Patricia King “The Dangers of Difference” * The Dilemma of Difference * Even when a study purports to be helping a disadvantaged group it may cause harm * If the racial difference is ignored harm can result from ignoring factors that may have a correlation with race. Patricia King “The Dangers of Difference” * Inclusion/Exclusion * Inclusion: required that vulnerable groups be protected, e. g. equitable selection, cognizant of specific problems with respect to vulnerable groups * Exclusion: Too much protection might result in the underrepresentation of vulnerable groups.
Patricia King “The Dangers of Difference” * Three reasons for increasing representation of African Americans in clinical trials: 1. There may be biological differences between blacks and whites which would affect the applicability of the findings 2. Race can be a reliable index for certain social conditions e. g. nutrition, access to health care, socioeconomic factors 3. The burdens and benefits of research should be spread among the population regardless of race or ethnicity Patricia King “The Dangers of Difference” How can we advocate for increased participation of minorities in clinical research and minimize the harms that may come from this participation? * Start with the presumption that blacks and whites are biologically the same * Priority should be given to exploring social, cultural, and environmental determinants of disease BEFORE biological hypotheses are studied * If there does turn out to be a biological difference this does not necessitate a hierarchical view of race or to discrimination * Mastroianni and Kahn “Swinging on the Pendulum” Problems w. “protection” * E. g. prisoners wanted to participate in clinical trials * $, Access to better/more frequent health care, believed they were making a contribution to society * However, protection policies precluded prisoners from participation in such studies * Mastroianni and Kahn “Swinging on the Pendulum” * From protection to access * So…protection policies were limiting access to such treatments to the very people they were trying to protect. * Mastroianni and Kahn “Swinging on the Pendulum” Implementation of the NIH guideline requiring inclusion of representative populations of women and minorities unless the research is specific to a particular group (1994) * Why NIH Require Race as a Research Variable: major omissions of racial and ethnic data which may be necessary to address the minority populations’ specific health and social services needs * NIH Requirement * B. 1. The racial and ethnic categories set forth in the standards should not be interpreted as being primarily biological or genetic in reference.
Race and ethnicity may be thought of in terms of social and cultural characteristics as well as ancestry. * B. 2. …ideally, respondent self-identification should be facilitated to the greatest extent possible, recognizing that in some data collection systems observer identification is more practical * D. …self-identification is the preferred means of obtaining information about an individual’s race and ethnicity, except in instances where observer identification is more practical (e. g. completing a death certificate) * D. …continue that policy that the categories are NOT to be used for determining the eligibility of population groups for participation in any Federal programs Chapter 8 Animal Dilemma: Many human beings are suffering from disease, Live animals for research may be the only effective way to develop cures for disease VS. Animals are subjected to suffering and distress, Animals will not benefit Your Position on Animal Research * Are your judgments governed by a: Consequentialist perspective (the ends justify the means) * Deontological perspective (individual autonomy/animal rights are more important than the potential benefits) Two Approaches 1. Utilitarian * Animals, like humans, deserve moral concern * What matters is the extent to which we affect the well-being of the animals * Harm to animals may be justified if, in total, more welfare is gained 2. Animal Rights View (deontological? ) * Animals, like humans, have an absolute right to be treated with respect * Therefore it is wrong to use animals, even as a means to do good things for others
Peter Singer: “All Animals Are Equal” * BUT…we can still say that BASIC RIGHTS apply to nonhuman animals e. g the basic principles of equality do not require that everyone be treated exactly the same * “The basic principle of equality, I shall argue, is equality of consideration; and equal consideration for different beings may lead to different treatment and different rights. ” * “It is an implication of this principle of equality that our concern for others ought not to depend on what they are like, or what abilities they possess ….. t is on this basis that the case against racism and the case against sexism must both ultimately rest; and it is in accordance with this principle that speciesism is also to be condemned. ” * “If possessing a higher degree of intelligence does not entitle on human to use another for his own ends, how can it entitle humans to exploit nonhumans? ” * “If a being suffers, there can be no moral justification for refusing to take that suffering into consideration…. he principle of equality requires that its suffering be counted equally with the like suffering” * “If a being is not capable of suffering, or of experiencing enjoyment or happiness, there is nothing to be taken into account. This is why the limit of sentience (capacity to suffer or experience enjoyment or happiness) is the only defensible boundary of concern for the interests of others. ” * “The experimenter, then, shows a bias in favor of his own species whenever he carries out an experiment on a nonhuman for a purpose that he would not think justified him in using a uman being at an equal or lower level of sentience, awareness, ability to be self-directing, etc. ” Degrazia Article * Wants to find common ground between those in support of and those opposed to the use of animals in biomedical research Degrazia Article * AMA “Animal Research Action Plan” and “White Paper”: encourage members to promote the perception of animal rights activists as “anti-science” and against medical progress and also to fight emotion with emotion * R. G. Frey Article * Three Positions on Experimentation * Abolitionism * Anything Goes * Middle Position * R.
G. Frey Article 1. Abolitionism * A) Immediate Abolitionism: all animal experimentation should stop at once, no matter what. * B) Progressive Abolitionism: animal experimentation is ended as replacements become available * If you hold B why wouldn’t you hold A? Frey points out that nobody would “accept the progressive closure of a concentration camp” * BUT…the progressive form of abolitionism is more widely accepted than the alternative. Why? 2. Anything Goes * We can do anything we want with respect to animals an research * This position is not widely accepted Animal welfare supporters such as Russell and Burch, advocate the three R’s to pro-research groups * Reduction (of # of animals used and suffering inflicted) * Refinement (of experiment to eliminate duplication of results) * Replacement (of animals with non-animal models) 3. The Middle Position (Frey is advocating this) * Animals have moral standing * Their suffering is to be taken seriously * Their lives have value * Trade-0ffs between benefit and loss are accepted * Progressive abolition will occur as animal models are replaced Frey’s “Middle Ground” * Human Benefit The claim that animal experimentation benefits humans needs to be supplemented because the same experiments, if done on humans, would be of more benefit to humans * It needs to be shown why it would be wrong to do the research in humans but not in animals Traditional Justification of Animal Use in Experimentation * Animals are not members of the moral community (they lack moral standing) * Their lives have little value * Humans are members of the moral community so we cannot use them in the way that we use other animals Traditional Justification of Animal Use in Experimentation However…this view of animals as lacking moral standing may be fallacious * E. g. primate behavior * This old justification isn’t working…. any new justification must acknowledge the moral standing of animals, e. g. we do acknowledge that animals can experience pain and suffering * If the lives of animals have no value then why do we protect them at all? Frey: What makes one count morally? * Whatever characteristic we select around which to formulate some claims of protection from research, we seem inevitably to come across humans who lack that characteristic and animals that have it. This is very similar to Singer Frey: What makes one count morally? * For Frey what counts is whether a being is an “experiential subject”: has experiences that have quality which determines happiness, sadness, etc.. This subject has a welfare that can be positively or negatively affected. Frey: Quality of Life * So…if all experiential beings have moral standing why do we perform some experiments on animals that we would not perform on humans? * Frey says it’s because we take a “quality of life view” that is speciest * How do we compare lives?
Frey: Comparing Lives * Why is it worse to kill the mouse than the man? Or is it? * How can we know the value of animal lives (even within our own species)? Frey’s Middle Ground * Agency is what sets humans apart, it “enables normal adult humans to enhance the quality and value of their lives in ways that no account of the activities we share with animals captures” * THUS…”Lives of higher quality have greater value than lives of lower quality and .. taking a life of higher quality in preference to a life of lower quality is worse. Chapter 9 * Hippocratic Oath (modern version): “I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. ” * Hippocratic Oath (classic version): “What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about. ” Medical Confidentiality * AMA Code of Medical Ethics ( 1994) states: The information disclosed to a physician during the course of the relationship between physician and patient is confidential to the greatest possible degree… …. the obligation to safeguard patient confidences is subject to certain exceptions, which are ethically and justified because of overriding social considerations. ” Medical Confidentiality * Justifications 1. Respect for autonomy confidentiality is implied in this relationship 2. Necessary for the patient/doctor relationship to work 3. Medical Confidentiality The first justification: relies upon the intrinsic “wrongness” of the breach * The second justification: relies upon a consequentialist perspective Medical Confidentiality * So, confidentiality is not an absolute duty * Doctors are required to factor “peril to the public” into their decisions regarding confidentiality 4. E. g. Tarasoff case (we will discuss this later in the lecture) Medical Confidentiality * What does confidentiality require? 1. The physician may not distribute patient information to other parties. 2.
The physician must take care with patient information to allow only authorized access. Medical Confidentiality * Problems with these requirements to maintain confidentiality? * Conversations with other doctors * Unique problems associated with the maintenance of electronic records Medical Confidentiality * Exceptions? * Concern for the safety of other, specific, persons (the law does allow breach in some of these cases) * Concern for public welfare: AIDS and Class IV HIV, hepatitis A and B, measles, rabies, tetanus, and tuberculosis are to be reported in various states Siegler Article Is there any “real” confidentiality? * Historically, the answer is probably yes but modern health care has compromised this Siegler Article * Is confidentiality a “strict” duty anymore? No. * Go back to the 2 justifications * Respect for autonomy * Confidentiality is necessary for the medical profession to function properly Siegler Article * Siegler’s shows new issues that should be considered with respect to confidentiality * High-tech “health teams” instead of one doctor * Third-party payment access (chart review, insurance auditors, inancial officers, etc. ) Siegler Article * This new “health model” requires us to modify our understanding of confidentiality in medicine Siegler’s “solutions” 1. Care in confidentiality within physician offices 2. Access on a “need to know” basis e. g. division of record 3. Patient must be informed re: medical confidentiality 4. Patients should be allowed to view their files and make decisions regarding what is to be made available to whom Tarasoff Case * Poddar killed Tatiana Tarasoff on 10/27/1969, months earlier he had told his psychologist, Dr.
Moore, he intended to kill Tatian; Dr. Moore alerted police who interrogated Poddar and found him to be “rational”; Neither Tatiana or her family were ever warned of this threat Tarasoff Case * Did Dr. Moore have a duty to warn Tatiana and her family? * The court held the therapist does have a duty to protect, not only his patient but, the potential victim (initial ruling cited “duty to warn”) * Therapist must use “reasonable care” to protect the potential victim * opinion says that imposing a “duty to warn” will increase violence Chapter 10
David Thomasma “Telling the Truth to Patients: A Clinical Ethics Exploration” * Reasons for telling the truth: 1. It is a right, respect for a person demands it 2. It is a utility (needed to make informed judgments) 3. It is a kindness (would withdraw from relationships if lies were always told) * Sometimes the “rule” over truth telling may be overridden. * “The ultimate value…is the survival of the community and/or the well-being of the individual” Thomasma Article * In general, justification for overriding the rule may be given for 3 different reasons: 1. Survival of the individual 2.
Survival of the community 3. And the ability of a person to be able to comprehend the truth Thomasma Article * In the ’60’s most physicians did not disclose diagnoses of cancer because there was no treatment but by the ‘70’s autonomy and informed consent were emphasized over this previously paternalistic attitude * Why this shift? * Probably because of better treatment options * “powerlessness of the healer was supplanted with technological and pharmaceutical potentialities” * Goal of healthcare is to provide help for illness and reduce harm to patient Thomasma Article Just want to focus on one of Thomasma’s clinical examples: * A woman, 19 years old, comes for a checkup because she plans to get married and has not yet had a period, she is mildly retarded, no ovaries, vagina or uterus * Has an undescended testicle * She is told that she has something like a “gonadal mass” in her abdomen that might turn into cancer if not removed, she is assisted to remain a female. * Was this the right course of action? The Boy Who was a girl * In 1968 a baby boy (a twin) lost his penis because of a botched circumcision.
The physician recommended the boy be raised as a girl, Brenda. * By the late 1970’s sex researchers were claiming that the sex of a person is hardwired before birth through hormonal influences in the womb The Boy Who was a girl * Brenda grew up as a particularly rowdy tomboy with a perennial feeling of maladjustment. Brenda learned of her injury as an infant and rebelled. He started wearing boy’s clothes, had phalloplastic surgery to create a penis, and discarded the Brenda identity. * Brenda grew up to be David, had reconstructive surgery, got married, and adopted his wife’s three hildren. * He eventually committed suicide Medical Errors and Disclosure * Francoise Baylis * Typically physicians don’t discuss medical errors with patients. Why? * Not sure an outcome is the result of an error, i. e. not all harms which are unanticipated are the result of an error * Full disclosure serves no useful purpose and increases anxiety and loss of confidence in physician * In serious cases, nondisclosure is motivated by self-interest To disclose or not to disclose? * A four-year old girl is admitted for investigation of a persisting anemia.
There is careful discussion by the healthcare team of the need to plan these investigations well and to take no more blood than necessary. The clinical clerk is left to write the orders after rounds; inadvertently she orders some blood work for this child that was intended for the patient in the next room. When discovered, it is estimated that 10ccs of blood were taken unnecessarily * Medical Errors and Disclosure * American Medical Association Policy: * “a physician must report an accident, injury, or bad result stemming from his or her treatment. ” Wu et al. article * Types of mistakes: System mistakes, e. g. medicine not available, confusing medication labeling, etc. ,- physician shares responsibility * Individual mistakes, e. g. error because of a deficiency in physician’s knowledge, – physician has primary responsibility * Does it matter what kind of mistake it is? Wu et al. article * Consequentialism and disclosure: * Benefits of disclosure: * Allows the patient to obtain timely treatment which may prevent further harm * May prevent the patient from worrying about the cause of a medical problem (maybe they are worried about it happening again) Allows patient to make informed decisions * May allow the patient to pursue compensation for injuries * Could promote trust, if the patient is not informed the patient/physician relationship is compromised * Harms of disclosure: * Knowledge of mistake may cause anxiety * May destroy patient’s faith/trust in physician * Some patients do not want to know everything about their condition Chapter 11-12 Informed Consent * Requirements: 1. The person must be “competent to consent”, i. e. must be able to understand the consequences of the decision and have the capacity to make the decision. how to determine? ) 2. Consent must be voluntary, i. e. free from coercion (is this possible? ), e. g. family coercion to participate in therapy * other aspects of “coercion”: people without health insurance participating in clinical studies and situations where standard therapy is not very good 3. Consent must be informed, all known risks, and their probablities, must be communicated and the patient must be able to comprehend this information * Information about alternative therapies, cost, time Informed Consent * Why have it? 1.
Principle of autonomy: respect people’s capacity for self-determination 2. Principle of beneficence: promotion of patient welfare (knowledgeable, autonomous patients who make their own choices will advance their own best interests) Canterbury vs. Spence * Dr. Spence felt that communication of the risk of paralysis to the patient is not good medical practice because it might deter the patient from undergoing needed surgery and might produce adverse psychological reactions which could preclude the success of the operation. Canterbury vs. Spence * In the court of appeals decision: every human being of adult years and sound mind has a right to determine what shall be done with his own body…” “True consent to what happens to one’s self is the informed exercise of a choice, and that entails an opportunity to evaluate knowledgeably the options available and the risks attendant upon each” “…the requirement of reasonable divulgence by physician to patient to make such a decisions possible” * Canterbury vs. Spence * “Respect for the patient’s right of self-determination on particular therapy demands a standard set by law for physicians rather than one which physicians may or may not impose upon themselves. * So…The adequacy of disclosure should be judged by what PATIENTS find relevant to their situation. (this is different from earlier rulings which stated that disclosure was adequate if it met customary medical standards) * Canterbury vs. Spence Two exceptions to the general rule of disclosure (with respect to informed consent): 1. Patient unconscious (or incapable of consenting) and harm from failure to treat is imminent and outweighs the risks of the proposed treatment 2.
When risk-disclosure poses such a threat of detriment to the patient as to become unfeasible or contraindicated from a medical point of view. Right to Refuse Treatment * The issue only arises when a patient’s wishes conflict with a physician’s advice * What are the issues (when this happens)? * Autonomy * Beneficence * Paternalism * Competence 1. Autonomy * People must be treated as ends in themselves * What does this entail? Respect for autonomy necessitates that people not be controlled by others. People should be free to make their own decisions. 2. Paternalism The principle of respect for autonomy, in this situation, is conflicting with the principle of beneficence (recall, both of these were part of the Belmont Report) * Paternalism: prevent someone from harming themselves * Paternalism requires that respect for autonomy is overridden * Hippocrates felt the physician’s duty was to the patient’s physical well-being; patient as passive. * Today emphasis is on respecting the right to self-determination Right to Refuse Treatment * Perhaps the best known cases are refusal of blood transfusions by Jehovah’s Witnesses. If the patient is competent, no treatment should be given * The principle of respect for autonomy overrules the principle of beneficence The Right to Refuse Treatment * Blood transfusions and Jehovah’s Witnesses * 1982: Blood transfusion is ordered by court for father of three * 1994: Supreme Court rules in favor of woman who sued hospital for giving her a blood transfusion The Right to Refuse Treatment * Elizabeth Bouvia (1986) * Won appeal to have feeding tube removed * Severe cerebral palsy * The opinion: Her decision to forego medical treatment belongs to her * Quality of life diminished “to the point of hopelessness, uselessness, unenjoyability and frustration” * “It is, therefore, immaterial that the removal of the nasogastric tube will hasten or cause Bouvia’s eventual death. Being competent she has the right to live out the remainder of her natural life in dignity and peace. ” * Nancy Beth Cruzan (1990) * Nancy was in a car accident that left her in a persistent vegetative state * Parents requested removal of feeding tube Request was denied not because it was decided Nancy did not have a right to die but because it was not clear that it would be her wish to have the feeding tube removed * This decision was upheld by the Supreme Court (Rehnquist wrote the decision) * Right to Refuse Treatment Refusing treatment for children on religious grounds * One famous court decision “Parents may be free to become martyrs themselves. But it does not follow the are free…to make martyrs of their children. ” Refusing treatment for children on religious grounds American Academy of Pediatrics (AAP) “Constitutional guarantees of freedom of religion do not permit children to be harmed through religious practices, nor do they allow religion to be a valid defense when an individual harms or neglects a child. ” Right to Refuse Treatment * Abraham’s Law (2007) * In some circumstances parents could refuse medical treatment for a child and not face charges of neglect * A child of 14 or older could refuse treatment in some situations. * A utilitarian perspective * Maximize good for everyone involved (which may justify paternalistic actions) * To promote greatest good for patients (max. ell-being and min. pain/suffering): a physician may think it’s legitimate for breach confidentiality or mislead patients about their condition or to override refusal of treatment * Act-Utilitarian * The rightness of the action depends on the relative good produced by individual actions * Physician may judge that it’s morally permissible to lie to a patient about a beneficial treatment to overcome the patient’s refusal to be treated. * Refusing Treatment * Rule-Utilitarian * Rightness depends on the good maximized by rules governing categories of actions. Physician may judge that lies do more harm than good because they erode public trust in the medical profession. Better to adhere to a rule barring deceit as a means of getting patients to accept a treatment * A Kantian Approach * Rejection, generally, of paternalist approach * The means-end form of the categorical imperative insists on respect for the rights and autonomy of persons (utility plays no role here) * Respect for patient’s decision * Informed consent would be mandatory and misleading the patient would be taboo Advance Directives: Living Will A living will is an advance instruction directive which declares a person’s wishes with respect to sustaining life through major medical interventions under certain medical conditions e. g. artificial respiration, nutrition/hydration, cardiopulmonary resuscitation. Advanced Directives: DPOA * Durable Power of Attorney for Health Care * Designates a particular individual at the “attorney-in-fact” for making healthcare decisions. * Does not contain directions regarding specific treatments * PROBLEMS? Advance Directives: Rich Article “When a healthy person states preferences for treatment or nontreatment of a hypothetical condition that might arise during some possible future period of decisional incapacity, the level of potential uncertainty is greatly increased. ” * Case: re Eichner (1981) * Brother Fox (after discussing the Karen Ann Quinlan case) indicated to several members of his religious order that he did not wish to have his life sustained if in a persistent vegetative state (PVS) * He suffered cardiac arrest during surgery and entered a PVS * Father Eichner petitioned the court to remove life support and won. The court concluded that Brother Fox’s remarks constituted “solemn pronouncements” * Case of Michael Martin (1995) * Repeatedly told his wife that he would not want to live a life in which he could not fully function * He sustained serious injuries in a car accident, could not walk or talk, depended on a feeding tube and colsotomy * His wife filed to request withdrawal of nutritional support * Advance Directives: Rich Article * Case of Michael Martin Initially the court ruled that because his wishes weren’t in writing they could not be respected the appellate court reversed this decision and approved removal of the feeding tube. * The Michigan Supreme Court then ruled that Michael “was young and healthy” when he made the remarks and that the remarks “were remote in time and place from his present circumstances” * Case of Michael Martin * So…. young and healthy people would not be able to issue advance directives (seems like a serious infringement on autonomy) AND no competent person would ever be able to decline treatment for a future period of time when they may be incompetent