Ethical Issues in Pediatric Intensive Care in Developing Countries: Combining Western Technology and Eastern Wisdom
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《美国医学杂志》
1 Division of Critical Care Medicine, Department of Pediatrics, Children's Hospital of Michigan and Wayne State University School of Medicine, Detroit, Michigan, India
2 Division of Pediatric Critical Care Medicine, Department of Pediatrics, University Medical Center and University of Nevada School of Medicine, Las Vegas, Nevada, India
3 Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, India
Abstract
Application of traditional ethical principles in developing countries may not, indeed should not, conform to the western philosophy and ideology. The principle of distributive justice is of utmost importance when critical resources are scarce. There is no ethical imperative, nor is one followed even in the most advanced countries, that every citizen is entitled to the very best available care. However, a society must establish a uniform code of ethics that can be applied nationally, whereby all citizens are eligible for a minimum acceptable level of care. The traditional principles of autonomy, beneficence, nonmaleficence and justice are still applicable in structuring an ethical framework that is most suited for the country's needs and resources.
Keywords: Ethics; Developing countries; Critical care; Children
"We dance around in circles and suppose; when the answer is in the center and knows"
…… Anonymous
The title of this paper might appear controversial to some practitioners. Indeed, technologic advances are not exclusive accomplishments of the western world, while the eastern world has not exactly cornered the market on wisdom. Many social and political developments around the world would attest to this observation. Nonetheless it is indisputable that there is a wide disparity among nations in terms of technologic resources, an increasing desire to obtain such technology by the "have nots", and greatly discrepant views as to the reasonableness of prevalent practices and utilization of resources. In this paper, we make a case for prudent use of the advances in the management of critically ill neonates and children with fairness and justice that is within an accepted ethical framework. We do not, and indeed are unqualified to, provide specific ethical guidelines. For the purpose of this article, we would define ethics as the rules or standards of conduct governing members of the medical profession.
Scope of the problem
Intensive care and modern technologic advances provide the patient every chance to attain his full potential. Patients suffering from diseases and conditions previously considered incurable, are living full and productive lives because of newer and potent treatment modalities. We now have the ability to monitor and treat nearly every organ dysfunction with highly sophisticated medical and surgical interventions. We have seen advances in the care of tiny premature babies, surgical correction of congenital heart disease, newer chemotherapeutic agents to treat cancer, and greater understanding of organ transplantation, to name just a few. As a result we have witnessed fulfilling and happy lives that were otherwise destined to an early demise only a couple of decades ago. However, these benefits are also coupled with an inherent risk of inflicting great harm and suffering both to the patient and the family. This harm and suffering may be physical, emotional or financial in nature. The physician's ability to control and manipulate life and death often challenges the basic ethical principles that have been preached over the centuries. It is our contention that to serve our patients and our society the best, modern technologic advances must be utilized only within an accepted ethical framework. It must be recognized that many considerations taken into account to constitute such a framework are potentially unique to a country and may be open to revision with changing times and conditions. At the same time, with globalization of medicine, ethical practices of any country are open to scrutiny and challenge by others. Organ selling and euthanasia are examples of such practices. Discrimination on the basis of age, gender, race, religion, physical handicaps, social worth, etc can hardly be considered ethical. Such practices, however traditional they may be, are justifiably open to criticism by the rest of the world.
While most technologic advances have come from the western countries, the ethical framework within which they are utilized may not be applicable to other countries especially the developing ones. Even among the most technologically advanced countries, there is a wide variation in ethical views and practices. It is not uncommon to see technology gone mad when hopelessly ill children are kept alive at great suffering and cost to patients, families and the society. Developing countries like India should not compulsorily follow the same ethical guidelines of countries where the technologic advances originated. Rather, they should develop their own moral and ethical code that is consistent with their cultural wisdom and which takes into account the nation's obligations to all its citizens in a just and fair fashion. Developing countries, with their limited resources, have the opportunity to participate in the technologic advances but in a controlled fashion, balancing the harm and the benefits of intensive care to the patient and the society. With technologic empowerment comes social responsibility which must be met.
Ethical principles
Just about every religion and culture has certain common denominators in terms of health care ethics. India is a multi-religious, multi-ethnic, multi-cultural and yet a secular society. It is blessed with millennia of wisdom, philosophy and values that come with centuries of civilization. India has the opportunity to develop an ethical framework that could serve as a template for the rest of the developing nations for utilizing scarce intensive care resources justly and fairly. Beauchamp and Childress have proposed four basic principles of health care ethics. These are autonomy, beneficence, nonmaleficence and justice.
Autonomy
The principle of autonomy defends the right of each individual to make his own decisions regarding health care. It is the physician's responsibility to provide medically acceptable management options and the patient's right to choose among them. Autonomy also assures the right of the patient to informed consent for treatment and for participation in research. Inherent to the principle of autonomy is respect for our fellow human beings and their right to self determination. Most children are not capable of making their decisions and have their parents or guardians as surrogate decision makers.
Beneficence
This principle refers to the physician's obligation to protect the welfare of the patient. This is perhaps the most idealistic and motivating force that drives aspiring physicians. Inherent to this principle is the physician's obligation to be the patient's advocate regardless of any other factors. Here the patient's well being as judged by the physician is the sole criterion for determining management. The needs of the society, family and other patients are superseded by the needs of the patient. The principle of beneficence protects the patient from lack of care or attention.
Nonmaleficence
It requires the physician to refrain from doing any harm to the patient. The principle of Primum Non Nocere or "Above all, first do no harm" protects the patient from physician's actions and obligates the physician to constantly balance harm versus benefit of his interventions.
Justice
Principle of justice ensures fairness of treatment compared to other patients who are similarly affected. Distributive justice is perhaps the most relevant ethical principle for developing countries with limited resources, to ensure that no one gets a disproportionate share of society's assets and capabilities. At the same time justice requires that no one is denied access to a reasonable amount of care as determined by the society.
It has to be recognized that all of these ethical principles are what is termed as prima facie principles. This means that they are honorable edicts at the first glance. They are however not absolute, and indeed each of these principles may be in conflict with any other principle. Every one of these principles can be overridden when there are other weightier moral considerations. Autonomy carried to an extreme would result in patients or their families refusing reasonable and socially accepted curative treatment or insisting on futile interventions. Their decisions may be unfairly influenced by medically and socially unacceptable cultural practices, ignorance, socioeconomic status and mental capacities. Beneficence although a fundamentally sound moral ideal, may exceed its limit in the form of paternalism and may unfairly enforce the physician's beliefs and convictions on the patient and the society. Superficially, nonmaleficence appears the most logical of all the ethical principles. However, the physician cannot hide behind the principle of nonmaleficence and avoid giving treatment when its benefits outweigh the risks. Finally, in its purest form justice will prevent advances in any field until complete social equality is ensured, a seemingly impossible task. For example, no resources could be spent for advances in medical and surgical technology until less sophisticated forms of care such as immunizations and antibiotics can be guaranteed for all citizens. Therefore all these ethical principles are prima facie principles that are applied within the context of the individual, the family, the community and indeed the entire country. Furthermore, even over a short period of time, the society's ethical values can change drastically. In the early 1970's a newborn with Down's syndrome and duodenal atresia referred to as Baby Doe, was allowed to die without surgery in the United States. Only a few years later such an interpretation of nonmaleficence would have been unthinkable. Also, it has been shown that there is wide variation among physicians and nurses from the technologically advanced countries as to the appropriateness of providing critical care in a variety of specific situations. The Italians, the Scandinavians, the British, the French, the Germans and the Americans demonstrated considerable differences among themselves as to what constitutes an ethical as opposed to an unethical action when it comes to providing life-sustaining intervention. It is our contention that developing countries like India are under no moral obligation to blindly follow ethics of Western countries, but rather develop their own moral and ethical code that is consistent with their cultural wisdom and which takes into account the nation's obligations to all its citizens in a just and fair fashion.
Common issues encountered in pediatric intensive care
Is it Morally Acceptable to Allow a Child to Die
It should be recognized that intensive care aims at preventing and treating potentially reversible catastrophic life threatening pathophysiologic impairments. The key phrase is "potentially reversible". When there is no reasonable chance of reversing organ dysfunction necessary for sustaining life, continuation of intensive care is futile, wasteful and irresponsible. Such children cannot benefit from intensive care and are best allowed to die with dignity and respect.
Which is More Important: Sanctity of Life or Quality of Life
There are patients who are at least temporarily salvageable but only with devastating physical and mental handicaps such as those with hypoxic-ischemic encephalopathy, and progressive degenerative neuromuscular disorders. Balancing the duty to preserve life with that of relieving pain and suffering is perhaps the most challenging ethical dilemma faced by neonatal and pediatric intensivists. To some, the right to life is such an overwhelming consideration that withholding intensive care is never an option. From a purely ethical perspective, the right to life is a prima facie right which is shared equally by all citizens. It cannot be overridden by such factors as intelligence, race or socioeconomic status. However, it can be, indeed should be, overridden when there are other weightier moral considerations that make intensive care interventions harmful and without justifiable benefits. Such is the case when the individual has irreversibly lost the capacity to exercise freedom of thought and freedom of action, to participate in human experience, and when continuation of life only prolongs pain and suffering. A child in persistent vegetative state cannot respond affectively or cognitively to human attention and environment and can only be harmed by intensive care. Similarly, a child with severe neuromuscular degenerative disorder such as end stage Werdnig Hoffman disease has only a life of pain and progressively incapacitating immobility to look forward to, making life-sustaining therapies unjustified. Indeed, sanctity of life and quality of life should not be considered in conflict but rather as complementary with each other. We should constantly assess quality of life as an extension of our obligation to protect sanctity of life. Our duty to uphold sanctity of life must force us to consider quality of the very life we are trying to preserve.
Is There Ethical Difference Between Withholding and Withdrawing Treatment
Most physicians find it difficult to withdraw life support that is already started as opposed to withholding it from the very beginning. However, ethically and morally there is no difference between withholding and withdrawing treatment. If the patient's condition changes or new information is gained during the course of treatment that otherwise would have precluded initiation of intensive care to begin with, withdrawal of such treatment is not only permissible but required.
Who Should Decide: Physicians or Parents
Most children are unable to exercise their right to autonomy. They depend upon the parents and the physicians to decide what is best for them. For centuries physicians have enjoyed the respect and the trust of society as the ultimate decision makers. This is clearly not the case anymore. There is a great deal of skepticism and distrust towards the medical profession. There are many factors responsible for this phenomenon that are beyond the scope of this discussion. In western society, it is not unusual to find many children subjected to painful, futile medical and surgical interventions at the insistence of their legal guardians or misguided physicians. Not only is futile care unethical, but also, developing countries simply cannot afford the wasteful expenditure of scarce resources. The decision making process has to be based on honest disclosure and mutual respect. In most situations, given reasonable time and information, parents and physicians make sound ethical decisions in the patient's interest. However, conflicts are going to arise and it is important for the medical profession to maintain credibility with the society by keeping its decision making process open to peer review and public scrutiny. A reasonable way to resolve such conflicts is through a review by not only peers but also by members of society. The objective of the institutional ethics committee is not to make decisions regarding patient care but to reflect the views of the society in a fair and impartial way that will help the physician and parents to come to a consensus.
When Can Children be Considered Organ Donors
Advances in transplant medicine have led to remarkable survival in children with life-threatening organ dysfunction. Availability of suitable organs remains a major obstacle in neonatal and pediatric transplant medicine. In intensive care units, patients who have suffered brain death are obvious candidates as organ donors. Not only is such organ donation permissible, but parents should be encouraged to view it as a gift of life to another child who is otherwise destined to die. Many parents find that organ donation brings added meaning to their child's life. An essential prerequisite for organ harvesting is a prior declaration of brain death. The concept of brain death must be firmly established with institutionally approved criteria. For moral, legal and ethical reasons brain death must be considered as equal to irreversible cessation of respiration and circulation. This is important to protect neonates and children who are suffering from devastating physical and mental handicaps from being exploited as organ donors. Children with anencephaly and persistent vegetative state are not brain dead and should not be killed for any reason including for their organs.
How to Care for Children for Whom Intensive Care is Not Beneficial Is "Mercy Killing" Justified
It is our contention that all humans, regardless of their physical and mental capacity, are inherently precious and are to be respected equally. When it has been determined that intensive care offers no benefit, it does not mean all care is to be abandoned. Such patients must be treated with respect, dignity, love and comfort. While withdrawal of food and water is considered ethically permissible by some authors, we believe death by starvation and dehydration is unnecessary, undignified and unaesthetic. In most situations, terminally ill children in whom death is not imminent, are best cared for at home. This allows the child to spend the remaining part of life in the presence of loved ones in an atmosphere of privacy and dignity. When medical therapy is deemed futile, the physician still has a duty to relieve pain and suffering with appropriate sedation and analgesia even if such therapy might result in the "double effect" of hastening death. By the same token, the Indian tradition, culture, all major religions, and indeed the above-mentioned ethical principles forbid us to engage in acts that are solely intended to cause the patient's death. While allowed in some European countries, the so called mercy killing represents an act of dehumanization and disrespect. In such situations, the medical profession has to live up to its responsibility of alleviating pain and suffering first, and to maintain respect and dignity of the patient to the end.
Conclusion
The availability of medical, surgical and technologic advances has created special ethical challenges in the care of a critically ill patient. The expense, pain and suffering encumbered by intensive care must be justified by its benefit to the individual, family and the society. Developing countries such as India have a special challenge in resource allocation and serving all its citizens. Every attempt must be made to honor the principle of distributive justice. It is a fact of life that every child does not receive the best of everything that a country has to offer. This is true even in the most advanced nations in the world. Nevertheless every society has the obligation to ensure that children are not dying from lack of a minimum level of care regardless of their socioeconomic status. The leaders in pediatric and neonatal intensive care must define the level of care based upon the nation's resources that must be ensured for all children. We suggest that oxygen, intravenous access and fluid resuscitation, antibiotics and non-invasive application of continuous positive airway pressure in a clean environment be considered minimum level intensive care facilities support that should be made available to all children, rich or poor. This is no easy undertaking but every effort must be made in this direction to justify state of the art intensive care for more privileged members of the society. Once intensive care is initiated, its continuance should be constantly evaluated in terms of harm inflicted and benefit gained. Developing countries are under no obligation to follow ethical guidelines of developed countries that are far from being infallible. As Sir William Osler observed, "knowledge comes but wisdom lingers". It behooves the medical profession to combine technologic advances and knowledge with the wisdom of knowing the difference between doing something for the patient and doing something to the patient.
References
Beauchamp TL, Childress JF, eds. Principles of Biomedical Ethics. New York, Oxford University Press, 2001.
Cassidy RC, Fleischman AR, eds. Pediatric Ethics: From Principles to Practice. Amsterdam, Harwood Academic Publishers, 1996.
Health Care Ethics. Anderson GR, Glesnes-Anderson VA. Rockville, Aspen Publishers Inc., 1987.
Cohen CB. Ethical Problems of Intensive Care. Anesthesiology 1977; 47 : 217-227.
Singh M. Ethical Considerations in Pediatric Intensive Care Unit: Indian Perspective. Indian Pediatr 1996; 33 : 271-278.(Sarnaik Ashok P, Daphtary)
2 Division of Pediatric Critical Care Medicine, Department of Pediatrics, University Medical Center and University of Nevada School of Medicine, Las Vegas, Nevada, India
3 Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, India
Abstract
Application of traditional ethical principles in developing countries may not, indeed should not, conform to the western philosophy and ideology. The principle of distributive justice is of utmost importance when critical resources are scarce. There is no ethical imperative, nor is one followed even in the most advanced countries, that every citizen is entitled to the very best available care. However, a society must establish a uniform code of ethics that can be applied nationally, whereby all citizens are eligible for a minimum acceptable level of care. The traditional principles of autonomy, beneficence, nonmaleficence and justice are still applicable in structuring an ethical framework that is most suited for the country's needs and resources.
Keywords: Ethics; Developing countries; Critical care; Children
"We dance around in circles and suppose; when the answer is in the center and knows"
…… Anonymous
The title of this paper might appear controversial to some practitioners. Indeed, technologic advances are not exclusive accomplishments of the western world, while the eastern world has not exactly cornered the market on wisdom. Many social and political developments around the world would attest to this observation. Nonetheless it is indisputable that there is a wide disparity among nations in terms of technologic resources, an increasing desire to obtain such technology by the "have nots", and greatly discrepant views as to the reasonableness of prevalent practices and utilization of resources. In this paper, we make a case for prudent use of the advances in the management of critically ill neonates and children with fairness and justice that is within an accepted ethical framework. We do not, and indeed are unqualified to, provide specific ethical guidelines. For the purpose of this article, we would define ethics as the rules or standards of conduct governing members of the medical profession.
Scope of the problem
Intensive care and modern technologic advances provide the patient every chance to attain his full potential. Patients suffering from diseases and conditions previously considered incurable, are living full and productive lives because of newer and potent treatment modalities. We now have the ability to monitor and treat nearly every organ dysfunction with highly sophisticated medical and surgical interventions. We have seen advances in the care of tiny premature babies, surgical correction of congenital heart disease, newer chemotherapeutic agents to treat cancer, and greater understanding of organ transplantation, to name just a few. As a result we have witnessed fulfilling and happy lives that were otherwise destined to an early demise only a couple of decades ago. However, these benefits are also coupled with an inherent risk of inflicting great harm and suffering both to the patient and the family. This harm and suffering may be physical, emotional or financial in nature. The physician's ability to control and manipulate life and death often challenges the basic ethical principles that have been preached over the centuries. It is our contention that to serve our patients and our society the best, modern technologic advances must be utilized only within an accepted ethical framework. It must be recognized that many considerations taken into account to constitute such a framework are potentially unique to a country and may be open to revision with changing times and conditions. At the same time, with globalization of medicine, ethical practices of any country are open to scrutiny and challenge by others. Organ selling and euthanasia are examples of such practices. Discrimination on the basis of age, gender, race, religion, physical handicaps, social worth, etc can hardly be considered ethical. Such practices, however traditional they may be, are justifiably open to criticism by the rest of the world.
While most technologic advances have come from the western countries, the ethical framework within which they are utilized may not be applicable to other countries especially the developing ones. Even among the most technologically advanced countries, there is a wide variation in ethical views and practices. It is not uncommon to see technology gone mad when hopelessly ill children are kept alive at great suffering and cost to patients, families and the society. Developing countries like India should not compulsorily follow the same ethical guidelines of countries where the technologic advances originated. Rather, they should develop their own moral and ethical code that is consistent with their cultural wisdom and which takes into account the nation's obligations to all its citizens in a just and fair fashion. Developing countries, with their limited resources, have the opportunity to participate in the technologic advances but in a controlled fashion, balancing the harm and the benefits of intensive care to the patient and the society. With technologic empowerment comes social responsibility which must be met.
Ethical principles
Just about every religion and culture has certain common denominators in terms of health care ethics. India is a multi-religious, multi-ethnic, multi-cultural and yet a secular society. It is blessed with millennia of wisdom, philosophy and values that come with centuries of civilization. India has the opportunity to develop an ethical framework that could serve as a template for the rest of the developing nations for utilizing scarce intensive care resources justly and fairly. Beauchamp and Childress have proposed four basic principles of health care ethics. These are autonomy, beneficence, nonmaleficence and justice.
Autonomy
The principle of autonomy defends the right of each individual to make his own decisions regarding health care. It is the physician's responsibility to provide medically acceptable management options and the patient's right to choose among them. Autonomy also assures the right of the patient to informed consent for treatment and for participation in research. Inherent to the principle of autonomy is respect for our fellow human beings and their right to self determination. Most children are not capable of making their decisions and have their parents or guardians as surrogate decision makers.
Beneficence
This principle refers to the physician's obligation to protect the welfare of the patient. This is perhaps the most idealistic and motivating force that drives aspiring physicians. Inherent to this principle is the physician's obligation to be the patient's advocate regardless of any other factors. Here the patient's well being as judged by the physician is the sole criterion for determining management. The needs of the society, family and other patients are superseded by the needs of the patient. The principle of beneficence protects the patient from lack of care or attention.
Nonmaleficence
It requires the physician to refrain from doing any harm to the patient. The principle of Primum Non Nocere or "Above all, first do no harm" protects the patient from physician's actions and obligates the physician to constantly balance harm versus benefit of his interventions.
Justice
Principle of justice ensures fairness of treatment compared to other patients who are similarly affected. Distributive justice is perhaps the most relevant ethical principle for developing countries with limited resources, to ensure that no one gets a disproportionate share of society's assets and capabilities. At the same time justice requires that no one is denied access to a reasonable amount of care as determined by the society.
It has to be recognized that all of these ethical principles are what is termed as prima facie principles. This means that they are honorable edicts at the first glance. They are however not absolute, and indeed each of these principles may be in conflict with any other principle. Every one of these principles can be overridden when there are other weightier moral considerations. Autonomy carried to an extreme would result in patients or their families refusing reasonable and socially accepted curative treatment or insisting on futile interventions. Their decisions may be unfairly influenced by medically and socially unacceptable cultural practices, ignorance, socioeconomic status and mental capacities. Beneficence although a fundamentally sound moral ideal, may exceed its limit in the form of paternalism and may unfairly enforce the physician's beliefs and convictions on the patient and the society. Superficially, nonmaleficence appears the most logical of all the ethical principles. However, the physician cannot hide behind the principle of nonmaleficence and avoid giving treatment when its benefits outweigh the risks. Finally, in its purest form justice will prevent advances in any field until complete social equality is ensured, a seemingly impossible task. For example, no resources could be spent for advances in medical and surgical technology until less sophisticated forms of care such as immunizations and antibiotics can be guaranteed for all citizens. Therefore all these ethical principles are prima facie principles that are applied within the context of the individual, the family, the community and indeed the entire country. Furthermore, even over a short period of time, the society's ethical values can change drastically. In the early 1970's a newborn with Down's syndrome and duodenal atresia referred to as Baby Doe, was allowed to die without surgery in the United States. Only a few years later such an interpretation of nonmaleficence would have been unthinkable. Also, it has been shown that there is wide variation among physicians and nurses from the technologically advanced countries as to the appropriateness of providing critical care in a variety of specific situations. The Italians, the Scandinavians, the British, the French, the Germans and the Americans demonstrated considerable differences among themselves as to what constitutes an ethical as opposed to an unethical action when it comes to providing life-sustaining intervention. It is our contention that developing countries like India are under no moral obligation to blindly follow ethics of Western countries, but rather develop their own moral and ethical code that is consistent with their cultural wisdom and which takes into account the nation's obligations to all its citizens in a just and fair fashion.
Common issues encountered in pediatric intensive care
Is it Morally Acceptable to Allow a Child to Die
It should be recognized that intensive care aims at preventing and treating potentially reversible catastrophic life threatening pathophysiologic impairments. The key phrase is "potentially reversible". When there is no reasonable chance of reversing organ dysfunction necessary for sustaining life, continuation of intensive care is futile, wasteful and irresponsible. Such children cannot benefit from intensive care and are best allowed to die with dignity and respect.
Which is More Important: Sanctity of Life or Quality of Life
There are patients who are at least temporarily salvageable but only with devastating physical and mental handicaps such as those with hypoxic-ischemic encephalopathy, and progressive degenerative neuromuscular disorders. Balancing the duty to preserve life with that of relieving pain and suffering is perhaps the most challenging ethical dilemma faced by neonatal and pediatric intensivists. To some, the right to life is such an overwhelming consideration that withholding intensive care is never an option. From a purely ethical perspective, the right to life is a prima facie right which is shared equally by all citizens. It cannot be overridden by such factors as intelligence, race or socioeconomic status. However, it can be, indeed should be, overridden when there are other weightier moral considerations that make intensive care interventions harmful and without justifiable benefits. Such is the case when the individual has irreversibly lost the capacity to exercise freedom of thought and freedom of action, to participate in human experience, and when continuation of life only prolongs pain and suffering. A child in persistent vegetative state cannot respond affectively or cognitively to human attention and environment and can only be harmed by intensive care. Similarly, a child with severe neuromuscular degenerative disorder such as end stage Werdnig Hoffman disease has only a life of pain and progressively incapacitating immobility to look forward to, making life-sustaining therapies unjustified. Indeed, sanctity of life and quality of life should not be considered in conflict but rather as complementary with each other. We should constantly assess quality of life as an extension of our obligation to protect sanctity of life. Our duty to uphold sanctity of life must force us to consider quality of the very life we are trying to preserve.
Is There Ethical Difference Between Withholding and Withdrawing Treatment
Most physicians find it difficult to withdraw life support that is already started as opposed to withholding it from the very beginning. However, ethically and morally there is no difference between withholding and withdrawing treatment. If the patient's condition changes or new information is gained during the course of treatment that otherwise would have precluded initiation of intensive care to begin with, withdrawal of such treatment is not only permissible but required.
Who Should Decide: Physicians or Parents
Most children are unable to exercise their right to autonomy. They depend upon the parents and the physicians to decide what is best for them. For centuries physicians have enjoyed the respect and the trust of society as the ultimate decision makers. This is clearly not the case anymore. There is a great deal of skepticism and distrust towards the medical profession. There are many factors responsible for this phenomenon that are beyond the scope of this discussion. In western society, it is not unusual to find many children subjected to painful, futile medical and surgical interventions at the insistence of their legal guardians or misguided physicians. Not only is futile care unethical, but also, developing countries simply cannot afford the wasteful expenditure of scarce resources. The decision making process has to be based on honest disclosure and mutual respect. In most situations, given reasonable time and information, parents and physicians make sound ethical decisions in the patient's interest. However, conflicts are going to arise and it is important for the medical profession to maintain credibility with the society by keeping its decision making process open to peer review and public scrutiny. A reasonable way to resolve such conflicts is through a review by not only peers but also by members of society. The objective of the institutional ethics committee is not to make decisions regarding patient care but to reflect the views of the society in a fair and impartial way that will help the physician and parents to come to a consensus.
When Can Children be Considered Organ Donors
Advances in transplant medicine have led to remarkable survival in children with life-threatening organ dysfunction. Availability of suitable organs remains a major obstacle in neonatal and pediatric transplant medicine. In intensive care units, patients who have suffered brain death are obvious candidates as organ donors. Not only is such organ donation permissible, but parents should be encouraged to view it as a gift of life to another child who is otherwise destined to die. Many parents find that organ donation brings added meaning to their child's life. An essential prerequisite for organ harvesting is a prior declaration of brain death. The concept of brain death must be firmly established with institutionally approved criteria. For moral, legal and ethical reasons brain death must be considered as equal to irreversible cessation of respiration and circulation. This is important to protect neonates and children who are suffering from devastating physical and mental handicaps from being exploited as organ donors. Children with anencephaly and persistent vegetative state are not brain dead and should not be killed for any reason including for their organs.
How to Care for Children for Whom Intensive Care is Not Beneficial Is "Mercy Killing" Justified
It is our contention that all humans, regardless of their physical and mental capacity, are inherently precious and are to be respected equally. When it has been determined that intensive care offers no benefit, it does not mean all care is to be abandoned. Such patients must be treated with respect, dignity, love and comfort. While withdrawal of food and water is considered ethically permissible by some authors, we believe death by starvation and dehydration is unnecessary, undignified and unaesthetic. In most situations, terminally ill children in whom death is not imminent, are best cared for at home. This allows the child to spend the remaining part of life in the presence of loved ones in an atmosphere of privacy and dignity. When medical therapy is deemed futile, the physician still has a duty to relieve pain and suffering with appropriate sedation and analgesia even if such therapy might result in the "double effect" of hastening death. By the same token, the Indian tradition, culture, all major religions, and indeed the above-mentioned ethical principles forbid us to engage in acts that are solely intended to cause the patient's death. While allowed in some European countries, the so called mercy killing represents an act of dehumanization and disrespect. In such situations, the medical profession has to live up to its responsibility of alleviating pain and suffering first, and to maintain respect and dignity of the patient to the end.
Conclusion
The availability of medical, surgical and technologic advances has created special ethical challenges in the care of a critically ill patient. The expense, pain and suffering encumbered by intensive care must be justified by its benefit to the individual, family and the society. Developing countries such as India have a special challenge in resource allocation and serving all its citizens. Every attempt must be made to honor the principle of distributive justice. It is a fact of life that every child does not receive the best of everything that a country has to offer. This is true even in the most advanced nations in the world. Nevertheless every society has the obligation to ensure that children are not dying from lack of a minimum level of care regardless of their socioeconomic status. The leaders in pediatric and neonatal intensive care must define the level of care based upon the nation's resources that must be ensured for all children. We suggest that oxygen, intravenous access and fluid resuscitation, antibiotics and non-invasive application of continuous positive airway pressure in a clean environment be considered minimum level intensive care facilities support that should be made available to all children, rich or poor. This is no easy undertaking but every effort must be made in this direction to justify state of the art intensive care for more privileged members of the society. Once intensive care is initiated, its continuance should be constantly evaluated in terms of harm inflicted and benefit gained. Developing countries are under no obligation to follow ethical guidelines of developed countries that are far from being infallible. As Sir William Osler observed, "knowledge comes but wisdom lingers". It behooves the medical profession to combine technologic advances and knowledge with the wisdom of knowing the difference between doing something for the patient and doing something to the patient.
References
Beauchamp TL, Childress JF, eds. Principles of Biomedical Ethics. New York, Oxford University Press, 2001.
Cassidy RC, Fleischman AR, eds. Pediatric Ethics: From Principles to Practice. Amsterdam, Harwood Academic Publishers, 1996.
Health Care Ethics. Anderson GR, Glesnes-Anderson VA. Rockville, Aspen Publishers Inc., 1987.
Cohen CB. Ethical Problems of Intensive Care. Anesthesiology 1977; 47 : 217-227.
Singh M. Ethical Considerations in Pediatric Intensive Care Unit: Indian Perspective. Indian Pediatr 1996; 33 : 271-278.(Sarnaik Ashok P, Daphtary)