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    Doctor Patient Ethics-Good Stuff

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    Key Concepts


    Therapeutic Alliance

    Relationship between doctor and patient based on the mutual agreed understanding that the purpose of the interaction is to achieve a realistic goal of increasing the wellbeing of the patient

    Nonmalefience
    The principle of nonmalefience requires of us that we not intentionally create a needless harm or injury to the patient, either through acts of commission or omission. Providing a proper standard of care that avoids or minimizes the risk of harm is supported not only by our commonly held moral convictions, but by the laws of society as well. In a professional model of care one may be morally and legally blameworthy if one fails to meet the standards of due care.


    The Principle of Justice

    Justice in health care is usually defined as a form of fairness, "giving to each that which is his due." This implies the fair distribution of services in society and requires that we look at the role of entitlement. Some services are in short supply, there is not enough to go around, thus some fair means of allocating scarce resources must be determined.

    Beneficience
    The ordinary meaning of this principle is the duty of health care providers to be of a benefit to the patient, as well as to take positive steps to prevent and to remove harm from the patient. These duties are viewed as self-evident and are widely accepted as the proper goals of medicine. These goals are applied both to individual patients, and to the good of society as a whole.

    Patient Autonomy
    Any notion of moral decision making assumes that rational agents are involved in making informed and voluntary decisions. In health care decisions, our respect for the autonomy of the patient would mean that the patient has the capacity to act intentionally, with understanding, and without controlling influences that would mitigate against a free and voluntary act. This principle is the basis for the practice of "informed consent"

    Boundaries
    Recognition that the relationship between a doctor and patient exists for a specific purpose and is not primarily social in nature. Boundaries are necessary to minimize the risk of inappropriate relationships developing such as a sexual relationship and maintaining a professional relationship.

    Trust

    Fiduciary relationship. Fiduciary derives from the Latin word for "confidence" or "trust". The bond of trust between the patient and the physician is vital to the diagnostic and therapeutic process. It forms the basis for the physician-patient relationship. In order for the physician to make accurate diagnoses and provide optimal treatment recommendations, the patient must be able to communicate all relevant information about an illness or injury. Physicians are obliged to refrain from divulging this confidential information to maintain the patients trust.

    Confidentiality
    Obligation to keep all information between physician and patient private. The obligation of confidentiality both prohibits the physician from disclosing information about the patient's case to other interested parties and encourages the physician to take precautions with the information to ensure that only authorized access occurs.

    Breaking Confidentiality
    The main ethical test for breaking confidence is: will lack of this specific information about this patient put a specific person you can identify at high risk of serious harm? Legal regulations exist that both protect and limit your patient's right to privacy, noting specific exceptions to that right. The two main situations are: Concern for the safety of other specific persons; Concern for public welfare

    Power
    Within the doctor patient relationship power can be held by the doctor, patient or jointly. Generally power can be defined as being the source of authority to take decisions concerning how the patients disease will be managed and treated.

    Conflict of Interest
    Situations where an ethical consideration may be in conflict with a financial consideration, government policy or competing considerations such as administrative responsibilities.

    AMA Professional Code of Ethics ,adopted by the AMA's House of Delegates June 17, 2001
    A physician shall be dedicated to providing competent medical service with compassion and respect for human dignity.
    A physician shall deal honestly with patients and colleagues, and strive to expose those physicians deficient in character or competence, or who engage in fraud or deception.
    A physician shall respect the law and also recognize a responsibility to seek changes in those requirements which are contrary to the best interests of the patient.
    A physician shall respect the rights of patients, of colleagues, and of other health professionals, and shall safeguard patient confidences within the constraints of the law.
    A physician shall continue to study, apply, and advance scientific knowledge, make relevant information available to patients, colleagues, and the public, obtain consultation, and use the talents of other health professionals when indicated.
    A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve, with whom to associate, and the environment in which to provide medical services.
    A physician shall recognize a responsibility to participate in activities contributing to the improvement of the community and the betterment of public health.
    A physician shall, while caring for a patient, regard responsibility to the patient as paramount.
    A physician shall support access to medical care for all people.
    Utilitarian model
    Model of ethics based on the fundamental obligation to try and produce the greatest possible happiness for the greatest number of people. This theory recognizes no fundamental right to truth, informed consent or confidentiality

    Medical Paternalism
    Performance of actions on anothers behalf without consent. Can be state or individual. The state may decide that only doctors can give prescriptions for certain drugs while in the individual doctor patient relationship the doctor takes all the decisions on the assumption that he knows best and will always be acting in the patient’s best interests

    Deontological model
    Model of ethics based on the concept of inherent rightness of a certain action based on moral obligations. Based on the philosophy of Immanuel Kant and his concept of the categorical imperative

    Teleological Model
    Model of ethics based on the belief that everything is directed toward a final purpose and that this will guide the ethical decision. This model is most often associated with the ancient Greek philosopher Aristotle

    Truth-telling and Withholding Information
    When physicians communicate with patients, being honest is an important way to foster trust and show respect for the patient. Patients may feel that trust is misplaced if they discover or perceive lack of honesty and candor by the physician. Generally patients do want their physicians to tell them the truth about diagnosis, prognosis, and therapy. Complete and truthful disclosure need not be brutal; appropriate sensitivity to the patient's ability to digest complicated or bad news is important. If however the physician has some compelling reason to think that disclosure would create a real and predictable harmful effect on the patient, it may be justified to withhold truthful information. The second circumstance when it is justified to withhold information is if the patient states an informed preference not to be told the truth.

    Promise keeping
    This is an essential part of all professional relationships and is necessary for the development of trust and the creation of a therapeutic relationship as well as being an essential component of many other ethical practices

    Patient advocacy
    Doctors have a duty under this ethical concept to work towards the overall health and well being of patients and the wider community by supporting any activity which will bring about these objectives

    Consent
    Informed consent is the process by which a fully informed patient can participate in choices about their health care. It originates from the legal and ethical right the patient has to direct what happens to their body and from the ethical duty of the physician to involve the patient in their health care.

    Advance Directives
    Advance directives are usually written documents designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making.

    Health care surrogate laws
    The law recognizes a hierarchy of family relationships in determining which family member should be the official "spokesperson," for an incapacitated patient. The hierarchy is as follows:
    Legal guardian with health care decision-making authority ; Individual given durable power of attorney for health care decisions ; Spouse ,;Adult children of patient (all in agreement); Parents of patient; Adult siblings of patient (all in agreement)

    Physician Assisted Suicide
    Physician-assisted suicide (PAS) generally refers to a practice in which the physician provides a patient with a lethal dose of medication, upon the patient's request, which the patient intends to use to end his or her own life. (For related discussion, see also end of life issues.)

    Euthanasia
    Euthanasia generally means that the physician would act directly, for instance by giving a lethal injection, to end the patient's life based on advance directive, the patients wishes or based on administrative policy.

    Suicide
    The deliberate act of taking one’s own life. It can be argued that this should be accepted as a right under the principle of autonomy if the decision is made without the influence of a mental disorder or intoxication

    Futility
    Medical futility refers to interventions that are unlikely to produce any significant benefit for the patient, quantitative futility, where the likelihood that an intervention will benefit the patient is exceedingly poor, and qualitative futility, where the quality of benefit an intervention will produce is exceedingly poor.


    Do not resuscitate orders (DNR)

    Like many other medical decisions, deciding whether or not to resuscitate a patient who suffers a cardiopulmonary arrest involves a careful consideration of the potential likelihood for clinical benefit with the patient's preferences for the intervention and its likely outcome. Decisions to forego cardiac resuscitation are often difficult because of real or perceived differences in these two considerations and are based on the degree of futility of the resuscitation attempt.

    Termination of Life-Sustaining Treatment

    The decision to terminate treatment should be based on if it is futile, that is, it may no longer fulfill any of the goals of medicine. In general, these goals are to cure if possible, or to palliate symptoms, prevent disease or disease complications, or improve functional status but is only keeping the person alive.

    The Principles of Bioethics
    The place of principles in bioethics

    In the realm of health care it is difficult to hold rules or principles that are absolute. This is due to the many variables that exist in the context of clinical cases as well as the fact that in health care there are several principles that seem to be applicable in many situations. Even though they are not considered absolute, these rules and principles serve as powerful action guides in clinical medicine. Over the years, these moral principles have won a general acceptance as applicable in the moral analysis of ethical issues in medicine


    Principles in current usage in health care ethics seem to be of self-evident value. For example, the notion that the physician "ought not to harm" any patient appears to be convincing to rational persons. Or, the idea that the physician should develop a care plan designed to provide the most "benefit" to the patient in terms of other competing alternatives, seems self-evident. Further, before implementing the medical care plan, it is now commonly accepted that the patient must indicate a willingness to accept the proposed treatment, if the patient is cognitively capable of doing so. Finally, medical benefits should be dispensed fairly, so that people with similar needs and in similar circumstances will be treated with fairness.


    One might argue that we are required to take all of the above principles into account when they are applicable to the clinical case under consideration. Yet, when two or more principles apply, we may find that they are in conflict. For example, consider a patient diagnosed with an acutely infected appendix. Our medical goal should be to provide the greatest benefit to the patient, an indication for immediate surgery. On the other hand, surgery and general anesthesia carry some small degree of risk to an otherwise healthy patient, and we are under an obligation "not to harm" the patient. Our rational calculus holds that the patient is in far greater danger from harm from a ruptured appendix if we do not act, than from the surgical procedure and anesthesia if we proceed quickly to surgery.


    In other words, we have a "prima facie" duty to both benefit the patient and to "avoid harming" the patient. However, in the actual situation, we must balance the demands of these principles by determining which carries more weight in the particular case. Moral philosopher W.D. Ross claims that prima facie duties are always binding unless they are in conflict with stronger or more stringent duties. A moral person's actual duty is determined by weighing and balancing all competing prima facie duties in any particular case.

    The major principles of medical ethics

    The commonly accepted major principles of health care ethics are:


    Autonomy
    Nonmalefience
    Beneficience
    Justice


    1. Respect for Autonomy


    Any notion of moral decision making assumes that rational agents are involved in making informed and voluntary decisions. In health care decisions, our respect for the autonomy of the patient would, in common parlance, mean that the patient has the capacity to act intentionally, with understanding, and without controlling influences that would mitigate against a free and voluntary act. This principle is the basis for the practice of "informed consent" in the physician/patient transaction regarding health care.



    2. The Principle of Nonmaleficence


    The principle of nonmaleficence requires of us that we not intentionally create a needless harm or injury to the patient, either through acts of commission or omission. In common language, we consider it negligence if one imposes a careless or unreasonable risk of harm upon another. Providing a proper standard of care that avoids or minimizes the risk of harm is supported not only by our commonly held moral convictions, but by the laws of society as well. In a professional model of care one may be morally and legally blameworthy if one fails to meet the standards of due care. The legal criteria for determining negligence are as follows:

    the professional must have a duty to the affected party
    the professional must breach that duty
    the affected party must experience a harm; and
    the harm must be caused by the breach of duty.
    This principle affirms the need for medical competence. It is clear that medical mistakes occur, however, this principle articulates a fundamental commitment on the part of health care professionals to protect their patients from harm.


    3. The Principle of Beneficence


    The ordinary meaning of this principle is the duty of health care providers to be of a benefit to the patient, as well as to take positive steps to prevent and to remove harm from the patient. These duties are viewed as self-evident and are widely accepted as the proper goals of medicine. These goals are applied both to individual patients, and to the good of society as a whole. For example, the good health of a particular patient is an appropriate goal of medicine, and the prevention of disease through research and the employment of vaccines is the same goal expanded to the population at large.


    It is sometimes held that nonmaleficence is a constant duty, that is, one ought never to harm another individual but that beneficence is a limited duty. A physician has a duty to seek the benefit of any or all of her patients, however, the physician may also choose whom to admit into his or her practice, and does not have a strict duty to benefit patients not acknowledged in the panel. This duty becomes complex if two patients appeal for treatment at the same moment. Some criteria of urgency of need might be used, or some principle of first come first served, to decide who should be helped at the moment.


    4. The Principle of Justice


    Justice in health care is usually defined as a form of fairness, or as Aristotle once said, "giving to each that which is his due." This implies the fair distribution of goods in society and requires that we look at the role of entitlement. The question of distributive justice also seems to hinge on the fact that some goods and services are in short supply, there is not enough to go around, thus some fair means of allocating scarce resources must be determined.


    It is generally held that persons who are equals should qualify for equal treatment. This is borne out in the application of Medicare, which is available to all persons over the age of 65 years. This category of persons is equal with respect to this one factor, their age, but the criteria chosen says nothing about need or other noteworthy factors about the persons in this category. In fact, our society uses a variety of factors as a criteria for distributive justice, including the following:


    to each person an equal share
    to each person according to need
    to each person according to effort
    to each person according to contribution
    to each person according to merit
    to each person according to free-market exchanges

    John Rawls and others claim that many of the inequalities we experience are a result of a "natural lottery" or a "social lottery" for which the affected individual is not to blame, therefore, society ought to help even the playing field by providing resources to help overcome the disadvantaged situation. One of the most controversial issues in modern health care is the question pertaining to "who has the right to health care?" Or, stated another way, perhaps as a society we want to be beneficent and fair and provide some decent minimum level of health care for all despite ability to pay.

    1. Respect for Autonomy:
    Illustrative Cases

    In a prima facie sense, we ought always to respect the autonomy of the patient. Such respect is not simply a matter of attitude, but a way of acting so as to recognize and even promote the autonomous actions of the patient. The autonomous person may freely choose loyalties or systems of religious belief that limit other freedoms of that person. For example, Jehovah's Witnesses have a belief that it is wrong to accept a blood transfusion. Therefore, in a life-threatening situation where a blood transfusion is required to save the life of the patient, the patient must be so informed. The consequences of refusing a blood transfusion must be made clear. Desiring to "benefit" the patient, the physician may strongly want to provide a blood transfusion, believing it to be a clear "medical benefit." When properly and compassionately informed, the particular patient is then free to choose whether to accept the blood transfusion in keeping with a strong desire to live, or whether to refuse the blood transfusion in giving a greater priority to his religious convictions about the wrongness of blood transfusions, even to the point of accepting his death.


    In analyzing the above case, the physician had a prima facie duty to respect the autonomous choice of the patient, as well as a prima facie duty to avoid harm and to provide a medical benefit. In this case, informed by community practice and the provisions of the law for the free exercise of one's religion, the physician gave greater priority to the respect for patient autonomy than to the other duties. By contrast, if the patient in question happened to be a ten year old child, and the parents were refusing a life saving blood transfusion, in the State of Washington and many other states there is legal precedence for overriding the parent's wishes by appealing to the Juvenile Court Judge who is authorized by the state to protect the lives of its citizens, particularly minors, until they reach the age of majority and can make such choices independently. Thus, in the case of the minor child, the principle of avoiding the harm of death, and the principle of providing a medical benefit that can restore the child to health and life, would be given precedence over the autonomy of the child's Parents as surrogate decision makers.

    2. The Principle of Nonmaleficence:
    Illustrative Cases

    In the course of caring for patients, there are some situations in which some type of harm seems inevitable, and we are usually morally bound to choose the lesser of the two evils, although the lesser of evils may be determined by the circumstances. For example, most would be willing to experience some pain if the procedure in question would prolong life. However, in other cases, such as the case of the patient dying of painful intestinal carcinoma, the patient might choose to forego CPR in the event of a cardiac or respiratory arrest, or the patient might choose to forego life sustaining technology such as dialysis or a respirator. The reason for such a choice is based on the belief of the patient that prolonged living with a painful and debilitating condition is worse than death. It is also important to note in this case that this determination was made by the patient, who alone is the authority on the interpretation of the "greater" or "lesser" harm for him.


    There is another category of cases that is also confusing since a single action may have two effects, one that is considered a good effect, the other a bad effect. How does our duty to the principle of nonmaleficence direct us in such cases? The formal name for the principle governing this category of cases is usually called the principle of double effect. A typical example might be the question as to how to best treat a pregnant woman newly diagnosed with cancer of the uterus. The usual treatment, removal of the uterus is considered a life saving treatment. However, this procedure would result in the death of the fetus. What action is morally allowable, or, what is our duty? It is argued in this case that the woman has the right to self-defense, and the action of the hysterectomy is aimed at preserving her life. The unintended consequence (though undesired) is the death of the fetus. There are four conditions that usually apply to the principle of double effect:


    the action itself must not be intrinsically wrong, it must be a good or neutral act.
    only the good effect must be intended, not the bad effect, even though it is foreseen.
    the bad effect must not be the means of the good effect,
    the good effect must outweigh the evil that is permitted.
    The reader may apply these four criteria to the case above, and find that the principle of double effect applies and the four conditions are not violated by the prescribed treatment plan.


    Other problems arise when the primary patient cannot decide for himself and others must determine what is in the best interest of the patient, or what constitutes the lesser harm. In most states, the law actually guides the surrogate to offer "substituted judgment" if known, or to follow the course of action that will serve the "best interests" of the patient as determined by reasonable knowledge of the person and their previously stated wishes and opinions.

    3. The Principle of Beneficence:
    Illustrative Cases

    One clear example exists in health care where the principle of beneficence is given priority over the principle of respect for patient autonomy. This example comes from Emergency Medicine. When the patient is incapacitated by the grave nature of accident or illness, we presume that the reasonable person would want to be treated aggressively, and we rush to provide beneficent intervention by stemming the bleeding, mending the broken bone or suturing the wounded.


    In this culture, when the physician acts from a benevolent spirit in providing beneficent treatment that in the physician's opinion is in the best interests of the patient, without consulting the patient, or by overriding the patient's wishes, it is considered to be "paternalistic." The most clear cut case of justified paternalism is seen in the treatment of suicidal patients who are a clear and present danger to themselves. Here, the duty of beneficence requires that the physician intervene on behalf of saving the patient's life or placing the patient in a protective environment, in the belief that the patient is compromised and cannot act in his own best interest at the moment.


    Ethical aspects and dilemmas of the Doctor Patient Relationship


    The following notes expand on the key concepts giving more information and focusing on the types of question that you may be faced with in clinical practice.

    Confidentiality


    Confidentiality is one of the core tenets of medical practice. Yet daily physicians face challenges to this long-standing obligation to keep all information between physician and patient private.

    Where does the duty of confidentiality come from?

    Patients share personal information with physicians. You have a duty as a physician to respect the patient's trust and keep this information private. This requires the physician to respect the patient's privacy by restricting access of others to that information. Furthermore, creating a trusting environment by respecting patient privacy can encourage the patient to be as honest as possible during the course of the visit


    What does the duty of confidentiality require?


    The obligation of confidentiality both prohibits the physician from disclosing information about the patient's case to other interested parties and encourages the physician to take precautions with the information to ensure that only authorized access occurs. Yet the context of medical practice does constrain the physician's obligation to protect patient confidentiality. In the course of caring for patients, you will find yourself exchanging information about your patients with other physicians. These discussions are often critical for patient care and are an integral part of the learning experience in a teaching hospital. As such, they are justifiable so long as precautions are taken to limit the ability of others to hear or see confidential information. Computerized patient records pose new and unique challenges to confidentiality. You should follow prescribed procedures for computer access and security as an added measure to protect patient information.

    What kinds of disclosure are inappropriate?

    Inappropriate disclosure of information can occur in clinical settings. When pressed for time, the temptation to discuss a case in the elevator may be great, but in that setting it is very difficult to keep others from hearing the information exchanges. Similarly, extra copies of handouts from teaching conferences that contain identifiable patients should be removed at the conclusion of the session. The patient's right to privacy is not being respected in these sorts of cases.

    When can confidentiality be breached?

    Confidentiality is not an absolute obligation. Situations arise where the harm in maintaining confidentiality is greater than the harm brought about by disclosing confidential information. In general, two such situations that may give rise to exceptions exist. In each situation, you should ask - will lack of this specific information about this patient put a specific person you can identify at high risk of serious harm? Legal regulations exist that both protect and limit your patient's right to privacy, noting specific exceptions to that right.

    Exception 1:

    Concern for the safety of other specific persons

    On the one hand, the 1974 Federal Privacy Act restricts access to medical information and records. On the other, clinicians have a duty to protect identifiable individuals from any serious threat of harm if they have information that could prevent the harm. As mentioned above, the determining factor in justifying breaking confidentiality is whether there is good reason to believe specific individuals (or groups) are placed in serious danger depending on the medical information at hand. The most famous case of this sort of exception is that of homicidal ideation, when the patient shares a specific plan with a physician or psychotherapist to harm a particular individual. The court has required that traditional patient confidentiality be breached in these sorts of cases.

    Exception 2:

    Concern for public welfare

    In the most clear cut cases of limited confidentiality, you are required by state law to report certain communicable/infectious diseases to the public health authorities. In these cases, the duty to protect public health outweighs the duty to maintain a patient's confidence. From a legal perspective, the State has an interest in protecting public health that outweighs individual liberties in certain cases. In particular, reportable diseases in Washington State include (but are not limited to): AIDS and Class IV HIV, hepatitis A and B, measles, rabies, tetanus, and tuberculosis. Suspected cases of child, dependent adult, and elder abuse are reportable, as are gunshot wounds. Local municipal code and institutional policies can vary regarding what is reportable and standards of evidence required. It is best to clarify institutional policy when arriving at a new site.

    What if a family member asks how the patient is doing?

    While there may be cases where the physician feels compelled to share information regarding the patient's health and prognosis with, for instance, the patient's inquiring spouse, without explicit permission from the patient it is generally unjustifiable to do so. Except in cases where the spouse is at specific risk of harm directly related to the diagnosis, it remains the patient's, rather than the physician's, obligation to inform the spouse.

    Informed Consent
    What is informed consent?

    Informed consent is the process by which a fully informed patient can participate in choices about her health care. It originates from the legal and ethical right the patient has to direct what happens to her body and from the ethical duty of the physician to involve the patient in her health care.

    What are the elements of full informed consent?

    The most important goal of informed consent is that the patient has an opportunity to be an informed participant in his health care decisions. It is generally accepted that complete informed consent includes a discussion of the following elements:

    the nature of the decision/procedure
    reasonable alternatives to the proposed intervention
    the relevant risks, benefits, and uncertainties related to each alternative
    assessment of patient understanding
    the acceptance of the intervention by the patient
    In order for the patient's consent to be valid, he must be considered competent to make the decision at hand and his consent must be voluntary. It is easy for coercive situations to arise in medicine. Patients often feel powerless and vulnerable. To encourage voluntariness, the physician can make clear to the patient that he is participating in a decision, not merely signing a form. With this understanding, the informed consent process should be seen as an invitation to him to participate in his health care decisions. The physician is also generally obligated to provide a recommendation and share her reasoning process with the patient. Comprehension on the part of the patient is equally as important as the information provided. Consequently, the discussion should be carried on in layperson's terms and the patient's understanding should be assessed along the way.

    Basic consent entails letting the patient know what you would like to do and asking them if that will be all right. Basic consent is appropriate, for example, when drawing blood. Decisions that merit this sort of basic informed consent process require a low-level of patient involvement because there is a high-level of community consensus.

    How much information is considered "adequate"?

    How do you know when you have said enough about a certain decision? Most of the literature and law in this area suggest one of three approaches:

    reasonable physician standard: what would a typical physician say about this intervention? This standard allows the physician to determine what information is appropriate to disclose. However, it is probably not enough, since most research in this area shows that the typical physician tells the patient very little. This standard is also generally considered inconsistent with the goals of informed consent as the focus is on the physician rather than on what the patient needs to know.
    reasonable patient standard: what would the average patient need to know in order to be an informed participant in the decision? This standard focuses on considering what a patient would need to know in order to understand the decision at hand.
    subjective standard: what would this patient need to know and understand in order to make an informed decision? This standard is the most challenging to incorporate into practice, since it requires tailoring information to each patient.
    Most states have legislation or legal cases that determine the required standard for informed consent. In the state of Washington, we use the "reasonable patient standard." The best approach to the question of how much information is enough is one that meets both your professional obligation to provide the best care and respects the patient as a person with the right to a voice in health care decisions. (See also truth telling and the law and medicine notes)

    What sorts of interventions require informed consent?

    Most health care institutions, including UWMC, Harborview, and VAMC have policies that state which health interventions require a signed consent form. For example, surgery, anesthesia, and other invasive procedures are usually in this category. These signed forms are really the culmination of a dialogue required to foster the patient's informed participation in the clinical decision.

    For a wide range of decisions, written consent is neither required or needed, but some meaningful discussion is needed. For instance, a man contemplating having a prostate-specific antigen screen for prostate cancer should know the relevant arguments for and against this screening test, discussed in layman's terms.

    When is it appropriate to question a patient's ability to participate in decision making?

    In most cases, it is clear whether or not patients are competent to make their own decisions. Occasionally, it is not so clear. Patients are under an unusual amount of stress during illness and can experience anxiety, fear, and depression. The stress associated with illness should not necessarily preclude one from participating in one's own care. However, precautions should be taken to ensure the patient does have the capacity to make good decisions. There are several different standards of decision making capacity. Generally you should assess the patient's ability to:

    understand his or her situation,
    understand the risks associated with the decision at hand, and
    communicate a decision based on that understanding.
    When this is unclear, a psychiatric consultation can be helpful. Of course, just because a patient refuses a treatment does not in itself mean the patient is incompetent. Competent patients have the right to refuse treatment, even those treatments that may be life-saving. Treatment refusal may, however, be a flag to pursue further the patient's beliefs and understanding about the decision, as well as your own.

    What about the patient whose decision making capacity varies from day to day?

    Patients can move in and out of a coherent state as their medications or underlying disease processes ebb and flow. You should do what you can to catch a patient in a lucid state - even lightening up on the medications if necessary - in order to include him in the decision making process.

    What should occur if the patient cannot give informed consent?

    If the patient is determined to be incapacitated/incompetent to make health care decisions, a surrogate decision maker must speak for her. There is a specific hierarchy of appropriate decision makers defined by state law. If no appropriate surrogate decision maker is available, the physicians are expected to act in the best interest of the patient until a surrogate is found or appointed.

    Is there such a thing as presumed/implied consent?

    The patient's consent should only be "presumed", rather than obtained, in emergency situations when the patient is unconscious or incompetent and no surrogate decision maker is available. In general, the patient's presence in the hospital ward, ICU or clinic does not represent implied consent to all treatment and procedures. The patient's wishes and values may be quite different than the values of the physician's. While the principle of respect for person obligates you to do your best to include the patient in the health care decisions that affect his life and body, the principle of beneficence may require you to act on the patient's behalf
    Truth-telling and Withholding Information


    When physicians communicate with patients, being honest is an important way to foster trust and show respect for the patient. Patients place a great deal of trust in their physician, and may feel that trust is misplaced if they discover or perceive lack of honesty and candor by the physician. Yet there are situations in which the truth can be disclosed in too brutal a fashion, or may have a terrible impact on the occasional patient. The goal of this summary is to be able to discern the difference.

    Do patients want to know the truth about their condition?

    Contrary to what many physicians have thought in the past, a number of studies have demonstrated that patients do want their physicians to tell them the truth about diagnosis, prognosis, and therapy. For instance, 90% of patients surveyed said they would want to be told of a diagnosis of cancer or Alzheimer's disease. Similarly, a number of studies of physician attitudes reveal support for truthful disclosure. For example, whereas in 1961 only 10% of physicians surveyed believed it was correct to tell a patient of a fatal cancer diagnosis, by 1979 97% felt that such disclosure was correct.

    How much do patients need to be told?

    In addition to fostering trust and demonstrating respect, giving patients truthful information helps them to become informed participants in important health care decision. Thus, patients should be told all relevant aspects of their illness, including the nature of the illness itself, expected outcomes with a reasonable range of treatment alternatives, risks and benefits of treatment, and other information deemed relevant to that patient's personal values and needs. Treatment alternatives that are not medically indicated or appropriate need not be revealed. Facts that are not important to the patients ability to be an informed participant in decision making, such as results of specific lab tests, need not be told to the patient. Also, complete and truthful disclosure need not be brutal; appropriate sensitivity to the patient's ability to digest complicated or bad news is important.

    What if the truth could be harmful?

    There are many physicians who worry about the harmful effects of disclosing too much information to patients. Assuming that such disclosure is done with appropriate sensitivity and tact, there is little empirical evidence to support such a fear. If the physician has some compelling reason to think that disclosure would create a real and predictable harmful effect on the patient, it may be justified to withhold truthful information.

    What if the patient's family asks me to withhold the truth from the patient?

    Often families will ask the physician to withhold a terminal or serious diagnosis or prognosis from the patient. Usually, the family's motive is laudable; they want to spare their loved one the potentially painful experience of hearing difficult or painful facts. These fears are usually unfounded, and a thoughtful discussion with family members, for instance reassuring them that disclosure will be done sensitively, will help allay these concerns. In unusual situations, family members may reveal something about the patient that causes the physician to worry that truthful disclosure may create real and predictable harm, in which case withholding may be appropriate. These occasions, however, are rare.

    When is it justified for me to withhold the truth from a patient?

    There are two main situations in which it is justified to withhold the truth from a patient. As noted above, if the physicians has compelling evidence that disclosure will cause real and predictable harm, truthful disclosure may be withheld. Examples might include disclosure that would make a depressed patient actively suicidal. This judgment, often referred to as the "therapeutic privilege," is important but also subject to abuse. Hence it is important to invoke this only in those instances when the harm seems very likely, not merely hypothetical.

    The second circumstance is if the patient him- or herself states an informed preference not to be told the truth. Some patients might ask that the physician instead consult family members, for instance. In these cases, it is critical that the patient give thought to the implications of abdicating their role in decision making. If they chose to make an informed decision not to be informed, however, this preference should be respected.

    What about patients with different specific religious or cultural beliefs?

    Patient with certain religious beliefs or ethnic or cultural backgrounds may have different views on the appropriateness of truthful disclosure. For instance, Carrese and colleagues found that many people with traditional Navajo beliefs did not want to hear about potential risks of treatment, as their beliefs held that to hear such risks was to invite them to occur. Thus, dialogue must be sensitive to deeply held beliefs of the patient. One should not, however, assume that someone of a particular ethnic background holds different beliefs. Rather, a culturally sensitive dialogue about the patient's role in decision making should take place.

    Is it justifiable to deceive a patient with a placebo?

    A placebo is any substance given to a patient with the knowledge that it has no specific clinical effect, yet with the suggestion to the patient that it will provide some benefit. The placebo effect is powerful, in many cases providing measurable improvement in symptoms in 20-30% of patients. In general, the deceptive use of placebos is not ethically justifiable. Specific exceptions should be rare and only considered if the following conditions are present:

    the condition is known to have a high placebo response rate
    the alternatives are ineffective and/or risky
    the patient has a strong need for some prescription
    When is it justified for me to withhold the truth from a patient?

    There are two main situations in which it is justified to withhold the truth from a patient. As noted above, if the physicians has compelling evidence that disclosure will cause real and predictable harm, truthful disclosure may be withheld. Examples might include disclosure that would make a depressed patient actively suicidal. This judgment, often referred to as the "therapeutic privilege," is important but also subject to abuse. Hence it is important to invoke this only in those instances when the harm seems very likely, not merely hypothetical.

    The second circumstance is if the patient him- or herself states an informed preference not to be told the truth. Some patients might ask that the physician instead consult family members, for instance. In these cases, it is critical that the patient give thought to the implications of abdicating their role in decision making. If they chose to make an informed decision not to be informed, however, this preference should be respected.

    Physician Assisted Suicide


    Physician-assisted suicide (PAS) generally refers to a practice in which the physician provides a patient with a lethal dose of medication, upon the patient's request, which the patient intends to use to end his or her own life. (For related discussion, see also end of life issues.)

    Is physician-assisted suicide the same as euthanasia?

    No. Physician-assisted suicide refers to the physician providing the means for death, most often with a presciption. The patient, not the physician, will ultimately administer the lethal medication. Euthanasia generally means that the physician would act directly, for instance by giving a lethal injection, to end the patient's life. Some other practices that should be distinguished from PAS are:

    Terminal sedation: This refers to the practice of sedating a terminally ill competent patient to the point of unconsciousness, then allowing the patient to die of her disease, starvation, or dehydration.
    Withholding/withdrawing life sustaining treatment: When a competent patient makes an informed decision to refuse life-sustaining treatment, there is virtual unanimity in state law and in the medical profession that this wish should be respected.
    Pain medication that may hasten death: Often a terminally ill, suffering patient may require dosages of pain medication that impair respiration or have other effects that may hasten death. It is generally held by most professional societies, and supported in court decisions, that this is justifiable so long as the primary intent is to relieve suffering.
    Is physician-assisted suicide ethical?

    The ethics of PAS continue to be debated. Some argue that PAS is ethical. Often this is argued on the grounds that PAS may be a rational choice for a person who is choosing to die to escape unbearable suffering. Furthermore, the physician's duty to alleviate suffering may, at times, justify the act of providing assistance with suicide. These arguments rely a great deal on the notion of individual autonomy, recognizing the right of competent people to chose for themselves the course of their life, including how it will end.

    Others have argued that PAS is unethical. Often these opponents argue that PAS runs directly counter to the traditional duty of the physician to preserve life. Furthermore, many argue if PAS were legal, abuses would take place. For instance, the poor or elderly might be covertly pressured to chose PAS over more complex and expensive palliative care options.

    What are the arguments in favor of PAS?

    Those who argue that PAS is ethically justifiable offer the following sorts of arguments:

    Respect for autonomy: Decisions about time and circumstances death are very personal. Competent person should have right to choose death.
    Justice: Justice requires that we "treat like cases alike." Competent, terminally ill patients are allowed to hasten death by treatment refusal. For some patients, treatment refusal will not suffice to hasten death; only option is suicide. Justice requires that we should allow assisted death for these patients.
    Compassion: Suffering means more than pain; there are other physical and psychological burdens. It is not always possible to relieve suffering. Thus PAS may be a compassionate response to unbearable suffering.
    Individual liberty vs. state interest: Though society has strong interest in preserving life, that interest lessens when person is terminally ill and has strong desire to end life. A complete prohibition on assisted death excessively limits personal liberty. Therefore PAS should be allowed in certain cases.
    Openness of discussion: Some would argue that assisted death already occurs, albeit in secret. For example, morphine drips ostensibly used for pain relief may be a covert form of assisted death or euthanasia. That PAS is illegal prevents open discussion, in which patients and physicians could engage. Legalization of PAS would promote open discussion.
    What are the arguments against PAS?

    Those that argue that PAS should remain illegal often offer arguments such as these:

    Sanctity of life: This argument points out strong religious and secular traditions against taking human life. It is argued that assisted suicide is morally wrong because it contradicts these beliefs.
    Passive vs. Active distinction: The argument here holds that there is an important difference between passively "letting die" and actively "killing." It is argued that treatment refusal or withholding treatment equates to letting die (passive) and is justifiable, whereas PAS equates to killing (active) and is not justifiable.
    Potential for abuse: Here the argument is that certain groups of people, lacking access to care and support, may be pushed into assisted death. Furthermore, assisted death may become a cost-containment strategy. Burdened family members and health care providers may encourage option of assisted death. To protect against these abuses, it is argued, PAS should remain illegal.
    Professional integrity: Here opponents point to the historical ethical traditions of medicine, strongly opposed to taking life. For instance, the Hippocratic oath states, "I will not administer poison to anyone where asked," and "Be of benefit, or at least do no harm." Furthermore, major professional groups (AMA, AGS) oppose assisted death. The overall concern is that linking PAS to the practice of medicine could harm the public's image of the profession.
    Fallibility of the profession: The concern raised here is that physicians will make mistakes. For instance there may be uncertainty in diagnosis and prognosis. There may be errors in diagnosis and treatment of depression, or inadequate treatment of pain. Thus the State has an obligation to protect lives from these inevitable mistakes.
    Medical Futility


    While you will hear colleagues referring to particular cases or interventions as "futile", the technical meaning and moral weight of this term is not always appreciated. As you will make clinical decisions using futility as a criterion, it is important to be clear about the meaning of the concept

    What is "medical futility"?

    "Medical futility" refers to interventions that are unlikely to produce any significant benefit for the patient. Two kinds of medical futility are often distinguished:

    quantitative futility, where the likelihood that an intervention will benefit the patient is exceedingly poor, and
    qualitative futility, where the quality of benefit an intervention will produce is exceedingly poor.
    Both quantitative and qualitative futility refer to the prospect of benefiting the patient. A treatment that merely produces a physiological effect on a patient's body does not necessarily confer any benefit that the patient can appreciate.

    What are the ethical obligations of physicians when an intervention is clearly futile?

    The goal of medicine is to help the sick. You have no obligation to offer treatments that do not benefit your patients. Futile interventions are ill advised because they often increase a patient's pain and discomfort in the final days and weeks of life, and because they can expend finite medical resources.

    Although the ethical requirement to respect patient autonomy entitles a patient to choose from among medically acceptable treatment options (or to reject all options), it does not entitle patients to receive whatever treatments they ask for. Instead, the obligations of physicians are limited to offering treatments that are consistent with professional standards of care.

    Who decides when a particular treatment is futile?

    The ethical authority to render futility judgments rests with the medical profession as a whole, not with individual physicians at the bedside. Thus, futility determinations in specific cases should conform with more general professional standards of care.

    While a patient may decide that a particular outcome is not worth striving for (and consequently reject a treatment), this decision can be based on personal preferences and not necessarily on futility.

    What if the patient or family requests an intervention that the health care team considers futile?

    In such situations, you have a duty as a physician to communicate openly with the patient or family members about interventions that are being withheld or withdrawn and to explain the rationale for such decisions. It is important to approach such conversations with compassion for the patient and grieving family. For example, rather than saying to a patient or family, "there is nothing I can do for you," it is important to emphasize that "everything possible will be done to ensure the patient's comfort and dignity."

    In some instances, it may be appropriate to continue temporarily to make a futile intervention available in order to assist the patient or family in coming to terms with the gravity of their situation and reaching a point of personal closure. For example, a futile intervention for a terminally ill patient may be continued temporarily in order to allow time for a loved one arriving from another state to see the patient for the last time.

    What is the difference between futility and rationing?

    Futility refers to the benefit of a particular intervention for a particular patient. With futility, the central question is not, "How much money does this treatment cost?" or "Who else might benefit from it?" but instead, "Does the intervention have any reasonable prospect of helping this patient?"

    What is the difference between a futile intervention and an experimental intervention?

    Making a judgment of futility requires solid empirical evidence documenting the outcome of an intervention for different groups of patients. Futility establishes the negative determination that the evidence shows no significant likelihood of conferring a significant benefit. By contrast, treatments are considered experimental when empirical evidence is lacking and the effects of an intervention are unknown.

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    Doctor Patient Ethics-Good Stuff cont

    Advance Directives


    Advance directives are usually written documents designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making. Related issues include Advance care planning and termination of life sustaining treatment. Refer to the following notes for more information.

    What types of advance directives are currently available?

    A 1991 federal law, the Patient Self-Determination Act, requires that patients are informed about their right to participate in health care decisions, including their right to have an advance directive. Advance directives fall into two broad categories: instructive and proxy. Instructive directives allow for preferences regarding the provision of particular therapies or classes of therapies. Living wills are the most common examples of instructive directives, but other types of instructive directives, such as no transfusion and no CPR directives are also employed. The proxy directive, generally a Durable Power of Attorney for Health Care (DPAHC), allows for the designation of a surrogate medical decision maker of the patient's choosing. This surrogate decision maker makes medical care decisions for the patient in the event she is incapacitated.

    Why are advance directives important to medical care?

    The major argument for the use of instructive directives, such as a living will, is that it allows an individual to participate indirectly in future medical care decisions even if they become decisionally incapacitated, i.e., unable to make informed decisions. Instructive directives may extend individual autonomy and help ensure that future care is consistent with previous desires. The living will was created to help prevent unwanted and ultimately futile invasive medical care at the end-of-life.

    When patients becomes incapacitated someone else will be required to make medical decisions regarding their care. Generally a spouse is the legal surrogate. If no spouse is available, the state law designates the order of surrogate decision makers, usually other family members. By designating a DPAHC, the patient's choice of a surrogate decision maker supersedes that of the state. A legal surrogate is particularly valuable for persons in non-traditional relationships or without close family. The DPAHC need not be a relative of the patient, though this person should have close knowledge of the patient's wishes and views.

    Are advance directives legally binding?

    Advance directives are recognized in one form or another by legislative action in all 50 states If the directive is constructed according to the outlines provided by pertinent state legislation, they can be considered legally binding.

    When should I refer to a patient's advance directive?

    It is best to ask a patient early on in his care if he has a living will, or other form of advance directives. Not only does this information get included in the patient's chart, but by raising the issue, the patient has an opportunity to clarify his wishes with the care providers and his family and provides advance care planning

    However, advance directives take effect only in situations where a patient is unable to participate directly in medical decision making. Appeals to living wills and surrogate decision makers are ethically and legally inappropriate when individuals remain competent to guide their own care. The assessment of decisional incapacity is often difficult and may involve a psychiatric evaluation and, at times, a legal determination.

    Some directives are written to apply only in particular clinical situations, such as when the patient has a "terminal" condition or an "incurable" illness. These ambiguous terms mean that directives must be interpreted by caregivers. More recent forms of instructive directives have attempted to overcome this ambiguity by either addressing specific interventions (e.g. blood transfusions or CPR) that are to be prohibited in all clinical contexts.

    What if a patient changes her mind?

    As long as a patient remains competent to participate in medical decisions, both documents are revocable. Informed decisions by competent patients always supersede any written directive.

    What if the family disagrees with a patient's living will?

    If there is a disagreement about either the interpretation or the authority of a patient's living will, the medical team should meet with the family and clarify what is at issue. The team should explore the family's rationale for disagreeing with the living will. Do they have a different idea of what should be done? Do they have a different impression of what would be in the patient's best interests, given her values and commitments? Or does the family disagree with the physician's interpretation of the living will?

    These are complex and sensitive situations and a careful dialogue can usually surface many other fears and concerns. However, if the family merely does not like what the patient has requested, they do not have much ethical power to sway the team. If the disagreement is based on new knowledge, substituted judgment, or recognition that the medical team has misinterpreted the living will, the family has much more say in the situation. If no agreement is reached, the hospital's Ethics Committee should be consulted.

    How should I interpret a patient's advance directive?

    Living wills generally are written in ambiguous terms and demand interpretation by providers. Terms like "extraordinary means" and "unnaturally prolonging my life" need to be placed in context of the present patient's values in order to be meaningfully understood. More recent forms of instructive directives have attempted to overcome this ambiguity by addressing specific interventions (e.g., blood transfusions or CPR) to be withheld. The DPAHC or a close family member often can help the care team reach an understanding about what the patient would have wanted. Of course, physician-patient dialogue is the best guide for developing a personalized advance directive.

    What are the limitations of living wills?

    Living wills cannot cover all conceivable end of life decisions. There is too much variability in clinical decision making to make an all-encompassing living will possible. Persons who have written or are considering writing advance directives should be made aware of the fact that these documents are insufficient to ensure that all decisions regarding care at the end-of-life will be made in accordance with their written wishes. They should be strongly encouraged to communicate preferences and values to both their medical providers and family/surrogate decision makers.

    Another potential limitation of advance directives is possible changes in the patient's preferences over time or circumstance. A living will may become inconsistent with the patient's revised views about quality of life or other outcomes. This is yet another reason to recommend that patients communicate with their physicians and family members about their end-of-life wishes.


    Do not resuscitate orders (DNR)


    On the medicine wards, you will come across patients who have a "Do-Not-Resuscitate" order on their chart. You will also be in situations where you are asked to discuss with a patient whether they want to or should have resuscitation following a cardiac arrest or life-threatening arrhythmia. Like many other medical decisions, deciding whether or not to resuscitate a patient who suffers a cardiopulmonary arrest involves a careful consideration of the potential likelihood for clinical benefit with the patient's preferences for the intervention and its likely outcome. Decisions to forego cardiac resuscitation are often difficult because of real or perceived differences in these two considerations

    When should CPR be administered?

    Cardiopulmonary resuscitation (CPR) is a set of specific medical procedures designed to establish circulation and breathing in a patient who's suffered an arrest of both. CPR is a supportive therapy, designed to maintain perfusion to vital organs while attempts are made to restore spontaneous breathing and cardiac rhythm.

    If your patient stops breathing or their heart stops beating in the hospital, the standard of care is to perform CPR in the absence of a valid physician's order to withhold it. Similarly, paramedics responding to an arrest in the field are required to administer CPR. Since 1994 in Washington state, patients may wear a bracelet that allows a responding paramedic to honor a physician's order to withhold CPR.

    When can CPR be withheld?

    Virtually all hospitals have policies which describe circumstances under which CPR can be withheld. Two general situations arise which justify withholding CPR:

    when CPR is judged to be of no medical benefit (also known as "medical futility"; see below), and
    when the patient with intact decision making capacity (or when lacking such capacity, someone designated to make decisions for them) clearly indicates that he / she does not want CPR, should the need arise.
    When is CPR "futile"?

    CPR is futile when it offers the patient no clinical benefit. When CPR offers no benefit, you as a physician are ethically justified in withholding resuscitation. Clearly it is important to define what it means to "be of benefit." The distinction between merely providing measurable effects (e.g. normalizing the serum potassium) and providing benefits is helpful in this deliberation.

    When is CPR not of benefit?

    One approach to defining benefit examines the probability of an intervention leading to a desirable outcome. CPR has been prospectively evaluated in a wide variety of clinical situations. Knowledge of the probability of success with CPR could be used to determine its futility. For instance, CPR has been shown to be have a 0% probability of success in the following clinical circumstances:

    Septic shock
    Acute stroke
    Metastatic cancer
    Severe pneumonia
    In other clinical situations, survival from CPR is extremely limited:

    Hypotension (2% survival)
    Renal failure (3%)
    AIDS (2%)
    Homebound lifestyle (4%)
    Age greater than 70 (4% survival to discharge from hospital)
    How should the patient's quality of life be considered?

    CPR might also seem to lack benefit when the patient's quality of life is so poor that no meaningful survival is expected even if CPR were successful at restoring circulatory stability. Judging "quality of life" tempts prejudicial statements about patients with chronic illness or disability. There is substantial evidence that patients with such chronic conditions often rate their quality of life much higher than would healthy people. Nevertheless, there is probably consensus that patients in a permanent unconscious state possess a quality of life that few would accept. Therefore, CPR is usually considered "futile" for patients in a persistent vegetative state.

    If CPR is deemed "futile," should a DNR order be written?

    If CPR is judged to be medically futile, this means that you as the physician are under no obligation to provide it. Nevertheless, the patient and/or their family should still have a role in the decision about a Do-Not-Resuscitate (DNR) order. This involvement stems from respect for all people to take part in important life decisions, commonly referred to as respect for autonomy or respect for person.

    In many cases, the patient/family, upon being given a caring but frank understanding of the clinical situation, will agree with the DNR order. In such cases a DNR order can be written. Each hospital has specific procedures for writing a valid DNR order. In all cases, the order must be written or cosigned by the Attending Physician.

    What if CPR is not futile, but the patient wants a DNR order?

    As mentioned above, a decision to withhold CPR may also arise from a patient's expressed wish that CPR not be performed on her. If the patient understands her condition and possesses intact decision making capacity, her request should be honored. This position stems from respect for autonomy, and is supported by law in many states that recognize a competent patient's right to refuse treatment.

    What if the family disagrees with the DNR order?

    Ethicists and physicians are divided over how to proceed if the family disagrees If there is disagreement, every reasonable effort should be made to communicate with the patient or family. In many cases, this will lead to resolution of the conflict. In difficult cases, an ethics consultation can prove helpful. Nevertheless, CPR should generally be provided to such patients, even if judged futile.

    Advance Directives and Surrogacy

    What if the patient is unable to say what his/her wishes are?

    In some cases, the decision about CPR occurs at a time when the patient is unable to participate in decision making, and hence cannot voice a preference. There are two general approaches to this dilemma: Advance directives and surrogate decision makers.

    Advance Directive: This has been discussed above but in summary it is a document which indicates with some specificity the kinds of decisions the patient would like made should he be unable to participate. In some cases, the document may spell out specific decisions (e.g. Living Will), while in others it will designate a specific person to make health care decisions for them (i.e. Durable Power of Attorney for Health Care). There is some controversy over how literally living wills should be interpreted. In some cases, the document may have been drafted in the distant past, and the patient's views may have changed. Similarly, some patients do change their minds about end-of-life decisions when they actually face them. In general, preferences expressed in a living will are most compelling when they reflect long held, consistently stable views of the patient. This can often be determined by conversations with family members, close friends, or health care providers with long term relationships with the patient.
    Surrogate decision maker: In the absence of a written document, people close to the patient and familiar with his wishes may be very helpful. The law recognizes a hierarchy of family relationships in determining which family member should be the official "spokesperson," though generally all close family members and significant others should be involved in the discussion and reach some consensus. The hierarchy is as follows:
    Legal guardian with health care decision-making authority
    Individual given durable power of attorney for health care decisions
    Spouse
    Adult children of patient (all in agreement)
    Parents of patient
    Adult siblings of patient (all in agreement)


    How is advance care planning different from advance directives?


    Advance care planning is the process. Advance directives usually are the written documents that provide information about the patient's wishes and/or her designated spokesperson. Verbal directives may be ethically valid, but most patients and health care providers prefer written documentation in the form of official forms. If official forms are not used, health care providers should document the result of their advance care planning conversations in a medical record progress note.

    What are the goals and expected outcomes of advance care planning?

    The goals of advance care planning are four-fold. In the event of decisional incapacity, they are to:

    maximize the likelihood that medical care serves the patients goals,
    minimize the likelihood of over- or undertreatment,
    reduce the likelihood of conflicts between family members (and close friends) and health care providers, and
    minimize the burden of decision making on family members or close friends.
    As a health care provider who engages her patient in advance care planning, you can expect to better understand your patient's views about the goals of medicine, his preferred approach to end of life care, what makes life worth living, as well as his fears about medical interventions and loss of dignity. In addition, you can expect to have a discussion that clarifies misunderstandings. For example, patients often think that cardiopulmonary resuscitation is successful 80% of the time, that mechanical ventilation is a fancy word for nasal prongs, and that coma patients still have the ability to enjoy life.

    You can also expect to have better communication with the patient's family members or loved ones because there should be enhanced shared understanding of the patient's values and wishes. Thus, you can expect to have fewer conflicts with family members about the approach to end of life care.

    Advance directives will not be the outcome of most advance care planning. At a minimum patients should become familiar with the concept and rationale for advance care planning. Some patients will want to mull things over, others will want to discuss the topic with their close friends or family and health care providers. Fewer will be ready to sign documents and even fewer will be interested in personalizing their advance directives so that they are clear and contain pertinent information with clinical relevance.

    Who should I approach for advance care planning?

    Unlike health promotional activities that are targeted to select populations based on cost-effectiveness research, advance directives and advance care planning have been recommended for everyone. This is a limitation to the policy as recommended by the Patient Self-Determination Act of 1991 and the Joint Accreditation of Health Care Organizations, as it has led to including a standard set of questions at hospital admission without much information or understanding.

    We usually think of doing advance care planning with patients who are at higher risk for decisional incapacity. You should consider having a conversation about this with patients with the following conditions:

    at risk for strokes (e.g., those with hypertension)
    experiencing early dementia
    engaging in risky behavior that is associated with head trauma and coma (e.g., motorcyclists, riding in cars without seat belts)
    experiencing severe, recurrent psychiatric illnesses
    terminal illness
    When and where should I initiate advance care planning?

    It is unknown when or where advance care planning should ideally occur. It is generally thought that this should occur initially in the outpatient setting, and then be reviewed upon admission to and discharge from inpatient settings. It is also recommended that whenever there is a significant change in a patient's social or health status, the patient's views about advance care planning should be reviewed.

    How can I raise these issues without scaring patients?

    You can raise advance care planning as one of many health promotion activities. These discussions are aimed at avoiding harms (over- and undertreatment), and promoting benefits (treatments tailored to the patient's goals). You should reassure the patient that raising this issue does not mean that there is something unspoken to worry about. You also may tell the patient that this topic is difficult for many patients and that you will understand if she does not want to come to any conclusions during this discussion.

    Are there some questions that I could use for advance care planning?

    When having a discussion about advance care planning, the following questions are recommended:

    Who should speak on your behalf if you become so sick you can't speak for yourself?
    Are there any circumstances that you've heard about through the news or TV where you've said to yourself, "I would never want to live like that?" If so, what are they and why do you feel this way about them?
    Are there any life-sustaining treatments that you would not want to receive under any circumstances? If so, what are they and why do you feel this way about them?
    Some people have more concerns about the way they will die or dying than death itself. Do you have any fears or concerns about this?
    In the event that you are dying, where do you want to receive medical care?
    Should your current preferences be strictly applied to future situations or serve as a general guide to your family (or loved ones)?
    How should I advise a patient if she doesn't have anyone to name as a proxy?

    You should inform the patient that the best course of action under these circumstances is to write down her wishes and give a copy to her health care providers. She should fill out a legal form, such as a living will, with as much detail as possible, and then include a personalized statement to provide a better understanding of her wishes.

    How should I advise a patient if he believes that some family members will disagree with his wishes?

    The patient should be informed that the best way to prevent disagreements is to communicate with everyone ahead of time to let them know who has been picked as a spokesperson and what kind of approach to medical care he wants.

    As a trainee, should I do advance care planning with my patients?

    In the ideal doctor-patient situation the primary care physician should initiate discussion when the patient is not acutely ill. However, this often is not the case and therefore these discussions frequently occur in the hospital setting. Regardless of the setting, good medical practice includes having these discussions. Thus, medical students and residents should engage the patients they are caring for in these discussions. If the patient has been recently diagnosed with a terminal or life changing condition, has severe depression, demonstrates paranoid ideation, or is suicidal, you should ask the responsible attending physician whether this is an appropriate time to raise these issues. Otherwise, you should initiate the discussions and request faculty support (such as role modeling or mentoring) if needed. You should review the framing of the discussion and the patient's views with the attending physician responsible for the patient's overall care.

    Termination of Life-Sustaining Treatment

    On the medicine wards, you will have patients who are receiving treatments or interventions that keep them alive, and you will face the decision to discontinue these treatments. Examples include dialysis for acute or chronic renal failure and mechanical ventilation for respiratory failure. In some circumstances, these treatments are no longer of benefit, while in others the patient or family no longer want them.

    When is it justifiable to discontinue life-sustaining treatments?


    If the patient has the ability to make decisions, fully understands the consequences of their decision, and states they no longer want a treatment, it is justifiable to withdraw the treatment.
    Treatment withdrawal is also justifiable if the treatment no longer offers benefit to the patient.
    How do I know if the treatment is no longer "of benefit?"

    In some cases, the treatment may be "futile"; that is, it may no longer fulfill any of the goals of medicine. In general, these goals are to cure if possible, or to palliate symptoms, prevent disease or disease complications, or improve functional status. For example, patients with severe head trauma judged to have no chance for recovery of brain function can no longer benefit from being maintained on a mechanical ventilator. All that continuation would achieve in such a case is maintenance of biologic function. In such a case, it would be justifiable to withdraw mechanical ventilation.

    Do different standards apply to withholding and withdrawing care?

    Many clinicians feel that it is easier to not start (withhold) a treatment, such as mechanical ventilation, than to stop (withdraw) it. While there is a natural tendency to believe this, there is no ethical distinction between withholding and withdrawing treatment. In numerous legal cases, courts have found that it is equally justifiable to withdraw as to withhold life-sustaining treatments. Also, most bioethicists, including the President's Commission, are of the same opinion.

    Does the patients have to be terminally ill to refuse treatment?

    Though in most cases of withholding or withdrawing treatment the patient has a serious illness with limited life expectancy, the patient does not have to be "terminally ill" in order for treatment withdrawal or withholding to be justifiable.

    Most states, including Washington State, have laws that guarantee the right to refuse treatment to terminally ill patients, usually defined as those having less than 6 months to live. These laws do not forbid other patients from exercising the same right. Many court cases have affirmed the right of competent patient to refuse medical treatments.

    Competency

    What if the patient is not competent?

    In some cases, the patient is clearly unable to voice a wish to have treatment withheld or withdrawn. As with DNR orders, there are two general approaches to this dilemma: advanced directives and surrogate decision makers discussed above

    What if I'm not sure if the patient is competent?

    Sometimes the patient is awake, alert, and conversant, but their decisions seem questionable or irrational. First, it is important to distinguish an irrational decision from simple disagreement. If you feel strongly that a certain course of action is "what's best" for the patient, it can seem irrational for them to disagree. In these situations, it is critical to talk with the patient and find out why they disagree.

    Patients are presumed to be "competent" to make a treatment decisions. Often it's better to say they have "decision making capacity" to avoid confusion with legal determinations of competence. In the courts, someone's competence is evaluated in a formal, standardized way. These court decisions do not necessarily imply anything about capacity for making treatment decisions. For example, an elderly grandfather may be found incompetent to manage a large estate, but may still have intact capacity to make treatment decisions.

    In general, the capacity to make treatment decisions, including to withhold or withdraw treatment, is considered intact if the patient:

    understands the clinical information presented
    appreciates his/her situation, including consequences with treatment refusal
    is able to display reason in deliberating about their choices
    is able to clearly communicate their choice.
    If the patient does not meet these criteria, then their decision to refuse treatment should be questioned, and handled in much the same way as discussed for the clearly incompetent patient. When in doubt, an ethics consultation may prove helpful.

    Is a psychiatry consult required to determine decision making capacity?

    A psychiatry consult is not required, but can be helpful in some cases. Psychiatrists are trained in interviewing people about very personal, sensitive issues, and thus can be helpful when patients are facing difficult choices with fears or concerns that are difficult to talk about. Similarly, if decision making capacity is clouded by mental illness, a psychiatrist's skill at diagnosis and potential treatment of such disorders can be helpful.

    Does depression or other history of mental illness mean a patient has impaired decision making capacity?

    Patients with active mental illness including depression should have their decision making capacity evaluated carefully. They should not be presumed to be unable to make treatment decision. In several studies, patients voiced similar preferences for life-sustaining treatments when depressed as they did after treatment of their depression.

    Depression and other mental disorders should prompt careful evaluation, which may often be helped by psychiatry consultation.

    Is it justifiable to withhold or withdraw food or fluids?

    This question underscores the importance of clarifying the goals of medical treatment. Any medical intervention can be withheld or withdrawn, including nutrition and IV fluids. At all times, patients must be given basic humane, compassionate care. They should be given a comfortable bed, human contact, warmth, and be kept as free from pain and suffering as possible. While some believe that food and fluids are part of the bare minimum of humane treatment, both are still considered medical treatments. Several court cases have established that it is justifiable to withhold or withdraw food and fluids.

    Is it justifiable to withhold or withdraw care because of costs?

    It is rarely justifiable to discontinue life-sustaining treatment for cost reasons alone. While we should always try to avoid costly treatments that offer little or no benefit, our obligation to the patient outweighs our obligation to save money for health care institutions. There are rare situations in which costs expended on one terminally ill patient could be clearly better used on another, more viable patient. For instance, a terminally ill patient with metastatic cancer and septic shock is in the last ICU bed. Another patient, young and previously healthy, now with a self-limited but life-threatening illness, is in the emergency room. In such cases, it may be justifiable to withdraw ICU treatment from the terminally ill patient in favor of the more viable one. Even so, such decisions must be carefully considered, and made with the full knowledge of patients and their surrogate decision makers.

    Summary of Methodology

    In a collaborative effort, 3 clinical ethicists (a philosopher - Jonsen, a physician - Siegler, and a lawyer - Winslade) have developed a method with which to work through difficult cases. The process can be thought of as the "ethics workup," similar to the "History and Physical" skills that all medical students come to use when learning how to "workup" a patient's primary complaints. While this method has deep philosophical roots, what clinicians who use this method like about it is the ease with which it fits into how they normally think about tough medical cases.


    Jonsen, Siegler and Winslade have identified four "topics" that are basic and intrinsic to every clinical encounter. Focusing our discussion around these four topics gives us a way to organize the facts of the particular case at hand.:


    Medical Indications - all clinical encounters include a review of diagnosis and treatment options
    Patient Preferences - all clinical encounters occur because a patient presents before the physician with a complaint. The patient's values are integral to the encounter.
    Quality of Life - the objective of all clinical encounters is to improve, or at least address, quality of life for the patient
    Contextual Features - all clinical encounters occur in a wider context beyond physician and patient, to include family, the law, hospital policy, insurance companies, and so forth.


    These four topics are present in every case. In the interest of consistency, the order of the review of topics remains the same (again, much like the review of systems in a complete H&P), yet no topic bears more weight than the others. Each will be evaluated from the perspective of the facts of the case at hand.

    Once the details of a case have been outlined according to the four topics there are a series of questions that the clinician should ask:


    What is at issue?
    Where is the conflict?
    What is this a case of? Does it sound like other cases you may have encountered? (e.g., Is it a case of "refusal of potentially life-sustaining treatment by a competent patient"?)
    What do we know about other cases like this one? Is there clear precedent? If so, we call this a paradigm case. A paradigm case is one in which the facts of the case are very clear cut and there has been much professional and/or public agreement about the resolution of the case.
    How is the present case similar to the paradigm case? How is it different? Is it similar (or different) in ethically significant ways?
    The resolution in any particular case will depend on the facts of that case.


    After analyzing a difficult case in this way, clinicians are usually able to think clearly about what is at issue and to identify the best course of action available to them. If a best course of action remains elusive, a formal ethics consultation can be helpful.


    The following diagram can be used to conceptualize some of the issues discussed above.


    Medical Indications:

    Consider each medical condition and its proposed treatment. Ask the following questions:

    Does it fulfill any of the goals of medicine?
    With what likelihood?
    If not, is the proposed treatment futile?
    Patient Preferences:

    Address the following:

    What does the patient want?
    Does the patient have the capacity to decide? If not, who will decide for the patient?
    Do the patient's wishes reflect a process that is
    informed?
    understood?
    voluntary?

    Quality of Life:

    Describe the Patient's quality of life in the patient's terms.
    What is the patient's subjective acceptance of likely quality of life?
    What are the views of the care providers about the quality of life?
    Is quality of life "less than minimal?" (i.e., qualitative futility)
    Contextual Features:

    Social, legal, economic,and institutional circumstances in the case that can:

    influence the decision
    be influenced by the decision
    e.g., inability to pay for treatment; inadequate social support

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    sud325 is offline Newbie 510 points
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    great information

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    sud325 is offline Newbie 510 points
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    many many imp things

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