<% vol = 43 number = 2 prevlink = 57 titolo = "QUALITY OF LIFE IN BURN VICTIMS: A HOLISTIC APPROACH" data_pubblicazione = "2000" header titolo %>

Kdnigovâ R.

Burn Centre, Third Medical Faculty, Charles University, Institute for Postgraduate Medical Education, Prague, Czech Republic

SUMMARY. The prognosis of burn patients is dependent - apart from adequate treatment - upon health care system and health care professionals, regarding not only survival, but also life-long quality of life. The protection of patients' rights is spelled out in the European Countries' constitutions, charters or basic laws. The Code of Patients' Rights in the Czech Republic in 1992 entitles the patients to respectful and professional treatment, to be able to make decisions, ev. to refuse treatment, to the presence of their own families, to continuity of treatment after discharge, to withhold consent to students' participation in the curative process, to die with dignity. The increasing interest in economic justification of any treatment in the EU calls for considering the ethical aspects. There has been differentiated intuitive ethics, ethics based on principles of Hippocrates, ethics defined by duties, ethics defined by consequences, influencing the quality of life (Grant, 1998). The age of patients should not play any rote in decision - making concerning diagnostic or curative procedures. However, in geriatric burn patients the "aggressive" therapy should not deteriorate their last days. From the ethical point of view there should be applied "palliative care". The age is a significant factor in the permanent sequels in children and youngsters, in whom scar deformities cause the loss of "body image" and severe psychological problems when the Patients Rights (comprehended in the Code of Czech Republic) are not respected.


Presented at the 8th Congress of the European Burn Association in Marathon - Attica, September 1 a-18, 1999 - R. Hermans Lecture

ZUSAMMENFASSUNG

Das Lebensniveau der Vebrennungsverletzten: ein holistischer Zugang

Hladik M., Tymonovä J., Zaoral T., Kadlcik M., Adämkovä M.


Die Prognose der Verbrennungsverletzten hângt von der entsprechenden Therapie, aber auch von dem Gesundheitssystem und der Betreuung des medizinischen Personals ab. Alle diese Faktoren beeinflussen das Überleben der kritischen Zustânde und das zukünftige Lebensniveau. Der Patientenschutz wird in den europâischen Lânder durch eine Reihe von Direktiven und Gesetze gewâhrleistet. In der Tschechischen Republik setzt der Kodex der Patientenrechte aus dem Jahr 1992 folgende Rechte fest - eine rucksichtsvolle und professionelle Behandlung für alle Kranken, die Müglichkeit die Therapiewahl mitentscheiden und eventuell die Therapie ablehnen, das Recht bel der Hospitalisierung von der Familie besucht werden, das Fürsorgerecht nach der Entlassung, das Recht die Teilnahme der Studenten bel den Untersuchungen ablehnen und das Recht des ehrwürdigen Todes. Parallel zur steigenden Bedeutung der ôkonomischen Aspekte der Gesundheitssysteme in den EU-Lânder ensteht die Notwendigkeit die ethische Prinzipe zu betonen. Es wurden sogenannte intuitive Ethik, auf den hippokratischen Prinzipen basierte Ethik, mit den Pflichten des medizinischen Personals verbundene Ethik und den Therapiefolgen determinierte Ethik, die das Lebensniveau beeinflusst, unterschieden. Das Alter des Patientes sollte keine entscheidende Rolle bei der Untersuchung und der Therapiewahl spielen. Bei geriatrischen Vebrennungsverletzten sollten nicht die letzte Tage des Lebens aufgrund einer "aggressiven" Therapie verschlimmert werden. Aus dem ethischen Gesichtspunkt sollte in diesen Patienten eine Palliativtherapie verwendet werden. Das Alter ist von Bedeutung im Fall der Dauernachwirkungen bel Kindern und Jugendlichen. Die narbige Deformationen ândern das K&rperaussehen und künnen schwere psychologische Probleme verursachen, solange die im oben genannten Kodex beschriebene Patientenrechte nicht respektiert werden.


Key words: quality of life, ethical issues in medicine, ethical theories, patients' rights in EU, futility in burn care, dysmorphobia


The life-long quality of life of burn patients may be fatally altered as a consequence of their disrupted "body image", and to improve it relies (besides other factors) on the experience, skills, and art, human approach and patience of the burn surgeon, as severe psychic derangement in burn patients may develop when the continuity of treatment after discharge has not been secured.

The anticipated quality of life might influence decision making with respect to withholding or withdrawing the so-called "aggressive" therapy in life threatening burns.

Many countries in Europe have incorporated certain social and patients' rights in their legislation. (Social rights related to health care are spelled out in the countries' constitutions and basic laws.) Because patients are reliant on the health care system and health care professionals, and therefore potentially vulnerable, they need mechanisms to promote and protect their rights.

Along with the patients' vulnerable position, there are two other factors:

Since the Second World War, a growing number of international organizations have produced declarations, charters, conventions and treaties on human rights and patients' rights that are not always respected, and developments in znedical technology have made protecting them cven more difficult.

The WHO Regional Office for Europe bas therefore set up a Network on Patients' Rights and Citizens Empowerment. The Network held its first meeting in Sweden in 1997 and the second meeting was in the U.K. in 1998. Some countries have adopted new legislation on patients' rights, while others have updated existing legal texts as in Austria, Bulgaria, Czech Republic, France, Germany, Hungary, Poland, Slovakia, Slovenia, Spain, Sweden, and Uzbekistan. Patients' rights legislation is in force in Denmark, Finland, Greece, Iceland, Israel, Lithuania, and the Netherlands. Legislation on patients' rights is in preparation in Belarus, Estonia, Georgia, Norway, the Russian Federation, and Turkey. The British, French, Irish and Portuguese governments have promulgated patients' charters.

From the practical point of view, non-parliamentary procedures take less time than legislative ones, but their results are not legally binding. Thus, patients' rights in a Charter cannot be defended in Court. On the other hand, drafting a law requires more time and resources. The Code of Patients Rights in the Czech Republic (25 February 1992) states that patients are entitled:

The Conférence on "lauality of Life in Severe Burns" held in Prague in September 1996 focused on two goals:

Ethical decisions require deliberation on the best means (to achieve the goal of allowing each human) to ameliorate the quality of life, be that in body or mind, according to Ian Ramsey Centre, Oxford (1995). The concern bas become more pressing with the clash between prolonging life and the well-being of the patient - between "quantity of life" and "quality of life".

In 1998, Ian Grant differentiated the following types of ethics:

Medical interventions could be futile if they failed to meet one or ail of the following goals:

In addition to the fact that outcome cannot be perfectly predicted, the concept of futility is also limited in that physicians, patients, families and other parties may view futility differently.

Although the issue of physician refusal of requested care bas not been resolved by case law or legal statute, it is supported by ethical principles:

  1. beneficence - medical care may confer two types of benefit preserving life = to actively prevent harm,improving life = to do good;
  2. non-maleficence - "primum non nocere" = doing no harm is the oldest principle;
  3. autonomy - is implied by the doctrine of informed consent;
  4. social justice - treatment should be given in a fair and impartial manner.

This IVth principle in burn care means a continuing obligation to the patient by the burn team.

All considerations of patient outcome (Ryan, Schoenfeld, Thorpe and others, 1998) should be free from:

The ethical principle of autonomy complicates the doctor-patient relationship by introducing factors that vary with each patient.

Attitudes to life and death, as well as medical problems, combine uniquely in each patient (Figs 1, 2). The patient should know the risk and benefits of thé treatment and all possible complications including disability, disfigurement and subséquent quality of life, or even death.

<% immagine "Fig. 1","gr0000044.jpg","This 20-year-old girl refused any physiotherapy and any orthopaedic intervention and preferred to exhibit her deformed legs and feet.",230 %> <% immagine "Fig. 2","gr0000045.jpg","In contrast, this 20-year-old girl, severely disabled following a train accident, started to work again as a radio reporter.",230 %>

A.E.R. Young asked in his essay in 1998: "What are thé rights of a competent adult with a life-threatening burn?

The first question "to die with dignity" - ARS MORIENDI - is related to thé method of EUBIOSIA - a high quality of life until death (Pannuti, 1980), which offers medical and spiritual help when any curative treatment lias ceased to be a categorical imperative.

It was not until 1985 that open discussion of explicit policies to limit medical care began, and in 1986 Brett, among others, described three circumstances in which requested care is not necessary:

  1. when such care is not likely to confer benefit to thé patient,
  2. when such care is likely to cause more harm than good,
  3. when thé request conflicts with social justict.

However, thé refusal of an aggressive therapy is much more difficult if thé treatment is already underway, unless thé patients medical chart specifically contains DO NOT RESUSCITATE ORDERS (DNR).

Objective estimates of thé probability of death from burn injuries elaborated in Boston in 1998 by Ryan, Schoenfeld, Thorpe and others, might be useful to clinicians making medical and financial decisions about burn care.

DNR décisions in burns are used in thé early stage of burn care when 3 risk factors for death are present (age above 60, TBSA above 40, inhalation injury) or in thé late stage of burn care when Multiple Organ Failure Syndrome lias developed and lias not been responding to therapy.

Ian Grant published in 1998 that with thé consent of thé patient, it is ethically valid for a doctor to remove potential obstacles to thé patients death.

There is an ethical différence between omitting obstacles to death and precipitating death. Discontinuing resuscitation requires a greater moral fortitude than merely not starting such treatment.

Even thé most severe burns do not result in immediate clinical deterioration, but are such patients competent and capable of informed consent? Some are extremely anxious, while some are aggressive and not coopérative, which may preclude their decision making.

Although Gillon Ward's opinion (1992) was to inform constantly alert patients (..."When they are told they will die, they tan begin to make basic decisions about their lifes..."), in my own opinion and experience, I never dared to distress thé patient by telling thé patient that he/she would die, but I did explain thé outcome to thé family. As aggressive therapy may actually worsen thé quality of life in thé last days, it is withheld, and "comfort care" is provided as a rule. In critical burn cases, consent is rarely obtained, because thé "lucid interval" is usually missed or thé patients are delivered by thé emergency service sedated or intubated.

Some burn victims will die in thé hours or days after thé accident, some will survive for a period of weeks and some may live on with a quality of life that would be considered by others as very poor (Figs 3a, b).

<% immagine "Fig. 3a","gr0000046.jpg","For example, this 9-year-old girl sustained a flame burn involving 67 % of TSBA.",230 %> <% immagine "Fig. 3b","gr0000047.jpg","She has been followed-up for 24 years having achieved normal activity as a wife and mother.",230 %>

The economic justification of any treatment (according to Kerridge and others) requires thé comparison of patient outcome and cost of treatment with other medical interventions. Cost-utility analysis has been used for these comparisons, and quality adjusted life years (QALY) have been used to incorporate différences in both quality and duration of survival. A.E.R. Young reminds us in his essay (1998): "... doctors as a profession are dedicated to thé welfare of thé patient and thé patient trusts doctors to act for his best interest and does not expect them to act as agents for Society..."

One of thé most difficult questions in burn care is whether one should base decisions of withdrawal of care on potential quality of life.

The crucial factor is age. Some studies describe elderly patients in various ICU as having positive attitudes towards life-support and as choosing survival over quality of life.

In thé burn ICU, everyday torture associated with each intervention is anticipated by thé elderly, even if adequate pain control is provided. This brings us to thé paradox that in these patients, more sophisticated knowledge and practise contribute to suffering.

In children, decisions about thé futility of care are extremely complicated. In 1997 guidelines were produced on thé withdrawal or withholding of life support for children. On thé other hand, in clinical practice there is thé alternative scenario of parents requesting withdrawal of care, when thé médical team believes life is worth striving for (Figs 4a, b).

<% immagine "Fig. 4a","gr0000048.jpg","This 4-year-old girl sustained a very deep facial burn and inhalation injury. Her family requested withdrawal of treatment to prevent lier life-long suffering because of a disfigured face. An appropriate explanation resulted finally in good cooperation of thé whole family.",230 %> <% immagine "Fig. 5a","gr0000050.jpg","This 10-month-old girl sustained a severe burn under obscure conditions: lier mother intended to get rid of lier even after having been admitted to thé burn centre as accompanying person. Two years later thé child was adopted by another family that was coopérative.",230 %>

Also, thé possibility of Münchhausen Syndrome by Proxy must be considered, though it has been more frequently published in thé paediatric literature (Figs 5a, b).To quote Grenacre (1953) "...a major trauma is never done with."

<% immagine "Fig. 4b","gr0000049.jpg","The final resuh after 15 years.
 ",230 %>
<% immagine "Fig. 5b","gr0000051.jpg","Multiple reconstructive procedures were performed during thé following 18 years.",230 %>

Particularly, scar disfigurement post-burn, called "burn image", contributes to psychosocial problems. Bernstein described in 1976 this condition as DYSMORPHOBIA. It bas been frequently encountered in patients suffering from thé "disfigured face syndrome" involving thé "facial triangle".

It bas been confirmed by our clinical expérience, and published by Pondélicek in 1987, that thé "loss of face" may cause thé "loss of personality" and may fundamentally influence thé quality of life.

However, there are many patients in our practice for whom long-term continual follow-up and staged reconstructive procedures helped to re-establish equilibrium in their lives.

Older persons may not have a perception of a reduced quality of life, but youngsters are thé most devastated by deformity and disability and perceive significant impairment in social, psychological, vocational and aesthetic areas.

On thé other hand, there are severely burned children and adults, physically disfigured, but with an intact capacity to reproduce and to enjoy all thé other possibilities of life.

Therefore, T. L. Wachtel, H. A. Frank and J. A. Nielson concluded in 1987 that quality of life decisions should carry limited weight in decisions severe burns. The impact on a patient is not proportional to thé magnitude of thé disfigurement, but depends on other psychological parameters, family adaptation and how much it interfères with daily life. It bas been emphasized many times that surgery alone is not sufficient, that such patients require informed supportive counseling.

Because in some countries this service is missing, many patient support groups have been founded; however, more important is to persuade politicians to ensure that resources are made available for this continuous treatment after discharge from thé hospital.

To abolish or ameliorate psychological problems and to prevent so-called "social death" or even suicide, secondary reconstructive procedures are indispensable components of thé overall treatment. Burn surgeons must, therefore, also master thé knowledge and techniques of plastic surgery and thé principles of aesthetic surgery. To take thé stance, as some health care systems have done, that "aesthetic" treatment will not be provided, may deprive patients of an improved quality of life.

MeGrouther pointed out in thé British Médical Journal in 1997 that at thé root of thé patients distress lies thé pressure in modern society to conform to an idealized appearance. He warned also that stigmatization by appearance is reinforced at every stage in education.

about withdrawal of tare in A.E.R. Young reminded readers in his essay that the public image of a burn survivor as an evil or tragic figure must negatively influence the public's and also professionals' attitudes. The burn survivor is referred to as "burn victim", and society's response to victims is to pity but more often to despise them.

James Partridge remembers that all bure patients have to go through a process of self-discovery; he cals it a "mirror moment", an awareness of altered body image.

Already in 1974 Converse reminded us that it is the nonhandicapped who by their negative and prejudicial attitudes help create and perpetuate the handicap itself and the consequent burden of suffering.

The WHO defines health not only as an absence of disease or invalidity, but also as a condition of physical, psychic and social well-belng.We cannot disregard the social and historical circumstances in which we live, but they do not change the justification of morallty and ethics.

We have to remember that outcome prediction, quality of life assessment and also cost efficiency were not taught in medical schools, norwere they emphasized in postgraduate training. However, they are among our most important tools for meeting the challenges of today and of tomorrow.

REFERENCES

  1. WHO, Regional Office for Europe: Patients' Rights Deuelopment in Europe. December 1998. The Code of Patients Rights in the Czech Republic, February 25, 1992.
  2. GRANT, I. Ethical Issues in Burn Care. Bures, 25, 1999, p. 307-315.
  3. RYAN, CM., SCHOENFELD, DA., THORPE, WP., SHERIRAN, TL. et al. Objective Estimates of the Probability of Death from Burn Injuries. N. Engl. J. Med., 338, 1998, p. 362-366.
  4. YOUNG, AER. Ethical Issues in Burn Care. Bures, 25, 1999, p. 193-206.
  5. BRETT, AS., McCULLOUGH, LB. Defining the limits of the physicians obligation. N. Engl. J. Med., 315, 1986, p. 1347-1351.
  6. WARD G. The die is cast: telling patients they are going to die. J. Bure Care Rehab. 13 1992 272-274.
  7. KERRIDGE, RK., GLASZIOU, PP., HILLMAN, KM. The Use of "Quality-Adjusted Life Years" to evaluate treatment in Intensive Care. Anaesth. Intens. Care, 23, 1995, p.322-331.
  8. GREENACRE P. Fetishism and body image. In EISSTER, RS., et al. (Eds) Psychoanalytic Study of the Child. Vol. 8, New York: Internat. Universities Press, 1953, p. 91.
  9. BERNSTEIN, NR. Emotional Care of the Facially Burned and Disfigure. Boston: Little, Brown, 1976.
  10. WACHTEL, TL., FRANK, HA., NIELSON, JA. Comfort care: an alternative treatment programme for seriously burned patients. Bures, 13, 1987, p. 1-5.
  11. Mc GROUTHER DA. Facial disfigurement: the last bastion of discrimination. Br. Med. J., 314, 1997 p. 991-992.
  12. PARTRIDGE, J. Changing Faces. London : Junction Mews,1992.
  13. CONVERSE, JM. In MacGREGOR, FC. (Ed.) Transplantation and Identity. New York : Quadrangle, The New York Books, 1974.
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