Many of us have wishes on what care we would like to receive towards the end of our lives. Some would want to be left at home and others would not want measures which they consider extraordinary to be taken

As long as the requests fall within the law and reasonable moral standards which do not pose undue dilemmas to doctors are adhered to, using the proper channels, these requests can be made.

Conversely, some requests are more difficult to respect in complicated situations. If a patient has expressed a wish that he does not want to receive any treatment but the wish was expressed through a relative and there are doubts about the competence of the patient at the time when he or she was giving the directive, then it may be necessary not to follow it. Doctors are always obliged to save lives unless treatment becomes futile.

Therefore someone who may be depressed may state that should he enter hospital in an unconscious state, he would not like to receive treatment. The depression puts into question the competence to make that choice.

Now this is not to say that people who are clinically depressed cannot participate in their care, even when it comes to making such directives in advance. Today we even respect the wishes of patients with schizophrenia who do not want to receive treatment as long as they do not pose a risk to themselves or to others. But when one is requesting something which is controversial, especially at the end of life, there is a delicate balance between what is lawful and ethical and indeed what the limits of human rights are.

Gandhi was free to terminate his life by hunger strike (which he did not, then) but there was no question about his mental abilities. Then again, he was living in a different era and in a different country. When someone refuses treatment we need to ascertain that there was at least a doctor present who could testify that this is indeed what the patient wanted and that the patient was competent. If the doctor wishes to verify competence from a more specialist person, such as a psychologist or a psychiatrist, then the doctor cannot be certain that there was a mental state which can render such a directive legal.

In Malta we as yet do not have a law governing advance directives, so even when there are such requests, they are always subject to the attending physician. In hospital no physician can be expected to follow unreasonable requests which will put a life into jeopardy. It is the boundary between bioethics and bio-law that we are speaking about. The boundary between patient and human rights is not only dictated by good clinical and ethical practice, but they have to be within the realm of the law, especially in a democratic society, where one assumes that laws are indeed ethical in themselves.

In countries where the death penalty exists, the World Medical Association advises doctors not to participate, even if I simply mean checking the blood pressure before the person is executed. Although you do find doctors who will take on these jobs because they are legal, they are still considered on the edge of ethical acceptability. But the death penalty is something which in itself is controversial and a doctor can be expected to refuse to participate if he so wishes to; there comes a point when one should respect the ethos of one’s profession and follow one’s duty of care.

Someone who demands not to be treated should he enter hospital and allowed to die, without a proper framework of practice which is accepted to the clinician cannot be expected to have that request received. Advance directives are not merely an expressed wish. To be effective they must be made in a proper setting and with proper legislation.

If there is no legislation, then professionals must guarantee that the person was competent and under no stress which could influence that choice. If I shoot myself in the head and leave a note that should I fail to kill myself I do not wish to receive treatment, it would be not only unethical but also unlawful for a doctor not to treat, especially if someone had to bring me into an emergency department. A wish is only a wish; some may be reasonable; others may not.

We need to legislate for the patients’ right to refuse certain treatment if it becomes extraordinary. This helps good clinical ethical practice. I should be able to say that if I am dying, I do not wish my family to see me with hydration pipes going in and out of my veins, nose and other available orifices. That is a reasonable request – to die in peace. If I tell them not to treat that which is treatable, it is not. This requires proper legislation which the EC is now directing member states to have.

Pierre Mallia is Associate Professor in Family Medicine, Patients’ Rights and Bioethics at the University of Malta; he is also Ethics Advisor to the Medical Council of Malta. He is also former president of the Malta College of Family Doctors