BIOETHICS AND DISABILITY

DR SIMON ATTARD MONTALTO

Introduction

Problems with significant ethical implications pose a frequent dilemma in medical practice. These problems often involve a plethora of complex issues, and rarely present a simple solution. This is particularly the case with ethical issues involving children and those with a disability, especially when this prevents them from taking their own decisions. Ultimately, the patients’ interests must come first and all personal, cultural and religious bias eliminated. Although medical treatment can never be assessed on monetary terms alone, the impact of medical management for the individual patient on the wider community and the efficient use of available resources must be taken into account. For these reasons, it is essential to establish a strict, ethically-acceptable code of practice. This will allow doctors to provide an objective approach to management that is both rational and consistent, both for the disabled patient as well as society.

Principles of medical ethics

Certain principles must apply in the decision-making process involving patient care at all times, but especially when medical decisions have implications of a serious ethical nature. These principles include:

1. Respect of the patient’s autonomy:

All patients should be fully informed of their medical condition, treatment options, possible complications and outcome, and should be free to take an active role in the decision-making process. However, the vast majority of patients do not have sufficient knowledge and information, and rely on their doctors for guidance. This introduces the vexed concept of true informed consent, an ideal that is sometimes extremely difficult to emulate in practice.

2. Respect of the patient’s competence:

Competence implies a level of understanding that is able to weigh up the ethical issues posed by a clinical situation, and assumes that patients have the ability to reach rational decisions. This degree of comprehension is clearly a problem with young children and mentally disabled individuals, where parents and/or guardians assume responsibility, again under the guidance of medical advice.

3. Beneficence:

This defines the medical principle of ‘do no harm’, one of the hallmarks of the Hippocratic oath, and should apply in all cases. Much that is done in medicine entails a compromise between benefit and harm, especially with regard to interventional procedures and drug therapy. Although it may be acceptable to embark on high-risk on a fully informed individual, the situation may be far from clear for minors and the disabled. On the other hand, a total ban on such potentially beneficial therapy on the grounds of non-informed consent, may deny these subgroups a realistic chance of improvement.

4. Avoidance of paternalism:

Practitioners should strive to remain truly objective and avoid all personal, racial, cultural, religious or other bias when counseling or treating patients. Personal prejudice and preconceived ideas must never influence the provision or withholding of medical care to patients, regardless of whether they are disadvantaged, have a pre-existing disability or otherwise. The wishes of parents and guardians must also be respected, again regardless of any personal bias.

5. Respect of the truth:

There is never a case for willfully lying to patients. Similarly, there is rarely any justification in withholding or omitting information from patients.

6. Respect of patient confidentiality:

All patients have a right to confidentiality. However, disclosure of confidential information without consent may be justified in situations where failure to report may lead to greater disadvantages to the patient (e.g. physical abuse).

7. Avoid all conflicts of interest:

The patient must always come first, before any vested interest of any third party including physicians as well as the parents, guardians, extended family and society.

8. Respect the limitations of medical care:

Medical care should strive to support the patient, and should be tailored to the needs of the individual including any complications or disabilities. It is ethically appropriate to appreciate realistic goals which medical care can achieve, and wrong to aim toward impossible expectations. Hence, it is equally unacceptable to ‘treat at all costs’, as it is to ‘play god’.

Life support and critical intervention

A competent person has an almost unquestionable right to decide what to do with his/her own body, even when this may entail the refusal of health care which may offer excellent prospects for cure (e.g. blood products and Jehovah witnesses). This ‘choice’ cannot apply to children and the dependent disabled, and this responsibility is usually taken over by parents/relatives. The latter may have their own agenda, which is at odds with the best interests of the patient, and may be overruled following appropriate legal procedures. This problem was highlighted by the case involving Baby Doe, a newborn with Down syndrome and intestinal complications whose parents refused life-saving surgical intervention (USA, 1982).

Although religious beliefs are not essential to the legal principles of medicine, they should be considered, and if possible respected, in all cases.

Quality of life is highly subjective and what is acceptable to one individual may be abhorrent to another. Hence, it is ethically wrong to withhold therapy on the basis that it may result in survival with a handicap. Unfortunately, it is often very difficult to predict the ‘degree of disability’ and, as a rule, the benefit of the doubt is given to patients. In the critical care setting, although it may be acceptable to withhold therapy in some situations, it is easier to withdraw treatment at a later date. The latter allows for a trial period during which time the patients’ response, severity and irreversibility of their disease can be established beyond doubt. Indeed, both under or over-treatment of critically ill patients is wrong and a modus operandi which balances the two should apply in all intensive care and neonatal units.

The ethics of medical decision-taking

Morally acceptable decisions can only be based on:

· omniscience - all the facts

· omnipercipience - all the points of view

· disinterest - no vested interests

· dispassion - not obscured by emotional bias

· consistency - reproducible management for all similar cases

In practice, many of the above ideals do not fully apply to a particular case. For example, it is often difficult to completely separate disinterest and dispassion from patients with whom an attending physician has built a close, professional relationship. For these reasons, it is not just desirable but essential to establish independent ethics committees to oversee particularly difficult decisions (both with regard to clinical medicine and research). These are usually composed of medical and nursing experts, laypersons, lawyers, representatives of various support groups, etc.

Informed consent

This is a pivotal issue with regard to patients’ ‘free choice’, control and active participation in their medical management. It is fraught with problems in the competent adult, and is doubly more difficult to achieve in minors and dependent, disabled individuals. Truly informed consent can only exist when patients are sufficiently informed to weigh up all the pros and cons of treatment, and their consent is given freely without coercion, vested interest or bias from physicians or third parties.

Limitation and availability of treatment

In an ideal world, all treatments should be available to all patients at all times, regardless of age, gender, race, creed, social status and preexisting disease or disability (co-morbidity). In practice, medical care is extremely expensive and in limited supply, even in developed countries. Inevitably, this leads to an overt or covert system of health care rationing, especially where high dependency therapy is concerned. This may lead to negative discrimination against those with other/multiple disabilities and great care is required to ensure that any inclusion/exclusion criteria are fair and ethically acceptable.

Euthanasia and the disabled

Passive euthanasia allows patients to die naturally of their underlying disease and is generally acceptable in those with terminal disease. Although it implies no active intervention, passive euthanasia does not permit the withholding of supportive therapy, palliative care, pain relief, etc. Furthermore, it does not justify a decision not to treat on the basis of an underlying disability. Active euthanasia, by positively helping a patient to expedite his/her demise, is far more contentious and considered unlawful in most countries. It allows no room for error and may create a slippery slope effect, with the cut-off limits of what is and what is not acceptable, becoming forever more obscure.

Medical research

A significant proportion of the benefits resulting from research will help future patients rather than those directly involved in the research. Given that patients should never be used as a means to an end, and difficulties with informed consent, it is hard to reconcile the participation of disabled patients in research. However, a total ban on such research activity will restrict disabled patients from benefiting from any potential advances.

Conclusion

Medicine is never a pure science and contentious issues in management abound. A single, simple solution to a given ethical problem in medicine is extremely unlikely, particularly in patients who are either too young or incapable of grasping the nuances of treatment. These patients rely on third parties for their decision making, and this adds a further dimension to an already complex situation. It is only by careful attention to a strict code of ethics based upon respect and tolerance of other persons, whether disabled or not, that decisions can be taken which are truly in the best interest of patients and society at large.