Pokroky v medicíně z hlediska technologie a klinických zkušeností vedly k prohlubování specializace, ale za určitou cenu. Tato cena zahrnuje nejen nesmírné ekonomické náklady, ale i cenu spočívající v „dehumanizaci“ péče o pacienta, snížení důvěry k lékařskému stavu a zdravotnictví vůbec a následně k lidskému utrpení. Popáleninové úrazy jsou katastrofou svým charakterem a vyžadují specializovanou, intenzivní dlouhodobou léčbu, s níž jsou spojeny etické a psychologické problémy, často komplikované řadou individuálních faktorů. Některé vyplývají z Kódu práv pacientů nejen v ČR a přispívají k DNR rozhodnutí (do-not-resuscitate-orders). Nejen kvantita života, ale i kvalita života by měla být zvažována obzvláště u popálenin. Kritickým faktorem je věk. U pacientů vysokého věku příliš sofistikovaná léčba může ve skutečnosti přispívat k utrpení. V jakémkoliv věku proces hojení s jizvením představuje zvláštní typ znetvoření. Tento „burn image“ vyvolává u veřejnosti spíše odpor než soucit. Nepostižení jedinci svými negativními přístupy a postoji vytvářejí a udržují „handicap“ postižených a stupňují trvající břímě utrpení u popálených pacientů.
Klíčová slova: etické problémy u popálenin – popáleniny ve stáří – dětské popáleniny – kvalita života – marné léčení – příkaz neresuscitovat
Authors place of work:
Prague Burn Centre, 3rd Medical Faculty Charles University and Teaching Hospital Královské Vinohrady Prague, head prim. MUDr. Ludomír Brož
Published in the journal:
Vnitř Lék 2010; 56(7): 681-685
80. narozeniny předsedy České lékařské společnosti J. E. Purkyně prof. MUDr. Jaroslava Blahoše, DrSc.
Advances in medical technology and practices have been associated with increasing medical specialization, but they have developed at a price. This price has included not only enormous financial costs, but the additional cost of dehumanized patient care, diminished confidence in the medical staff and, consequently, human suffering. Burn injuries are catastrophic in scope and require specialized, intensive and prolonged treatment from which ensure ethical and psychological problems often complicated by many individual factors. Some of them arising from the Code of Patients Rights not only in the Czech Republic and contribute to DNR decisions (do-not--resuscitate). Not only “Quantity” of life but also “Quality” of life should be considered, particularly in burns. Critical factor is age. In old patients more sophisticated medical knowledge and practice may actually contribute to suffering. At any age scarring represents a special type of disfigurement. The “burn image” is more likely to evoke public avoidance than sympathy. The non handicapped by their negative attitudes help create and perpetuate the handicap and the consequent burden of suffering in burn patients.
Key words: ethical problems in burns – geriatric burns – paediatric burns – quality of life – futile treatment – DNR orders
Surgeons have been placed at the first line of burn care regarding
both survival and amelioration of quality of life. The moral career of surgeons
has changed with the possibilities of decision and the need for some rules for
decision making, which are still called up to lead the care. In 1928 Sir
Robert Hutchinson published in the British Medical Journal: “Every doctor must
be a judge. We can increase our knowledge by study and experience, but
judgement seems to be an inborn faculty – the result of a union of
mind and character which a man either has or has not. It may be improved
only by general mental culture, and not by pure scientific training.” An other
quotation – more than 200 years old exemplifies changes in medicine.
Then, medical students were taught by Samuel Johnson: “It is our first duty to
The true service to the society
has changed over centuries, especially, during the last three decades. There
emerged ethical problems in the practice of medicine due to advances in
science, along with alterations in law and societal perceptions. Traditionally,
the doctor’s duty has been to the patient and this duty only has extended to
the family when the patient has become incompetent.
The Code of Patients Rights in
the Czech Republic (set up on February 1992) states that patients are entitled:
to respectful and professional
treatment given by qualified workers;
to know who is in charge of them;
to be informed so as to be able
make decisions regarding the health care provided;
to the presence of their own
family (very important for burn care);
to refuse treatment (it does not
concern the acute phase of burn care);
to give or withold consent to
to access to confidential medical
to continuity of treatment after
discharge (very important for burn care);
to be informed when non‑standard
or experimental treatment will be used;
to respectful care when dying;
to respect the internal order of
the health care establishment.
Recently, the focus on the
patient’s right to refuse treatment has shifted to the patient’s right to
demand treatment, even if doctors believe that such treatment is futile.
“Right to care” cases are the
next step in defining the boundaries of patient autonomy. These situations
involve a conflict of values as some families demand continuation of care
even if there is no chance of recovery. That is an other aspect to the dilemma
we now face: whether a health care system already affected by rapidly
increasing costs should force doctors to go against their expert judgement when
families insist on maintaining prolonged care for reasons that are defensible
only in emotional terms.
There is growing trend among
doctors to accept death of patient without a sense of failure. This trend
is illustrated by the acceptance of “Do – NOT – RESUSCITATE” orders,
concept unheard over the past 200 years. Resuscitation medicine has
established its place in health care and consists of emergency resuscitation
and long‑term resuscitation (intensive care) that represent life-support
chain called also critical care continuum. Previously inconceivable
possibilities have been developed, but at a price. This price has included
not only tremendous financial costs, but also the additional cost of
human suffering. The principles stating that access to the “aggressive
supportive care” or so-called “titrated therapy” is the right of each
individual, creates a whole complex of ethical decisions:
when and whether – if at
all – should therapy be started (Fig.
when should the therapy be
discontinued (Fig. 2)?
what quality of life are we able
to provide to the patient (Fig. 3a–3g)?
what are our responsibilities
when patient, family or surrogate demand futile treatment?
From Greek mythology (collecting water in leaky sieves) has come the
concept that futile acts, including medical interventions (Luce, 1995), are
ineffective and incapable of achieving a desired result or goal.
A treatment that cannot end dependence on critical care should also
be considered futile.
Recently, the doctors have been reminded that offering care to every
patient without estimating the severity of injury and thus quantifying the risk
of death, is an approach of the past. Various models for prognostic
prediction provide rough evaluation of patient outcome, but there are
statistical reasons why they may not work when they are tested in different
populations. Prediction rules suffer from criticisms that are not based upon
there is also disagreement on how much computer predictions should influence
medical decision. In addition to the fact that outcome cannot be perfectly
predicted, the concept of futility is limited in that doctors, patients, family
(surrogates) and other parties may view futility differently.
in Burn Medicine, there are encountered manifold factors contributing to
DNR decisions. Modern burn care often leads to the dilemma of what should or
should not be done for patients with clinical deterioration and organ system
failure with no response to therapy.
1992, Frantianne recommended a structured conference to address these
issues and to help decide whether to continue invasive diagnostic and
therapeutic interventions or to allow the patient die with dignity. This
conference is a meeting of the whole burn team.
decision made by the group is indispensable, though the final and principle
responsibility – according to our experience – lies always with the
head of the burn center, who has to communicate with the patient’s family
One of the
most difficult question in burn care is whether one should base
decisions of withholding or withdrawing therapy on potential quality of life.
The critical factor is age. The most distressing problems are
encountered in old persons, who are made by the injury completely
dependent on others for all their functions.
A conflict occurs in the treatment of an individual patient between the
aim of prolonging life – quantity of life – and the aim of promoting
quality of life.
us to the paradox that in old patients more sophisticated medical knowledge and
practice may actually contribute to suffering. Nevertheless, the full physical,
emotional and financial impact is usually not felt until the time
a patient is discharged from the protected environment of a burn
center. There arise several questions regarding quality of life:
survival and decreased length of stay in the hospital really the measure of
progress and success in the burn speciality?
What is the
real outcome of patients with severe burns?
What is the
long – term effect on the patients’ families?
return our patients to a society which is not ready
psychologically, socially or financially to accept them ?
decisions about the futility of care are extremely complicated. In clinical
practice we faced the alternative scenario of parents requesting withdrawal of
care because of fear of child’s disfigurement (Fig. 4a–4g). Do burn specialists have
a responsibility for the quality of life? Our cases of pediatric burns who
were operated on in phases (staged reconstructive procedures) and followed up
for decades may prove, life was worth striving for.
represents a special type of disfigurement. It produces a stigma
and the stigmata are interpreted by society as a moral or personal defect.
Furthermore, unlike other most severe forms of trauma (head or high spinal
injuries) the “burn image” is more likely to evoke public avoidance than
sympathy. Here let me point out the role of patients family background.
It is the essential factor to mitigate the individual stress response of the
patient during all phases of burn care. Particularly, after discharge an
appropriate attitude of the family members may recuperate the quality of
the nonhandicapped by their negative attitudes help create and perpetuate the
handicap itself and the consequent burden of suffering . Quality of life has
been estimated by Ian Ramsey Centre (Oxford, 1995) under five headings:
degree of pain, distress or discomfort experienced,
whether physical or emotional;
degree of normal activity attainable;
nature of personal relationships achievable;
extent of capacity to undertake and complete projects;
extent to which hopes and ambitions can be fulfilled.
two items seem “objective” when contrasted with the remaining three.
be able to predict how much pain or discomfort the patient is likely to
experience from a given treatment and what degree of activity the
treatment will allow. At least, in principle, as patients differ in all sorts
three items might be called “subjective”. Success in relation to them
depends upon the personality of the patient. What really matters is what the
patient feells as satisfaction. In competent patients quality of
life should be assessed entirely by the individual person.
patients (including young children) there can be no question of discovering
their preferences. By what standard is their quality of life to be assessed and
who is to do it?
to measure quality of life is an attempt to make comparisons regarding the life
of the same individual under different circumstances and to compare the
different states of an individual’s life to the lifes of different individuals.
conclusion let us bring back the initial reflection on judgement and decision
making. To estimate roles of scientific evidence and of authority or fashion in
determining our choise of treatment I wish to remember words of A. B.
Wallace in the talk which he gave at Buenos Aires in 1974. “Humanity has three
aspects – science, art and faith. Just as science and faith without art
produce the fanatic, and art and faith without science produce the mystic, so
science and art, unleavened by faith, produce the virtuoso, the technical
Robert Hutchinson meant in 1928 by mental culture and character, that A.
B. Wallace comprehended in “faith”.
disregard the social and historical circumstances in which we live, but they do
not change the justification of morality and ethics. We must remember that
outcome prediction, quality of life assessment and also cost efficiency are
significant tools for meeting the challenges of today and of tomorrow.
do redakce: 24. 5. 2010
prof. MUDr. Radana
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