In his article ‘Deafness, culture and choice’, Neil Levy argues that
‘the deaf will always be cut off from the buzz of conversation, always
restricted to a narrower range of jobs, always slightly alienated from the
mainstream of political, social, and cultural life.’[1]
He argues that deaf
children will always be somewhat worse off than hearing children, because
‘We are, in many ways, a logocen...
In his article ‘Deafness, culture and choice’, Neil Levy argues that
‘the deaf will always be cut off from the buzz of conversation, always
restricted to a narrower range of jobs, always slightly alienated from the
mainstream of political, social, and cultural life.’[1]
He argues that deaf
children will always be somewhat worse off than hearing children, because
‘We are, in many ways, a logocentric culture – one which is centred around
the voice’.
We can interpret this claim of Levy’s in two ways. One interpretation is
that Levy is making a practical argument that this logocentricity is so
ingrained that we can predict with certainty that it will always remain
central to our culture, and that deaf children will remain worse off. The
other is that Levy is making the claim that our culture is necessarily,
irrevocably logocentric.
Let us consider the latter argument first. Can this really be Levy’s
claim? It is not so hard to imagine a world without speech. Try walking
through your day mentally, replacing spoken language with sign language.
Replace telephones with videophones, and imagine teletext subtitles on
television shows. Wave and smile at your co-workers instead of saying
hello. Not only is such a world thoroughly possible, it is not obvious
that we would be substantially worse off. Some might argue that migrating
to sign-language would disadvantage the blind. Yet in the USA, there are
fewer people who have trouble reading, than those who have trouble hearing
conversation.[2] As a whole, then, our society might be better off if we
migrated to sign. Of course, it would require an enormously difficult and
painful change to migrate a hearing majority to a silent system of
language, and it is this practical difficulty which probably ensures that
such a migration will never happen.
We must assume, therefore, that it is the practical argument which
Levy is making. If this is Levy’s goal, then he means to show us that for
contingent practical reasons such as the difficulty of migrating to sign
language, we can reasonably predict that deaf children will always be
constrained by their deafness. It seems to me that this reasoning, if
anything, supports the central claim of the Deaf – that their deafness is
a constraint only because our society discriminates against those who
cannot hear.
The Deaf are not proposing that we should replace spoken language
with sign language, of course. Neither are they arguing that their
children will not be disadvantaged by being deaf. They are asking that it
be recognised that they are effectively disabled by the hearing majority,
not by some difference in their physiology, and that this distinction
means that if deaf children are worse off than hearing ones, it is because
of society’s discrimination, not because of the actions of the deaf
parents. This argument is not vulnerable to practical arguments like
Levy’s. If we continually discriminate against deaf people when we build
our telephones and engage in our spoken cultural, political and social
customs, then it certainly is through our discriminatory actions that they
are worse off; this fact is not affected by the difficulties we may face
in ridding our culture of its discriminatory structure.
I have yet to see an argument which faces up to the claims of the
Deaf. It seems to me that to establish that the deaf are not discriminated
against, or that the discrimination is not wrongful, we would need to show
that people whose physiology differs from the mainstream have no right of
equal access to our cultural, social, and political life. Perhaps this can
be shown, but I doubt it.
Utilitarian arguments might establish that the discrimination against
deaf people is outweighed by the difficulties involved in migrating the
mainstream to a deaf-friendly society, but they will never establish on
their own that this discrimination does not exist. If it does exist, then
it seems to me that the deaf ought to be allowed their claim that their
disadvantage is the fault of the selfish hearing population, and it does
follow from this that they should be allowed to have their deaf children,
while lamenting that the hearing majority has built a world that limits
the future of their child. After all, we do allow parents from other
minority groups to knowingly have children who will, like them, suffer
from discrimination.
I would suggest that a successful argument against having deaf
children would need to involve the claim that deaf children are worse off
in ways which cannot be changed, no matter what. These will not be social
reasons. Examples might be that deaf children will find it harder to avoid
oncoming trains, or that they will never experience the pleasure of
listening to the singing of whales. These limitations, whilst much less
grievous than the discriminatory social limitations, cannot be changed,
and therefore cannot constitute discrimination. Of course, it may be that
these minor limitations do not present us with enough reason to prevent
deaf parents from having deaf children.
In either case, it is certainly not enough to merely prove, as Levy
does, that deaf children will be worse off than hearing children. Deaf
parents know this, as do the parents of female children, black children,
poor children, and children of religious minorities. If we wish to deny
deaf parents their right to have deaf children, we must either dispute
their claim that they are wrongfully discriminated against, or show that
they are worse off in some necessary, irreparable way.
References
(1) Levy N. Deafness, Culture, and Choice. J Med Ethics 2002;28:284-285
(2) McNeil J. Americans with disabilities: 1994-95. Current Population
Reports, US Census Bureau: Washington DC, 1997: P70-61
We thank Derek Narendra for his carefully considered response to our
recent article.[1] We are pleased that our work stimulated such a
thoughtful reply.
Narendra criticises our analysis on two major grounds. First, he
suggests that a survey such as ours cannot identify patients’ "considered
moral judgments," and therefore that the data are not valid for the
purpose we put them to. Second, he...
We thank Derek Narendra for his carefully considered response to our
recent article.[1] We are pleased that our work stimulated such a
thoughtful reply.
Narendra criticises our analysis on two major grounds. First, he
suggests that a survey such as ours cannot identify patients’ "considered
moral judgments," and therefore that the data are not valid for the
purpose we put them to. Second, he argues that, even if the data could
lead to valid empirical conclusions, it is not clear that these
conclusions should have any implications for normative theories of
bioethics.
As we articulated previously, the conceptual assumption behind our
empirical conclusions was that, "if patients value a dimension of care
highly, then problems in that dimension will increase the likelihood that
they will report negative overall evaluations of the hospital." Narendra
does not directly challenge this assumption, and he underestimates the
ability of patients’ reports to illuminate the patterns of value
structures that lie behind their first-order evaluations. Nevertheless,
he is right that no single study or method of analysis can fully capture
something so rich as "considered judgments." Our work is at best one
small piece of a puzzle by which investigators, using diverse
methodologies, might triangulate on patients’ deeply held views. Our
findings in isolation are less important than their consistency with those
obtained by other researchers using multiple different means.[2]
Narendra’s scepticism that patients’ views should have any
implications for normative bioethical theory raises a critical question
about the professional role of bioethicists: do they speak on behalf of
patients, of moral truth, or of some dynamic interplay between the two?
We favor the latter possibility, in which case we cannot understand how
ethicists might proceed in their work without listening to those they
claim to represent. It would be especially ironic if those who champion
respect for autonomy end up instructing patients, on the basis of first
principles, about how they ought to think or behave.
Contrary to Narendra’s interpretation, we did not link our empirical
findings to normative theory directly, by suggesting that providers are
morally obligated to act in ways that maximise patient satisfaction.
Rather, we argued that those things that substantially impact upon
evaluations of care are likely to be important (perhaps even morally
important) to patients, and should therefore be taken into account in
articulating normative models of health care relationships.
Finally, we do not see respect for persons and respect for autonomy
as independent and conflicting principles, but rather as closely related
and substantially overlapping sets of moral norms. In our view, respect
for persons has numerous dimensions in addition to the obligation to
respect autonomy. If so, and these dimensions are important to patients,
then they deserve greater conceptual and empirical attention than they
have heretofore received.
Differences aside, we agree with Narendra that "an exciting research
itinerary" at the interface of descriptive and normative ethics lies
ahead. We are flattered that, in his view, our work "takes us part of the
way down that path."
References
(1) Joffe S, Manocchia M, Weeks JC, Cleary PD. What do patients value
in their hospital care? An empirical perspective on autonomy centred
bioethics. J Med Ethics 2003;29(2):103-108.
(2) Schneider CE. The Practice of Autonomy. New York: Oxford
University Press; 1998.
In his response to our paper "A stronger policy of organ retrieval from cadaveric donors: some ethical considerations".[1] Professor Harris criticises our
position on
the matter of mandatory posthumous organ donation.[2]
Whilst some of his
comments are fair we believe others to be ill-judged. In this reply to
Harris we not
only defend our position but will raise a new argument to support our
conten...
In his response to our paper "A stronger policy of organ retrieval from cadaveric donors: some ethical considerations".[1] Professor Harris criticises our
position on
the matter of mandatory posthumous organ donation.[2]
Whilst some of his
comments are fair we believe others to be ill-judged. In this reply to
Harris we not
only defend our position but will raise a new argument to support our
contention that
organs should not be taken from the dead against their premortem wishes.
When this
further argument is taken into account, it will be seen that Harris'
proposal, although
perhaps intuitively attractive, does not stand up to scrutiny on either
moral or practical
grounds.
We will begin by conceding two points. First, Professor Harris states
that he is 'not
straightforwardly utilitarian' - we accept this and apologise for any
offence caused by
so describing him. Second, we also accept his criticism that the Internet
sources we
used may not have reflected accurately his views.
Having conceded the above points we now want to deal with Harris'
substantive
criticisms of our position.
1. There are precedents for insisting that the public make sacrifices Harris argues there are precedents for a policy of the sort he advocates,
accordingly he
cites examples of situations in which individuals are sometimes obliged to
make
sacrifices for the public good such as jury service and Coroner's post
mortem
examinations. In the former case he says, "They [the public] may be
called, and unless
excused by the court, must serve". [2] This is not quite true and so we
believe that this analogy fails: people may be fined or
imprisoned if they refuse to sit on a jury but they cannot be compelled to
sit.
Harris' other example, Coroner's PMs, is more powerful - it seems to
directly parallel
the situation under discussion. Harris says "The courts can order
examinations
without any consents being required and despite the fact that these
involve
interference with the dignity of a dead body and the removal of organs. Of
course post
mortems are not usually ordered out of simple curiosity, there are public
safety and
public policy considerations".[2] We wish to make three small points in
response.
The first is that Coroner's PMs are never solely in the public
interest. We accept
that public interest and the interests of future patients with the same
disease is part of
the reason why we seek the cause of death in unusual cases, but it is by
no means the
only reason. Coroner's PMs are often done in cases where foul play or
medical
negligence are suspected - in these circumstances the examination is not
done only for the
public (although the public obviously benefit if a murderer is caught) but
for the dead
person - so that action may be taken against the person who harmed him,
just as it
would be against someone who harmed a still-living person. Post-mortems
for teaching purposes could, perhaps, be said to be purely for the public
good but Coroners' PMs are, we contend, always conducted at least
partially on behalf of the deceased and his or her family.
The second point is that Coroner's post mortems are relatively rare:
hospital post mortems,
which the premortem patient or his relatives are free to refuse, are much
more
common. While the public may not object to having no right to refuse if
they think
that Coroner's PMs happen only rarely (or, as is also possibly the case,
while there is
no public outcry because it is not common knowledge that there is no right
to refuse
this sort of PM) Harris' proposal would involve a widespread use of the
dead and so
would be more likely to provoke public displeasure and so run counter to
the public good.
Thirdly, Coroners' PMs and organ removal for transplantation are not
analogous as, barring those notorious cases a few years ago, all organs
are returned to the
body for burial or cremation following a post mortem: although we do not
deny that
some relatives may well feel repugnance at the idea of the organs being
even
temporarily removed we imagine that some of this will be assuaged by their
return -
this obviously cannot happen in the case of organs removed for transplant.
So we would argue that the cases Harris offers are not wholly
comparable to
mandatory posthumous organ excision and so do not set a precedent for his
proposal. We also assert that there are many circumstances in which
individuals are not compelled to subsume their welfare (or even something
more trivial such as their wealth) for the sake of others. More on this in
section five.
2. Surviving Interests
Harris says "Hamer and Rivlin have spent the main part of their paper
articulating a
conception of posthumous interests that I (and many others) have also
articulated and
in establishing a point that I concede but, which I have argued has scant
moral force
when set against the harm that overriding such interests might prevent".[2] Yet it
seems to us that Harris does not share the view which we set out in our
original paper.
There we argued that the ‘antemortem person’ is harmed if his or her
'surviving
interests' are thwarted. In ‘Wonderwoman and Superman: The Ethics of Human
Biotechnology’ Harris says, “while…persisting interests may be damaged,
the person
whose interests they are cannot be harmed once they are dead”. [3] (our
italics).
Harris says that, during life, “you can harm (or benefit of course)
both the individual
and her interests. Once she is dead only her interests remain to be
harmed”. [3] But it
seems very odd to talk of interests as being ‘harmed’ without referring
back to an
interest-holder (the antemortem person we referred to in our original
paper).
‘Persisting interests’ under Harris’ system, seem like strange entities
indeed and it is
small wonder Harris thinks they are so easily brushed aside and should be
respected
"out of courtesy so to speak". [2] The surviving interests of the dead, on
our account,
carry greater weight than Harris gives them credit for. It is, of course,
open to Harris to say that by 'posthumous interests' he meant only a
person's plans, projects and the like. However, in that case, we contend
that the conception of posthumous interests which we set out in our
original paper was not one to which Harris subscribes.
3. Harris claims that the harms to the dead are 'trivial'. We strongly disagree with Harris here. One way that the dead can be harmed
is by
thwarting their life's wishes and values and doing this is, we claim, far
from trivial.
Throughout this debate both Harris and ourselves have made use of the case
of a
person with religious beliefs which prohibit organ donation without going
into any
further detail. Perhaps a concrete example from one religion, Judaism,
might make it
clear just what such people stand to lose.
According to Halakhah (Jewish law) the dead must be buried whole
unless an organ is
to be used immediately to save another person's life. The reason behind
this is
Pikku'ah Nefesh, i.e. the overriding duty of saving a life. Rabinovitch
writes, "Jewish
law is very strict in its probation of:
a) mutilating the lifeless body;
b) deriving any use or benefit from a cadaver and;
c) delaying the internment of any part of a
corpse ...
However, it is clear that where there is an immediate possibility of
saving a life, the
commandment to save life makes it not only permissible but even obligatory
to
suspend all prohibitions.[4] This would permit (even require) organ
donation under
some circumstances, the donation of a liver for instance to someone with
only hours
to live, but would not permit the donation of kidneys, organs for which
there are
adequate replacement therapy. For a religious Jew therefore, the removal
of his
kidneys would break halakhic law and would not be in the least trivial.
Even if we concede that such interests cannot 'trump' the interests
of the living this is
not the end of the matter.
4. A brief aside about how to compare harms
Professor Harris makes much of our throwaway comment about how difficult
it is to
compare such different harms as thwarted surviving interests and dying for
lack of an
organ. However, we wonder whether he has missed our point somewhat. He
says “we
do this [make such a comparison] in medicine everyday. We compare the
harms of
surgery (scarring, pain, the risks of anaesthesia etc.) with the gains
from the surgery; or
we compare the harms of chemotherapy with the expected gains in terms of
remission…What would we say of a medical team that lamely pleaded, “we are
at a
loss to know how to make this calculation?” [2]
We would agree wholeheartedly that such comparisons can be made when
the harms
and benefits all come to a single person. However, we contend, such a
decision is
difficult to make when the person suffering the harm is not the same
person who reaps
the benefit. To use an example from one of the authors' (Hamer) everyday
work; when a living person wishes to donate a kidney to a loved one, they,
the potential recipient, their families and the medical team engage in a
protracted and difficult debate about whether the donation should go
ahead. Comparing mortality and morbidity risks, possible financial
problems, family tension etc to the benefit of no longer needing to
dialyse is very difficult when the person undergoing the harm is not the
person who will reap the reward. It is hard to quantify the good of being
free from dialysis, and, even if it were quantifiable, it is a further
task to compare that to the harm of having a large scar, possible post
operative complications, a somewhat increased risk of hypertension and so
on - there simply doesn't seem to be any scale on which such differing
things can be weighed and arranged. If it is difficult when the donor
has freely consented to give an organ, how much more complicated would it
be when the donation is not voluntary?
Finally, we also contend, as stated in our earlier paper, it is
simply not appropriate to compare the harms to the donor and to the
thwarted recipient in the way Harris proposes for the following reason -
that we, ordinary citizens, are not compelled to do 'everything we can'
for those with failing organs.
5. The 'duty to rescue'
In the final section of his response, Professor Harris turns his attention
to our assertion
that the plight of those in need of organs does not entitle doctors to
take organs
against the pre-mortem wishes of the dead. Harris says "I have to say that
someone
who does not see that the remediable suffering of others creates
obligations is simply
not a moral agent". [2] Our position does not entail this.
The question to be addressed here is where to draw the line in our
duty to help. We,
and probably a great many other people, would agree with Harris that,
faced with the
situation of the Samaritan in the parable, we should act, and act
immediately. We
may even agree that those who fail to act in this situation should receive
judicial
punishment (see the ‘bad Samaritan’ laws enacted in some European
countries). In
these clear cut cases, where rescue is easy and we are the only ones who
can help,
suffering does (often) engender an immediate duty to help.
We would also agree that help should always be forthcoming from those
who, by the
role they have adopted in society, have a special obligation towards those
in need.
For example, we would usually consider a doctor who refused to help an end
-stage
organ disease patient placed in his care to have failed in his duty to
that patient.
Again, we may consider legal action an appropriate recourse against such a
failure.
However, not all cases of suffering are like this. A great many
people, perhaps most,
feel compelled to provide some help to those in need whose plight is less
immediately
presented than in the case of the Samaritan. Images on television and in
the
newspapers move us to render assistance to those starving in other
countries, by
giving money to aid charities and suchlike. But the obligations generated
in this sort
of case, where the problem is more ‘chronic’, and where we are not
uniquely placed
to assist, are those of charity not justice. We may think it regrettable
if people choose
not to give, or not to help, but this does not give us licence to take
from them by force.
Even among those who give to charity, very few people give so much as to
seriously
alter their lifestyle, even though they know that lives could be saved
with the money.
Yet most people (with the possible exception of Harris and similarly-
minded thinkers)
do not believe that the government (or other agency) is entitled to
forcibly appropriate
our spare cash, even to achieve the laudable aim of saving more lives. We
believe
that the case of patients dying for lack of transplants falls into this
second category. It
may be a shame if someone does not wish to donate their organs but at
worst they are
guilty of a failure to give charity. This brings us to our last point.
6. The ‘Donkey Sanctuary’ Argument
We mentioned in the introduction that we have an additional argument
against Harris’
proposed policy of enforced organ donation. It is this. If Harris wishes
us to ignore the
wishes of the dead in the interests of saving people who are alive, then
it seems that
he is committed to saying that any will in which a bequest is made to
causes other
than that of saving human lives must also be changed and the deceased's
wishes
ignored. If a person left money to for instance the Donkey Sanctuary, the
Battersea
Dogs Home, the Cats Protection League or the Scottish Railway Preservation
Society,
the beneficiary would have to be changed to a charity such as Oxfam or the
NSPCC.
On further reflection we think Harris must go even further. It seems to us
that he
would have to agree that nobody would be permitted to leave any money to
anyone [2]
unless that money was going to be used to save lives. This is as absurd as
it is
unworkable.
It would of course be nonsensical to bring in such laws, but it seems to
us that if
Harris wants to bring in a law that would enable people’s wishes to be
changed to
enable organs to be forcibly removed, he would also be committed to bring
in
legislation to forcibly change any will.
Harris has a response to this point: in a conversation with one of the
authors (Hamer)
he pointed out that there is a precedent for appropriating at least a
portion of dead
people's estates, i.e. death duties. To the response that death duties
take only a
proportion of an estate (in the UK this presently stands at 40% of an
estate above a
tax-free threshold of £255,000), he replied that the organs retrieved
under his scheme
form less than 40% of the total body. But our bodies are not like our estate: they are us, not simply our
belongings. In
many cultures to desecrate a corpse is considered at least as bad a crime
as stealing
from a person's estate. One has only to think of the abhorrence when it
was
discovered a few weeks ago that a Muslim woman’s body was defiled in a
hospital
mortuary.
Secondly, death duties do not apply to all of one's estate, in fact, as
they only apply to
the portion of the estate above a tax-free threshold, in many cases they
do not apply at
all. Even above this threshold, there are ways of avoiding or mitigating
the tax.[2]
However, Harris' proposal would apply to all suitable dead bodies, and
with no get out
clause: this is the source of our objections. Moreover, what Harris
appears not to
have taken account of is that it is the whole of a person’s wish that is
being ignored,
therefore, for him, to talk of percentages in this context makes no sense.
To conclude, to a great extent we agree with Harris that there is a good
case for a
stronger policy of organ retrieval. However, for the reasons given above
we have
shown that not only does Harris require too much by insisting that organ
excision be
mandatory but that his proposal has serious flaws.
Acknowledgement
We would like to thank Professor John Harris for his discussions with the
authors and
his suggestions concerning a draft of this paper. We would also like to
thank Dr Mark
Nelson, School of Philosophy, University of Leeds and to the anonymous
reviewer for their helpful comments.
.
References
(1) Hamer CL, Rivlin MM. A stronger policy of organ retrieval from
cadaveric
donors: some ethical considerations. J Med Ethics 2003; 29:196-200.
(2) Harris J. Organ procurement: dead interests, living needs. J Med
Ethics; 2003;
29:130-4.
(3) Harris J. Wonderwoman and Superman: The Ethics of Human Biotechnology.
Oxford: Oxford University Press, 1992:100.
(4) Rabinovitch, NL. What is the Halakhah for organ transplants? In:
Carmell A,
Domb C, eds. Challenge. Torah views on science and its problem. Jerusalem:
Fieldham Publishers, 1978:482-90.
Five arguments put forward for a "zero tolerance policy" have been
summarised by Cullen, who, we believe, has also hinted at their
weaknesses.[1]
There is the "empirical" claim that sexual contact in the P-P-R is "almost always harmful to the patient". But the evidence in support
of this argument consists mainly of case reports and small case series of
patients receiving psychotherapy. No represen...
Five arguments put forward for a "zero tolerance policy" have been
summarised by Cullen, who, we believe, has also hinted at their
weaknesses.[1]
There is the "empirical" claim that sexual contact in the P-P-R is "almost always harmful to the patient". But the evidence in support
of this argument consists mainly of case reports and small case series of
patients receiving psychotherapy. No representative studies are known.
There is no evidence to suggest that harm following a failed relationship
with a health professional is any different to that following the break up
of a relationship with a non health professional.
Personally, we do not
doubt that intimate relationships between doctor and patient have the
potential to be harmful to patients´ and can have negative effects on
patients´ future ability to establish a trusting relationship with a
doctor.
The second argument considered by Cullen is based on "principles": To
look at the relevant underlying ethical principles and examine whether the
proposed course of action is consistent with each them. Zelas has proposed
a set of preconditions to be met if sexual contact is to be acceptable:
Trust, power balance and consent have been identified. Cullen states that
even if one accepts trust, power balance, and consent as necessary
conditions they do not justify a zero tolerance position. We disagree with
this conditions. Where trust is, balance of power is dispensable.
The third, "virtues-based", argument suggests that the virtues
ethicist considers the virtues necessary in a good doctor and attempts to
demonstrate that a virtuous doctor can not enter into a sexual
relationship with a patient. Cullen criticises that this argumentation
twists the concept of virtues until virtues become duties be followed
regardless of circumstances. We would add that when advice how to act is
based merely on virtues, the principle of action may not be connected with
individual reality and may lack contact with the cultural environment.
The fourth argument in favour of a zero tolerance is an "a priori"
one. It is argued that the P-P-R is defined as displaying certain
properties, e.g. the P-P-R must have "property X" (emotional distance and
detachment). Sexual contact cannot have “property X”. Is it not
unrealistic and does it not disregard professional principles, in
particular those applied in specialties requiring a P-P-R of a close and
personal nature, to demand affective neutrality and detachment between
doctor and patient?
Cullen calls the fifth argument "counterfactual". If sexual contact
between doctors and patients were allowed then there would be unacceptable
consequences. A typical unacceptable consequence would the breakdown of
the trust essential to a P-P-R. The argument asserts that the consequences
of a policy that allowed sexual contact between doctors and patients would
be harmful. Isn't a policy of prohibition more likely to undermine the
patient's trust in his/her doctor? Can right thinking and right feeling
ever be enforced? If right doing has to be enforced, would it not give
rise to fears that laws might be broken?
The history of prohibition is a long one, and rarely has to report
about successes, where attitudes or behaviours were supposed to be
enforceable. According to Leggett the injunction against sexual
intimacies still functions to preserve the good name of the healing
professions. Others have written urging that while such responses may be
appropriate, they should be the outgrowth of serious considerations and
open-minded contemplation of the ethical, moral, and therapeutic issues
involved. We would like to stimulate debate on how doctors and therapists
should handle sexual feelings towards patients and whether there is
adequate cause for the injunction prohibiting any sexual relationships
with patients and for its enforcement by ethical and disciplinary bodies.
We look forward to a social climate where the doctor, when experiencing a
feeling of personal affinity with a patient, is encouraged to reflect on
it so as to identify restricting factors and possible consequences.
Patients may not understand the ethics or the potential harm involved in a
doctor-patient social or sexual relationship, but the doctor should. We
have summarised elsewhere important factors to be taken into account when
considering initiation of a romantic relationship with a patient.
Reference
(1) Cullen RM. Arguments for zero tolerance of sexual contact between doctors and patients. J Med Ethics 1999; 25: 482-486.
the concept of brain death (BD) refers to two different but strictly
related conditions: the death of the brain ("the irreversible cessation of
all functions of the entire brain, including the brain stem"[1]) and the
patient's death certified by neurological criteria.
In his letter, C. Levyman strongly supports both aspects of the
concept. Actually, even if nobody challenges the fact the BD i...
the concept of brain death (BD) refers to two different but strictly
related conditions: the death of the brain ("the irreversible cessation of
all functions of the entire brain, including the brain stem"[1]) and the
patient's death certified by neurological criteria.
In his letter, C. Levyman strongly supports both aspects of the
concept. Actually, even if nobody challenges the fact the BD is a point of
no return, many authors have questioned that BD identifies the loss of all
intracranial functions [2-10] and also the equivalence between BD and the
patients biological death has been called into question [6,8,10-17]. The
debate is very fascinating and intriguing. We believe that labeling either
position as regressive/progressive does not help in the discussion, which
should be open and respectful.
On the other hand, this problem is totally unrelated to our paper,
which dealt with the problem of defining the vital status of non-heart-
beating organ donors (NHBD). We argued that, given current protocols
(which are clearly different from the protocols for brain-dead patients),
at the time of organ retrieval it is impossible to define the death of
NHBD on either neurological [18] or cardio/respiratory criteria.
References
(1) The Uniform Determination of Death Act (UDDA), as expressed by the
President's Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioural Research (1981) Defining death: a report on the
medical, legal, and ethical issues in the determination of death.
Washington, D.C.: U.S. Government Printing Office.
(2) Evans DW, Hill DJ (1989) The brainstem of organ donors are not dead.
Catholic Medical Quarterly. 40: 113-121.
(3) Truog RD, Fackler JC (1992) Rethinking brain death. Crit Care Med
20:1705-1713.
(4) Veatch RM (1993) The impending collapse of the whole-brain death
definition of death. Hasting Center Report 23(4):18-24.
(5) Halevy A, Brody B (1993) Brain death: reconciling definitions, criteria
and tests. Ann Intern Med 119: 519-525.
(6) Singer P (1994) How death was redefined. In: Singer P Rethinking life
and death. The collapse of our traditional ethics. St. Martin's Press, New
York, pp 20-37.
(7) Truog RD (1997) Is it time to abandon brain death? Hasting Center
Report 21:29-37
(8) Kerridge IH, Saul P, Lowe M, McPhee J, Williams D (2002) Death, dying
and donation: organ transplantation and the diagnosis of death. J Med
Ethics 28: 89-94.
(9) Facco E, Munari M, Gallo F, Volpin SM, Behr AU, Baratto F, Giron GP
(2002) Role of short latency evoked potentials in the diagnosis of brain
death. Clinical Neurophysiology 113: 1855-1866.
(10) Truog RD, Robinson MR (2003) Role of brain death and the dead-donor
rule in the ethics of organ transplantation. Crit Care Med, 31(9):2391-
2396.
(11) Danish Council of Ethics (1988). Death Criteria: a report. The Danish
Council of Ethics, Denmark.
(12) Arnold RM, Youngner SJ (1993) The dead donor rule: should we stretch
it, bend it or abandon it? Kennedy Inst Ethics J 3: 263-278
(13) Shewmon DA (1997) Recovery from "brain death": A neurologist's
Apologia. Linacre Quarterly 64:30-96.
(14) Shewmon DA (1998) Chronic “brain death”: meta-analysis and conceptual
consequences. Neurology 51:1538-45.
(15) Shewmon DA (1998) "Brain-stem death", "brain death" and death: a
critical re-evaluation of the purported evidence. Issues Law Med 14: 125-
45.
(16) Shewmon DA (1999) Spinal shock and 'brain death': somatic
pathophysiological equivalence and implications for the integrative-unity
rationale. Spinal Cord 37:313-24.
(17) Shewmon DA (2001) The brain and somatic integration: insights into the
standard biological rationale for equating "brain death" with death. J Med
Philos. 26(5): 457-78.
(18) The Ethics Committee, American College of Critical Care Medicine,
Society of Critical Care Medicine (2001) Recommendations for non-heart-
beating organ donation. A position paper. Crit Care Med 29(9): 1826-1831.
The comments of Marang and Kievit are interesting, but are they relevant?[1]
I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.
1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in cour...
The comments of Marang and Kievit are interesting, but are they relevant?[1]
I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.
1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in court against the defendant? The answer is no, since no one needs to provide evidence against him or herself.
2. Where can a judge then find the information he needs, if the defendant remains silent? The answer seems obvious. Both the patient and possibly the patient-organization may have collected data on the average complication frequency in the whole country or/and the specific hospital, where the defendant works. Let me give an example. A number of years ago the Dutch consumer organization, Consumentenbond, reported that some of its members, who were also patients, complained about the high incidence of complications occurring in the department of gynecology in a hospital in the Dutch town of Amersfoort. The medical director of the hospital threatened that he would sue the Consumentenbond if they would not withdraw their complaint. The Consumentenbond, however, did not retract its accusation and an Inspector of Health confirmed the negligence in the department of gynecology. This led to the resignation of the medical director and some of the gynecologists.
3. Are patients able to determine if a complication has occurred and if so if it is caused by an error or if it has occurred spontaneously? In my opinion this will always remain a difficult matter. But undoubtedly with further experience, the quality of the data, collected by the patient-organization, will improve. Here it should be emphasized, that even for the medically trained staff, it may be difficult to detect a complication and to establish its cause. Finally in malpractice cases the degree in which a complication is the result of an error is, I believe, best left to the judge to decide. He will, in general hear the evidence from specialists representing the plaintiff or the defendant. Occasionally the judge, himself selects a medical expert to help him to establish the cause of the complication.
Reference
(1) Marang PJ, Kievit J. Re: Patient organisations should also establish databanks on medical complications [electronic response to Gebhardt DOH; Patient organisations should also establish databanks on medical complications] jmedethics.com 2003http://jme.bmjjournals.com/cgi/eletters/29/2/115#49
In the Journal of Medical Ethics, Joffe et al. recently published an article titled: What do patients value in their hospital care? An empirical perspective on autonomy
centred bioethic [1] This empirical study evaluates whether patients’ willingness to recommend their hospital to others is more strongly associated with their belief that they were treated with...
In the Journal of Medical Ethics, Joffe et al. recently published an article titled: What do patients value in their hospital care? An empirical perspective on autonomy
centred bioethic [1] This empirical study evaluates whether patients’ willingness to recommend their hospital to others is more strongly associated with their belief that they were treated with respect and dignity than with their belief that they had adequate say in their treatment.[see note 1]
Joffe et al. go on to suggest that confirmation of these empirical hypotheses would constitute a prescription for elevating the principle of respect for persons to the level that the principle of respect for autonomy currently enjoys in our model of the ideal patient-physician relationship ([1] p.104). In other words, they suggest that by some means empirical findings could influence our ranking of the normative principles. Earlier in the article, they make an even stronger claim about the influence of empirical data on our acceptance of normative principles. They suggest that if it were demonstrated empirically that some patients prefer to delegate medical decisions to health care professionals a serious challenge would be levied against the normative assumptions underlying the principle of respect for autonomy, at least under the mandatory autonomy view, which holds patients not only have a right but also an obligation to act autonomously ([1] p.103). In light of many recent empirical studies challenging the centrality of patient autonomy and shared decision-making in bioethical theory, I think it is instructive to evaluate the means by which empirical findings, like those offered in Joffe et al., strengthen or weaken our arguments for ethical principles. In particular, I will be interested in how Joffe et al. propose their data lead them to the normative conclusions they reach.
In the last paragraph of their essay, Joffe et al. write, “we do not recommend that patients’ perspectives should unilaterally determine ethical frameworks. We do, however, believe that data such as those presented here can contribute to the search for reflective equilibrium in bioethics”([1] p.107). The term “reflective equilibrium,” as the authors note, was introduced by John Rawls. At least in its first instance, it refers to a way of constructing a moral theory by balancing one’s considered moral judgments against one’s moral principles, until one’s judgments and principles form a consistent set—that is, a moral theory (Rawls [2], p.288). Joffe et al.’s idea seems to be that by surveying patients’ perspectives they will be able to capture one side of this equilibrium, considered moral judgments or moral principles (they do not specify which), and in so doing contribute to the desired end: a consistent ethical framework to govern medical encounters, built (at least in part) from the principles and moral judgments of the patient community. Whatever the merits of this goal, however, Joffe et al. fail to capture either the considered moral judgments or the moral principles of those they survey and so fail to contribute to the moral theory they seek to construct.
Rawls defines considered moral judgments as those judgments in which our moral capacities, which he considers analogous to our linguistic capacities, are “most likely to be displayed without distortion”--e.g. those offered without hesitation, given without strong emotions like fear, and made in the absence of conflicting interests (Rawls [3] p.47). The distinction between considered judgments and judgments generally is important. When constructing a moral theory for a particular community—for instance, the patient community—we want to use only those judgments that reflect the respondents’ real moral sensibilities, and not those stemming from superficial prejudices or their mood on the day they happen to respond. This raises two important questions, however, for researchers, like Joffe et al., using the reflective equilibrium: (1) precisely how considered do considered judgments have to be if they are to count, and, more practically, (2) how can a researcher know whether he or she is collecting them (i.e. what survey method, if any, is appropriate for the task)? While it is difficult to give a positive answer to these questions (and I will not attempt to do so here), some survey methods, such as the mailed questionnaires Joffe et al. use, seem particularly inadequate. Rawls suggests certain external conditions favor the formation of considered judgments: “the person making the [considered moral] judgment is presumed…to have the ability, the opportunity and the desire to reach a correct decision (or at least, not the desire not to)”(Rawls [3], p.48). Very likely, however, many of Joffe et al.’s respondents lacked the necessary ability, opportunity, or desire to reflect on their moral judgments when responding to the questionnaire they received in the mail. Furthermore, even if a number of patients did offer legitimate considered judgments, there is no way to distinguish these from those made by respondents’ who lacked the requisite ability or desire. While the size of Joffe et al.’s study is of value for its ability to more accurately reflect a population’s response to its survey questions, because of the practical limitations that come with its size, the study falls short of capturing patients’ considered moral judgments.
Any empirical approach, like Joffe et al.’s, using reflective equilibrium faces a second challenge: why do we want peoples’ considered moral judgments to influence our ethical theories in the first place? In his influential critique of reflective equilibrium, DW Haslett writes, “given the wide differences between people’s considered moral judgments, and given that these differences are, as we know, largely just a reflection of differences in upbringing, culture, religion, and so on, it would appear that, far from having a reason for giving people’s considered moral judgments initial credibility, we have instead a reason for initial skepticism”.[4]
If moral judgments are liable to reflect superficial prejudices, one could argue, considered moral judgments are liable to reflect deep-seated ones. Surely this prejudice is something ethicists would like to overcome, not codify. While I do no think this challenge is insurmountable, [see note 2] it does demand that researchers justify the inclusion of considered judgments in ethical theory before using the method of reflective equilibrium. Joffe et al. have failed to do this.
Joffe et al.’s study is susceptible to a second line of critique. Even if the study’s use of mailed surveys is appropriate, the study fails to capture either patients’ considered judgments or principles, because, put simply, it doesn’t ask for considered judgments or principles. Instead, it asks patients whether providers respected their person or respected their autonomy, and then tests patients’ responses to these questions against whether they report being satisfied with their care. If a provider’s acting with respect for persons is a better predictor of patient satisfaction than her acting with respect for autonomy, Joffe et al. conclude that the principle of respect for persons should be assigned as much importance ethically speaking as the principle of respect for autonomy. As should be clear, this conclusion does not follow from Rawls’s conception of how one constructs a moral theory. In a Rawlsian view .[see note 3] , a moral theory requires knowing which principles patients hold, not whether those principles are associated with patient satisfaction. Joffe et al. seem to be operating with an underlying utilitarian assumption to the effect that what we ought to do ethically speaking is whatever will lead to the greatest patient satisfaction. Though there may be reasons for accepting this utilitarian assumption (which Joffe et al. do not provide), certainly there are others for rejecting it. For instance, though patient satisfaction may give a hospital a very good reason to change a policy, we probably do not want to say this reason is a good ethical reason. It is just good business sense. This is an especially important point given the principles that Joffe et al. evaluate. Respect for autonomy and respect for persons are traditionally viewed deontologically--that is it terms of duties or rights, which are valued for their own sake rather than the consequences (e.g. patient satisfaction) that they produce. In any case, these utility considerations take us far from patients’ actual moral views, the very things Joffe et al., by invoking Rawls’s reflective equilibrium, propose to capture.
Lastly, there is a question of their instrument’s validity. As I have been arguing, Joffe et al. claim to assess whether patients are treated according to the principles of respect for autonomy and respect for persons. Yet, their single item assessing respect for autonomy - the question, "do you feel you had your say?" - does not do the principle justice. The principle of autonomy not only requires that the health care provider ask the patient for his opinion, but also that she act on the patient’s opinion. Their instruments are similarly inadequate for the principle of respect for persons, which, they suggest, includes "autonomy, fidelity, veracity, avoiding killing, and justice" as well as "respect for the body, respect for family, respect for community, respect for culture, respect for the moral value (dignity of the individual), and respect for the personal narrative"(104). How are we to know whether patients had all or any of these in mind when they answered the question, “did you feel like you were treated with respect and dignity while you were in the hospital?” Joffe et al. acknowledge that these ethical concepts are a bit unwieldy for a survey of manageable length. However, these practical considerations should be used not only to excuse the study but also to question its ability to clarify the ethical concepts it claims to assess. They should prod us to ask, regardless of the survey’s scale and the limitations its size produces, does this survey really address what we mean by the principles of respect for autonomy and respect for persons?
With any empirical study in bioethics, there is a gap between the empirical hypothesizes the study confirms and the normative conclusions its authors would like to draw from it. In their article Joffe et al. hoped to bridge this gap by invoking Rawls’s notion of the reflective equilibrium. As I have explored, however, Joffe et al.’s study does not contribute to either side of the reflective equilibrium they imply, and, thus, they fail to demonstrate how their findings challenge the centrality of autonomy and shared decision-making in bioethics.
Joffe et al.’s failures are instructive, however, in so far as they suggest how we might better bridge research and theory. The use of the reflective equilibrium in empirical research has promise, provided researchers are clear about:
(1) how to define considered moral judgments and/or principles,
(2) how their methodology capture these judgments and/or principles reliably,
(3) how the inclusion of considered moral judgments strengthens rather than weakens bioethical theory, and
(4) how their instruments are valid for the judgments or principles they mean to assess.
In addition, empirical research can contribute to bioethics by questioning the assumptions implicit or explicit in our normative views. Joffe et al. try to do just this when they argue that patients’ desire to delegate decision-making challenges the mandatory autonomy view, in the introduction of their paper ([1] p.103). However, if empirical findings are to defeat a particular normative principle, the assumption those findings challenge must be logically necessary for our holding that principle. For instance, without showing patients’ desiring autonomy is necessary for our holding the mandatory autonomy view, the studies that Joffe et al. cite, even if valid, can be interpreted variously as devaluing the mandatory autonomy view or as recommending that we better educate patients on the value of autonomy. This normative question cannot be settled empirically.
Empirical researchers have the potential to contribute substantially to bioethics, but their work needs the kind of philosophical and empirical rigor that comes from truly interdisciplinary collaboration and must be informed by a careful reflection on the proper relationship between descriptive and normative ethics (Sulmasy and Sugarman).[4] Joffe et al. take us part of the way down that path. An exciting research itinerary lies ahead.
References
(1) Joffe S, Manocchia M, Weeks J C, Cleary P D. What do patients value in their hospital care? An empirical perspective on autonomy centred bioethics. J Med Ethics 2003; 29:103-108.
(2) Rawls J. The independence of moral theory. In: Freeman S, editor. Collected papers / John Rawls. Cambridge, MA: Harvard University Press, 1999. p.286-302.
(3) Rawls J. A theory of justice. Cambridge, MA: Harvard University Press, 1971.
(4) Haslett DW. What is wrong with reflective equilibria? The Philosophical Quarterly 1987; 36(148):305-311.
(5) Sulmasy DP, Sugarman J. “The many methods of medical ethics (or, thirteen ways of looking at a blackbird).” In: Sugarman J, Sulmasy DP, editors. Methods in Medical Ethics. Washington, D.C.: Georgetown University Press, 2001.
(6) Delden JJM, Thiel GJMW. Reflective equilibrium as a normative-empirical model in bioethics. In: Burg W, Willligenburg T, editors. Reflective equilibrium: essays in honour of Robert Heeger. Dodrecht: Kluwer Academic Publishers, 1998. p. 251-259.
(7) Rawls J. Political liberalism. New York: Columbia University Press, 1993.
Notes
Note 1:
Joffe et al. also evaluate whether patients’ reporting they had confidence and trust in their health care providers significantly predicted whether they would recommend their hospital to others. For simplicity’s sake, I only address Joffe et al.’s treatment of the respect for persons and the respect for autonomy principles in this response.
Note 2:
See, for instance, Delden and Theil,[6] in which the authors convincingly argue that a reflective equilibrium-like methodology may be valuable for capturing the norms of health care providers and that knowledge of these norms may guide individual providers.
Note 3:
I say “a Rawlsian view” rather than “Rawls’s view” because in his Theory of Justice Rawls advocates balancing a single person’s considered moral judgments (e.g. Rawls’s or his reader’s) with a single person’s moral principles (Rawls [3]p.50). Although he later gestures towards reflective equilibrium a an exercise that involves the considered moral judgments of others (Rawls [7], p.8), it is probably safest to say “Rawslian.”
Since the 50s,with the work of Guillan and Mollaret, there has been a
preoccupation with the point of no return in brain activity;
these French authors choose the expression “coma depassé”. After the first
and ethical heart transplantation in South Africa, performed by
the Barnard brothers, the medical world was suddenly thrown into a debate about the definition of death. The
Harvard ad hoc Committee was...
Since the 50s,with the work of Guillan and Mollaret, there has been a
preoccupation with the point of no return in brain activity;
these French authors choose the expression “coma depassé”. After the first
and ethical heart transplantation in South Africa, performed by
the Barnard brothers, the medical world was suddenly thrown into a debate about the definition of death. The
Harvard ad hoc Committee was the first to put the neurological and ethical
issues in a more traditional way, considering the definition of brain
death as death itself. At present, we have a lot of protocols to
determine brain death, and many ancillary
examinations to confirm the clinical diagnosis, from the old EEG criteria of the Harvard committee to the up-to-date flow and metabolic
analyses existing today, such as transcranial Doppler examination, evoked
potentials, SPECT, angio-MR, and so. There is strong evidence in the medical
literature to support the definition of brain death as the death itself, using the protocols for both transplanted and non-transplanted cases. Of course, we have an ethical problem at this point, but to use only heart criteria to indicate death is to refuse to acknowledge the lack of activity in the central nervous system as the mark of death. The initial definition
of brain death is modified to brainstem death by Christopher Pallis and,
more recently, to the concept of whole brain death, as pointed out by Calixto
Machado. With appropriate measures and trained professionals,
brain death criteria vary little throughout the world, as a recent paper by Eeelco Widjics shows. All of the research that has been carried out by
neurologists, intensivists, anaesthetists, and participants in organ transplantation teams, should make us certain that lack of brain function is the point of no return.
Reintroducing the heart into the definition of death is regressive,
provides no more ethical standard than the brain criteria, and could promote (again) interminable discussions of death, with no practical and
bioethical advantage. This would be regressive thinking and could overshadow more than 30 years of research by groups throughout the world in this field.
Dr. Fessler discusses in detail the implications of starvation induced psychological changes for the ethical treatment of hunger strikers,[1] but cannot bring himself in his conclusions to deviate from respecting the competent hunger striker's decision to continue to fast until death. This is clearly also the virtually unanimous Western ethical consensus, giving autonomy the priority over life.
Dr. Fessler discusses in detail the implications of starvation induced psychological changes for the ethical treatment of hunger strikers,[1] but cannot bring himself in his conclusions to deviate from respecting the competent hunger striker's decision to continue to fast until death. This is clearly also the virtually unanimous Western ethical consensus, giving autonomy the priority over life.
In another publication [2] I reported a contrary decision of an Israeli district court in the case of a hunger striking prisoner which stated categorically that when human life conflicts with human dignity the preservation of life takes precedence. In this case, as well as others, including one cited in the International Red Cross Committee document on the subject, the prisoner, after being force-fed, expressed his gratitude at his life having been saved against his expressed opposition. This is not infrequently the case. Hunger strikers who are competent by all standard criteria may often be trapped into continuing onto death by their own rhetoric and pride, as well as by their embarrassment from their political compatriots. When force-fed they can retain their pride and conviction at not having capitulated- and, as a bonus, keep their lives as well, enabling them to use their talents in their continuing struggle for their cause. It is sad that the rigid adherence to the value of autonomy at all costs has caused the death of so many young and often idealistic young people.
References
(1) Fessler DMT. The implications of starvation induced psychological changes for the ethical treatment of hunger strikers. J Med Ethics 2003;29:243-247.
(2) Glick SM. Unlimited human autonomy - a cultural bias?
N Engl J Med 1997 Mar 27;336(13):954-6.
Gebhardt in his brief report pleads for patient organisations to establish databanks on medical complications. Given the references (e.g. to a journalist article by Paans entitled “Medical errors to be kept secret”) and the lack of argumentation, there is substantial danger of misinterpretation of the current situation, which in turn may frustrate the process of increased transparency. We would therefore li...
Gebhardt in his brief report pleads for patient organisations to establish databanks on medical complications. Given the references (e.g. to a journalist article by Paans entitled “Medical errors to be kept secret”) and the lack of argumentation, there is substantial danger of misinterpretation of the current situation, which in turn may frustrate the process of increased transparency. We would therefore like to respond to this by giving background information and reasons for some of the choices that were made with respect to the registry of complications mentioned by Gebhardt.
First, a distinction needs to be made between an error and an adverse outcome, which is often confused. Given the referral of Gebhardt to the journalist article in which the same registry of adverse outcomes is discussed, but with the title referring to errors, both Gebhardt and the journalist think of errors and adverse outcomes to be the same thing. However, an error refers to the process in which something has gone wrong, to a sub-standard performance, regardless of the outcome. It has been explained by others that such a judgement may have a degree of subjectivity.[1] An adverse outcome refers to the outcome which is unwanted, but which not necessarily implies that an error has been made. This is why the term ‘adverse outcomes’ is used rather than the term ‘complications’, since the latter term is often confused with an error being made. The registration of medical complications that Gebhardt refers to, is a registration of surgical adverse outcomes, guided by an unambiguous definition of the term “adverse outcome”, of which only a small percentage is related to errors. Furthermore, some errors will be missed in this registration, i.e. errors which have not lead to adverse outcomes.
Secondly, with respect to the confidentiality, this is relevant in particular for the initial years of such a registry in which it is thoroughly tested and the accuracy of the registration may vary widely between participants. Nothing is gained by false-positive signals with respect to high adverse outcome incidences in certain hospitals, except perhaps by flashing headlines in news papers. In this respect one may compare the development of such a national registry to the development of a new drug, in which case no one argues confidentiality and thorough testing until proven safe. Moreover, a pharmaceutical company will probably be sued if it markets a new drug without proper research. It is intended that after this first period, national adverse outcome data will become available to the public with respect to probabilities on an adverse outcome, given certain types of surgery.
Finally, what does the patient want? (see Box 1)
Box 1
Patients need information to make a well informed choice
What is a good doctor and what is a good
hospital? This simple question is not easy to get answered for individual
patients who need a good diagnosis and the best treatment. The NPCF (Dutch
Federation of Patients and Consumer Organisations) and its member
organisations have published several consumer guides for specific diseases
to help patients to find their way in the labyrinth of the health care
system. They have experienced many difficulties in getting access to
relevant information of doctors organisations and insurance companies.
Therefore the NPCF wants to cooperate with these organisations to create
consumer information, based on the important and relevant data that are
available. A joint project for a databank on best practices will start in
September.
Patients are not interested in black
lists of doctors and malpractices but they prefer good and best practices
to make a well informed choice for a doctor or hospital. They need
consumer information on objective parameters like the risk on infections
in a hospital, the specific skills of a doctor, how many patients with
this specific disease a doctor treats a year etc. Patients also like to
receive subjective information on a specific hospital or doctor: how is
the communication between a doctor and his patients, does the team give
enough information and support when needed etc. This experience based
information is often available among patients organisations.
The NPCF has chosen to work together with
organisations of health care providers and insurance companies to use
parts of their databanks as a basis for consumer information. A task of
the NPCF is to translate the data to consumer information that meets the
needs of the patients, based on research and experiences of patients.
Joint efforts are needed to make this
important information accessible for doctors and patients!
Dr Iris van Bennekom, Director NPCF
International research has shown that patients do not use public information on performance of hospitals or doctors for their choice of treatment or hospital, among other because they do not understand and do not trust these data. This also applies to adverse outcome data. For the interpretation of hospital specific adverse outcome incidences it is vital to know the context, since e.g. older, sicker and more complex patients have higher probabilities on adverse outcomes.[2] It is therefore vital that a reliable registry is established that can be trusted and understood both by medical professionals and the public. For this reason, the Association of Surgeons of the Netherlands and the Dutch Federation of Patients and Consumer Organisations (NPCF) collaborate with respect to the national surgical adverse outcome registry, in particular to produce information that is relevant for patients with respect to treatment and hospital choices. Supported by international literature, the NPCF holds the view that patients are not primarily interested in adverse outcome data, since patients are aware that they need the context to be able to interpret these data. Patients are more interested in experience of doctors or hospitals to treat certain disease or to perform certain operations, since they want the question answered ‘What is the best place to go for this type of problem?’. That this doctor or hospital will probably have a high adverse outcome record is not relevant, since it may well be explained by the complex patients that are referred to more experienced doctors. As argued in a previous paper,[3] it is essential that there is an increased and mutual trust between the medical profession and patients’ organisation, that supports a combined effort to improve the quality and availability of patient information. Such initiatives will benefit both patients and doctors, and are too important to be frustrated by references to “powers that must be kept under control”.
Dr PJ Marang- van de Mheen
Epidemiologist
Association of Surgeons in the Netherlands
Professor Dr J Kievit
Surgeon and Head of Department of Medical Decision Making
Leiden University Medical Centre
References
(1) Hayward RA, Hofer TP. Estimating hospital deaths due to medical errors: preventability is in the eye of the reviewer. JAMA 2001;286(4):415-420.
(2) Kievit J. Regarding covering-up: a database for registration of adverse outcomes (in Dutch). Med Contact 2001;56(48):1777-1779.
(3) Marshall MN, Shekelle PG, Leatherman S, Brook RH. The public release of performance data. What do we expect to gain? A review of the evidence. JAMA 2000;283:1866-74.
Dear Editor
In his article ‘Deafness, culture and choice’, Neil Levy argues that ‘the deaf will always be cut off from the buzz of conversation, always restricted to a narrower range of jobs, always slightly alienated from the mainstream of political, social, and cultural life.’[1]
He argues that deaf children will always be somewhat worse off than hearing children, because ‘We are, in many ways, a logocen...
Dear Editor
We thank Derek Narendra for his carefully considered response to our recent article.[1] We are pleased that our work stimulated such a thoughtful reply.
Narendra criticises our analysis on two major grounds. First, he suggests that a survey such as ours cannot identify patients’ "considered moral judgments," and therefore that the data are not valid for the purpose we put them to. Second, he...
Dear Editor
In his response to our paper "A stronger policy of organ retrieval from cadaveric donors: some ethical considerations".[1] Professor Harris criticises our position on the matter of mandatory posthumous organ donation.[2]
Whilst some of his comments are fair we believe others to be ill-judged. In this reply to Harris we not only defend our position but will raise a new argument to support our conten...
Dear Editor
Five arguments put forward for a "zero tolerance policy" have been summarised by Cullen, who, we believe, has also hinted at their weaknesses.[1]
There is the "empirical" claim that sexual contact in the P-P-R is "almost always harmful to the patient". But the evidence in support of this argument consists mainly of case reports and small case series of patients receiving psychotherapy. No represen...
Dear Editor
the concept of brain death (BD) refers to two different but strictly related conditions: the death of the brain ("the irreversible cessation of all functions of the entire brain, including the brain stem"[1]) and the patient's death certified by neurological criteria.
In his letter, C. Levyman strongly supports both aspects of the concept. Actually, even if nobody challenges the fact the BD i...
Dear Editor
The comments of Marang and Kievit are interesting, but are they relevant?[1]
I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.
1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in cour...
Dear Editor
In the Journal of Medical Ethics, Joffe et al. recently published an article titled:
What do patients value in their hospital care? An empirical perspective on autonomy centred bioethic [1]
This empirical study evaluates whether patients’ willingness to recommend their hospital to others is more strongly associated with their belief that they were treated with...
Dear Editor
Since the 50s,with the work of Guillan and Mollaret, there has been a preoccupation with the point of no return in brain activity; these French authors choose the expression “coma depassé”. After the first and ethical heart transplantation in South Africa, performed by the Barnard brothers, the medical world was suddenly thrown into a debate about the definition of death. The Harvard ad hoc Committee was...
Dear Editor
Dr. Fessler discusses in detail the implications of starvation induced psychological changes for the ethical treatment of hunger strikers,[1] but cannot bring himself in his conclusions to deviate from respecting the competent hunger striker's decision to continue to fast until death. This is clearly also the virtually unanimous Western ethical consensus, giving autonomy the priority over life.
In a...
Dear Editor
Gebhardt in his brief report pleads for patient organisations to establish databanks on medical complications. Given the references (e.g. to a journalist article by Paans entitled “Medical errors to be kept secret”) and the lack of argumentation, there is substantial danger of misinterpretation of the current situation, which in turn may frustrate the process of increased transparency. We would therefore li...
Pages