The quote in the response by Hugh McLachlan is taken slightly out of
context: the full sentence is "If we accept that it is bad for people to
end their life with a period of suffering, it does not matter whether that
period lasts 100 years, 100 days or 100 minutes: we should help them to
die as soon as possible." This argument was aimed only at those who
already agree that we should help people avoid prolonged periods of...
The quote in the response by Hugh McLachlan is taken slightly out of
context: the full sentence is "If we accept that it is bad for people to
end their life with a period of suffering, it does not matter whether that
period lasts 100 years, 100 days or 100 minutes: we should help them to
die as soon as possible." This argument was aimed only at those who
already agree that we should help people avoid prolonged periods of
suffering.
The comparison with people who don't want to die as virgins is not
really valid: it may be a basic human impulse to have sex, but it is not a
basic human impulse to have sex with someone because we feel sorry for
them. However, it is a basic human impulse to help people avoid suffering.
I would argue that we are morally obliged to help such people, and not
only those who seek eudaimonia.
Dr Miller's argument is based on the premises that (1) doctors must
not kill patients; (2) brain-dead patients are
alive; (3) procuring vital organs from brain-dead patients would cause
their death (p618). As Dr Miller acknowledges, it is by no means certain
that premise (1) stands, as doctors intentionally kill patients every day
and this is accepted and acceptable to societies in which it takes place.
The second premis...
Dr Miller's argument is based on the premises that (1) doctors must
not kill patients; (2) brain-dead patients are
alive; (3) procuring vital organs from brain-dead patients would cause
their death (p618). As Dr Miller acknowledges, it is by no means certain
that premise (1) stands, as doctors intentionally kill patients every day
and this is accepted and acceptable to societies in which it takes place.
The second premise is also debatable. Dr Miller takes the view that the
condition of whole brain death is equivalent to continuing life, but I
would argue that whole brain death is death. There is only one organ death
that matters, only one organ death that cannot be replaced by technology
or allogeneic transplantation, only one organ death that removes from us
everything that we think of as human and ourselves, and that is the brain.
There is no need to think in terms of death of the human and death of the
organism as if they were fundamentally different in character. All that
matters to us is whether or not our brain is dead.
The diagnosis of death by whole brain criteria identifies a situation
where there is irreversible loss of function of this organ. Radiological
tests of cerebral blood flow are used in some jurisdictions to confirm the
clinical diagnosis of brain death. In these cases there is no blood flow
to the brain (substantially different from the case in ventilator
dependent quadriplegia and in persistent vegetative state). Where there is
no flow there cannot be any function.
The diagnosis of death by cardiopulmonary criteria, which includes an
assessment of brain function, is a convenient bedside assessment that
merely identifies a situation where the brain cannot, at present,
function. Usually this is accepted as final, and the situation allowed to
proceed to irreversible brain death, but in some cases we choose to
intervene and attempt cardiopulmonary/cardiocerebral resuscitation. So,
death by cardiopulmonary criteria does not provide certainty as a
proportion of those who fulfil the criteria could and do survive. It is
not a 'gold standard' test for death.
Given that what matters is irreversible death of the brain, Dr Miller's
second premise fails, and the third with it.
David Shaw has written a very good, erudite article on euthanasia,
which is a pleasure to read. However, he is mistaken when he says: ‘If we
accept that it is bad for people to end their life with a period of
suffering … we should help them to die as soon as possible’. (p. 531) This
does not follow. From the premise that it would be good were something or
other to happen, we cannot validly conclude that we – in general or...
David Shaw has written a very good, erudite article on euthanasia,
which is a pleasure to read. However, he is mistaken when he says: ‘If we
accept that it is bad for people to end their life with a period of
suffering … we should help them to die as soon as possible’. (p. 531) This
does not follow. From the premise that it would be good were something or
other to happen, we cannot validly conclude that we – in general or in
particular – are morally obliged to act in such a way that the supposedly
good thing comes about.
It might, for instance, be bad for people to die as virgins if they
do not want to or to die unmarried but it does not follow that we are
morally obliged to have sex with or to marry terminally ill people. Some
people might want to die; they might need to die in order to obtain
eudainonia. It does not follow that we are morally obliged to kill them
or, in some way or other, to help them to die. It does not follow that
euthanasia should be legal far less that it should be available on the
NHS.
Of course, it might be true that we are morally obliged to help those
who want to die to die and that euthanasia should be legal.
Body integrity identity disorder is a very rare condition where
sufferers experience longstanding anguish because there is a mismatch
between their bodies, and their internal image of how their bodies should
be. Most typically, the person is deeply distressed by the presence of
what they openly acknowledge as a perfectly normal leg. Some sufferers
request their limb be amputated.1 We and others have argued that such
req...
Body integrity identity disorder is a very rare condition where
sufferers experience longstanding anguish because there is a mismatch
between their bodies, and their internal image of how their bodies should
be. Most typically, the person is deeply distressed by the presence of
what they openly acknowledge as a perfectly normal leg. Some sufferers
request their limb be amputated.1 We and others have argued that such
requests should be acceded to in carefully selected patients.1-4 As a
result our group at the University of Sydney is developing a programme to
better understand and treat BIID, which will offer amputation if
appropriate.
In a recent paper, Patrone argues that such amputations should be
prohibited.5 He suggests that authors supporting amputation in BIID depend
on analogies with more familiar conditions and then claim that the “the
desires, choices and requests of BIID patients should be held to exactly
the same standards and treated with exactly the same respect as the
desires, choices and requests of any more conventional patient”.5 He
believes that these analogies are invalid and that therefore the arguments
for amputation are invalid.
Patrone concentrates a great deal upon whether or not a decision to
have a particular medical intervention is to be regarded as “rational”.
Unfortunately he makes no attempt to define what he means by “rational”,
so it will be necessary to clarify this before proceeding. We will take a
decision about medical treatment to be rational if it manifests reasonable
practical reasoning that is based on agreed or accepted premises.
COSMETIC SURGERY ANALOGIES
Patrone seems to believe that the singularly unusual nature of the
BIID sufferer’s request may be enough to conclude that they are “as a
type” incapable of making a rational decision about amputation. Believing
that supporters of amputation may share this view, he suggests that
supporters draw analogies with people who request radical cosmetic
surgery, because, he says, in these cases “whether or not the patient’s
motivations are rational is taken to be irrelevant to their ability to
make this decision”.5
He has completely missed the point of these analogies. Supporters of
amputation do not draw analogies to cosmetic surgery because surgeons
don’t care if a patient’s request is rational. Cosmetic surgeons go to
great lengths to assure themselves that their patients’ requests for
surgery are valid.6 Supporters of amputation draw analogies to radical
cosmetic surgery to demonstrate the very thing Patrone finds so hard to
understand - that surgeons will ethically accede to requests for even
bizarre body modification if the patient is competent to request it, and
if it is generally in the patient’s best interests overall.
Patrone also suggests that the cosmetic surgery analogy is flawed
because amputation, unlike cosmetic surgery, “necessarily entails
permanent disability” and “serious harm”.5 There are two problems with
this line of reasoning. First, many requests for body-modification,
frequently acceded to, are permanent and do carry a degree of associated
disability. The prime example of this, an analogy that Patrone studiously
avoids throughout his paper, is gender reassignment surgery, but
irreversibility and some measure of disability are also associated with a
variety of other body modifications such as facelifts, breast reductions
and augmentations and penile implants. The second problem is that the harm
that will follow such modifications, has to be weighed against the
benefits that such operations are aimed at achieving.
Some women who undergo breast reduction will permanently lose their
ability to breastfeed. However, for women who have spent their lives
uncomfortable with the size of their breasts, or who are burdened by
related backache, the harm associated with an inability to breastfeed is
seen as minor compared with the relief of suffering they hope to gain with
surgery. We have now seen five patients with BIID who have wanted a leg
removed. All recognised that amputation would involve a degree of
disability, but all regarded this as a small price to pay to relieve their
suffering. All were keen to obtain a prosthesis to minimise any
disability.
THE JEHOVAH’S WITNESS ANALOGY
In their defence of amputation, Bayne and Levi suggest an analogy
with Jehovah’s Witnesses’ refusal of blood products, to demonstrate that
we should not ignore a patient’s request merely because we do not agree
with the benefits that they feel they will accrue.2 Patrone attacks this
analogy on acts/omissions grounds, suggesting that those who opt for
treatment “divert medical resources away from other patients … put[ting]
other patients in danger”, while those who simply refuse treatment, do
not. This is simply wrong. Sometimes a patient’s decision to refuse
treatment consumes considerably more resources than a decision to accept
treatment. It is well known that Jehovah’s Witnesses’ who undergo major
surgery consume considerably more resources than other patients – longer
stays in ICU for example - precisely because they have refused blood
products.7
PATRONE’S ANOREXIA NERVOSA ANALOGY
Having rejected analogies commonly used to support elective
amputation, Patrone offers his own analogous condition to oppose it –
anorexia nervosa. Patrone sees anorexia as “the best analogy with BIID”,
because both disorders are thought to concern “a discrepancy between body
type and body image, and both express themselves in patient choices that,
were they respected would cause serious physical harm”.
In equating of anorexia with BIID, Patrone reveals a profound
misunderstanding of the phenomenology of both conditions. Patients with
severe anorexia nervosa believe they are too fat, even when their body
weight is so low as to be virtually incompatible with life. They refuse
food because they do not want to be “so fat”. Their decision not to eat
cannot be regarded as rational because the premise that they are fat could
not be accepted by anyone. People with BIID say that the presence of their
limb does not comply with their internalised image of their body and this
discord causes them enormous distress. There is no objective way of
assessing a person’s internalised body image, and only indirect ways of
assessing a person’s distress. Unless there are reasons for believing that
the person is deliberately dissembling, we will tend to accept their
report as true. If this premise is accepted, then, with no other available
remedy for their distress, amputation, even with its inherent problems,
seems a rational choice to make.
CONCLUSION
Requests for amputation in BIID are analogous to requests for
cosmetic mammoplasty or gender reassignment surgery. People with BIID are
deeply distressed by the presence of their limb, and some reason
rationally that since other mechanisms aimed at relieving their suffering
have failed, they will seek amputation in the hope that it may succeed.
When Patrone arrogantly asserts that “BIID patients lack the perspective
from which to make informed evaluative choices about their options
(options that, it must be stressed, include living with the disorder as
psychologically frustrated but able bodied)” it is abundantly clear that
he doesn’t understand the disorder, for it is just this choice that many
sufferers have spent their lives grappling with.
REFERENCES
1. Ryan CJ. Out on a limb: the ethical management of body integrity
identity disorder. Neuroethics 2009;2(1):21-33.
2. Bayne T, Levy N. Amputees by choice: Body integrity identity
disorder and the ethics of amputation. Journal of Applied Philosophy
2005;22(1):75-86.
3. Savulescu J. Autonomy, the good life and controversial choices.
In: Rhodes R, Francis L, Silvers A, editors. The Blackwell Guide to
Medical Ethics. New York: Blackwell; 2006.
4. Ryan CJ. Amputating healthy limbs. Issues 2009;86(March):31-33.
5. Patrone D. Disfigured anatomies and imperfect analogies: body
integrity identity disorder and the supposed right to self-demanded
amputation of healthy body parts. Journal of Medical Ethics 2009;35:541-
542.
6. Crerand CE, Franklin ME, Sarwer DB. Body dysmorphic disorder and
cosmetic surgery. Plastic and Reconstructive Surgery 2006;118:167e-180e.
7. Savulescu J. The cost of refusing treatment and equality of
outcome. Journal of Medical Ethics 1998;24:231-236.
Rosie Steele (1) reports that medical students without religious
affiliation of Oslo and Belfast universities are mainly pro-choice.
However, it is surprising that 48% of Norwegian students do not have
religious affiliation, whereas only 4.7% of Irish students do not have it.
Why was the rate of religious affiliation approximately ten times superior
in Irish students' group than in the Norwegian one? An explanation needs to b...
Rosie Steele (1) reports that medical students without religious
affiliation of Oslo and Belfast universities are mainly pro-choice.
However, it is surprising that 48% of Norwegian students do not have
religious affiliation, whereas only 4.7% of Irish students do not have it.
Why was the rate of religious affiliation approximately ten times superior
in Irish students' group than in the Norwegian one? An explanation needs to be provided. Probably, the question
concerning religious affiliation was not formulated in the same manner for the 2 groups of students -- this could explain the
difference between the two percentages. There could have been a confusion between religious affiliation
(which is the religion transmitted by parents to children) and religious practice.
Moreover, it is worth noticing that there are other significant differences in the two groups. First, the two groups of students are not comparable in size, making the conclusions of this study limited. Indeed, the number of Norwegian students is much lower than the number of Irish students (59 vs. 86): 31% less. Secod, very few Irish medical students have seen the practice of abortion, which is not true of Norwegian students (9.4% vs. 74.6%). As the majority of Irish students has never seen an abortion,their attitude is bound to be not very informative for a health professional. Finally, the legal context of abortion of the students' countries is completely different; indeed abortion is illegal in Ireland but not in Norway.
References
1. Steele R. Medical students' attitudes to abortion: a comparison
between Queen's University Belfast and the University of Oslo. J Med
Ethics. 2009 ;35:390
PREFACE
Recently, escalating controversy has been generated in Italy concerning
end-of-life dilemmas. As a result, some recent health policies adopted by the Italian government
in compliance with the official point of view of the Roman Catholic Church
have rejected published scientific evidence. This article shows three examples of this situation where doctor's
autonomy in Italy is undermined by political power.
PREFACE
Recently, escalating controversy has been generated in Italy concerning
end-of-life dilemmas. As a result, some recent health policies adopted by the Italian government
in compliance with the official point of view of the Roman Catholic Church
have rejected published scientific evidence. This article shows three examples of this situation where doctor's
autonomy in Italy is undermined by political power.
THE "ELUANA ENGLARO CASE"
For sixteen years, Ms. Englaro was in a permanent vegetative state (PVS)
due to a car accident. Before this event, Ms. Englaro had explicitly and
repeatly told her parents that if she had to face a PVS, they should let
her die without providing any vital life support. However, when Ms.
Englaro's tragedy occurred, the opposite occurred. After the initial
treatments in the Intensive Care Unit she was transferred to a long term
care facility where today she is still being cared for.
Her father has been involved for 16 years in legal proceedings to get the
State to respect his daughter's wishes, by requesting the withdrawal of
artificial nutrition (AN). In Italy, authoritative exponents of the Roman
Catholic Church insist that AN is not considered as medical therapy. This
is in complete contrast with the definition of AN by Medical Associations
However, the Italian High Court ruling for Ms. Englaro affirmed that,
"There is no doubt that the artificial feeding by nasogastric tube
constitutes a medical treatment".
Recently the same Court decided that Ms. Englaro's wishes, as represented
by her father, should be respected. In reply, the Minister of Health signed an official document preventing
public and private Italian hospitals from withdrawing AN from Ms. Englaro. Nevertheless, a medical team (one intensivist, ten nurses) withdrew AN from Ms. Englaro on February 6, 2009 and she died on February 9. At the moment a judicial inquiry is set up to investigate the medical team.
THE CASE OF PERSISTENT VEGETATIVE STATE GLOSSARY
The last example is represented by a "Glossary" regarding the PVS,
produced by a medical working group, appointed and chaired by the Vice-
Minister of Health and coordinated by a neurologist, President of the
World Federation of Catholic Physician's Associations.
The main issue of the Glossary is the question of the reversibility of
PVS. Three documents edited by the Multi-Society Task Force on PVS (USA,
1994), including the Royal College of Physicians of London (2003)
and the American Academy of Neurology (2006), represent the world leaders
on this issue. All these documents stipulate end points of: i) 12 months
from the onset of post-traumatic PVS; ii) 6 months for post-anoxic. These
limits today are internationally accepted as a cut-off for PVS definition.
On the other hand, it is evident that the prognostic evaluation must be
decided case-by-case; and the first document edited by the 1994 Task Force
stated that setting time limits gave only a probabilistic value.
Based on this sentence, the Glossary drafters concluded that
irreversibility from PVS could not be determined. They overlooked the
epistemological nature of medicine, in that medical choices must be based
on the highest degree of probability and on the minimum degree of
uncertainty in terms of scientific evidence for each specific illness
balanced together with the patient's best interests.
THE CASE OF NEONATES OF LOW GESTATIONAL AGE
138 physicians and 3 Scientific Boards signed an open letter that was
handed to the Minister of Health opposing a document on the clinical
treatment of neonates of extremely low gestational age (ELGA neonates)
released from the Ministry itself. This document was formulated by the
highest level of Italian Health Institution (Consiglio Superiore Sanità -
CSS) and proposed that gestational age (GA) is not a valid parameter for
evaluation of prematurity. It maintained that it was mandatory to sustain
life of ELGA neonates regardless of "no chances of survival" (
220+6 weeks GA), or those at risk of having severe and multiple
disabilities related to prematurity (230+6, 240+6 GA).
Contrary to the contents of the CSS document, there are two exhaustive
studies and fifteen guidelines from Perinatal Scientific Societies of nine
countries, including Italy, and recommendations from two International
Scientific Societies, giving conflicting advice. Therefore, the CSS
document was instead recommended as a guideline for clinical practice . In
addition, a document from the Italian neonatologists and obstetricians-
gynaecologists task-force (Carta di Firenze) was rejected by the Minister
of Health. This is the first time in the history of Medicine in the
Italian republic that politicians chose to intervene in a medical matter.
CONCLUSION
In regard to ELGA neonates, PVS and AN, all governmental documents have
manipulated the scientific evidence with ideological assumptions, strictly
adopting the official perspective of the Catholic Church. In this way a
great confusion has been created amongst scientific, bioethical, religious
and political domains. .
Furthermore, Italian Doctors involved in PVS patient and ELGA
neonates management and AN treatments are confronted with institutional
rules making their tasks more difficult in balancing clinical decisions
based on best scientific evidence with ethical principles.
This approach constitutes the core of a doctor's professionalism. There
must be restraints from any influence of ideological conditionings,
religious or not. The correct approach should also permit them to confront
and understand the difficult responsibilities arising from the ever
increasing complexity of clinical practice in a society where different
ethical systems coexist.
Given the sincerity and commitment of all parties in debate it is
important to test the coherence of the principles or arguments guiding any
policy. For example, is medical paternalism or participant autonomy
desirable or even necessary in the development of medical science? Such
questions are considered in the context of palliative medicine to analyse
some moral arguments intended to show how to improve clinical practi...
Given the sincerity and commitment of all parties in debate it is
important to test the coherence of the principles or arguments guiding any
policy. For example, is medical paternalism or participant autonomy
desirable or even necessary in the development of medical science? Such
questions are considered in the context of palliative medicine to analyse
some moral arguments intended to show how to improve clinical practice for
vulnerable patients through research. The ideas of altruism and virtue
ethics are discussed to indicate the medical and moral obligations in the
care of patients and participants in research. It is argued that claims
that knowledge needs to be gained or that treatments need to be made
effective are not sufficient: it is concluded that how knowledge is gained
or how treatments are made more effective are both morally and medically
important.
THE MORAL CONTEXT
Keeley believes it is a moral imperative to improve the evidence base
in palliative medicine [1]; this is for him not just a scientific matter
to increase the efficiency or effectiveness of the treatments: he believes
it is morally required. It is on this basis that he offers a particular
variety of moral arguments to justify the need for ‘undertaking good
quality effectiveness research in palliative medicine’ (p757).
He points out that such research is difficult partly because of ‘the
vulnerability of the palliative-care population’ (p757); and of course, it
is the risk of being physically or mentally harmed which is at the centre
of this [2]. In this circumstance, Keeley holds that ‘the need for
effectiveness research in palliative care should be highlighted ...’
(p757). Now, one can understand this emphasis on effectiveness as a way
of minimising physical or emotional harm, but how does one measure this?
For we are not dealing in this situation merely with a comparison of two
factual methods to achieve a certain end, each of which are equally
morally acceptable. One is actually dealing with potential research
subjects rather than future potential patients requiring palliative care;
in other words a particular method is being morally assessed.
Perhaps as a preliminary, one does need in this context to refer to
the perceived Hippocratic injunction ‘Do no harm’; this is not a command
to increase knowledge: it is a plea for the use of knowledge to improve
actual people’s lives. The restriction on medical practice imposed by the
idea of protecting the patient from iatrogenetic causes is a restriction
on medical personnel: do no harm. The purpose of medical research is to
improve clinical practice, its purpose is not primarily to increase
knowledge, but to improve the lives of the sick. This is what is meant by
‘Do no harm’: the proper search for knowledge is within the acceptable
boundaries of care of people [3]. Where this restriction does not occur
and people are used primarily to increase medical knowledge, as has
happened at certain times in human history, the knowledge is poisoned and
may be unusable by the caring doctor.
It may be helpful at this point to remind ourselves that moral
principles and standards are formed in society and constitute the ideal
that the moral individual is sacrosanct. On this basis then, the active
individual is constrained to do right and to refrain from doing wrong. A
central question in this context is whether we have a moral obligation as
a professional to act professionally. This is sometimes obscured because
individuals belonging to groups understand themselves at least partially
in terms of seeking the aims of the group. Commitment is shown when the
member of the group is required by the group to meet certain standards of
efficiency and effectiveness to gain their particular purposes, as when a
medical charity may wish to save lives in conflict situations.
The soldier and the doctor each have a professional obligation to act
professionally but this constraint is not a moral constraint. The
obligations are concerned with ideas of purpose, of efficiency and
effectiveness to which moral ideals may be applied. The soldier or the
doctor may be criticised for failing to meet the required standards but
these standards themselves may be open to moral criticism. The idea of
the constructed purpose is not present in moral standards for they have no
purpose outside their standards. One may serve moral standards through
professional action but this does not show that the actions qua
professional are moral: professional action may be used for good or ill.
The standards of morality may test any standard of efficiency,
effectiveness or purpose.
MORAL ALTRUISM
Keeley’s first argument to justify an improvement in the evidence
base in palliative medicine rests on ‘evidence of untapped altruism
amongst the population of palliative care patients who would be keen to be
involved in such research’ (p757) but a particular concern here is that
altruism is self generated. The freedom of the individual is a central
conceptual requirement in formulating moral criteria; hence the importance
of fully informed consent. One is aware that there are in human history
examples of noble altruism, but one sees too examples of individual
delusion or incompetence or even wishful thinking. However, in the cases
in which Keeley is concerned these failures should not be taken advantage
of, for in the medical profession there is a tradition of doing no harm.
The doctor cannot escape moral censure either by abjuring this medical
tradition or by relying on the potential participant to make the decision
without the rational judgement required by a principle of informed
consent.
One sees in this context that the participant’s fully informed
consent is a necessary condition for acceptable medical research but it is
not sufficient. The medical practitioner’s role is the care of the
patient; there is a guiding idea of what is in the best interests of the
patient. In calculating medical responses to these interests one is
concerned with matters of efficiency and effectiveness; and these will be
weighed in the coinage of the current medical knowledge, materials and
methods available. In other words, regardless of whether the medical
response concerns clinical treatment or research, it is to be carried out
to the best medical and moral standards available. Keeley believes that
‘the development of a culture of research among palliative physicians is
in and of itself a virtue’ (p759). But this idea of virtue is not
necessarily that of moral virtue, and his evidence is inadequate for he
relies on a tautology; ‘The development of a culture in which research and
enquiry are routine will be self-propagating and hopefully exponential’
(p759).
It is fundamental to note that the injunction to do no harm is not a
medical or technical prohibition, it is a moral requirement to treat from
within the limits of one’s knowledge or power. The idea of doing no harm
is not amenable to measures of efficiency or effectiveness; it is an
appeal for moral standards. The pressure for ‘effectiveness research’
(p757) must come from medical practice, not patients, for effectiveness
research is a technical matter resolved from techniques which are morally
acceptable. What this means is that informed consent is required for both
clinical treatment and participation in research, and that idealism or
altruism is to be guided or constrained by it [4]. Altruism is not to be
conceived as a device to override proper consent or to replace the
rational model of informed consent by psychological theories of mental
states.
INFORMED CONSENT
The appeal to ‘justice and equity’ (p757) for palliative research
does not undermine the necessity for informed consent. In this
connection, his reference to polls on the willingness of palliative-care
patients to join certain research projects does not in fact indicate
wholehearted desire; and also, such polls may not be realistic regarding
likely recruitment for difficult research projects. Keeley thinks that
palliative-care patients are sometimes the subject of a clinical
experiment which does not ‘respect the patients (sic) autonomy’ (p760) for
the patient is not aware it is an experiment. Of course, clinical
situations are different to research situations, eg there is an attempt to
gain the individual patient’s benefit; but for an agreement to participate
in research there needs to be such awareness and a wish to participate
gained from sufficient information. His suggestion that to think that
participating in medical research is an important method of avoiding the
idea of ‘a life poorly lived’ (p760) is rather condescending.
Keeley expresses ‘concern ... (for) the autonomy of the individual
patient .... (but feels the emphasis is wrongly placed on what) is, and is
not, permissible in this area rather than an imperative to undertake
research’ (p757). He believes ‘The autonomy of the patient is paramount
... (but this) can be little respected at present as there is little
evidence ... (available for them)’ (p757). His position is that the
principle of autonomy is devalued because of his perceived medical failing
in providing sufficient evidence for informed consent. This puts the cart
before the horse: the requirement of patient autonomy is a given, it is
not weakened by deciding on a basis of poor evidence. To improve
evidence, the researcher needs to design a research protocol to which the
patient can give informed consent. With this in mind, perhaps recruiting
experienced patients or potential subjects to contribute to the required
patient information sheet would help convince research ethics committees
of the value of a research proposal [5].
The current situation is that Keeley seems to acknowledge that there
is little likelihood of the typical palliative-care patient benefiting
personally from palliative research. This leads him to suggest a
motivation of altruism ‘to do good or benefit others without the prospect
of benefit or reward’ (p758), or at least what ‘is true certainly in the
West’ (p758) to follow the golden rule: ‘All things therefore whatsoever
you would that men should do to you, do you also to them’ (758). An
oddity here, of course, is that the golden rule does rely on a specific
reciprocal benefit. Though the essential matter in this regard is that
the concepts of altruism, duty and benefit are independent, one may or may
not gain or provide benefit from one’s duty or altruistic act [6]. With
this conceptual background one may see that Keeley’s opposition to a gate-
keeping role for the local ethics committee is not justified.
Additionally, his presented evidence is a tautology: ‘When normally
accepted and ethically sound protections for subjects (especially for
those who lack independent decision-making) are in place, exclusion of
patients with far advanced disease from research is in and of itself
unethical’ (p758). This is necessarily true; or in the case where a
number of perceived moral courses of action produce equally unethical
outcomes, it is necessarily false.
VIRTUE AND MORALITY
For the early Greeks the idea of virtue was an idea of excellence in
a social setting, ie it would be something learned. One can see from this
that certain habitual action would be sufficient for moral virtue but it
would not be necessary; for sometimes the practitioner demonstrates non-
moral excellence. Following from this Keeley feels that the intellectual
virtue of clinical research is gained ‘through habit’ (p758), but
unfortunately, his argument as stated is again a mere tautology: ‘Unless
clinicians develop the habit and the practice of research such a virtue
will never flourish in an individual palliative clinician, nor, therefore
in the community of palliative physicians in which he or she practices
(sic)’ (p758). He has not succeeded in showing his required relationship
between moral virtue and thinking; he has not shown the intended
connection between research and moral excellence.
In discussing ‘virtue ethics’ (p759) he refers to Aquinas’s use of
‘practice for the good of others’ (p759) and takes medical knowledge to be
an exemplar of this. But we see from particular examples of uses of
medical knowledge that it is not always done for the good of others. As
the early Greeks set it out the excellence of the virtue would be an
indication of its success, ie the virtue would be a means evaluated as
successful in its context, eg an orator’s swaying of a crowd [7]. We are
familiar with causal connection between an action and an effect being
described in terms of means and ends; and here there may be no evaluative
connotations. But in evaluative language an end in itself indicates
intrinsic value; and this evaluation can be applied to causal means.
Hence moral evaluation can apply to both means and ends connected
causally. When one applies the idea of virtue to moral conduct, ie to
actions considered as ends, eg telling the truth, moral conduct is always
a virtue. It is a logical confusion to attempt necessarily to join the
accolade of moral virtue to actions which are valuable because of their
effects, eg as in medical practice. As is apparent with the utilitarian
measure of value, it takes something, eg pleasure, to assess the value of
what may produce pleasure, eg murder, ie it rather misses the point of
explaining moral value. Incidentally, if one includes reference to a
social majority, eg the greatest happiness of the greatest number, one
sees that the paradigm moral judgement may oppose this in favour of
minorities.
But apart from these considerations Keeley has not really noticed
that for Aquinas, for example, ‘knowledge becomes especially virtuous when
it is ... for the good of others’ (p759) ie his use of the word
‘especially’ indicates that the moral use of knowledge may be different
from the possession and use of knowledge. What Aquinas is doing here is
taking an end, eg possession of knowledge, and fitting it on to the early
Greek use of virtue as a means to indicate an excellent or successful
practice. Keeley goes on prematurely to claim ‘the virtuous acquisition
of skills in research ...’ (p759) and one can see that learning may be a
virtue in the sense of being related to later successful action, but this
does not indicate that it is so in the sense of being itself good: the
good learner may learn bad things. He has not offered a plausible link
between palliative care and what he takes to be appropriate medical
research: he has not shown that informed consent is not really necessary
or that medical researchers are well enough informed and morally guided to
dispense with fully informed consent. Altruism is nothing if not self
created. He sees ‘untapped altruism .... (as) a form of disinterested
charity ... (which allows) those nearing the end of their lives a
continued role in wider society and is a store of social capital’ (p759).
Exactly, and it needs to be accessed in a socially acceptable way.
MORAL EFFECTIVENESS
His reference to research in obstetric practices does not help him:
he correctly sees this as a ‘vulnerable time in a woman or a child’s life’
(p759) and believes that vulnerable palliative-care patients should
similarly be researched on. He does not come to the conclusion that
palliative-care patients should be similarly protected through gaining
information to provide informed consent. Of course, political pressure
may speed up research but it is not only the patients who need to sign up:
research is a social practice and needs to meet all the social
requirements [8]. In this connection one may note Keeley’s humility when
he reports: ‘The agreement of experts has been a traditional source of all
the errors throughout medical history’ (p759). But against this he says
‘it requires a child of spectacular bravery or naivety to ... (show the)
consensus-based emperor has no evidential clothes’ (p759).
This metaphor is cashed in terms of ‘a well-conducted RCT to
puckishly refute such dogma’ (p759), and that, of course, is the point:
the participants in a trial are not trial fodder herded in by altruism;
the well-conducted RCT protects participants. They are to be protected in
the same way as the future recipients of successful research; this is a
non-medical, ongoing feature of medical research. The moral dimension
expressed in the normal requirements, ie the dignity, rights, safety and
well-being conditions, protects research and not merely the participants.
Inadequacies in clinical practices are to be removed through adequate
research. He concludes that ‘Without the foundation of a solid body of
clinical effectiveness research, the edifice of medical ethics comes
tumbling down’ (p759) and one can only respond by saying that without a
foundation of medical ethics the edifice of medical research comes
tumbling down.
Author’s affiliations
C Parker
Leeds (East) Research Ethics Committee, Lay Member.
Clinical Sciences Building, Room 5.2, St James’s University Hospital,
Beckett Street, Leeds LS9 7TF, UK
Competing interests: none
REFERENCES
1. Keeley PW. Improving the evidence base in palliative medicine: a
moral imperative. J Med Ethics 2008; 34:757-760. doi:1136.
2. Casarett D. Ethical considerations in end-of-life care and
research. J Palliat Med 2005; 8 (suppl): 148-60.
3. Cassell EJ. The nature of suffering and the goals of medicine (2nd
Edt). Oxford: Oxford University Press, 2004: 25.
4. Isaacs D, Fitzgerald D. Seven alternatives to evidence-based
medicine: what it is and what it isn’t. BMJ 1996; 312:71-2.
5. Ewing G, Rogers M. Barclay, et al. Recruiting patients into a
primary care based study of palliative care: why is it so difficult?
Palliat Med 2004: 18: 452-9.
6. Warnock GJ. The object of morality. London: Methuen, 1971.
7.MacIntyre A. A short history of ethics. London: Routledge and Kegan
Paul, 1971.
8. Ginsberg M. On the diversity of morals. London: Mercury Books,
1962.
Dr. Morati provides a nice history of the function of the
notion of "futility." But she seems to ignore this very
history when moving from the descriptive to the normative
section of her article.
Looking to the USA, Dr. Morati rightly observes that there has
been a major shift to a "procedural" approach to medical
futility disputes. But she mischaracterizes exactly what that
approach entails. In defining the circumstanc...
Dr. Morati provides a nice history of the function of the
notion of "futility." But she seems to ignore this very
history when moving from the descriptive to the normative
section of her article.
Looking to the USA, Dr. Morati rightly observes that there has
been a major shift to a "procedural" approach to medical
futility disputes. But she mischaracterizes exactly what that
approach entails. In defining the circumstances under which an
"intervention should not be performed," Dr. Morati refers to
"general consensus in the medical community," "professional
standards," and "criteria of appropriateness."
But it is precisely the inability to reach a professional (or
broader social) consensus on such standards or criteria that
motivated the shift to a procedural approach in the first
place. As now employed in the USA, the procedural approach is
one of "pure" process. The validity of the "abstention
decision" is determined by the fairness of the method through
which the decision is reached, without reference to external
substantive standards or criteria. Indeed, without consensus
on fine-grained principles capable of resolving disputes,
resort to pure process is the only workable mechanism.
It is ironic that Dr. Gershon, president of the IDSA, would decree
the article by Johnson and Stricker to be full of “inaccuracies and
misleading information” only to mislead readers using inaccurate
information. A look at the science may be enlightening.
The IDSA holds that Lyme disease is easily cured, yet data from
treatment trials cited in the 2006 IDSA guidelines suggests otherwise.
The issue of persiste...
It is ironic that Dr. Gershon, president of the IDSA, would decree
the article by Johnson and Stricker to be full of “inaccuracies and
misleading information” only to mislead readers using inaccurate
information. A look at the science may be enlightening.
The IDSA holds that Lyme disease is easily cured, yet data from
treatment trials cited in the 2006 IDSA guidelines suggests otherwise.
The issue of persistent symptoms following treatment for Lyme disease is a
particularly vexing one, and the etiology of these symptoms remains
unproven. Animal studies and human case reports suggest that persistent
infection with the Lyme spirochete does occur. To investigate this
further, four separate trials studied the use of additional antibiotics in
patients with persistent symptoms following standard IDSA-sanctioned
therapy for Lyme disease. The patients in the retreatment trials had been
ill for extended periods of time. For example, in one study, patients, on
average, had been symptomatic for roughly 4.5 years despite previous
antibiotic therapy. The response to treatment in these trials was mixed.
While one investigator found no improvement with treatment, two others
found a significant and sustained treatment-related reduction in fatigue.
Debilitating fatigue is a prominent complaint in patients with persistent
symptoms following standard antibiotic therapy for Lyme disease. Thus the
statement by Dr. Gershon, “(b)linded, randomized controlled trials show
that long-term antibiotic treatment is not effective for any condition
described as ‘chronic Lyme’ ” is inaccurate and misleading.
The semantics involved in identifying patients who remain symptomatic
after treatment is important. Dr. Gershon notes that there are no
consistent markers for chronic Lyme disease, implying that there is no
evidence for its existence. Yet the IDSA guidelines create a new
diagnostic category, “post-Lyme syndrome”, with a similar problem: “Post-
Lyme syndrome” implies the existence of definitive evidence that the
initial bacterial infection has been cleared. However, available testing
modalities cannot provide such evidence, nor is there a specific biologic
marker for “post-Lyme syndrome”. Rather, the syndrome seems to be defined
by failure of a restricted course of antibiotics to eliminate Lyme disease
-related symptoms in a given individual. It is more likely that “post-Lyme
syndrome” represents a failure of restricted antibiotic therapy to clear
the infection, as outlined in the animal and human studies mentioned
above, rather than a nebulous entity with no clear definition and no
available treatment.
Dr. Gershon contends that Lyme disease is not a fatal illness. This
statement is incorrect. Lyme disease has been associated with fatal
myocarditis and encephalomyelitis (1,2), as well as intrauterine fetal
death (3). Furthermore, tick-borne coinfections with the agents of
Babesiosis, Anaplasmosis, Ehrlichiosis, Rickettsiosis and Tularemia are
well-known direct causes of mortality, and these coinfections can be
transmitted together with the Lyme spirochete (4-7). Because of clinical
ignorance about these diseases and poor laboratory test sensitivity, it is
likely that fatal cases of tick-borne diseases may go unrecognized and
consequently are under-reported (7,8).
Politicians, including the Attorney General of Connecticut, are drawn
into the Lyme disease arena because IDSA has allowed politics to enter
into the discussion of this illness through its restrictive guidelines
process. Generalizable studies that address the many variables affecting
patients with Lyme disease are desperately needed to improve our
understanding of the illness in order to better guide treatment. Until
that work is completed, minds and options need to remain open. The 2006
IDSA guidelines take the opposite approach, which is why they need to be
substantially revised.
1: Tavora F, Burke A, Li L, Franks TJ, Virmani R. Postmortem
confirmation of Lyme carditis with polymerase chain reaction. Cardiovasc
Pathol. 2008; Mar-Apr;17(2):103-7.
2: van Assen S, Bosma F, Staals LM, Kullberg BJ, Melchers WJ, Lammens M,
Kornips FH,
Vos PE, Fikkers BG. Acute disseminated encephalomyelitis associated with
Borrelia burgdorferi. J Neurol. 2004 May;251(5):626-9.
3: Markowitz LE, Steere AC, Benach JL, Slade JD, Broome CV. Lyme disease
during pregnancy. JAMA. 1986 Jun 27;255(24):3394-6.
4: Javed MZ, Srivastava M, Zhang S, Kandathil M. Concurrent babesiosis and
ehrlichiosis in an elderly host. Mayo Clin Proc. 2001 May;76(5):563-5.
5: Bakken JS, Dumler JS. Clinical diagnosis and treatment of human
granulocytotropic anaplasmosis. Ann N Y Acad Sci. 2006 Oct;1078:236-47.
6: Penn RL, Kinasewitz GT. Factors associated with a poor outcome in
tularemia. Arch Intern Med. 1987 Feb;147(2):265-8.
7: Paddock CD, Holman RC, Krebs JW, Childs JE. Assessing the magnitude of
fatal Rocky Mountain spotted fever in the United States: comparison of two
national data sources. Am J Trop Med Hyg. 2002 Oct;67(4):349-54.
8: Millar BC, Xu J, Moore JE. Molecular diagnostics of medically important
bacterial infections. Curr Issues Mol Biol. 2007 Jan;9(1):21-39.
I am wholeheartedly in agreement with Dr. Stricker's and Ms.
Johnson's response to Dr. Gershon's letter. Lyme Disease and its
associated conditions are extremely complex illnesses, and patients who
are suffering from them have their suffering exacerbated by misguided
attempts to "treat ideologically".
Just last week, a new patient gave me the history that her clotted
'pic' line was ignored for hours by an ER p...
I am wholeheartedly in agreement with Dr. Stricker's and Ms.
Johnson's response to Dr. Gershon's letter. Lyme Disease and its
associated conditions are extremely complex illnesses, and patients who
are suffering from them have their suffering exacerbated by misguided
attempts to "treat ideologically".
Just last week, a new patient gave me the history that her clotted
'pic' line was ignored for hours by an ER physician who said he didn't
"believe" in treating Lyme Disease IV, and who had his working diagnosis
as psychiatric, until the infection became fulminant in the ER!
Such needless risk and suffering would be best avoided if we can at
least "agree to diagree" and carry on with supporting the treatment plan
of the specialist who began the treatment. I find the collaboration of my
local colleagues invaluable, as we cope with the increase in severity and
number of cases of tick-borne illnesses of all types in this area.
Many thanks to Dr. Stricker and his colleagues from around the world
for sharing their experiences in treating these conditions, which appear
to have some regional variations in the types of illnesses presenting, as
well as their frequency and severity. I would encourage all who are
interested in these conditions to attend the excellent LDA/IDSA
conferences which will be held in Bethesda, MD in October this year.
The quote in the response by Hugh McLachlan is taken slightly out of context: the full sentence is "If we accept that it is bad for people to end their life with a period of suffering, it does not matter whether that period lasts 100 years, 100 days or 100 minutes: we should help them to die as soon as possible." This argument was aimed only at those who already agree that we should help people avoid prolonged periods of...
Dr Miller's argument is based on the premises that (1) doctors must not kill patients; (2) brain-dead patients are alive; (3) procuring vital organs from brain-dead patients would cause their death (p618). As Dr Miller acknowledges, it is by no means certain that premise (1) stands, as doctors intentionally kill patients every day and this is accepted and acceptable to societies in which it takes place. The second premis...
David Shaw has written a very good, erudite article on euthanasia, which is a pleasure to read. However, he is mistaken when he says: ‘If we accept that it is bad for people to end their life with a period of suffering … we should help them to die as soon as possible’. (p. 531) This does not follow. From the premise that it would be good were something or other to happen, we cannot validly conclude that we – in general or...
Body integrity identity disorder is a very rare condition where sufferers experience longstanding anguish because there is a mismatch between their bodies, and their internal image of how their bodies should be. Most typically, the person is deeply distressed by the presence of what they openly acknowledge as a perfectly normal leg. Some sufferers request their limb be amputated.1 We and others have argued that such req...
Rosie Steele (1) reports that medical students without religious affiliation of Oslo and Belfast universities are mainly pro-choice. However, it is surprising that 48% of Norwegian students do not have religious affiliation, whereas only 4.7% of Irish students do not have it. Why was the rate of religious affiliation approximately ten times superior in Irish students' group than in the Norwegian one? An explanation needs to b...
PREFACE Recently, escalating controversy has been generated in Italy concerning end-of-life dilemmas. As a result, some recent health policies adopted by the Italian government in compliance with the official point of view of the Roman Catholic Church have rejected published scientific evidence. This article shows three examples of this situation where doctor's autonomy in Italy is undermined by political power.
THE "...
Given the sincerity and commitment of all parties in debate it is important to test the coherence of the principles or arguments guiding any policy. For example, is medical paternalism or participant autonomy desirable or even necessary in the development of medical science? Such questions are considered in the context of palliative medicine to analyse some moral arguments intended to show how to improve clinical practi...
Dr. Morati provides a nice history of the function of the notion of "futility." But she seems to ignore this very history when moving from the descriptive to the normative section of her article.
Looking to the USA, Dr. Morati rightly observes that there has been a major shift to a "procedural" approach to medical futility disputes. But she mischaracterizes exactly what that approach entails. In defining the circumstanc...
It is ironic that Dr. Gershon, president of the IDSA, would decree the article by Johnson and Stricker to be full of “inaccuracies and misleading information” only to mislead readers using inaccurate information. A look at the science may be enlightening.
The IDSA holds that Lyme disease is easily cured, yet data from treatment trials cited in the 2006 IDSA guidelines suggests otherwise. The issue of persiste...
I am wholeheartedly in agreement with Dr. Stricker's and Ms. Johnson's response to Dr. Gershon's letter. Lyme Disease and its associated conditions are extremely complex illnesses, and patients who are suffering from them have their suffering exacerbated by misguided attempts to "treat ideologically".
Just last week, a new patient gave me the history that her clotted 'pic' line was ignored for hours by an ER p...
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