The Patient Self-Determination Act: A Legal Solution for a Moral Dilemma JOS V. M. WELIE
Introduction The Patient Self-Determination Act is a fact. Finally, respect for patient autonomy has been guaranteed. At first sight, there seems little reason to object to any measure that intends to increase the autonomy of the patient. Too long, one may argue, physicians have behaved paternalistically; too often, they have been advised to change this habit. If the profession of medicine is unwilling or simply unable to grant the patient the decision-making power that is her due, the law has to step in. One may add, this law in no way hinders professional autonomy; by requiring a hospital official to provide the patient with information about advance directives, the law actually reduces the work load of the physician, who is already overburdened. Despite these apparent positive aspects, this law actually is one more step on a very regrettable path. By itself, the law is not very troublesome, although, as we will see in a moment, there are some pragmatic problems. However, the law reflects an ideological development that is very distressing yet seems impossible to halt. In the following article, both pragmatic and ideological problems will be discussed, followed by a brief comparison between this law and similar developments in one European country, The Netherlands. Suggestions will be made regarding possible long- and short-term alternatives.
Pragmatic Problems From a pragmatic point of view, the first question to be raised is "Is this law going to work?" To be more precise, "Is the purpose of the law going to be realized?" For there is little doubt that hospitals will abide by the law. Most likely, one more form will be drafted by the institution, briefly outlining the nature of advanced directives, the patient's right to draft such a document and/or change and/or annul it, and the institution's policy regarding the implementation of such rights. The patient will be asked to check the "YES" or "NO" box, depending on whether she has already issued such a document. Upon checking "YES," the patient is asked by the form to present a copy of the directive or an address where it can be obtained. Upon checking "NO," the patient will be asked to turn the page, where she will find a blank directive, to be completed if so wished. Finally, the patient will be told to date and sign this form, thereby indicating that she has fully understood all the information provided. Because the patient has to sign a whole stack of other so-called "inCambridge Quarterly of Healthcare Ethics (1992), 1, 75-79. Printed in the USA. Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00
75
Jos V. M. Welie
formed consent" forms, why not add this one to the stack? It will cost the institution little more money and may prevent many a lawsuit. Is this law going to increase the patient's autonomy? What about those patients who simply do not wish to be informed about advance directives? This law leaves no room for a right NOT to be informed, a right that is as much part of patient self-determination as is the right to be informed. Granted, for those few patients who were planning on or have already issued an advance directive, the law will indeed increase the chances that this directive will be executed properly. But what about the vast majority of patients who have not done so, who have never even heard of such a document, and who may have never even thought about the problems involved in high-tech medical care? Much will depend on the educational qualities of the person who is responsible for explaining and helping the newly admitted patient with the execution of the law. Yet the law contains no instruction in that regard. This person must have considerable medical knowledge, counseling skills, some acquaintance with the state laws, and a good insight into the ethical aspects of advance directives. This person must have the time to sit down with the patient and to establish a relationship of trust so these emotional and delicate matters can be dealt with properly and for the patient's benefit. Finally, this person must be available to the patient when, at a later time, the patient needs to talk about the issue again. Patients are known to retain about five information items per consultation only, whereas on the first day of entrance in the hospital the patient meets more than 50 different people who all have something to tell her. No doubt, many patients will want to discuss the issue once more; actually, every patient should be approached again to rediscuss the issue. Given these requirements, why has the obligation to inform the patient about advance directives not been assigned to the physician? Indeed, the law does not contain any explicit indication that physicians no longer are required to carefully inform the patient and to act as much as possible in accordance with the wishes of the patient. However, this new law may make it easier for physicians who do not inform their patients adequately to escape legal retribution. A medical disciplinary board, for example, may be convinced that a physician does not meet the professional standards of adequate informed consent. Yet, the board no longer can charge the physician with unprofessional practice if the board cannot prove a violation of the written laws pertaining to informed consent. Given this new law, which requires the hospital (and not the physician) to provide certain information, the physician charged by the board might argue that this law implicitly relieves the physician from the duty to inform the patient about advance directives, that it was not unreasonable to assume that the patient had been informed about advance directives in general and about the right to write, withdraw, or alter an advance directive at any time during the treatment, that he cannot be said to have behaved unprofessionally when he decided not to engage again with his patient in an emotion-laden and time-consuming discussion on this subject, and that, therefore, the patient cannot complain that he, as her physician, should have reminded her explicitly that she had the option to refuse intravenous feeding even though her advance directive contained directives to the contrary. Assigning the obligation to the physician instead of to an administrative hospital representative, however, would not have fully solved the latter problem. A physician charged with inadequately informing the patient about advance directives would not be able to
76
The Patient Self-Determination Act
claim that the law assigns that duty to another caretaker. However, obedience to the letter of the law—a practice that, as we have seen, may very well run contrary to the spirit of the law —will render the physician immune to criticism from professional peers. This situation is the core of the problem, not only with this law, but with every attempt to improve patient rights by legalizing the doctor-patient relationship. Ideological Problems Most Western societies have embraced the law as the single remedy against pluralism spilling over into anarchy. Convinced that consensus on values cannot be reached, fearful of well-intended but unappreciated paternalism, and distrustful of every authority, every expert, and every professional, society has decided to accept only one set of rules for the game of life: the law. Society legislates, prosecutes, indicts, sues, litigates, appeals; all in fair play but resulting in a rather primitive game, not much different from Hobbes' war of all against all. Trust has been replaced by distrust in almost all sectors of society, including the healthcare field. It cannot be denied that patients have good reasons for their increased distrust. Although medicine as a science is considerably more trustworthy nowadays than it was around the turn of the century, medicine is practiced by people, and these people can be trusted less and less. This is not because practitioners have become increasingly malicious, corrupt, or otherwise untrustworthy human beings; it is their professional role that can be trusted less and less. Trust in a physician concerns first and foremost the role of physician, the idea that this person represents medical professionalism. As such, physicians have not become more trustworthy over the years. There is an ever growing body of medical knowledge requiring specialization and superspecialization, leading to a decreasing importance of primary caregivers and an increasing fragmentation of care; there is a growth of medical technology that is less and less understandable and explainable to the layman; there is the institution of the hospital that is increasingly complex and alienating; there is the budget that requires more of a business approach to healthcare, less time for patient contact, and fewer personnel; and there are increasingly complex ethical dilemmas for which nobody wants to bear responsibility. In sum, it becomes harder and harder for physicians and patients to establish relationships of trust. Although laws clarify, redefine, and create order, they do not truly solve the problem. On the contrary, they affirm the existence of the problem and, in a way, sanction its existence. Why is it that friends do not ask one another to sign a contract when one borrows the other's car? Why is it that most couples do not draft a contract when they marry, specifying all duties and penalties for a future failure to fulfill those duties? It is not merely that there is no need for a written legally binding agreement; even the suggestion of a contract in such a context would be inappropriate. Contracts, and laws in general, affirm, provoke, and generate distrust. Personally, I cannot deny that a strange feeling of distrust creeps up on me when, upon entering the office of an American physician or dentist, a hospital, or even the blood bank, the doctor's assistant welcomes me with a friendly smile while handing over a stack of forms that I am supposed to carefully read and sign.
77
Jos V. M. Welie
Developments in The Netherlands Informed consent forms, to my knowledge, are truly an American phenomenon, though they are no longer limited to American healthcare facilities. Neither is suing physicians and hospitals. My impression is that nowhere in the world is the incidence of lawsuits against healthcare providers as high as it is in the United States. However, distrust in physicians, certainly, is not a typical American phenomenon. The tendency to legalize the doctorpatient relationship is growing elsewhere as well, including in The Netherlands. For almost 20 years, Dutch health lawyers have been promoting a legal definition of the doctorpatient relationship. They are about to have their way. The Dutch civil law is currently being revised in its totality. One of the new additions is the proposed law on the Therapeutical Contract. This law requires patients to pay for their services and to give the healthcare provider any information needed to fulfill his or her duties as specified by the contract. Most of the other 19 articles list obligations of the healthcare provider, such as the duty to inform the patient in written form, if so requested by the patient. The last article states that the parties cannot draft a contract that differs from the regulations of this law. Once part of the Civil Code, this law will be enforceable like any other civil law. The second example pertains to the Dutch Medical Disciplinary Law. This law, too, is in the process of revision. In the new disciplinary law for healthcare professionals, the old obligation'not to undermine the trust in the medical profession will disappear. The law will require providers 1) not to fail in the provision of care that he or she is required to provide and 2) not to cause-any serious harm. Although neither of the proposals for these laws contains a provision on advance directives, they do reflect the same philosophy: detailed definition, description, and regulation of the provider-patient relationship in legal terms. One may object that relationships between healthcare provider and patient and between healthcare institution and patient are relationships that, like any other relationship, already fall under the law. The discussion, then, can only pertain to the contents of the law on the provider-patient relationship, not to the very law itself. This objection, however, is not self-evidently true, for the hypothesis that all human relationships fall within the scope of the law is incorrect. Friendship and marital relationships, for example, do not. Granted, there is extensive legislation in every country on marital relationships, but such legislation fails to define and describe the essence of these relationships. If definitions were included, those laws could not be adjusted so easily—as they currently are, among others in The Netherlands—to other partnerships, such as homosexual partnerships and so-called "front-door sharers." Furthermore, most of the laws on marriage pertain to the relationship between the married couple and society at large, not to the relationship between the two spouses. And insofar as it does pertain to the spouses, the law regards mostly the ending of that relationship: separation, divorce, and death. The very essence of the marital relationship fully escapes the law. Similarly, one might argue, the doctor-patient relationship is essentially beyond (not above, but beyond) the law; it is nonlegal. In this regard, the new Dutch disciplinary law for the health professions, indeed, does not even attempt to define the essence of the doctor-patient relationship. The second most important feature of the law (besides abandoning the idea of trust) is its abandonment of the physician's monopoly on medical treatment. The law merely reserves a very limited and well-defined number of rather dangerous di78
The Patient Self-Determination Act agnostic and therapeutic interventions for the licensed practitioner. The reason behind those reservations, obviously, is technical knowledge and skills, not much different from licensing only well-trained pilots to fly commercial airplanes. In its essence, the doctorpatient relationship is like any other relationship in which one person is contracted to provide a service to another person. At least, one might argue, this new disciplinary law is consistent. It does not try to legalize a relationship while keeping that relationship as nonlegal as possible. But is that the right alternative? Is There an Alternative? A radical approach, such as that outlined by the new Dutch disciplinary law for health professionals, has one advantage (besides its legal consistency): it leaves some room for the development of new provider-patient relationships based on trust as opposed to distrust. Maybe it is necessary to be truly radical, to read the signs of the time, and to act accordingly. Maybe it is time to create a new "physician" role, a primary caregiver 1) who has time to explain and discuss at length with the patient such complex issues as advance directives because he is not booked 95% of the day with surgeries; 2) who does not have to fear patients suing for imperfect surgeries because he simply does not perform surgeries; in fact, he does not treat at all —he subcontracts those who diagnose, treat, deliver, and operate; and 3) who moves with the patient from ward to ward instead of sticking to one ward treating new patients all the time; in short, a primary caregiver with whom the patient can develop a relationship of trust. Granted, this alternative is not likely to occur, at least not in the short run (though I am less confident about the more remote future). Is it possible to "fix" the current medical profession such that it will regain its trustworthiness? This too is unlikely, for it has been tried over the last 20 years, resulting merely in an increased number of lawsuits and legislative activities, among them the new Patient Self-Determination Act. Can we sit on the fence, run with the hare, and hunt with the hounds? This is what hospital ethics committees try to do. They do not directly participate in patient care, but they protect patient rights by cautiously influencing physician decision making. The problem with such committees is that they, very much like laws, affirm the unavoidable lack of trust that comes with moral pluralism. Instead of attacking this problem, a number of representatives from different disciplines and normative backgrounds are called together to solve the disagreements that (are thought to) exist between patient and physician. The committees have representation, debate, and sometimes even voting; formally the structure is very democratic, very legalistic. Still, no individual person is to be trusted and held responsible but a collective, whose unity paradoxically lies in disagreement. If a solution can be found, we ought to think in terms of the one section in the Patient Self-Determination Act that has not yet been discussed: the requirement to educate staff and community about advance directives. As usual, preventing is better than healing. Good prevention does not interfere with patient autonomy nor with provider autonomy. And it does not stand in the way of a patient-doctor relationship built on trust. Good education prior to patient admission can prevent a lot of the dilemmas. Actually, it could probably have prevented the need for all the other articles in the Act. 79
Introduction The Patient Self-Determination Act is a fact. Finally, respect for patient autonomy has been guaranteed. At first sight, there seems little reason to object to any measure that intends to increase the autonomy of the patient. Too long, one may argue, physicians have behaved paternalistically; too often, they have been advised to change this habit. If the profession of medicine is unwilling or simply unable to grant the patient the decision-making power that is her due, the law has to step in. One may add, this law in no way hinders professional autonomy; by requiring a hospital official to provide the patient with information about advance directives, the law actually reduces the work load of the physician, who is already overburdened. Despite these apparent positive aspects, this law actually is one more step on a very regrettable path. By itself, the law is not very troublesome, although, as we will see in a moment, there are some pragmatic problems. However, the law reflects an ideological development that is very distressing yet seems impossible to halt. In the following article, both pragmatic and ideological problems will be discussed, followed by a brief comparison between this law and similar developments in one European country, The Netherlands. Suggestions will be made regarding possible long- and short-term alternatives.
Pragmatic Problems From a pragmatic point of view, the first question to be raised is "Is this law going to work?" To be more precise, "Is the purpose of the law going to be realized?" For there is little doubt that hospitals will abide by the law. Most likely, one more form will be drafted by the institution, briefly outlining the nature of advanced directives, the patient's right to draft such a document and/or change and/or annul it, and the institution's policy regarding the implementation of such rights. The patient will be asked to check the "YES" or "NO" box, depending on whether she has already issued such a document. Upon checking "YES," the patient is asked by the form to present a copy of the directive or an address where it can be obtained. Upon checking "NO," the patient will be asked to turn the page, where she will find a blank directive, to be completed if so wished. Finally, the patient will be told to date and sign this form, thereby indicating that she has fully understood all the information provided. Because the patient has to sign a whole stack of other so-called "inCambridge Quarterly of Healthcare Ethics (1992), 1, 75-79. Printed in the USA. Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00
75
Jos V. M. Welie
formed consent" forms, why not add this one to the stack? It will cost the institution little more money and may prevent many a lawsuit. Is this law going to increase the patient's autonomy? What about those patients who simply do not wish to be informed about advance directives? This law leaves no room for a right NOT to be informed, a right that is as much part of patient self-determination as is the right to be informed. Granted, for those few patients who were planning on or have already issued an advance directive, the law will indeed increase the chances that this directive will be executed properly. But what about the vast majority of patients who have not done so, who have never even heard of such a document, and who may have never even thought about the problems involved in high-tech medical care? Much will depend on the educational qualities of the person who is responsible for explaining and helping the newly admitted patient with the execution of the law. Yet the law contains no instruction in that regard. This person must have considerable medical knowledge, counseling skills, some acquaintance with the state laws, and a good insight into the ethical aspects of advance directives. This person must have the time to sit down with the patient and to establish a relationship of trust so these emotional and delicate matters can be dealt with properly and for the patient's benefit. Finally, this person must be available to the patient when, at a later time, the patient needs to talk about the issue again. Patients are known to retain about five information items per consultation only, whereas on the first day of entrance in the hospital the patient meets more than 50 different people who all have something to tell her. No doubt, many patients will want to discuss the issue once more; actually, every patient should be approached again to rediscuss the issue. Given these requirements, why has the obligation to inform the patient about advance directives not been assigned to the physician? Indeed, the law does not contain any explicit indication that physicians no longer are required to carefully inform the patient and to act as much as possible in accordance with the wishes of the patient. However, this new law may make it easier for physicians who do not inform their patients adequately to escape legal retribution. A medical disciplinary board, for example, may be convinced that a physician does not meet the professional standards of adequate informed consent. Yet, the board no longer can charge the physician with unprofessional practice if the board cannot prove a violation of the written laws pertaining to informed consent. Given this new law, which requires the hospital (and not the physician) to provide certain information, the physician charged by the board might argue that this law implicitly relieves the physician from the duty to inform the patient about advance directives, that it was not unreasonable to assume that the patient had been informed about advance directives in general and about the right to write, withdraw, or alter an advance directive at any time during the treatment, that he cannot be said to have behaved unprofessionally when he decided not to engage again with his patient in an emotion-laden and time-consuming discussion on this subject, and that, therefore, the patient cannot complain that he, as her physician, should have reminded her explicitly that she had the option to refuse intravenous feeding even though her advance directive contained directives to the contrary. Assigning the obligation to the physician instead of to an administrative hospital representative, however, would not have fully solved the latter problem. A physician charged with inadequately informing the patient about advance directives would not be able to
76
The Patient Self-Determination Act
claim that the law assigns that duty to another caretaker. However, obedience to the letter of the law—a practice that, as we have seen, may very well run contrary to the spirit of the law —will render the physician immune to criticism from professional peers. This situation is the core of the problem, not only with this law, but with every attempt to improve patient rights by legalizing the doctor-patient relationship. Ideological Problems Most Western societies have embraced the law as the single remedy against pluralism spilling over into anarchy. Convinced that consensus on values cannot be reached, fearful of well-intended but unappreciated paternalism, and distrustful of every authority, every expert, and every professional, society has decided to accept only one set of rules for the game of life: the law. Society legislates, prosecutes, indicts, sues, litigates, appeals; all in fair play but resulting in a rather primitive game, not much different from Hobbes' war of all against all. Trust has been replaced by distrust in almost all sectors of society, including the healthcare field. It cannot be denied that patients have good reasons for their increased distrust. Although medicine as a science is considerably more trustworthy nowadays than it was around the turn of the century, medicine is practiced by people, and these people can be trusted less and less. This is not because practitioners have become increasingly malicious, corrupt, or otherwise untrustworthy human beings; it is their professional role that can be trusted less and less. Trust in a physician concerns first and foremost the role of physician, the idea that this person represents medical professionalism. As such, physicians have not become more trustworthy over the years. There is an ever growing body of medical knowledge requiring specialization and superspecialization, leading to a decreasing importance of primary caregivers and an increasing fragmentation of care; there is a growth of medical technology that is less and less understandable and explainable to the layman; there is the institution of the hospital that is increasingly complex and alienating; there is the budget that requires more of a business approach to healthcare, less time for patient contact, and fewer personnel; and there are increasingly complex ethical dilemmas for which nobody wants to bear responsibility. In sum, it becomes harder and harder for physicians and patients to establish relationships of trust. Although laws clarify, redefine, and create order, they do not truly solve the problem. On the contrary, they affirm the existence of the problem and, in a way, sanction its existence. Why is it that friends do not ask one another to sign a contract when one borrows the other's car? Why is it that most couples do not draft a contract when they marry, specifying all duties and penalties for a future failure to fulfill those duties? It is not merely that there is no need for a written legally binding agreement; even the suggestion of a contract in such a context would be inappropriate. Contracts, and laws in general, affirm, provoke, and generate distrust. Personally, I cannot deny that a strange feeling of distrust creeps up on me when, upon entering the office of an American physician or dentist, a hospital, or even the blood bank, the doctor's assistant welcomes me with a friendly smile while handing over a stack of forms that I am supposed to carefully read and sign.
77
Jos V. M. Welie
Developments in The Netherlands Informed consent forms, to my knowledge, are truly an American phenomenon, though they are no longer limited to American healthcare facilities. Neither is suing physicians and hospitals. My impression is that nowhere in the world is the incidence of lawsuits against healthcare providers as high as it is in the United States. However, distrust in physicians, certainly, is not a typical American phenomenon. The tendency to legalize the doctorpatient relationship is growing elsewhere as well, including in The Netherlands. For almost 20 years, Dutch health lawyers have been promoting a legal definition of the doctorpatient relationship. They are about to have their way. The Dutch civil law is currently being revised in its totality. One of the new additions is the proposed law on the Therapeutical Contract. This law requires patients to pay for their services and to give the healthcare provider any information needed to fulfill his or her duties as specified by the contract. Most of the other 19 articles list obligations of the healthcare provider, such as the duty to inform the patient in written form, if so requested by the patient. The last article states that the parties cannot draft a contract that differs from the regulations of this law. Once part of the Civil Code, this law will be enforceable like any other civil law. The second example pertains to the Dutch Medical Disciplinary Law. This law, too, is in the process of revision. In the new disciplinary law for healthcare professionals, the old obligation'not to undermine the trust in the medical profession will disappear. The law will require providers 1) not to fail in the provision of care that he or she is required to provide and 2) not to cause-any serious harm. Although neither of the proposals for these laws contains a provision on advance directives, they do reflect the same philosophy: detailed definition, description, and regulation of the provider-patient relationship in legal terms. One may object that relationships between healthcare provider and patient and between healthcare institution and patient are relationships that, like any other relationship, already fall under the law. The discussion, then, can only pertain to the contents of the law on the provider-patient relationship, not to the very law itself. This objection, however, is not self-evidently true, for the hypothesis that all human relationships fall within the scope of the law is incorrect. Friendship and marital relationships, for example, do not. Granted, there is extensive legislation in every country on marital relationships, but such legislation fails to define and describe the essence of these relationships. If definitions were included, those laws could not be adjusted so easily—as they currently are, among others in The Netherlands—to other partnerships, such as homosexual partnerships and so-called "front-door sharers." Furthermore, most of the laws on marriage pertain to the relationship between the married couple and society at large, not to the relationship between the two spouses. And insofar as it does pertain to the spouses, the law regards mostly the ending of that relationship: separation, divorce, and death. The very essence of the marital relationship fully escapes the law. Similarly, one might argue, the doctor-patient relationship is essentially beyond (not above, but beyond) the law; it is nonlegal. In this regard, the new Dutch disciplinary law for the health professions, indeed, does not even attempt to define the essence of the doctor-patient relationship. The second most important feature of the law (besides abandoning the idea of trust) is its abandonment of the physician's monopoly on medical treatment. The law merely reserves a very limited and well-defined number of rather dangerous di78
The Patient Self-Determination Act agnostic and therapeutic interventions for the licensed practitioner. The reason behind those reservations, obviously, is technical knowledge and skills, not much different from licensing only well-trained pilots to fly commercial airplanes. In its essence, the doctorpatient relationship is like any other relationship in which one person is contracted to provide a service to another person. At least, one might argue, this new disciplinary law is consistent. It does not try to legalize a relationship while keeping that relationship as nonlegal as possible. But is that the right alternative? Is There an Alternative? A radical approach, such as that outlined by the new Dutch disciplinary law for health professionals, has one advantage (besides its legal consistency): it leaves some room for the development of new provider-patient relationships based on trust as opposed to distrust. Maybe it is necessary to be truly radical, to read the signs of the time, and to act accordingly. Maybe it is time to create a new "physician" role, a primary caregiver 1) who has time to explain and discuss at length with the patient such complex issues as advance directives because he is not booked 95% of the day with surgeries; 2) who does not have to fear patients suing for imperfect surgeries because he simply does not perform surgeries; in fact, he does not treat at all —he subcontracts those who diagnose, treat, deliver, and operate; and 3) who moves with the patient from ward to ward instead of sticking to one ward treating new patients all the time; in short, a primary caregiver with whom the patient can develop a relationship of trust. Granted, this alternative is not likely to occur, at least not in the short run (though I am less confident about the more remote future). Is it possible to "fix" the current medical profession such that it will regain its trustworthiness? This too is unlikely, for it has been tried over the last 20 years, resulting merely in an increased number of lawsuits and legislative activities, among them the new Patient Self-Determination Act. Can we sit on the fence, run with the hare, and hunt with the hounds? This is what hospital ethics committees try to do. They do not directly participate in patient care, but they protect patient rights by cautiously influencing physician decision making. The problem with such committees is that they, very much like laws, affirm the unavoidable lack of trust that comes with moral pluralism. Instead of attacking this problem, a number of representatives from different disciplines and normative backgrounds are called together to solve the disagreements that (are thought to) exist between patient and physician. The committees have representation, debate, and sometimes even voting; formally the structure is very democratic, very legalistic. Still, no individual person is to be trusted and held responsible but a collective, whose unity paradoxically lies in disagreement. If a solution can be found, we ought to think in terms of the one section in the Patient Self-Determination Act that has not yet been discussed: the requirement to educate staff and community about advance directives. As usual, preventing is better than healing. Good prevention does not interfere with patient autonomy nor with provider autonomy. And it does not stand in the way of a patient-doctor relationship built on trust. Good education prior to patient admission can prevent a lot of the dilemmas. Actually, it could probably have prevented the need for all the other articles in the Act. 79
