Medical ethics in the Neurosciences
Doctors in India are heirs to a long tradition of ethics from their own forebears and from those from the West. This paper discusses ethical aspects of topics of relevance to neurological scientists such as brain death, neural transplant and whole brain transplant. Many other topics such as ethics in research, patients with AIDS, patients in a persistent vegetative state and euthanasia deserve similar consideration and debate.
No one disputes that the aims of medicine are to help restore health, maintain it and prevent it from deteriorating or being attacked by disease. Here we consider a few aspects of current medical practices insofar as they pertain to the nervous system of man.
Primitive tribal cultures have long recognised the fact that the head contains the centre of reason and 'the soul substance of man'. Excavations of prehistoric burials show that often, before burying the dead, early man removed the skull, evidently attaching a special spiritual value to it.
Hippocratic tradition has guided western medicine since the 5th century BC. Each doctor taking the oath undertakes to 'apply ... measures for the benefit of the sick according to my ability and judgement; I will keep them from harm and injustice. I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect... In purity and holiness I will guard my life and my art.'
In India, the populace at large remains guided by ancient religious and philosophical doctrines. Indian physicians of the past remained faithful to the oath of initiation administered by the teacher to every student aspiring to the medical profession. The oath included the following:
'Day and night however thou mayest he engaged, thou shalt endeavour for the relief of patients with all thy heart and soul. Thou shalt not desert or injure thy patient even for the sake of thy life...'
'Thou shalt renounce all evil desires, anger, greed, passion, pride, egotism, envy, harshness, meanness, untruth, indolence and other qualities that bring infamy upon oneself.'
'Thy preceptor, the poor, the friendly, the travellers, the lowly, the good and the destitute - those thou shalt treat when they come to thee like thy own kith and kin and relieve their ailments...'
Ideals were instilled with great care and forethought.
'As long ago as 1000 BC, Çaraka firmly believed that the head (sira) was the most important organ of the human body. In the Vedas the brain is considered to be the centre of the mind which possesses the highest of all senses. If the brain is destroyed the limbs are paralysed and death follows.'
The present concept of brain death appears to have been anticipated in the Vedas. 'We had a recent discussion with an Ayurvedic acharya and I was quite surprised to see that the definition given here today is there in the slokas. They say life is composed of four components. It is a coordinated activity of shareer, indra, man and atman of which shareer is the body we see. Indra does not refer to eyes and ears but the sensation of sight, hearing and touch and a probably modern interpretation in today's knowledge would be the areas in the brain which are responsible for that particular sensation. The content of consciousness is the man... Atman probably means the seat of consciousness or pran. The breathing centre or pran lies in the brainstem and so does the seat of consciousness. When this is not functioning the patient is dead. Thus the criteria for brain death have already been described for us several centuries ago...'
Ancient Hindu and Buddhist philosophy taught the subjugation of the desires of the physical body, emphasising instead the need to concentrate on higher, spiritual matters. The savant considers the body as a mere container for the essential atman or soul. The shell (for that is what the dead body, devoid of the atman, constituted) is thus to be treated with indifference.
'Hindu philosophers undoubtedly deserve the credit of having, though opposed by strong prejudice, entertained sound and philosophical views respecting uses of the dead to the living and were the first scientific cultivators of the most important and essential of all the departments of medical knowledge - practical anatomy...' (Wise quoted by Bhagwat Sinh Jee[7.
A Hindu sage or his Buddhist counterpart would have no difficulty in permitting the use of any part of his corpse for beneficial purposes. (See also Crowe et al[8.
Jain philosophy took off from Hindu origins. It permitted an aspirant to embrace ritual death under the following conditions: 1) when one suffers from an incurable disease, 2) when one encounters severe famine, 3) when one encounters conditions that make the maintenance of one's spiritual life impossible. (Bhagavati-Aradhana quoted by Settur[9 Great philosophers - often termed saints - have embraced ritual death upon realising the illusive character of the world. Most such deaths were achieved by fasting, solid foods being abandoned at first and then liquids as well. The corpse of such an individual was to be allowed natural decay and destruction rather than disposal through funeral and cremation. Several conclusions were drawn by survivors from the eventual state of the corpse laid out in the open. The use of organs from such a body for the welfare of others would have been applauded.
Christians and Muslims in most countries have agreed to recognise the concept of brain death and permit organ transplantation from persons whose hearts were still beating., The governing principle in Judaism and the Zoroastrian faith is the supreme importance of preserving life. Both these religions therefore permit organ transplantation.
Transplantation of tissue from the brain of a dead person, thus, appears to face no serious religious objection. Transplantation of the whole brain or tissue from a foetus, on the other hand, appears to require further thought and debate.
Modern doctors are privileged in India. They continue to command respect from the community, earn handsomely and play a decisive role in almost all matters pertaining to health and sickness. Most of our countrymen are, on the other hand, poor and illiterate. The expected compassion, humaneness and empathy is, however, lacking in many Indian doctors. The defence that doctors, being part of society, cannot but be tainted by the corruption prevalent in the population at large does not hold. Their high level of education, the codes of ethical practice inherited from such ancients as Çaraka, Susruta, Hammurabi and Hippocrates and the examples of the great doctors of the past should have countered such a tendency.
Great care is needed in introducing concepts and practices that could form a fertile breeding ground for further malpractices.
Rising costs of care of patients whose hearts and lungs can be made to function artificially but who stand no chance of meaningful life on account of severe and irreversible damage to the brain by injury or disease focused attention on this concept. Legal acceptance of the criteria of brain death, from 1959 onwards in France and shortly thereafter in other countries, permitted treating physicians to shut off all artificial means for prolonging the function of the heart and lungs in patients with brain death, thus reducing wasteful expenditure and ameliorating the agony of surviving relatives.
The need to harvest organs for transplants as soon after death as possible also triggered changes in the means by which the diagnosis of death can be made with certainty. Discovery of the fact that organs harvested whilst they were being perfused by oxygenated blood led to the formulation of the concept of brain death and, in turn, the means for making such a diagnosis.
The earlier notion that death can only be certified after the total and permanent cessation of all the vital functions, exemplified by cessation of the heart beat and respiration has thus given way, to the certification of death on the basis of complete and irreversible cessation of brain function even though the heart and lungs continue to function. This change is based on the fact that the essence of a human being lies in the brain. Death of the brain is inevitably followed by death of the body. The rest of the body, minus the brain, has no independent existence.
Once the concept of brain death was accepted it became necessary to lay down criteria for making this diagnosis. In India, we have ruled that evidence of death of the brainstem suffices since it is in the brainstem that the mechanisms for consciousness, cardiac rhythm, blood pressure, respiration and other vital functions reside. This diagnosis can be made without recourse to expensive or hard-to-find equipment.
We must add a clause to the above statement. The diagnosis of brain death in infants and young children must be made with extreme caution. The developing brain poses extra difficulties in diagnosis because of the fact that systems are still in the process of development. We cannot certify brain death or brainstem death in children under the age of three years.
The tests required to make a diagnosis of brainstem death are based on clinical examination. It is mandatory that such a diagnosis be made by two independent registered medical practitioners not connected with any transplant program. In principle, it should be possible to arrive at a diagnosis anywhere in the country - metropolis, town or village.
The education of all our doctors legally empowered to make a diagnosis of death (modern medicine, ayurveda, homeopathy, unani and other forms of practice) on the means for making of such diagnosis is vital.
The diagnosis of brain death, however, becomes truly relevant only in a setting where the patient is being monitored, is on a respirator and is being considered as a potential donor of organs. Such a situation only exists in sophisticated hospitals in towns and cities.
Our experience with renal transplants on payment suggests the need for caution in the diagnosis of brain death. It will be necessary to monitor such diagnoses for a long time. This will not be an easy task. 'There will not be many problems is state run hospitals where the criteria for brain death will be strictly fulfilled. The problems will be in the five-star hospitals or big nursing homes. Who is going to audit brain death in these places where they have rich customers waiting for transplantation?'
Should the term 'brain death' be replaced by 'death'?
There is often grave confusion in the minds of relatives and friends who are told that their patient has suffered brain death. They look at the monitor and see the stable pattern of the electrocardiogram and are unable to reconcile it with what they have just been told. Almost as though they were mesmerised by the graph on the screen, they continue to harbour the hope that if the doctors strive a little more, their patient may recover.
This has led most hospitals and clinics to refrain from discontinuing all life support systems despite the diagnosis of brain death for fear of being sued for murder or malpractice. The dead patient remains on the ventilator. Drugs to prop up the blood pressure continue to flow into the body. The family continues to pay huge sums for several days till the heart comes to a permanent halt. Their agony is prolonged.
This is a waste. Another patient, whose life may be saved by treatment in the intensive care unit, cannot be admitted as this bed remains occupied. Doctors and nursing staff are demoralised.
This dilemma has led to the suggestion that we abandon the term 'brain death' which leads the lay person to suppose that there are different forms of death, 'brain death' being intermediate to 'true death'. The criteria for brain death should henceforth be publicly proclaimed and legally accepted as the criteria for death even when organ transplantation is not under consideration. Once this is done, the diagnosis can be followed by rapid removal of all life support systems as in the case of the patient where the heart has permanently stopped beating.
Removal of life support systems after brain death
The Transplantation of Human Organs Act (1994) passed by Parliament in India lays down the criteria for brain death in the context of organ transplantation. The British criteria (on which our Act is based) clearly state: 'The medical officer will speak to the relatives and announce the death. The time of death is recorded as the time when the final test to fulfil the criteria for brainstem death was satisfied.' We need either a similar specification in our own Act or, better still, a separate statute defining the new criteria for the diagnosis of death.
Till this happens, Sethi and Sethi's suggestion can be followed. In the case Dority versus Superior Court of San Bernardino County, USA (1983), the court ruled: 'Brain activity is a necessary condition to legal personhood and perhaps with the exception of the foetus, it is a sufficient condition for legal personhood… Once brain death has been determined… no criminal or civil liability will result from disconnecting the life support devices.' Should there be a legal query, this case can be quoted in defence of removal of life support systems once the patient has been shown to be brain dead.
The basic requirements for the performance of any surgical operation hold.
1. The recipient (or, when the patient is a minor or is non compos mentis, a legally responsible relative) and the donor (or, when the patient is non compos mentis, a legally responsible relative) must give willing and informed consent for the procedure.
2. The indications for surgery must be in conformity with internationally accepted criteria and there must be a reasonable chance of success from the operation. The benefits must outweigh the risks to the recipient.
3. The donor should suffer no harm.
4. The surgeon and the entire transplant team must possess all that is needed for a successful outcome - expertise, technical excellence, equipment and ancillaries.
5. All the necessary precautions must be taken to assure a successful outcome and prevent complications. The development of AIDS in recipients of renal transplants make this all the more important. Since neural tissue used for transplant could harbour a slow virus, every effort will have to be made to ensure that the presence of such organisms has been excluded.
6. Trade in human tissues is contrary to the respect and dignity of the human body. Only those who need such a gift should receive it rather than only those who can afford it.
No ethical principle is transgressed by such an operation. As pointed out by Msgr. Cordeiro, sacrifice of part of the human body in the interest of the whole person or that of such vital organs as the brain or spinal cord has worldwide ethical sanction.
Heterograft from cadavers, at present unsuited for neural transplant, will pose no ethical problem provided the operation has been carried out bearing the general principles outlined above in mind and brain death in the donor has been diagnosed ethically.
Heterograft from live donors will, even more so than in the case of renal transplant, pose major ethical problems.
Clear and unambiguous guidelines are needed regarding indications and contra-indications for such procedures. The indications must confirm that the disease can be cured or alleviated only by a transplant. The donor must be guaranteed that no harm will occur to the functions of his own mind and brain. The postoperative states of donor and recipient must be closely monitored along strictly scientific lines on a long term basis.
The extensive and unscrupulous commerce in kidneys warns us of malpractices to come. Dealing, as we are, with two human brains, it is essential that we ensure total honesty, fairplay and the highest standards from all concerned. Under prevailing circumstances, this may be very difficult in many countries including India.
Tandon pointed out that questions on whether or not it is ethical to use foetal neural tissue as transplants have arisen because the foetus is, in the eyes of the law, a person in its own right whilst in the maternal womb.
When, however, it is proved that use of tissue from a foetus aborted for other reasons can alleviate suffering, restore normalcy or help in any other way a suffering human being, it is difficult to find fault with such usage, especially when no other means is available for such relief or cure. The foetus, incapable of independent existence outside the maternal womb, is dead on abortion or soon thereafter. The use of tissue from other dead individuals - heart, heart-lungs, kidneys, liver, pancreas, cornea, bone, dura mater... has gained the approval of the law, the medical profession and society at large. There can be no scientific reason to prohibit the similar use of foetal tissue.
Having said this, it is necessary to consider purely ethical and theological objections.
The permission for abortion granted by law in some countries (including India) ignores the status of an embryo as an individual. To assert that the use of tissue from a foetus aborted in accordance with the law of the land is permissible is to derive ethical approval from legal sanction. This is not in keeping with the principles of ethics which lie on a plane higher than those of law.
The church forbids removal of neural tissue from a foetus until it is brain dead. Since brain death in a foetus can only be determined with great difficulty, if we are to accept the church's verdict, we shall have to forbid foetal transplants. Society at large will have to decide upon the practice to be followed in such cases.
The foetus nearing term, capable of independent survival outside the maternal womb, cannot be placed in the category discussed above. Every effort must be made to ensure its survival. Removal of neural tissue for transplant can only be considered after brain death is established with certainty in such a foetus.
Present fears centre around the possibility of abortions being carried out principally or solely for the purpose of obtaining neural tissue for transplantation. That such fears do not belong to the realm of fantasy is clear from the fact that mothers have become pregnant simply in order to obtain an organ (such as the kidney) or tissue (such as bone marrow) from the newborn child for use in an ailing sibling whose life depends on obtaining such a graft. (In the available examples, the donor has been incorporated into the family with affection and gratitude).
Ethical principles cannot sanction the sacrifice of a foetus simply because a sibling needs neural tissue as transplant.
Great caution will be necessary in the legal sanction of the use of foetal neural tissue for transplantation. The principles under which such transplants can be permitted may emerge after much serious debate and must win universal approval. The guidelines provided by the British Medical Association may serve as a model. Ensuring that no unethical or illegal transplantation is carried out is, however, likely to prove difficult especially in countries such as India.
Andrews suggests development of foetal cell lines from spontaneously aborted foetuses so that a large quantity of transplantable tissue is obtained from a very small source. Such tissue could be used for transplantation without the breach of ethical or legal principles.
At present this is in the realm of science fiction. Even so, it must be considered for in the field of medicine and biology, all too often, a procedure proclaimed impossible has been put into operation shortly after the proclamation.
Should they come to pass, whole brain transplants will bristle with ethical dilemmas. Since the brain is the organ for thought, perception, imagination, emotion and, indeed, all activities of the mind and intellect, the fundamental question is who is the donor and who the recipient. Here, the organ represents the individual not the insensate body that will house the organ. If, the brain of A is transplanted into the body of B, does B now assume A's identity? Does B's family, property and other worldly possessions now belong to A? And what of A's family, property? 'Is it right for a person who has led a ... righteous life to have the mind of ...a criminal foisted upon him?' What will be the criteria for the selection of the person owning the brain to be transplanted and those for the body that will receive it?
Whole brain transplants will also face considerable opposition from the theologians., The very idea of transplantation of the mind and soul (if we accept the belief of many scientists that the soul resides in the brain) of one person into the body of another is anathema to them. Even if you do feel that the soul resides elsewhere in the body, there are major obstacles, at least in the Zoroastrian faith. 'It is not only unethical but also against the cosmic laws of nature to try and interfere fundamentally with the soul of a person by giving him a mind which is different from the one he was born with... A brain transplant would result in a soul developing a mixed identity.' Scientists may find themselves out of their depths here. How does one identify the soul? How does one ascertain the identity (leave alone a mixed identity) of the soul?
1. Cultivation of a sense of morality in the medical profession.
2. Carefully and painstakingly evolved legislation on neural transplants. Such legislation should cover criteria for the selection of the recipient (including the establishment of computerised state and national registers and criteria on which priority of selection of the recipient must be based), criteria for selection of the donor, consent to be given by the donor or his family, basis for the computation of costs of transplantation and criteria for the recognition of centres for such surgery.
3. Where a live donor is involved, ample checks should be built in to ensure that he undergoes no harm as a consequence of his donation.
4. A well-established mechanism for checking the working of transplant centres within a given state or the country at large. Ordinarily this task could have been delegated to the medical councils but their track record does not justify faith in their ability to do justice to such a task.
5. Means for the dispensation of swift justice in case of malpractice.
6. Periodic state or national conferences where the results of each transplant (including detailed and well-documented follow-up findings) are reviewed and analysed.
The ethics of massive expenditure on transplant programs in a country where measures to prevent disease and malnutrition are inadequate must also be addressed. As Dr. S. Mukherjee put it, 'In our country we do not immunize all our children, we do not give full meals to all our people and we do not provide clean drinking water for all our people. These are the real problems, while we are sitting in an air-conditioned room and talking about transplants which cost crores of rupees.
It is also important to ensure that transplant programs are not carried out merely in an attempt at medical adventurism. Callahan's cautionary note is relevant: 'I have before my mind's eye a future health care system that seeks not constantly to conquer all disease and extend all life but which seeks instead to enhance the quality of life; which seeks not always to overcome the failings and decline of the body but which helps people better accept and cope with them; which tries to keep in view that health is a means to a decent life, not a value in its own right.'
These difficulties notwithstanding, a case can be made for the development of the technology for successful transplantation at a few, very carefully planned and strategically located centres in India (perhaps one each for the north, east, south and west of the country) after the value of such transplants has been unequivocally established internationally. It may become necessary for the rich to subsidise transplants for the poor in order to ensure that the facilities are intended for all those absolutely in need and not only for those who have the money for the procedure.
We must, at the same time, acknowledge the beguiling, almost insuperable temptations that this very expensive kind of surgery will spawn. The sums involved make it unlikely that doctors will remain content with the establishment of a single transplant centre in each geographical region. The greed for lucre, power and political influence will force decisions on grounds other than logic and rationality. We have, unfortunately, far too many examples of such practices in the setting up of private medical colleges and centres housing very expensive tools for investigation, to give but two examples.
This essay has dealt with just a few aspects of ethics in the clinical neurosciences. There are many other subjects deserving discussion and debate: ethics in neuroscientific research, patients with HIV infection and those with AIDS, patients in a persistent vegetative state, euthanasia…
It is also relevant to rephrase Pilate's query and ask 'What is ethics?' for ethical norms undergo changes based on geography, culture, current terms of reference and social norms. Abortion was bitterly condemned and abortionists convicted of criminal action the world over till factors such as overpopulation compelled countries such as India to legalise the sacrifice of the unborn child.
Some ethical principles are likely to prevail but others may give way. Our discussion must, therefore, be considered only as part of a continuing series. Our conclusions must provide room for change when needed.
Even given unanimity on ethical principles and effective legislation, can we enforce practice based on them? Present experience in India does not justify optimism.
Dr. Eustace J. deSouza kindly gifted me a copy of the thought provoking book on the subject of brain transplantation from which I have drawn freely.