the legal requirements, and, as the law requires, forwarded these to the public prosecution service. But, in contrast, the case of a patient with Alzheimer's disease was considered to have met requirements as a "well-considered and voluntary request" to die. The patient was also considered to be "suffering hopelessly and unbearably," which is another of the criteria that makes euthanasia lawful. The committees' report states that, in general, patients with Alzheimer's disease could not always comply with the requirements but that "in specific circumstances" they could. The 65 year old patient had had Alzheimer's disease for three years. Since his diagnosis he had said that he did not wish to endure the full course of his illness and had in the previous year repeatedly asked for help to commit suicide. The doctor judged him to be suffering unbearably. He was conscious that he could no longer function independently and faced the future prospect of increasing dementia. A second opinion from a doctor trained through the national support and consultation with euthanasia programme, however, did not recognise such suffering. This doctor argued that the patient's awareness of his suffering would decline as the disease progressed and doubted that the patient was competent to express his wishes. Further consultations with a psychologist, a nursing home doctor, and a gerontopsychiatrist, however, all concluded that the patient was suffering unbearably because he was conscious that the disease was removing control over his life. They believed too that he remained competent.ref
Apparently heeding George Washington's call to "labor to keep alive in your breast that little spark of celestial fire called conscience," physicians, nurses, and pharmacists are increasingly claiming a right to the autonomy not only to refuse to provide services they find objectionable, but even to refuse to refer patients to another provider and, more recently, to inform them of the existence of legal options for care. Largely as artifacts of the abortion wars, at least 45 states have "conscience clauses" on their books — laws that balance a physician's conscientious objection to performing an abortion with the profession's obligation to afford all patients nondiscriminatory access to services. In most cases, the provision of a referral satisfies one's professional obligations. But in recent years, with the abortion debate increasingly at the center of wider discussions about euthanasia, assisted suicide, reproductive technology, and embryonic stem-cell research, nurses and pharmacists have begun demanding not only the same right of refusal, but also — because even a referral, in their view, makes one complicit in the objectionable act — a much broader freedom to avoid facilitating a patient's choices. Illinois has a regulation that requires pharmacies to fill valid contraception prescriptions in