Medical Futility And Disability Bias: Part Of The .
Medical Futility andDisability BiasPart of the Bioethics andDisability SeriesNational Council on DisabilityNovember 20, 2019
National Council on Disability (NCD)1331 F Street NW, Suite 850Washington, DC 20004Medical Futility and Disability Bias: Part of the Bioethics and Disability SeriesNational Council on Disability, November 20, 2019This report is also available in alternative formats. Please visit the National Council on Disability (NCD)website (www.ncd.gov) or contact NCD to request an alternative format using the following information:ncd@ncd.gov Email202-272-2004 Voice202-272-2022 FaxThe views contained in this report do not necessarily represent those of the Administration, as this andall NCD documents are not subject to the A-19 Executive Branch review process.
National Council on DisabilityAn independent federal agency making recommendations to the President and Congressto enhance the quality of life for all Americans with disabilities and their families.Letter of TransmittalNovember 20, 2019The PresidentThe White HouseWashington, DC 20500Dear Mr. President:On behalf of the National Council on Disability (NCD), I am pleased to submit Medical Futility andDisability Bias, part of a five-report series on the intersection of disability and bioethics. This report, andthe others in the series, focuses on how the historical and continued devaluation of the lives of peoplewith disabilities by the medical community, legislators, researchers, and even health economists,perpetuates unequal access to medical care, including life-saving care.When a physician decides that providing or continuing health care treatment would be “medically futile”to a patient, there are a number of objective, evidence-based factors that can impact this decision.Underrecognized, however, is that a physician’s subjective judgments about whether a patient’s life wouldbe “worth living” should they receive treatment and survive, can also play a role in decision making. Thislatter consideration is a frightening concept for many people with disabilities because some health careproviders, most unknowingly, harbor biases and misperceptions about the quality of life and capacitiesof people with disabilities. These assumptions can and have impacted physicians’ willingness to provideor continue life-sustaining care to a patient that has, or will have if they survive, a disability classified asmedically “severe.”In recent years, there has been a push to regulate medical futility decisions on the state and institutionallevels. State laws, which vary greatly in their content and approach, define the protections, or lackthereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to processbased approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite theincreased attention, however, disability bias still finds its way into futility decision making.The lives of people with disabilities are equally valuable to those without disabilities, and health caredecisions based on devaluing the lives of people with disabilities are discriminatory. Medical Futility andDisability Bias provides an overview of the multiple perspectives on medical futility decisions relating topeople with disabilities and analyzes how state and federal laws can be strengthened to prevent disabilitybias from impacting critical care decisions. It shows that additional protections are needed to ensurethat a patient’s wishes are followed; their life-sustaining treatment is not removed pending transfer toanother facility; and, in the absence of their competency and advance directive, a neutral, unbiased,and independent decision-making body is in place. It concludes by outlining recommendations that canremedy such discrimination.1331 F Street, NW202-272-2004 Voice Suite 850202-272-2074 TTY Washington, DC 20004202-272-2022 Fax www.ncd.gov
NCD stands ready to assist the Administration, Congress, and federal agencies to ensure that peoplewith disabilities do not face discrimination in accessing life-saving medical care.Respectfully,Neil RomanoChairman(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of theU.S. House of Representatives.)2National Council on Disability
National Council on Disability Members and StaffMembersNeil Romano, ChairmanBenro Ogunyipe, Vice ChairpersonBilly AltomRabia BeltJames BrettDaniel GadeAndrés GallegosWendy S. HarbourClyde TerryStaffPhoebe Ball, Legislative Affairs SpecialistStacey S. Brown, Staff AssistantJoan M. Durocher, General Counsel & Director of PolicyLisa Grubb, Executive DirectorNetterie Lewis, Administrative Support SpecialistAmy Nicholas, Attorney AdvisorNicholas Sabula, Public Affairs SpecialistAmged Soliman, Attorney AdvisorAnne Sommers, Director of Legislative Affairs & OutreachAna Torres-Davis, Attorney AdvisorKeith Woods, Financial Management AnalystMedical Futility and Disability Bias3
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ContentsAcknowledgments. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9Background. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9Key Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10Key Recommendations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Acronym Glossary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19Chapter 1: The Evolution of the Concept of Medical Futility. . . . . . . . . . . . . . . . . . . . . 21Origins of the Medical Futility Debate. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21The Evolving Debate on the Definition and Utility of theConcept of Medical Futility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23Chapter 2: The Ethical, Medical, and Disability Rights Perspectives onMedical Futility Decisions Relating to People with Disabilities. . . . . . . . . . . . . . . . . . . 27Case Study: The Unethical and Discriminatory Treatmentof Terrie Lincoln . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27Breaking Down the Divide: The Disparate Viewpoints of theMedical and Disability Communities on Medical Futility. . . . . . . . . . . . . 28Defining Medical Futility and Its Criteria to Avoid Disability Bias. . . . . . . . 34Who Decides and How? Shaping Medical Futility Protocols toEffectuate the Procedural Rights of Patients with Disabilities . . . . . . . . . 36Physicians. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37Patients, Surrogates, and Family Members. . . . . . . . . . . . . . . . . . . . . . 38Ethics Committees. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38Medical Futility and Disability Bias5
Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40A Better Process: Independent Mediation and DecisionMaking Boards, with Judicial Appeal Available. . . . . . . . . . . . . . . . . 41Chapter 3: The Disclosure of Hospital Futility Policies. . . . . . . . . . . . . . . . . . . . . . . . . . 43Chapter 4: State Laws on Medical Futility. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47State Laws Without Patient Protections . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47State Laws with Weak Patient Protections . . . . . . . . . . . . . . . . . . . . . . . . . . 49State Laws with Time-Limited Patient Protections . . . . . . . . . . . . . . . . . . . 50State Laws with Strong Patient Protections. . . . . . . . . . . . . . . . . . . . . . . . . 51Chapter 5: The Lawfulness of Medical Futility Decisions. . . . . . . . . . . . . . . . . . . . . . . . 53Surveying the Field: Legal Implications at the Intersectionof Medical Futility and Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53Disability Nondiscrimination Law and Medical Futility. . . . . . . . . . . . . . . . 57Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63Recommendations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65Endnotes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 696National Council on Disability
AcknowledgmentsThis report is part of a series of reports on bioethics and people with disabilities which was developedthrough a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF). TheNational Council on Disability (NCD) appreciates the work of Carly A. Myers, Staff Attorney, DREDF,for her work on this report, and Marilyn Golden, Senior Policy Analyst, DREDF, who shepherded theentire series in cooperation with NCD. We also thank those who participated on the Advisory Panel, ininterviews, and in the stakeholder convening, whose knowledge and willingness to share informationhelped make this series possible.Medical Futility and Disability Bias7
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Executive SummaryPurposeOBackgroundver the past three decades, medicalThe debate over the appropriate use of medicalfutility decisions by healthcarefutility decisions has a long, tumultuous history.providers—decisions to withhold orWhile the concept of withholding or withdrawingwithdraw medical care deemed “futile” orineffective care dates back to at least 400 BC,“nonbeneficial”—have increasingly becomethe contemporary debate took off in the 1980s,a subject of bioethical debate and facedfollowing a period of prolific development ofheavy scrutiny from members of the disabilityadvanced medical technology, changes to the UScommunity. Negative biases and inaccuratehealthcare reimbursement system, and evolvingassumptions about the quality of life of a personconcepts of patient autonomy. Increasingly,with a disability are pervasive in US societyphysicians began to question whether it wasand can result in the devaluation and disparateappropriate to use invasive, often expensivetreatment of people with disabilities. Health caretechnology on patients they believed could notproviders are not exempt from these deficit-benefit from it. On the opposing side of thebased perspectives, and when they influence adebate, however, were disability and patientcritical care decision, the results can be a deadlyrights advocates, who grew concerned withform of discrimination.how medical futility decisions would be madeThis report addresses the following ethicaland legal questions: Who should have ultimatefor patients with existing or newly acquireddisabilities.decision-making authority to withdraw or withholdDisability and patient rights advocates, amonglifesaving or life-sustaining care to patients? Whatothers, argue that medical futility decisions oftencriteria should be used to define and identifylack objectivity and procedural safeguards, leavingwhen a medical treatment is “futile”? Whatroom for the physician’s recommendation to beprocedures should be followed in the decision-impacted by biases about the quality of life ofmaking process? How can healthcare providerspeople with disabilities. It has been well-improve their understanding of the value of lifedocumented that healthcare providers significantlywith a disability? How can the medical futilityundervalue life with a disability, in part becausedecision process be reshaped to eliminatemost medical education does not include accuratebiases and ensure that the rights of all patients,information on the lived experiences of peopleregardless of disability, are equally effectuated?with disabilities. As a result, healthcare providersMedical Futility and Disability Bias9
remain largely unaware of the high quality of lifedetermination and do not properly follow theand happiness that many people with disabilitiesAmerican Academy of Neurology’s (AAN)experience. This lack of awareness has impactedwell-established and widely respectedmedical futility decision making and, in someguidelines, robbing individuals of theircases, robbed people with disabilities of theirchance to recover.chance to recover. ideal forum for mediating and renderingKey Findings Internal ethics committees are not anmedical futility decisions. By virtue ofHealthcare providers have been criticizedbeing a mechanism of the hospital, theyfor allowing medical futility decisions toare subject to financial, professional, andbe impacted by subjective quality-of-lifepersonal conflicts of interest. Further,judgments, without requiring educationtheir procedures typically lack due processor training in disability competency and,protections and their composition rarelyspecifically, inthe actual lifeexperiences of reflects racial, ethnic,Hospitals are rarelyadvocates, among others, arguerange of disabilities.that medical futility decisions oftenMany healthcarelack objectivity and proceduralproviders criticallysafeguards, leaving room forthey disclose theirundervalue lifethe physician’s recommendationdecision-makingwith a disability.to be impacted by biases aboutpolicies to patients andperceive peoplewith disabilitiesthe quality of life of people withdisabilities.transparent withtheir medical futilitypolicies. Seldom doeven less frequentlydo they make futilitypolicies available toto have a lowthe general public.quality of life when, in reality, mostThe lack of transparency hinders openreport a high quality of life and level ofdiscussion, mutual understanding, and trusthappiness, especially when they haveamong patients, their representatives, andaccess to sufficient healthcare services andtheir healthcare providers.supports. This misperception has negativelyinfluenced physicians’ medical futilitydecisions and resulted in the withdrawal ofnecessary medical care from people withdisabilities.10 people with a wideProviders often and disability diversity.Disability and patient rights All states have at least one law that relatesto medical futility. Of these, 19 state lawsprotect a physician’s futility judgmentand provide no effective protection of apatient’s wishes to the contrary; 18 stateWhen physicians diagnose persistentlaws give patients a right to receive life-vegetative state (PVS) or “brain death,”sustaining treatment, but there are notablethey sometimes rush to make thisproblems with their provisions that reduceNational Council on Disability
their effectiveness; 2 state laws requirestatutory, and regulatory provisions,life-sustaining measures for a limitedincluding the Fourteenth Amendment of theperiod of time pending transfer of theUS Constitution, the Emergency Medicalpatient to another facility; 11 states requireTreatment and Active Labor Act (EMTALA),the provision of life-sustaining treatmentSection 504 of the Rehabilitation Act, thepending transfer without time limitations;Americans with Disabilities Act (ADA),and 1 state prohibits the denial of life-and Section 1557 of the Affordable Caresustaining treatment when it is based onAct (ACA). While still largely unexplored,discriminatory factors.Section 504, the ADA, and Section 1557Medical futility decisions implicatemay be relied on to prevent or remedynumerous federal and state constitutional,medical futility discrimination.Key RecommendationsCongress Congress should enact legislation that requires hospitals and other medical entities to havedue process protections for medical futility decisions; utilize an independent due processmechanism for mediating and deciding medical futility disputes; and disclose medical futilitypolicies to patients, their surrogates, or their family members. Congress should enact legislation to make federal funding for hospitals and other medicalentities contingent on the provision of due process protections in medical futility decisions.Executive BranchThe US Department of Health and Human Services (HHS)Office for Civil Rights (OCR) OCR should issue guidance to healthcare providers clarifying that medical futility decisionsthat rely on subjective quality-of-life assumptions or biases about disability violate federaldisability rights laws.Medical Futility and Disability Bias11
Executive Branch, continued OCR should seek compliance from hospitals and medical facilities that violate disability rightslaws by making medical futility decisions that rely on subjective quality-of-life assumptions orbiases about disability and withhold federal financial assistance when compliance cannot beobtained. HHS should encourage hospitals and medical facilities to use an independent due processmechanism for mediating and deciding medical futility disputes and disclose medical futilitypolicies to patients, their surrogates, or their family members. OCR should issue guidance tohealthcare providers clarifying that medical futility decisions that rely on subjective assumptionsor biases about disability violate federal disability rights laws.Medical and Health Professional Schools Medical and health professional schools should include disability competence as a componentof or in addition to cultural competence training. Medical and health professional schools should be physically and programmatically accessiblefor students with disabilities in order to facilitate diversity among healthcare providers.Hospitals and Medical Facilities Hospitals and medical facilities should utilize an independent board to mediate and, ifnecessary, make medical futility decisions for patients deemed incompetent. The boardshould be independent from the relevant facility and provider(s), offer procedural dueprocess protections, reflect diversity, and have at least one disability rights advocate asa member. Its decisions should be appealable to a court of law. Hospitals and medical facilities should provide full and open disclosure of their medicalfutility policies to patients, their surrogates, and their family members.12National Council on Disability
Nov 20, 2019 · Medical Futility and Disability Bias: Part of the Bioethics and Disability Series. National Council on Disability, November 20, 2019 This report is also available in alternative forma
(4 Hours) Biasing of BJTs: Load lines (AC and DC); Operating Points; Fixed Bias and Self Bias, DC Bias with Voltage Feedback; Bias Stabilization; Examples. (4 Hours) Biasing of FETs and MOSFETs: Fixed Bias Configuration and Self Bias Configuration, Voltage Divider Bias and Design (4 Hours) MODULE - II (12 Hours) .
CHAPTER 11 Conservatism Bias 119 CHAPTER 12 Ambiguity Aversion Bias 129 CHAPTER 13 Endowment Bias 139 CHAPTER 14 Self-Control Bias 150 CHAPTER 15 Optimism Bias 163 Contents vii 00_POMPIAN_i_xviii 2/7/06 1:58 PM Page vii. CHAPTER 16 Mental Accounting Bias 171 CHAPTER 17 Confirmation Bias 187
DC Biasing BJT circuits There is numerous bias configuration of BJT circuits. Some of the common configuration of BJT circuit includes 1. Fixed-bias circuit 2. Emitter-bias circuit 3. Voltage divider bias circuit 4. Collector-feedback bias circuit 5. Emitter-follower bias circuit 6. Common base circuit Fixed Bias Configuration
ES-5: PREVENTING SOCIAL BIAS Controlling Social Bias involves understanding, identifying, and actively countering bias. It is important to reflect on the nature of bias and how it comes about before attempting to control social bias. Bias is a part of human nature because we all naturally prefer familiar things and familiar ways of thinking.
A sensor bias current will source from Sensor to Sensor- if a resistor is tied across R BIAS and R BIAS-. Connect a 10 kΩ resistor across Sensor and Sensor- when using an AD590 temperature sensor. See STEP 4 Sensor - Pins 13 & 14 on page 8. 15 16 R BIAS R BIAS-SENSOR BIAS CURRENT (SW1:7, 8, 9, 10)
4.4.1. Averaging total cloud amount and frequencies of clear sky and precipitation. 12. 4.4.2. Averaging methods for cloud types. 13. 4.4.3. Bias adjustments for cloud type analyses. 14 (partial-undercast bias, abstention bias, clear-sky bias, sky-obscured bias, night-detection bias) 5.
Diode Reverse Bias Reverse bias is the condition that prevents the current to flow through the diode. It happens when connect the voltage supply in a reverse bias, as shown in Figure (12). The p-region to the negative bias of the supply and the n-region to the positive bias of the supply. The reverse bias happens because the positive side of the voltage
Nutrition of ruminants Developing production systems for ruminants using tropical feed resources requires an understanding of the relative roles and nutrient needs of the two-compartment system represented by the symbiotic relationship between rumen micro-organisms and the host animal. Fibre-rich, low-protein forages and crop residues are the most abundant and appropriate feeds for ruminants .
