ETHICAL PROBLEMS IN BURN MEDICINE

By way of an introduction let us remember Rudyard Kipling, who in 1912 in his “Book of Words” set forth a portrait of the Doctor:

“The world has long ago decided that you have no working hours which anybody is bound to respect, and nothing will excuse you in its eyes from refusing to help a man, who thinks he may need your help, at any hour of the day or night. In all time of flood, fire, famine, plague, battle, murder it will be required of you that you go on duty at once, and that you stay on duty until your strength fails you or your conscience relieves you.”

We cannot disregard the social and historical circumstances in which we live, but they do not change the justification of morality and ethics.

The prognosis of burn patients is dependent – apart from adequate treatment – upon the health care system and health care professionals, regarding not only survival but also life-long quality of life. The increasing interest in economic justification of any treatment calls for a consideration of the ethical aspects.

In 1999 Grant and Joung differentiated intuitive ethics and ethics defined by duties. Medical ethics based on principles of Hippocrates declare “Salus aegroti – suprema lex”:

1. Beneficence (preserving life – survival and improving life – quality of life)
2. Non-maleficence (concerns both euthanasia and dysthanasia)
3. Autonomy (informed consent of the patient or of his surrogate)
4. Justice (solidarity – continual care by the burn team)

More than 200 years ago medical students were taught by Samuel Johnson: “It is our first duty to serve society…”

True service to the society has changed over the 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 has only extended to the family when the patient has become incompetent.

The Code of Patients Right 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 to make decisions regarding the health care provided;
• to the presence of their own family (very important for burn care);
• to refuse treatment (which does not concern the acute phase of burn care);
• to give or withhold consent to students’ participation;
• to access to confidential medical records;
• 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 another 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 a growing trend among doctors to accept the death of patient without a sense of failure. This trend is illustrated by the acceptance of “DO-NOT-RESUSCITATE” orders, a concept unheard of 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), which represent a life-support chain – also referred to as a 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 “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?
• When should the therapy be discontinued?
• What quality of life are we able to provide to the patient?
• What are our responsibilities when the patient, family or surrogate demand futile treatment?

Recently 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 from 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.

There is 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. Especially in Burn Medicine, manifold factors contributing to DNR decisions are encountered. 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.

As early as 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 to die with dignity. This conference is a meeting of the whole burn team.

The decision made by the group is indispensable, though the final and principle responsibility – in our experience – always lies with the head of the burn center, who has to communicate with the patient’s family continuously.

One of the most difficult ethical problems in burn care is whether one should base decisions of withholding or withdrawing therapy on potential quality of life. The critical factor is age. In children 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 their fear that the child will be disfigured. Do burn specialists have a responsibility for the quality of life? Our cases of pediatric burns where patients underwent operations in phases (staged reconstructive procedures) and have been followed up for decades may prove that life was worth striving for.

The impairment resulting from a burn injury may affect any body system – though scarring 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 an 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 life,

The most distressing problems are encountered in old persons, who are rendered 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.

This brings 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 ethical questions regarding quality of life:

• Are 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?
• Do we return our patients to a society which is not ready psychologically, socially or financially to accept them?

The non-handicapped, by virtue of their negative attitudes, help create and perpetuate the handicap itself and the consequent burden of suffering (Converse 1974).

It has been regarded as an asset of the Prague Burn Centre that the patient is treated throughout, from the shock phase through the period with necrectomies and grafting procedures to the reconstructive surgery, by the same surgeon and the same multidisciplinary team of specialists. Still another factor required is a highly individual approach by the surgeon to every patient.

Scientific and technical advance can be coped with by doctors who are not only equipped with high professional skills but also who are aware of their ethical duties towards their fellow man – both as an individual and as part of the social context – with a humble recognition of the pitfalls which those duties involve.

Address for correspondence:

Prof. Radana Königová, M.D., D.Sc.

Burn Centre, 3^rd Medical Faculty, Charles University

Šrobárova 50

100 34 Prague 10

Czech Republic

E-mail: burnsec@fnkv.cz