Medical Futility and 

Disability Bias

Part of the Bioethics and 

Disability Series

National Council on Disability

November 20, 2019
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

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 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 Email

202-272-2004 Voice

202-272-2022 Fax

The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
National Council on Disability

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families.

Letter of Transmittal

November 20, 2019

The President

The White House

Washington, DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I am pleased to submit Medical Futility and 

Disability Bias, part of a five-report series on the intersection of disability and bioethics. This report, and 

the others in the series, focuses on how the historical and continued devaluation of the lives of people 

with 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 would 

be “worth living” should they receive treatment and survive, can also play a role in decision making. This 

latter consideration is a frightening concept for many people with disabilities because some health care 

providers, most unknowingly, harbor biases and misperceptions about the quality of life and capacities 

of people with disabilities. These assumptions can and have impacted physicians’ willingness to provide 

or continue life-sustaining care to a patient that has, or will have if they survive, a disability classified as 

medically “severe.”

In recent years, there has been a push to regulate medical futility decisions on the state and institutional 

levels. State laws, which vary greatly in their content and approach, define the protections, or lack 

thereof, 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 the 

increased 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 care 

decisions based on devaluing the lives of people with disabilities are discriminatory. Medical Futility and 

Disability Bias provides an overview of the multiple perspectives on medical futility decisions relating to 

people with disabilities and analyzes how state and federal laws can be strengthened to prevent disability 

bias from impacting critical care decisions. It shows that additional protections are needed to ensure 

that a patient’s wishes are followed; their life-sustaining treatment is not removed pending transfer to 

another 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 can 

remedy such discrimination.

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov
NCD stands ready to assist the Administration, Congress, and federal agencies to ensure that people 

with disabilities do not face discrimination in accessing life-saving medical care.

Respectfully,

Neil Romano

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the 

U.S. House of Representatives.)

2 National Council on Disability
National Council on Disability Members and Staff

Members

Neil Romano, Chairman

Benro Ogunyipe, Vice Chairperson

Billy Altom

Rabia Belt

James Brett

Daniel Gade

Andrés Gallegos

Wendy S. Harbour

Clyde Terry

Staff

Phoebe Ball, Legislative Affairs Specialist

Stacey S. Brown, Staff Assistant

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Executive Director

Netterie Lewis, Administrative Support Specialist

Amy Nicholas, Attorney Advisor

Nicholas Sabula, Public Affairs Specialist

Amged Soliman, Attorney Advisor

Anne Sommers, Director of Legislative Affairs & Outreach

Ana Torres-Davis, Attorney Advisor

Keith Woods, Financial Management Analyst

Medical Futility and Disability Bias 3
4 National Council on Disability
Contents

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Key Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Key Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Acronym Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Chapter 1: The Evolution of the Concept of Medical Futility . . . . . . . . . . . . . . . . . . . .  2

Origins of the Medical Futility Debate . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

The Evolving Debate on the Definition and Utility of the 

Concept of Medical Futility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Chapter 2: The Ethical, Medical, and Disability Rights Perspectives on 

Medical Futility Decisions Relating to People with Disabilities . . . . . . . . . . . . . . . . . .  2

Case Study: The Unethical and Discriminatory Treatment 

of Terrie Lincoln . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Breaking Down the Divide: The Disparate Viewpoints of the 

Medical and Disability Communities on Medical Futility . . . . . . . . . . . .  2

Defining Medical Futility and Its Criteria to Avoid Disability Bias . . . . . . .  3

Who Decides and How? Shaping Medical Futility Protocols to 

Effectuate the Procedural Rights of Patients with Disabilities . . . . . . . .  3

Physicians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Patients, Surrogates, and Family Members . . . . . . . . . . . . . . . . . . . . .  3

Ethics Committees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Medical Futility and Disability Bias 5
Courts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

A Better Process: Independent Mediation and DecisionMaking Boards, with Judicial Appeal Available . . . . . . . . . . . . . . . .  4

Chapter 3: The Disclosure of Hospital Futility Policies . . . . . . . . . . . . . . . . . . . . . . . . .  4

Chapter 4: State Laws on Medical Futility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

State Laws Without Patient Protections . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

State Laws with Weak Patient Protections . . . . . . . . . . . . . . . . . . . . . . . . .  4

State Laws with Time-Limited Patient Protections . . . . . . . . . . . . . . . . . .  5

State Laws with Strong Patient Protections . . . . . . . . . . . . . . . . . . . . . . . .  5

Chapter 5: The Lawfulness of Medical Futility Decisions . . . . . . . . . . . . . . . . . . . . . . .  5

Surveying the Field: Legal Implications at the Intersection 

of Medical Futility and Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Disability Nondiscrimination Law and Medical Futility . . . . . . . . . . . . . . .  5

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

6 National Council on Disability
Acknowledgments

This report is part of a series of reports on bioethics and people with disabilities which was developed 

through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF). The 

National 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 the 

entire series in cooperation with NCD. We also thank those who participated on the Advisory Panel, in 

interviews, and in the stakeholder convening, whose knowledge and willingness to share information 

helped make this series possible.

Medical Futility and Disability Bias 7
8 National Council on Disability
Executive Summary

Purpose

Over the past three decades, medical 

futility decisions by healthcare 

providers—decisions to withhold or 

withdraw medical care deemed “futile” or 

“nonbeneficial”—have increasingly become 

a subject of bioethical debate and faced 

heavy scrutiny from members of the disability 

community. Negative biases and inaccurate 

assumptions about the quality of life of a person 

with a disability are pervasive in US society 

and can result in the devaluation and disparate 

treatment of people with disabilities. Health care 

providers are not exempt from these deficitbased perspectives, and when they influence a 

critical care decision, the results can be a deadly 

form of discrimination.

This report addresses the following ethical 

and legal questions: Who should have ultimate 

decision-making authority to withdraw or withhold 

lifesaving or life-sustaining care to patients? What 

criteria should be used to define and identify 

when a medical treatment is “futile”? What 

procedures should be followed in the decisionmaking process? How can healthcare providers 

improve their understanding of the value of life 

with a disability? How can the medical futility 

decision process be reshaped to eliminate 

biases and ensure that the rights of all patients, 

regardless of disability, are equally effectuated?

Background

The debate over the appropriate use of medical 

futility decisions has a long, tumultuous history. 

While the concept of withholding or withdrawing 

ineffective care dates back to at least 400 BC, 

the contemporary debate took off in the 1980s, 

following a period of prolific development of 

advanced medical technology, changes to the US 

healthcare reimbursement system, and evolving 

concepts of patient autonomy. Increasingly, 

physicians began to question whether it was 

appropriate to use invasive, often expensive 

technology on patients they believed could not 

benefit from it. On the opposing side of the 

debate, however, were disability and patient 

rights advocates, who grew concerned with 

how medical futility decisions would be made 

for patients with existing or newly acquired 

disabilities.

Disability and patient rights advocates, among 

others, argue that medical futility decisions often 

lack objectivity and procedural safeguards, leaving 

room for the physician’s recommendation to be 

impacted by biases about the quality of life of 

people with disabilities. It has been welldocumented that healthcare providers significantly 

undervalue life with a disability, in part because 

most medical education does not include accurate 

information on the lived experiences of people 

with disabilities. As a result, healthcare providers 

Medical Futility and Disability Bias 9
remain largely unaware of the high quality of life 

and happiness that many people with disabilities 

experience. This lack of awareness has impacted 

medical futility decision making and, in some 

cases, robbed people with disabilities of their 

chance to recover.

Key Findings

■ Healthcare providers have been criticized 

for allowing medical futility decisions to 

be impacted by subjective quality-of-life 

judgments, without requiring education 

or training in disability competency and, 

specifically, in 

the actual life 

experiences of 

people with a wide 

range of disabilities.

■ Many healthcare 

providers critically 

undervalue life 

with a disability. 

Providers often 

perceive people 

with disabilities 

to have a low 

quality of life when, in reality, most 

report a high quality of life and level of 

happiness, especially when they have 

access to sufficient healthcare services and 

supports. This misperception has negatively 

influenced physicians’ medical futility 

decisions and resulted in the withdrawal of 

necessary medical care from people with 

disabilities.

■ When physicians diagnose persistent 

vegetative state (PVS) or “brain death,” 

they sometimes rush to make this 

Disability and patient rights 

advocates, among others, argue 

that medical futility decisions often 

lack objectivity and procedural 

safeguards, leaving room for 

the physician’s recommendation 

to be impacted by biases about 

the quality of life of people with 

disabilities

determination and do not properly follow the 

American Academy of Neurology’s (AAN) 

well-established and widely respected 

guidelines, robbing individuals of their 

chance to recover.

■ Internal ethics committees are not an 

ideal forum for mediating and rendering 

medical futility decisions. By virtue of 

being a mechanism of the hospital, they 

are subject to financial, professional, and 

personal conflicts of interest. Further, 

their procedures typically lack due process 

protections and their composition rarely 

reflects racial, ethnic, 

and disability diversity.

■ Hospitals are rarely 

transparent with 

their medical futility 

policies. Seldom do 

they disclose their 

decision-making 

policies to patients and 

even less frequently 

do they make futility 

policies available to 

the general public.

The lack of transparency hinders open 

discussion, mutual understanding, and trust 

among patients, their representatives, and 

their healthcare providers.

■ All states have at least one law that relates 

to medical futility. Of these, 19 state laws 

protect a physician’s futility judgment 

and provide no effective protection of a 

patient’s wishes to the contrary; 18 state 

laws give patients a right to receive lifesustaining treatment, but there are notable 

problems with their provisions that reduce 

10 National Council on Disability
their effectiveness; 2 state laws require 

life-sustaining measures for a limited 

period of time pending transfer of the 

patient to another facility; 11 states require 

the provision of life-sustaining treatment 

pending transfer without time limitations; 

and 1 state prohibits the denial of lifesustaining treatment when it is based on 

discriminatory factors.

■ Medical futility decisions implicate 

numerous federal and state constitutional, 

statutory, and regulatory provisions, 

including the Fourteenth Amendment of the 

US Constitution, the Emergency Medical 

Treatment and Active Labor Act (EMTALA), 

Section 504 of the Rehabilitation Act, the 

Americans with Disabilities Act (ADA), 

and Section 1557 of the Affordable Care 

Act (ACA). While still largely unexplored, 

Section 504, the ADA, and Section 1557 

may be relied on to prevent or remedy 

medical futility discrimination.

Key Recommendations

Congress

■ Congress should enact legislation that requires hospitals and other medical entities to have 

due process protections for medical futility decisions; utilize an independent due process 

mechanism for mediating and deciding medical futility disputes; and disclose medical futility 

policies to patients, their surrogates, or their family members.

■ Congress should enact legislation to make federal funding for hospitals and other medical 

entities contingent on the provision of due process protections in medical futility decisions.

Executive Branch

The US Department of Health and Human Services (HHS) 

Office for Civil Rights (OCR)

■ OCR should issue guidance to healthcare providers clarifying that medical futility decisions 

that rely on subjective quality-of-life assumptions or biases about disability violate federal 

disability rights laws.

Medical Futility and Disability Bias 11
Executive Branch, continued

■ OCR should seek compliance from hospitals and medical facilities that violate disability rights 

laws by making medical futility decisions that rely on subjective quality-of-life assumptions or 

biases about disability and withhold federal financial assistance when compliance cannot be 

obtained.

■ HHS should encourage hospitals and medical facilities to use an independent due process 

mechanism for mediating and deciding medical futility disputes and disclose medical futility 

policies to patients, their surrogates, or their family members. OCR should issue guidance to 

healthcare providers clarifying that medical futility decisions that rely on subjective assumptions 

or biases about disability violate federal disability rights laws.

12 National Council on Disability

Medical and Health Professional Schools

■ Medical and health professional schools should include disability competence as a component 

of or in addition to cultural competence training.

■ Medical and health professional schools should be physically and programmatically accessible 

for 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, if 

necessary, make medical futility decisions for patients deemed incompetent. The board 

should be independent from the relevant facility and provider(s), offer procedural due 

process protections, reflect diversity, and have at least one disability rights advocate as 

a member. Its decisions should be appealable to a court of law.

■ Hospitals and medical facilities should provide full and open disclosure of their medical 

futility policies to patients, their surrogates, and their family members.
State Legislatures

■ State legislatures should adopt or amend relevant statutes and regulations to mandate 

that hospitals and healthcare providers utilize an independent board to mediate and, if 

necessary, make medical futility decisions for incompetent patients; expressly prohibit 

disability discrimination in the medical futility context; and require providers to provide 

unlimited life-sustaining treatment to an individual pending their transfer to another facility.

Medical Futility and Disability Bias 13
14 National Council on Disability
Acronym Glossary

AAN American Academy of Neurology

ACA Active Labor Act

ADA Americans with Disabilities Act

AMA American Medical Association

CPR cardiopulmonary resuscitation

DNR do not resuscitate

DREDF Disability Rights Education & Defense Fund

EMTALA Emergency Medical Treatment and Active Labor Act

HHS Health and Human Services

ICU intensive care unit

NCD National Council on Disability

NDRN National Disability Rights Network

OCR Office for Civil Rights

PVS persistent vegetative state

SCI spinal cord injury

SDRMOV Supporters of Disability Rights in the Mid-Ohio Valley

Medical Futility and Disability Bias 15
16 National Council on Disability
Methodology

In order to develop the medical futility report and its recommendations, NCD conducted a cross-sectional 

literature review, engaged in legal research, and conducted in-depth interviews with diverse stakeholders. 

The informed perspectives of these individuals, particularly of those who have experienced or witnessed 

futility discrimination, helped shape the content of this report and its recommendations.

Medical Futility and Disability Bias 17
A person with a disability, like any other person, 

should not have to prove that they are “worthy” 

of their lives or will “contribute” to society in 

order to receive lifesaving or life-sustaining care

Their value should be assumed, and the medical 

futility decision process should be structured 

to ensure that subjective, often-biased value 

judgments do not result in the denial of health 

care treatment

18 National Council on Disability
Introduction

“

That night made me realize I was not a 

human being but a tragic figure. Out of 

the kindness of the physician’s heart, 

I was being given the chance to end my life.”1

The words of William Peace—Doctor of 

Anthropology, disability advocate, and survivor of 

medical futility discrimination—are sobering and 

terrifying. What set of circumstances led to his 

physician’s wholly inappropriate, yet frighteningly 

well-intentioned, offering? If Dr. Peace were not 

a wheelchair user, would his physician have even 

considered, let alone expressed, such a thought? 

Dr. Peace faced disability discrimination in the 

context of a medical futility decision, and he lived 

to tell his story.

Medical futility is an ethically, medically, and 

legally divisive concept concerning whether 

and when a healthcare provider has the 

authority to refuse to provide medical care that 

they deem “futile” or “nonbeneficial.” Medical 

futility elicits a host of ethical questions, 

including: How do we define medical futility? 

Who should decide whether to withdraw or 

withhold lifesaving or life-sustaining care to 

patients who are deemed critically ill? What 

criteria should be used to identify when a 

medical treatment is “futile”? What procedures 

should be followed in the decision-making 

process? The debate becomes even more 

complex in the context of disability, where 

biases and negative assumptions about the 

quality of life of a person with a disability have 

been shown to be pervasive.2 Many providers 

simply assume that life is “not worth living” 

when a person has, or if they survive will have, 

a disability classified as medically “severe.”3

When misinformed perspectives influence a 

decision to withhold or withdraw life-saving or 

life-sustaining care, the results can be a deadly 

form of discrimination.

This report frames the medical futility 

debate from this perspective, focusing on 

the importance of achieving equal protection 

for people with disabilities in medical futility 

What Is Medical Futility?

Medical futility is an ethically, medically, and 

legally divisive concept concerning whether 

and when a healthcare provider has the 

authority to refuse to provide medical care 

that they deem “futile” or “nonbeneficial.” 

A “medical futility decision” is a decision to 

withhold or withdraw medical care deemed 

“futile” or “nonbeneficial.”

Medical Futility and Disability Bias 19
decisions. It will examine the evolution of the 

concept of medical futility; the ethical and 

disability rights perspectives on the debate; 

the transparency, or lack thereof, of hospital 

futility policies; state law approaches to medical 

futility; and the lawfulness of futility decisions 

under federal nondiscrimination law. The report 

concludes with a set of recommendations on 

how to reduce and eliminate disability bias in 

medical futility decisions.

20 National Council on Disability
Chapter 1: The Evolution of the Concept 

of Medical Futility

Over the past three decades, whether, 

when, and who has the authority to 

withhold or withdraw medical care that 

is deemed “futile” has increasingly become 

a subject of bioethical and legal debate. The 

contemporary concept of medical futility 

emerged in medical literature in the 1980s.4

Following a period of prolific development 

of advanced medical technology and a shift 

in medical reimbursement methodologies, 

debate arose in the healthcare community over 

whether it was appropriate to use invasive, 

often expensive technology on patients who the 

physician believed could not benefit from it.5 The 

early debates focused on the definition and utility 

of the concept of medical futility, with some 

scholars proffering quantitative or qualitative 

definitions and others advocating for processbased approaches for resolving futility disputes.6

Parallel to the substantive disagreements over 

the meaning of medical futility was a debate, 

playing out in courts across the country, over who 

should have the final authority to make life-saving 

or life-sustaining treatment decisions.7

 The stillevolving debates evidence shifting perspectives 

on the nature of the doctor–patient relationship 

and the role—or lack thereof—that resource 

rationing should have in the healthcare setting. 

Today, the medical futility debate continues, but it 

has also broadened to encompass a wider range 

of therapeutic modalities, and it has deepened, 

as individuals, families, and disability advocates 

have increasingly held the medical community 

and surrogate decision makers8

 accountable for 

subjective decision making, misguided quality-oflife assumptions, and conflicts of interest.9

Origins of the Medical Futility Debate

The concept of medical futility has a complex, 

multifaceted history. Some scholars trace its 

roots as far back as 400 BC, when Hippocrates 

suggested that physicians need not treat 

individuals who were “overmastered by their 

diseases, realizing that in such cases medicine is 

powerless.”10 In the context of modern medicine, 

however, debates over the meaning and ethical 

implications of futility decisions did not become 

prominent until the late 20th century.11 The 

emergence of the futility debate has been 

credited to a number of factors, including the 

development of advanced life-saving medical 

technologies,12 changes in the US healthcare 

reimbursement system,13 evolving concepts of 

patient autonomy,14 and the rise of the right-to-die 

movement.15 By the 1980s, these developments, 

among others, converged and the contemporary 

concept of medical futility began to take shape.

Advances in lifesaving and life-sustaining 

medical technologies have radically changed 

the provision of medical care. Beginning in 

Medical Futility and Disability Bias 21
Factors Influencing the Futility 

Debate

■ Advanced life-saving medical technology

■ Changes in healthcare reimbursement

■ Evolving concepts of patient autonomy

■ Rise of the right-to-die movement

22 National Council on Disability

the 1960s, the development of technologies 

such as the mechanical ventilator, intravenous 

nutrition, intensive care unit (ICU) treatment, 

and hemodialysis 

have extended the 

lives of countless 

patients and changed 

the way physicians 

practice medicine.16

Accompanying these 

advancements, however, 

was a budding concern 

among physicians 

about whether it was medically and ethically 

appropriate to use invasive technologies on 

patients who may not benefit from it.17 The 

archetypal example is the use of cardiopulmonary 

resuscitation (CPR). CPR was developed in 

the late 1960s to treat individuals experiencing 

an arrest of cardiac or pulmonary function 

resulting from an acute trauma.18 Soon, CPR 

became a presumptive treatment for any 

patient experiencing cardiopulmonary arrest in 

hospitals across the country.19 Shortly thereafter, 

fueled by studies demonstrating poor longterm prognoses of individuals resuscitated 

with CPR, some physicians began to question 

whether the invasive technique should be used 

[R]eports revealed that some 

physicians were unilaterally placing 

do-not-resuscitate (DNR) orders 

or “slow code” orders ... 

patients with terminal conditions, 

often unbeknownst to the patient, 

their family, or their surrogate

on patients who did not explicitly consent to it 

and who, in their opinion, would receive little 

medical benefit.20 The CPR debate reached its 

peak in the early 1980s, when reports revealed 

that some physicians were unilaterally placing 

do-not-resuscitate (DNR) orders (i.e., no CPR) or 

“slow code” orders (i.e., delayed CPR, which is 

likely to fail) on patients with terminal conditions, 

often unbeknownst to the patient, their family, 

or their surrogate.21 In this context, the concept 

of medical futility emerged as a response to and 

purported defense for a physician to withhold 

potentially life-saving treatment from certain 

patients.

Parallel to the 

development of 

advanced medical 

technologies was a shift 

in the methodology 

for medical cost 

reimbursements.22 For 

much of US history, the 

most common healthcare 

payment structure was 

a fee-for-service model, wherein third-party 

payers provided cost-based reimbursements to 

cover the patient’s healthcare expenses.23 This 

reimbursement model incentivized doctors and 

hospitals to provide healthcare services and 

support the use of complex, often expensive, 

medical technologies.24 However, by the 1980s, 

public and private health insurance companies 

alike increasingly moved to prospective payment 

systems or managed care programs, which 

shifted a portion of the financial risk to doctors 

and hospitals.25 Soon, healthcare providers were 

faced with the prospect of absorbing healthcare 

expenditures that exceeded their prospective 

payments.26 This had a predictable impact 
on the provision of care: providers were now 

economically disincentivized to treat patients, 

especially when the treatment was expensive 

and the provider perceived it to provide a 

marginal benefit.27 At the same time, studies 

began to emerge analyzing the financial costs 

and benefits to hospitals in providing advanced 

medical technologies to patients covered by 

prospective payment plans.28 For example, one 

study showed that hospitals lost an average 

of $23,000 for each Medicare patient who 

required 72 hours of mechanical ventilation.29

Another study showed that one hospital lost 

nearly 1 million dollars 

in 1 year from providing 

nutritional support to 

Medicare patients.30

These developments—

changes in healthcare 

payment systems and 

the correlated increase 

in cost-benefit analyses 

of advanced medical 

technologies—fueled the 

medical futility debate.

Around the same 

time, the concept of the 

doctor–patient relationship was also evolving 

in public discourse. By the late 20th century, 

notions of patient autonomy, medical information 

transparency, and respect for patient treatment 

choices were increasingly replacing paternalistic 

practices in the healthcare setting.31 This shift 

in principles of medical decision making was 

evidenced, at the time, through a movement 

advancing a patient’s right to die.32 Starting in 

the 1970s and culminating in a decision by the 

US Supreme Court in 1990, a series of highly 

publicized right-to-die cases permeated the 

Soon, healthcare providers 

were faced with the prospect of 

absorbing healthcare expenditures 

that exceeded their prospective 

payments. This had a predictable

impact on the provision of care: 

providers were now economically 

disincentivized to treat patients, 

especially when the treatment was 

expensive 

public discourse.33 Two cases, concerning the 

lives of Karen Ann Quinlan and Nancy Cruzan, 

established that an individual or their surrogate 

has the right to refuse life-sustaining treatment.34

Principles of this movement shaped the early 

medical futility debate.

The Evolving Debate on the 

Definition and Utility of the 

Concept of Medical Futility

The early medical futility debate can be 

characterized by attempts to substantively 

define “medical futility” for clinical use. By the 

early 1990s, scholars 

and medical entities 

began to proffer various, 

purportedly objective 

definitions of futility.35

Most commonly cited 

among them were 

quantitative futility 

(treatment with less than 

a defined probability of 

succeeding),36 qualitative 

futility (treatment that 

would not result in an 

acceptable quality of 

life),37 and physiological futility (treatment that 

cannot achieve its physiological objective).38

All proposed definitions of medical futility have 

been criticized for relying on the value judgments 

of physicians.39 For example, quantitative futility 

relies on the medical community’s assumption 

that no patient or their surrogate would choose 

to continue a treatment with, for example, a less 

than 1 percent chance of success (an assumption 

that research has clearly disputed);40 qualitative 

futility depends on how the physician defines 

“quality of life” (a definition that may be laden 

Medical Futility and Disability Bias 23
with biases and assumptions); and physiological 

futility could rely on the physician’s judgment of 

a favorable physiological outcome. All of these 

definitions depend on subjective judgments 

about whether an individual’s life is worth living 

and prioritize the physician’s opinions on these 

matters over the patient’s or their surrogate’s.41

Attempts to define medical futility have 

also been criticized for their lack of pragmatic 

applications.42 While 

the definitions give 

rise to lively debate 

among academics, 

medical professionals, 

and disability activists, 

none of them have been 

effectively adapted into 

an operational policy 

that hospitals and physicians can utilize in a 

meaningful and consistent manner.43 As such, 

many question the usefulness of the pursuit.

Concurrent to the debates over the definition 

and utility of the concept of medical futility 

were a series of novel court cases challenging 

physicians’ legal authority to refuse to provide 

life-sustaining treatment.44 Litigation involving the 

lives of Helga Wanglie,45 Baby K,46 and Catherine 

Gilgunn47 gained national attention; however, 

it failed to produce consensus on the meaning 

and legality of futility decisions. For example, in 

In re Wanglie, the court sided with the family 

of an 87-year-old woman in a PVS following a 

cardiopulmonary arrest, who strongly objected 

to the removal of her mechanical ventilation, 

believing it would be contrary to Ms. Wanglie’s 

wishes and religious beliefs.48 In contrast, in 

Gilgunn v. Massachusetts General Hospital, 

the court sided with a hospital’s judgment to 

unilaterally impose a DNR order on Ms. Gilgunn, 

All of these definitions depend 

on subjective judgments about 

whether an individual’s life is worth 

living and prioritize the physician’s 

opinions on these matters over the 

patient’s or their surrogate’s

a 71-year-old woman in a comatose state 

following a neurological injury.49 The mixed 

judicial guidance only further fueled the confusion 

and debate over the meaning and proper role of 

medical futility decisions.

In response to the problems with defining 

“medical futility” and a lack of clear, consistent 

judicial guidance, hospitals and medical 

associations began to develop their own 

futility policies, which 

generally pivoted away 

from a universal futility 

definition and toward 

individualized, processbased approaches.50

Most notably, in 1999, 

the American Medical 

Association (AMA), 

recognizing that the concept of medical 

futility could not be “meaningfully defined,” 

AMA Procedural Guidelines for 

Making Futility Determinations

1. Deliberation of values;

2. Joint decision-making using outcome-based 

data and values;

3. Involvement of consultant(s) for discussions 

between physician and patient;

4. Involvement of an ethics committee;

5. Attempt to transfer the patient within the 

institution;

6. Attempt to transfer the patient to another 

institution; and, if impossible

7. Discontinuation of treatment

24 National Council on Disability
published procedural guidelines for making 

futility determinations on a case-by-case basis.51

The process included a succession of steps: 

(1) a deliberation of values; (2) joint decisionmaking using outcome-based data and values; 

(3) involvement of consultant(s) to facilitate 

discussions between the physician and 

patient and/or patient’s representative; 

(4) involvement of an ethics committee; 

(5) attempt to transfer the patient within the 

institution; (6) attempt to transfer the patient to 

another institution; and, 

if impossible, 

(7) discontinuation of the 

medical treatment.52

While the AMA 

Council on Ethical and 

Judicial Affairs describes 

their guidelines as a 

“fair process approach,”53 it has been criticized 

by some disability rights advocates.54 Not Dead 

Yet, a national, grassroots disability rights group 

that opposes legalization of assisted suicide 

and euthanasia, views the AMA’s guidelines 

as advocating a structured effort by medical 

professionals to persuade patients or their 

representatives to agree to withhold or withdraw 

treatment. In their view, if a provider believes 

a treatment is medically futile and a patient 

disagrees, then the AMA policy encourages 

the provider to move through a series of 

steps, involving additional and often affiliated 

professionals (e.g., consultants and ethics 

committees, both of which are often associated 

with the medical facility and thus may have a 

conflict of interest), in an attempt to influence 

the patient to discontinue treatment. This 

approach risks magnifying the existing unequal 

power differential in the typical provider–patient 

[F]utility processes often employ 

mediation and decision-making 

bodies that reflect institutional 

biases, lack diversity, and fail to 

provide due process protections

relationship and, thereby, undermining the 

fairness of the process and its outcome.55

In the years following the AMA’s publication 

of procedural guidelines, the use of processbased approaches and the use of internal 

ethics committees as a mediator and/or 

decision maker in the futility decision process 

proliferated in hospitals and state laws across 

the country.56 Moreover, the language used to 

describe medical futility began to change. Some 

medical organizations abandoned the term 

“futile” altogether, in 

favor of language such 

as “nonbeneficial,” 

“medically inappropriate,” 

“medically inadvisable,” 

or “not medically 

indicated.”57 Although the 

terminology is different, 

these classifications still allow healthcare 

providers to rely on subjective determinations 

of what is beneficial, advisable, or indicated—

which, in turn, can be influenced by misinformed 

perceptions of disability. This report utilizes the 

term “medical futility” because it is the original 

and most widely used term.

Today, mainstream opinion still favors 

process-based approaches to the concept of 

Different Phrases for Medical 

Futility

■ “nonbeneficial”

■ “medically inappropriate”

■ “medically inadvisable”

■ “not medically indicated”

Medical Futility and Disability Bias 25
medical futility. However, disability activists and 

disability rights organizations have increasingly 

questioned the lack of adequate protections 

in the standard procedures for determining 

medical futility. As detailed further in Chapter 2, 

futility processes often employ mediation and 

decision-making bodies that reflect institutional 

biases, lack diversity, and fail to provide due 

process protections. As a topic that is still 

fiercely debated today, the concept of medical 

futility will surely continue to evolve in the 

years to come.

26 National Council on Disability
Chapter 2: The Ethical, Medical, and Disability Rights 

Perspectives on Medical Futility Decisions Relating 

to People with Disabilities

The contemporary debate over medical 

futility decisions is complex and nuanced. 

From the medical perspective, the 

withholding or withdrawing of lifesaving or 

life-sustaining care is frequently considered the 

ethical, well-reasoned, and compassionate course 

of treatment. From a disability rights perspective, 

such decisions are often impacted by biases 

and misguided quality-of-life judgments. From a 

legal perspective, medical futility decisions can 

run afoul of federal and state laws if disability 

stereotypes have an impact on care or if the 

provider fails to ensure due process protections 

in the decision-making process. This chapter 

will review these multifaceted perspectives on 

medical futility decisions as they relate to people 

with disabilities, beginning with a case study that 

illustrates some of these conflicting perspectives.

Case Study: The Unethical 

and Discriminatory Treatment 

of Terrie Lincoln

Terrie Lincoln is a 39-year-old disability activist 

and proud mother who lives in Marietta, Ohio.58

Terrie holds degrees in social work and public 

administration. When Terrie was 19, she was in 

an automobile accident that severed her spinal 

cord and caused her to become quadriplegic. 

When she was in the hospital just following her 

accident, Terrie’s doctors repeatedly tried to 

influence her family to “pull the plug,” stating that 

Terrie was a “vegetable” and, even if she were to 

regain consciousness, would have no quality of 

life. “What kind of life will she have? She won’t. 

She won’t be able to dance, walk, work, have a 

social life, or be independent,” her doctors urged. 

At one point, one of Terrie’s physicians told her 

mother, who diligently remained by Terrie’s side 

throughout her hospital stay, that “any good 

mother would pull the plug instead of seeing 

their baby suffer.”

In the subsequent 5 months that Terrie was in 

the hospital, her medical providers neglected major 

aspects of her care, seeming to have already made 

up their minds that Terrie would not or should not 

survive. Terrie repeatedly experienced respiratory 

distress in the hospital; she had pneumonia and 

collapsed lungs, and she frequently aspirated. 

At one point, she coded. While her doctors did 

resuscitate her, they did not offer any suggestions 

on how to keep her lungs inflated and help her 

breathe going forward. In Terrie’s words, they were 

“killing [her] slowly.”

Despite her treatment in the hospital, Terrie 

did eventually regain consciousness. However, 

upon waking, she too was inundated with pleas 

from her doctors: “Are you sure this is something 

you can live with? Do you want to spend the rest 

of your life on a ventilator?” she was repeatedly 

asked. “We could inject you with morphine 

Medical Futility and Disability Bias 27
so you don’t feel anything [while dying],” they 

offered. Despite the clear lack of support from 

her medical team, Terrie persisted. Then, to the 

hospital’s surprise, Terrie’s health improved and 

she was taken off her ventilator. Eventually, Terrie 

returned home.

In the following years, Terrie gained greater 

sensation and usage of her neck and arms. She 

also began to learn more about disability rights, 

as she was suddenly thrust into a world with 

inaccessible housing, transportation, and public 

spaces. She was appalled with this reality, but 

also motivated to advocate for the civil rights of 

people with disabilities. Several years after her 

accident, she accepted a position as a Systems 

Advocate at a regional center for independent 

living in Rochester, New 

York. A few years after 

that, she gave birth to a 

daughter and relocated 

to Ohio. In 2014, Terrie 

founded and became 

President of Supporters of Disability Rights 

in the Mid-Ohio Valley (SDRMOV), a nonprofit 

organization that protects and promotes the 

human and civil rights of people with disabilities 

through advocacy, community awareness and 

education, and information and referral. Terrie 

is currently raising her daughter and serving as 

President of SDRMOV, where she shares her 

experiences and passion for disability rights 

with the world.

Breaking Down the Divide: The 

Disparate Viewpoints of the Medical 

and Disability Communities on 

Medical Futility

Terrie’s story is all too common within the 

disability community. Healthcare providers often 

Yes, her life was forever changed, 

but that did not mean that it was 

not worth living

harbor stereotypes and assumptions about 

the quality of life and capacities of people with 

disabilities. Many providers simply assume that 

an individual’s life is “not worth living” when they 

have a medically classified “severe” disability. 

However, sometimes, they could not be more 

wrong, as Terrie’s story demonstrates. Despite 

what many of Terrie’s healthcare providers 

assumed, her quality of life was not decimated 

because of her newly acquired disability. Yes, 

her life was forever changed, but that did not 

mean that it was not worth living. To the contrary, 

Terrie’s life with a disability has been incredibly 

meaningful. She has earned an education, 

founded and led a nonprofit organization, and 

created a family. The larger point, however, is 

that even if Terrie had 

not gone on to have a 

successful career and 

foster a beautiful family, 

her life is still inherently 

valuable. A person with 

a disability, like any other person, should not 

have to prove that they are “worthy” of their 

lives or will “contribute” to society in order to 

receive lifesaving or life-sustaining care. Their 

value should be assumed, and the medical futility 

decision process should be structured to ensure 

that subjective, often-biased value judgments do 

not result in the denial of health care treatment.

Unfortunately, however, procedural 

protections are fleeting in the critical care 

setting, and there is a lack of consensus on 

the appropriate role of futility decisions in the 

healthcare treatment of people with disabilities.59

As a general matter, the medical community 

supports the use of medical futility decisions to 

withhold or withdraw life-saving or life-sustaining 

care to patients with serious injuries or illnesses. 

28 National Council on Disability
As Professor Thaddeus Pope explained, many 

physicians genuinely believe that maintaining, 

for example, a ventilator on an individual with a 

catastrophic injury would amount to “torture.”60

In contrast, many disability activists and 

organizations vehemently oppose the concept 

of futility determinations, at least in the broad, 

value-laden sense with which it is often applied. 

From a rights perspective, such decisions are 

often injected with disability biases and fail to 

recognize the equal value of the life of a person 

with a disability.

Medical futility decisions are a prime concern 

for numerous disability rights organizations,61

in large part because the majority of such 

determinations involve a patient with a 

disability. Almost by 

definition, nearly every 

individual who is the 

subject of a futility 

determination has a 

disability within the 

meaning of the ADA. 

The ADA is a federal nondiscrimination statute 

that broadly defines “disability” to mean “a 

physical or mental impairment that substantially 

limits one or more major life activities;” 

“a record of such an impairment;” or “being 

regarded as having such an impairment.”62 This 

definition would encompass not only people 

with pre-existing disabilities such as autism, 

Down syndrome, or cerebral palsy, but also 

people with newly acquired spinal cord or 

brain injuries or those experiencing cardiac, 

respiratory, or other major organ impairments 

as a result of an acute illness or injury. Thus, 

disability lies at the core of nearly every 

futility determination, necessitating a critical 

examination of how biases can fatally impact 

Almost by definition, nearly every 

individual who is the subject of a 

futility determination has a disability 

within the meaning of the ADA

people with disabilities in the critical care 

context and how to bridge the divide between 

competing views on medical futility.

The fundamental tension between the medical 

and disability communities’ views on medical 

futility lies in their differing understandings of the 

quality of life that an individual with a disability 

experiences. Several studies have demonstrated 

that health care providers’ opinions about 

the quality of life of a person with a disability 

significantly differ from the actual experiences of 

those people.63 For example, one study found that 

only 17 percent of providers anticipated an average 

or better quality of life after a spinal cord injury 

(SCI) compared with 86 percent of the actual 

SCI comparison group.64 The same study found 

that only 18 percent of 

emergency care providers 

imagined that they would 

be glad to be alive after 

experiencing a spinal cord 

injury, in contrast to the 

92 percent of actual SCI 

survivors. Providers often perceive people with 

disabilities to have a low quality of life when, in 

reality, most report a high quality of life and level 

of happiness, especially when they have access 

to the healthcare services and supports that 

they need to equally participate in and contribute 

to their communities.65 In another study which 

surveyed healthcare providers without giving 

them any further information about the patient’s 

circumstances, 72 percent of physicians would 

deem mechanical ventilation “futile” for a “30-yearold quadriplegic patient with malignant melanoma 

who becomes unconscious.”66 Yet another study 

found that 71 percent of pediatric residents 

question whether aggressive treatment should be 

used on children with severe disabilities.67

Medical Futility and Disability Bias 29
The medical community’s inaccurate 

perceptions of the quality of life of a person 

with a disability can be traced back to their 

general misunderstanding of the meaning of 

disability and the correlated conception of 

how an individual’s 

disability should be 

managed. The disability 

rights community has 

identified two primary 

models of disability: 

the medical model 

and the social model. 

Most of the medical establishment still holds a 

deficit-oriented medical framework of disability 

(medical model) instead of sociopolitical 

models of disability where disability can be 

neutral, an identity, the basis for a community, 

or ever-evolving depending on barriers and 

supports in the environment (social model). 

Notwithstanding the names of the models, 

medical providers can treat patients from a 

sociopolitical orientation, respecting patients’ 

lives and choices and not assuming that their 

disability status is an inherently negative 

problem. Moreover, 

despite the binary 

classification, the 

models are not 

mutually exclusive 

and, particularly in the 

context of health care, 

they can operate in 

relation to each other, 

with physicians’ utilizing one model or another, 

or a combination of the models, depending on 

the context.

Healthcare providers can over rely on the 

medical model when treating patients with 

[A]nother study found that 71 percent 

of pediatric residents question 

whether aggressive treatment should 

be used on children with severe 

disabilities

“Physicians predominately view 

disability as connected to disease, 

and diseases are to be cured or 

avoided; on the whole, providers 

fail to see disability as a ‘natural 

part of life’s experience.’

disabilities.68 Nachama Wilker, the Deputy 

Executive Director for Training and Technical 

Assistance at the National Disability Rights 

Network (NDRN), explained: “Physicians 

predominately view disability as connected to 

disease, and diseases are 

to be cured or avoided; 

on the whole, providers 

fail to see disability as 

a ‘natural part of life’s 

experience.’”69 Whether 

due to the historical, 

purely clinical lens 

through which health care has traditionally been 

approached (as opposed to a whole person 

model, which also considers social determinants 

of health) or the lack of education and training 

in disability competency,70 healthcare providers 

largely depend on medical model thinking when 

treating patients, which fosters negative attitudes 

toward and biases about people with disabilities.

Indeed, recent studies have indicated that 

attitudinal biases about patients with disabilities 

remain pervasive among physicians, nurses, and 

students in the health professions.71 Specifically, 

negative assumptions 

about the cognitive 

abilities, independence, 

interest in maintaining 

current function, and 

quality of life of people 

with disabilities are 

common and continue 

to impact care.72

Disability rights advocates and organizations 

have criticized the medical community’s overuse 

of the medical model, arguing that it places a 

misguided focus on “fixing” or “normalizing” 

an individual, when that goal is often not helpful 

30 National Council on Disability
or desirable for people with disabilities.73 To be 

clear, the medical model has a role in health 

care—as Dr. Clarissa Kripke, the Director of the 

Office of Developmental Primary Care and a 

Clinical Professor at the University of California, 

San Francisco, explained: If an individual falls 

and breaks their leg, then we would expect the 

provider to “fix” the leg through appropriate 

medical treatment so that the individual can 

walk again.74 The broken leg was a disability and, 

in this context, it was appropriate to “fix” it.75

Likewise, if an individual experiences chronic 

pain associated with their disability and desires 

habilitative or rehabilitative treatment, pain 

medications, or other 

appropriate healthcare 

services, then the 

medical model could 

function to serve their 

needs and reduce their 

pain. Depending on the 

context, the medical 

model can be applied 

appropriately and with 

respect for the individual 

with a disability.

Where the medical model can break down, 

however, is when the physician, viewing the 

disability only as a medical condition, fails to 

properly value the individual’s life or accurately 

diagnose the acute reason for their medical 

visit. For example, people with disabilities have 

been—and many continue to be—institutionalized 

because of medical model thinking and lack of 

adequate community supports.76 Others have 

been deemed “unfit to reproduce”—seen only 

as a negative health outcome that should be 

prevented in future generations—and forcibly 

sterilized under state eugenics laws, some of 

[T]hey simply do not know how to 

apply diagnostic standards to people 

who physically or mentally deviate 

from the statistical norm, or they 

fail to differentiate the conditions 

associated with the individual’s 

disability from the acute symptoms 

behind their medical visit

which were not taken off the books until the 

late 20th century.77 Even the US Supreme Court 

has, in a decision that is still binding precedent 

today, explicitly endorsed the forced sterilization 

of adults and children with disabilities.78 In Buck 

v. Bell, the Court upheld the constitutionality of 

a Virginia law that authorized the sterilization of 

people deemed “unfit to reproduce.”79 In the 

decision, Justice Holmes infamously wrote: 

“Three generations of imbeciles are enough.”80

Today, the negative impact of misplaced 

medical model thinking and disability bias on 

the provision of health care is still pervasive. 

Healthcare providers, predominantly viewing a 

person’s disability as an 

undesirable “medical 

condition,” often place 

too heavy a clinical focus 

on the disability, such 

that it “overshadows” 

the acute reason for 

their visit.81 Moreover, 

few physicians have the 

expertise and training 

necessary to accurately 

diagnose and treat people with disabilities; 

often, they simply do not know how to apply 

diagnostic standards to people who physically 

or mentally deviate from the statistical norm, 

or they fail to differentiate the conditions 

associated with the individual’s disability from 

the acute symptoms behind their medical visit.82

Physical and programmatic access barriers are 

also widespread among healthcare providers. 

Providers’ offices, diagnostic equipment, 

weight scales, and tables are largely physically 

inaccessible, and communication breakdowns 

between providers and patients with hearing, 

intellectual, or developmental disabilities are 

Medical Futility and Disability Bias 31
common.83 These problems, among others, 

contribute to wide disparities in health outcomes 

and access to care for people with disabilities.84

In the context of medical futility decisions, 

disability bias and quality-of-life misconceptions 

are particularly 

dangerous. Dr. Kripke 

explained that she 

observes negative 

assumptions about 

disability impact 

futility determinations 

“all the time.”85 In 

her practice, she 

typically treats patients 

with developmental 

disabilities, whose lives she observes to be 

frequently undervalued by providers.86 For 

example, she has encountered a number of 

instances where hospital or emergency room 

physicians prematurely attempted to force 

palliative or hospice care on patients with a 

disability with treatable diseases—or they 

delayed care in medical emergencies to first 

determine the patient’s code status, presuming 

that a primary care physician would have (or 

should have) encouraged a DNR order for 

patients with certain disabilities.87 These kinds 

of occurrences are disturbingly common, she 

states.88

Several studies have 

confirmed the role that 

subjective judgments 

play in futility decisions.89

For example, one study observed that “most 

often when futility arguments were invoked [in 

interviews of physicians], they were used to 

support evaluative judgments based on quality 

of life considerations, only rarely to designate 

[S]he has encountered a number 

of instances where hospital or 

emergency room physicians 

prematurely attempted to force 

palliative or hospice care on patients 

with a disability with treatable 

diseases—or they delayed care 

in medical emergencies 

“Indeed, throughout the transcripts, 

physicians sought to frame value 

judgments as medical decisions.

treatments that were medically inefficacious. 

Indeed, throughout the transcripts, physicians 

sought to frame value judgments as medical 

decisions.”90 Moreover, in its influential report 

Devaluing People with Disabilities: Medical 

Procedures That Violate 

Civil Rights, NDRN 

documented numerous 

stories of people who 

were subjected to futility 

discrimination because 

of negative assumptions 

about their life with a 

disability.91 In one case, 

a 78-year-old man with 

intellectual and other 

disabilities had colon cancer and needed surgery 

to survive; however, his surgeon expressed that 

“there was no reason to prolong [his] life due 

to his significant disabilities.”92 Thankfully, the 

Rhode Island Disability Law Center stepped in 

and was able to persuade the surgeon that the 

man still had a good quality of life and the surgery 

should be performed.93 The man enjoyed his life 

for another 2 years.94 In another case, a 20-yearold man with physical and intellectual disabilities 

was denied treatment for a serious wound and 

bone infection, his physicians asserting that he 

was not a candidate for IV antibiotics, withholding 

supplemental fluids 

and nutrition, and 

issuing a DNR order.95

Documentation indicated 

that part of this decision 

was based on his disabilities.96 Despite the 

gross neglect by the hospital, the young man 

survived and was discharged 2 months later, 

weighing only 89 pounds.97 He was far from well, 

though.98 The young man required two additional 

32 National Council on Disability
hospitalizations. At the second hospital, the 

doctors stabilized his conditions by providing 

IV antibiotics and aggressive wound treatment for 

his ulcer and bone infection.99 He was discharged 

back into his community shortly thereafter.100

As these examples demonstrate, devaluing 

the lives of people with disabilities can have 

life-threatening or life-ending consequences in 

the context of medical futility. In both of these 

cases, the physicians who denied treatment 

relied on their subjective assumptions about 

the individuals’ quality of life—conceptualizing 

the patient’s disability to be a negative health 

outcome, which, when compounded with the 

acute clinical reason for their hospital visits (colon 

cancer and a wound, 

respectively), allowed the 

physician to assert that 

life-saving treatment was 

not medically indicated. 

If, in contrast, the 

physicians had viewed 

the life of the individual 

with a disability as 

inherently valuable and understood the patient’s 

right to equally effective health care, unimpacted 

by biases and stereotypes, they may have come 

to a very different medical recommendation.

Another illustration is in the context of brain 

injury and the premature diagnosis of PVS. 

Consider, for example, the case involving the 

removal of life-sustaining treatment from 11-yearold Haleigh Poutre.101 Haleigh was severely 

abused by family members and sustained a brain 

injury.102 Only 8 days after she was admitted to 

the hospital, her physicians asserted she was 

“virtually brain dead,” and the state, which had 

taken custody of Haleigh, sought to remove 

her life support.103 A judge granted the request, 

When physicians diagnose PVS or 

“brain death,” sometimes they rush 

to make this determination and do 

not properly follow the AAN wellestablished and widely respected 

guidelines

stating that Haleigh should “pass away with 

dignity.”104 The very next day, Haleigh regained 

consciousness.105 Subsequently, she was 

transferred to a rehabilitation hospital and later 

discharged and adopted by a loving family.106

Haleigh’s near-fatal experience illustrates 

what some disability advocates term a “rush 

to judgment.” When physicians diagnose PVS 

or “brain death,” sometimes they rush to make 

this determination and do not properly follow 

the AAN well-established and widely respected 

guidelines.107 In too many cases, people who 

have sustained severe brain injuries are not 

given adequate time to heal and recover before 

their medical team moves to withdraw lifesustaining treatment. 

Indeed, one retrospective 

study found up to 

43 percent of patients 

are misdiagnosed with 

PVS.108 Other studies 

have increasingly 

found that late-stage 

recovery from disorders 

of consciousness is more common than once 

understood in the medical community.109 One 

physician even posited: “Reliable information 

about the character of an injured person’s future 

may be especially hard to find at those times 

during the course of treatment when there may 

be a ‘convenient’ window of opportunity to 

stop interventions and allow a patient to die.”110

Considering the irreversible consequences of 

withdrawing life-sustaining treatment, such 

determinations should not be made in haste. 

People experiencing unconsciousness should 

be given the proper time and support that they 

need to recover. Only if and when the patient 

is properly determined to be experiencing brain 

Medical Futility and Disability Bias 33
death, as detailed in the AAN’s guidelines, should 

a futility judgment be contemplated. Individuals 

should not be robbed of their chance to recover.

As these cases demonstrate, understanding 

the value of every individual’s life, not rushing 

to futility judgments, and eliminating explicit 

and implicit biases about disability is essential 

to ensuring equity in medical treatment 

decisions. Moreover, at a time when stereotypes 

and assumptions regarding disability remain 

pervasive in the medical community, it is 

essential that medical futility is only defined 

and applied narrowly, that there are procedural 

protections in the decision-making process, and 

that there are affordable and accessible means 

of legal appeal.

Defining Medical 

Futility and Its 

Criteria to Avoid 

Disability Bias

For decades, medical 

professionals and 

scholars have attempted 

to craft a workable clinical definition and 

criteria by which to evaluate medical futility. 

Numerous conceptions have been proffered, 

ranging from the treatment will not produce the 

desired benefit, to the treatment is unlikely to 

produce the desired benefit, to the treatment 

will not result in a desired quality of life.

111 Each 

formulation has its own set of criticisms, some 

being more fraught with the danger of injecting 

disability bias than others.

In its purest sense, medical futility means that 

a treatment will not produce the desired medical 

benefit. In other words, there is no chance that 

the treatment will achieve the goals for which 

it was intended.112 For example, a treatment of 

Only when the concept is limited 

to medically certain circumstances 

can we truly ensure that it is free 

of the physician’s subjective value 

judgments

antibiotics would be considered futile under this 

approach if the patient had a viral infection.113

Because it has been widely established that 

antibiotics do not have an effect on viruses, it 

is virtually certain that this treatment will not 

achieve the desired benefit of curing or reducing 

the patient’s viral infection.114 Proponents of 

this approach, which is sometimes referred 

to as “absolute futility”115 or “physiologically 

impossible futility,”116 argue that it is the concept 

of medical futility that comes the closest to an 

objective exercise of medical judgment.117 Only 

when the concept is limited to medically certain 

circumstances can we truly ensure that it is free 

of the physician’s subjective value judgments.118

However, critics of absolute futility argue that 

it is too narrow to be 

useful. Rarely does any 

treatment offer no benefit 

and there needs to be 

a mechanism to refuse 

care when the treatment 

would offer some shortterm benefit, but would 

ultimately not change the patient’s prognosis, 

critics argue.119

Broader, more value-laden definitions of 

medical futility have also been suggested. One of 

the most widely cited of the proposals was that 

of bioethics academics Lawrence Schneiderman 

and Nancy Jecker, who framed the concept 

of medical futility as having two components: 

quantitative and qualitative.120 Quantitative futility 

attempts to evaluate the chance of success of 

the treatment, considering how likely it is to 

produce the desired benefit.121 Of course, this 

concept then begs the questions: How likely 

does success need to be? And how will this 

probability be determined?122 Schneiderman and 

34 National Council on Disability
Jecker draw a seemingly arbitrary line, asking: In 

the past 100 cases, was the treatment useless 

for people with similar clinical indications?123

Others, building off this proposal, have suggested 

alternative quantifications, suggesting that a 

treatment is futile if it has, for example, less than 

a 1, 2, or 5 percent chance of success.124 Critics 

of quantitative futility—or any concept of futility 

that requires less that near medical certainty, for 

that matter—argue that quantitative futility leaves 

too much room for subjectivity and variability 

in application.125 Necessarily, the healthcare 

provider must determine the probability that the 

treatment will succeed for a given patient and 

this evaluation leaves room for providers to rely 

on subjective factors.126 It also assumes that the 

patient would not want 

to pursue a treatment 

that has a low probability 

of succeeding—an 

assumption that may 

align with the physician’s 

values and opinions on appropriate medical 

decision making, but may not align with the 

patient’s values and what they would chose for 

themselves. As Professor Pope explained, this 

broad conception of futility allows the clinician, 

given their own individual training, to decide 

whether the chance that the treatment is going 

to work is so low that it is simply “not worth 

trying.”127 When a clinician starts considering 

what is “worthwhile,” it allows them to “smuggle 

in all sort of biases,” he explained.128 Moreover, 

“what one clinician thinks is not worthwhile is 

not necessarily the same as another,” resulting in 

great variability in decision making.129

A qualitative approach to medical futility 

focuses not only on whether a treatment will 

provide a specific benefit, but also on whether 

When a clinician starts considering 

what is “worthwhile,” it allows them 

to “smuggle in all sort of biases” 

it will result in a desired quality of life.130

Under this conception of futility, there is an 

explicit evaluation of whether the patient could 

meaningfully appreciate the benefit of the 

treatment.131 Schneiderman and Jecker provided 

an example of a woman with advanced dementia, 

who they assert that, because of her dementia, 

cannot achieve a qualitative benefit from the 

insertion of a G-tube.132 This example, however, 

demonstrates the clear danger of relying on 

a qualitative definition of futility: by design, it 

incorporates judgments about quality of life and 

allows for bigotry. In this example, the physicians 

are imposing their own subjective opinion that 

a life is not worth living—or, at least, is not 

worth expending medical resources on—if an 

individual has dementia. 

This conception of 

medical futility is thus 

ripe for abuse. Negative 

assumptions and biases 

about the quality of life 

and inherent value of people with disabilities 

can easily make their way into futility decisions 

under this model. If a provider believes that an 

individual’s physical or mental disability decreases 

their quality of life, then this judgment, by 

definition, will be taken into account in the futility 

decision. Considering how pervasive disability 

biases are within the medical profession,133 it 

is easy to see how a deadly form of disability 

discrimination can result under this model.

Because of these dangers, medical futility 

should only be defined in its limited, absolute 

sense. This narrow conception of futility is 

the closest to achieving objective, value-free 

decision making.134 All other definitions of 

futility almost invariably incorporate the value 

judgments of physicians.135 For example, 

Medical Futility and Disability Bias 35
under quantitative and qualitative approaches 

to futility, the provider is always having to 

make some judgment—assessing whether 

the treatment is “worth it,” when either 

considering the chance of success or the 

resulting overall quality of life, respectively—

and that flexibility permits inappropriate and 

discriminatory considerations. It allows 

providers or hospitals to apply their own 

opinions on whether a life is “worth living” to 

medical decision making, and this is wholly 

unacceptable. As a matter of principle, only the 

patient’s value judgments regarding quality of 

life should matter in futility decisions. Thus, to 

prevent the possibility that a provider’s potential 

biases will guide decisions, a narrow definition 

of futility that only 

considers whether, as a 

matter of scientific 

certainty, a treatment 

will not produce the 

desired benefit, 

is necessary.

However, even a narrow definition of medical 

futility can leave some space for subjectivity, 

which is why adequate safeguards are also 

essential. For example, the level of generality 

through which the desired benefit of treatment is 

defined can impact the outcome. In other words, 

one could ask what is there “no chance” of 

achieving through the treatment: the immediate, 

short-term objective? Long-term survival? Quality 

of life? The broader the level of generality of 

the desired outcome, the greater the potential 

that subjective quality-of-life judgments could be 

relied on. To protect against this, the default level 

of generality should be the immediate, shortterm objective, and it should only be broadened 

if and when the patient or their duly acting 

As a matter of principle, only the 

patient’s value judgments regarding 

quality of life should matter in 

futility decisions

surrogate decides to do so; it should not be left 

up to the healthcare provider or the hospital 

to unilaterally decide that the desired benefit 

of a treatment is long-term survival or their 

conception of a “high quality of life.”

Moreover, there is also a danger that 

providers, in practice, will rely on subjective 

criteria in determining that a treatment has 

“no chance” of succeeding.136 In other words, 

a standard of futility that requires 0 percent 

chance of success would be deemed virtually 

meaningless if there were not also standards 

defining the types of criteria that can be relied on 

in making this determination. A provider cannot, 

for example, only rely on their own intuition 

or experiences with their own past patients 

to deem a treatment 

futile. Instead, they 

should rely on objective, 

evidence-based criteria, 

such as peer-reviewed 

medical literature. 

Additionally, as is 

discussed in Chapter 3, there should be policies 

and procedures in place to ensure that the 

procedural rights of patients are effectuated in 

the decision-making process and that a medically 

justified and bias-free decision is reached.

Who Decides and How? Shaping 

Medical Futility Protocols to 

Effectuate the Procedural Rights 

of Patients with Disabilities

While the substantive limits of the conception of 

medical futility is a key definitional question, the 

heart of the futility debate really lies in who should 

make a futility determination and how, in coming 

to this decision, the procedural rights of patients 

are effectuated. The “proper decision maker” 

36 National Council on Disability
question, like the definition of medical futility, has 

been extensively examined and debated among 

bioethical and medical scholars. Several “decision 

makers” have been suggested: the provider(s), 

the patient, the patient’s surrogate or family, an 

ethics committee, an independent board, or a 

court of law. However, while much of the focus 

has been on the “who,” equally important is the 

“how.” A decision-making body should be diverse 

and unconflicted, and the decision process should 

be structured with adequate safeguards.

Physicians

Traditionally, physicians have been the primary 

decision makers regarding a patient’s healthcare 

treatment. Before the 

late 20th century, few 

patients and families 

questioned the medical 

orders of physicians, 

even at the end of life.137

Physicians were widely 

regarded as the parties 

with the best perspective 

on medical decisions, by virtue of their 

intelligence, knowledge, and extensive training.138

However, with the emergence of advanced 

technologies and a broader societal movement 

toward patient autonomy, the assumption that 

physicians should always dictate an individual’s 

course of treatment began to wane.139 Today, the 

view that physicians should solely make medical 

futility decisions is still held by many bioethical 

scholars and medical community members.140

However, others question the appropriateness 

of allowing a physician to unilaterally make a 

futility decision, asserting that it is a paternalistic 

viewpoint that allows consideration and reliance 

on the physician’s value judgments and biases.141

With a study finding that 14 percent of physicians 

nationwide have withheld or withdrawn health 

care they deemed futile without informing 

patient’s families, and 80 percent have withdrawn 

care over the family’s objections,142 the cause 

for alarm over providers unilaterally determining 

medical futility is salient.

From a disability perspective, there are three 

primary problems with allowing a physician 

to be a sole futility decision maker. First, as 

previously discussed, healthcare providers often 

harbor stereotypes and misguided quality-oflife judgments about patients with disabilities. 

These biases and assumptions can and do make 

their way into medical decisions and, when 

those decisions involve 

medical futility, they can 

have fatal results for 

people with disabilities. 

Second, physicians and 

hospitals have financial 

conflicts of interest. The 

US healthcare system 

is dominated by 

prospective payment systems and managed care 

programs, which economically incentivize the 

underutilization of health care, especially when 

the treatment is expensive (as most advanced 

life-sustaining care is) and the provider perceives 

the treatment as providing a marginal benefit to 

the patient (a perception that may rely on 

biases).143 This healthcare structure, put simply, 

encourages the rationing of health care, and 

people with disabilities are often the first to be 

subjected to cuts in healthcare expenditures. 

Finally, as a matter of principle, the patient’s

values, beliefs, and preferences are the only ones 

that should matter in healthcare treatment. By 

allowing a physician to unilaterally decide that a 

By allowing a physician to 

unilaterally decide that a treatment is 

medically futile, it is the physician’s 

subjective beliefs that are injected 

into that decision. That is ethically

unacceptable

Medical Futility and Disability Bias 37
treatment is medically futile, it is the physician’s 

subjective beliefs that are injected into that 

decision. That is ethically unacceptable.

Patients, Surrogates, and 

Family Members

In an ideal world, the patient—free of outside 

influence and with an accurate perception of 

life with a disability and access to sufficient 

healthcare services and supports—should have 

the right to control their own medical treatment, 

including a determination to withhold or withdraw 

life-saving or life-sustaining care on the grounds of 

medical futility. However, as is frequently a reality 

in these cases, the patient may be incapacitated 

or lack the mental capacity to make critical 

healthcare decisions 

without assistance. Thus, 

an alternative decisionmaking mechanism 

should also be in 

place to represent the 

patient’s perspective or 

best interests.

In the absence of an advance medical 

directive, an adult patient’s surrogate or family 

members have been proposed as medical 

futility decision makers.144 Surrogates are 

representatives identified, or appointed by a 

court, to make medical decisions for or with the 

individual.145 This surrogate can be an individual 

previously identified by the patient through a legal 

instrument, designated by statute (usually their 

next of kin), or a representative assigned by a 

court.146 Unfortunately, while in theory, surrogates 

should accurately represent the patient’s values 

and act in their best interest, this is not always 

the reality. As an example, consider the case of 

a 51-year-old woman with a physical disability 

[T]here should be careful scrutiny 

of the surrogate’s potential conflicts 

to ensure that they are acting in a 

manner consistent with the patient’s 

wishes and best interests

in Illinois who was bleeding internally and 

needed treatment to survive.147 Her surrogate, 

who had not seen the woman in years, called 

the nursing home where the woman resided 

and instructed the caregivers not to follow the 

doctor’s treatment recommendation, wanting 

to allow the woman to die.148 Equip for Equality, 

the state’s federally mandated protection and 

advocacy organization, stepped in and assisted 

the nursing home with appointing an alternative 

surrogate, allowing the woman to receive the 

life-saving care she needed.149 While the motive 

behind this surrogate’s actions were unclear, 

surrogates can have conflicting interests with the 

patient. For example, the surrogate or deciding 

family member may have financial interests in 

the futility decision or a 

desire to avoid the time 

and expense associated 

with caregiving. They 

may also have their 

own biases about 

disability, acting on 

the same quality-oflife assumptions that some physicians hold. 

Because of the potential for conflicting interests, 

before critical healthcare decisions are made on 

behalf of an incapacitated patient, there should 

be careful scrutiny of the surrogate’s potential 

conflicts to ensure that they are acting in a 

manner consistent with the patient’s wishes and 

best interests.150

Ethics Committees

Increasingly, providers and hospitals have relied 

on ethics committees to render medical futility 

decisions.151 Ethics committees are forums, 

typically composed of medical professionals, 

social workers, and other hospital staff, that serve 

38 National Council on Disability
as mediators and sometimes decision makers 

of bioethical disputes, including those involving 

medical futility.152 Hospital ethics services are 

incredibly common; by one measure, 81 percent 

of general hospitals and 100 percent of hospitals 

with 400 or more beds had some form of ethics 

consultation services.153 In some states, such 

as Texas, ethics committees actually have legal 

authority to render a binding decision on a 

disagreement between the patient’s provider 

and surrogate.154 Such a decision then gives the 

provider civil and criminal immunity, shielding 

them from any potential future litigation regarding 

the matter.155 While ethics committees are largely 

favored by the medical community and bioethical 

scholars, they are rife with conflicting interests 

and disability biases.

Ethics committees are not neutral decisionmaking bodies; they are typically internal hospital 

forums composed of professionals who are 

employed or contracted by the hospital.156

This mechanism is a far cry from an unbiased, 

independent decision-making body. Conflicts 

abound: the committee members have both 

professional and financial incentives to side with 

the hospital’s position, by virtue of their working 

relationship; the members, largely being health 

providers themselves, may give added weight, 

even unconsciously, to the opinions of the 

treating provider over the patient’s surrogate; the 

members may have pre-existing relationships 

with the treating provider, causing overreliance on 

their opinion; or the members may fear retaliation 

from the hospital or treating provider should 

they disagree.157

Additionally, ethics committees, by virtue 

of being an internal mechanism of and funded 

by the hospital, are financially incentivized to 

minimize hospital expenditures, especially 

those that are very costly, such as advanced 

life-sustaining technologies. The case of 

Brianne Rideout, a 3-year-old girl with a brain 

tumor, illustrates the influence that prospective 

costs can have on an ethics committee’s 

futility decision.158 Brianne had a brain stem 

glioblastoma and relied on a ventilator for 

respiratory function.159 One day, Brianne’s health 

insurer informed the hospital that her coverage 

would soon be exhausted, meaning that the 

hospital would have to absorb any further 

healthcare expenditures.160 The very next day, 

her physician appealed to the hospital’s ethics 

committee for a medical futility determination 

and imposition of a DNR order.161 Despite her 

parents’ vocal opposition to the withdrawal of 

life-sustaining care, the committee ordered the 

removal of her ventilator and Brianne’s provider 

quickly executed that order, removing her life 

support while her mother temporarily left the 

room to speak with her lawyer.162 As Brianne’s 

case demonstrates, the financial conflict created 

by the nature of the healthcare reimbursement 

system makes it ethically inappropriate for 

ethics committees to be operated and staffed 

by employees of the hospital.

Further, the typical composition of an ethics 

committees is void of diversity and fails to 

represent the rights of patients with disabilities. 

It is exceedingly rare for a disability advocate, 

or even a person with a disability, to be on 

the committee.163 The one known committee 

to have a disability representative is that of 

Seattle Children’s Hospital and Regional Medical 

Center, after it was mandated to do so following 

the infamous Ashley X growth attenuation 

case.164 However, such representation is 

rare.165 As goes an adage of the disability rights 

movement: “Nothing About Us Without Us.”166

Medical Futility and Disability Bias 39
Ethics committees should be representative 

of the communities within which they lie and 

the groups that they disparately affect. The 

presence of disability is common among patients 

subject to futility decisions and, considering the 

pervasiveness of medical model thinking and 

the high stakes, it is essential that there be a 

disability advocate at the table.

Finally, ethics committees, as currently 

structured, have insufficient procedural 

protections of the patient’s rights. As Nachama 

Wilker explained, hospital ethics committees 

rarely have a system of due process in place to 

ensure proper consideration of the patient’s 

perspective and weeding out of any potential 

biases.167 Instead, 

hospitals are generally 

able to set their own 

rules for their 

committees (unless a 

state law dictates 

otherwise) and such 

rules are highly variable 

from hospital to hospital. This lack of continuity 

and potential for low procedural standards is 

simply unacceptable when considering the 

magnitude of decision making these committees 

are charged with.

Courts

As the paradigm of neutrality, independence, and 

due process in the United States, disagreements 

about medical futility may also go to a court of 

law for the rendering of a decision. The clear 

advantage of a court is that it is a neutral decision 

maker, with both sides having the opportunity 

to present their case and an independent judge 

making a binding (yet appealable) decision. 

Further, a court offers greater procedural 

[H]ospital ethics committees rarely 

have a system of due process in 

place to ensure proper consideration 

of the patient’s perspective and 

weeding out of any potential biases

protections of the patient’s interests and is not 

fraught with the same conflicts of interest that 

pervade ethics committees. In many ways, a 

court of law sounds like the optimal forum for 

futility disputes; however, there are practical 

drawbacks that prevent it from functioning as an 

ideal frontline futility arbitrator.

Put simply, courts are expensive. Access 

to a court is rarely free of cost; there is no 

constitutional right to a civil attorney and, 

while a plaintiff could theoretically proceed 

pro se and obtain indigent fee waivers, this 

approach is not to their advantage. Any pro 

se litigant would be against a team of the 

hospital’s experienced attorneys, placing them 

at a clear disadvantage 

in navigating and 

succeeding in the legal 

proceeding. Moreover, 

the patients or surrogates 

who would be opposing 

a medical futility 

decision rarely have the 

funds available to hire an attorney. Many have a 

disability, are low-income, and reliant on public 

healthcare programs. Thus, in most cases, the 

only real option for plaintiffs is to obtain pro 

bono legal representation from a law firm, public 

interest organization, or their state’s federally 

mandated protection and advocacy organization. 

However, firms rarely choose to take on these 

cases, as there is little potential for economic 

damages,168 and nonprofit legal organizations lack 

the resources and capacity to take on every case. 

Due to these barriers to the US legal system, 

which inhibit justice in many contexts, a court is 

not a viable option for many medical futility cases.

Moreover, even if a medical futility dispute 

were to make it to court, legal proceedings 

40 National Council on Disability
take an exceedingly long time—time that many 

patients simply do not have. Plaintiffs could face 

years of litigation before the case is resolved. 

This makes a court of law a less than optimal 

forum for futility decision making.

A Better Process: Independent 

Mediation and Decision-Making Boards, 

with Judicial Appeal Available

To address all of these issues, independent boards 

should be established to mediate disputes on 

medical futility involving an incompetent person 

and, if necessary, render a decision that would be 

appealable to a court of law. Currently, in states 

such as New York and Iowa, there are staterun substitute medical 

decision-making boards, 

which make medical 

decisions for patients 

who are incompetent 

and do not have a 

surrogate.169 The scope of 

these boards, however, 

is often specific to 

state facilities or do not 

address decisions involving the withholding or 

withdrawal of life-sustaining treatment.170 These 

models should be expanded to medical futility 

decisions, provided they are also accompanied 

by a diversifying of the board members and due 

process protections.

An independent mediation and decisionmaking board would serve to avoid potential 

conflicts of interest in ethics committees, while 

also circumventing the cost and time that prove 

to be barriers to the judicial system.171 However, 

the composition and procedures of such boards 

would need to be carefully considered. Board 

members should include medical professionals 

An independent mediation and 

decision-making board would 

serve to avoid potential conflicts 

of interest in ethics committees, 

while also circumventing the cost 

and time that prove to be barriers 

to the judicial system

who are not affiliated in any way with the health 

providers and facilities involved in the futility 

dispute; social workers; disability advocates; and 

members with a diversity of characteristics (such 

as gender, race, ethnicity, disability, religion, etc.) 

in relation to the local community. Members 

could be appointed by the state agency 

that has oversight of medical providers and 

hospitals, in consultation with community-based 

organizations. Disability advocates may come 

from or be identified by the state’s protection 

and advocacy organization or nonprofit disability 

rights legal organizations.

Independent boards would need sufficient 

procedural protections in place to ensure 

that the patient’s 

due process rights 

are effectuated. For 

example, the board’s 

procedures could be 

structured as follows: 

The board would 

provide notice, in an 

accessible format, to 

the patient and/or their 

authorized representative. Then, after at least 

72 hours and on a mutually agreeable date and 

time, the board would conduct a mediation 

among parties, discerning whether a mutually 

agreeable solution can be reached. During 

these discussions, the board would ensure 

that no party is inappropriately influenced 

or misled with inaccurate statements about 

disability or prospective quality of life. If the 

disagreement is intractable, then the board 

would conduct an evidentiary hearing. At the 

hearing, both parties to the dispute would have 

the opportunity to fully present their case and 

any relevant evidence. Evidence would not 

Medical Futility and Disability Bias 41
include stereotypical quality-of-life judgments, 

and testimony from healthcare providers would 

be limited to technical medical information 

and analysis. If the decision is in favor of a 

futility determination, then the patient or their 

duly acting legal representative, surrogate, or 

family member would be notified of their right 

to appeal the decision to a court of law and 

provided with contact information for the state’s 

federally mandated protection and advocacy 

organization. Through procedures such as 

these, the rights of all patients, including those 

with disabilities, could be better effectuated in 

the medical futility decision process.

42 National Council on Disability
Chapter 3: The Disclosure of Hospital Futility Policies

Hospitals are rarely transparent with their 

medical futility policies. For decades, 

guidelines regarding end-of-life decision 

making and the withholding or withdrawing of 

lifesaving or life-sustaining medical treatment 

have largely been kept from the public. The 

secrecy surrounding medical futility policies 

and decision making has bred skepticism and 

fear among many members of the disability 

community, who rightly want to examine, 

evaluate, and engage in discussion on how to 

improve futility procedures to protect the rights 

of all patients.

Seldom do 

hospitals make futility 

policies available to 

the general public. At 

least 22 hospitals have 

published their futility 

policies in the public domain.172 However, disclosure 

is not widespread.173 At first consideration, this 

lack of public disclosure may seem suspect. 

However, as Professor Pope explained, there are 

less nefarious explanations for this lack of public 

transparency. It is common industry practice to 

keep all internal hospital policies private; it is not 

a practice specific to futility guidelines.174 Futility 

policies are designed to be used within the hospital 

and thus, it is not generally expected that such 

internal policies be disclosed outside the walls of 

At least 22 hospitals have published 

their futility policies in the public 

domain. However, disclosure is not

widespread

Medical Futility and Disability Bias 43

the hospital. However, public disclosure would be 

beneficial to external policy analysts and advocates; 

it would enable a closer and more well-informed 

examination of futility policies and the decisions 

made pursuant to them. Perhaps, however, this is 

precisely the reason for withholding such policies.

While public disclosure would be ideal, the 

more pressing question from a patient’s rights 

perspective is: How prevalent is it for hospitals 

to disclose medical futility policies to patients, 

their surrogates, or their family members? 

Unfortunately, the answer is similarly problematic: 

disclosure is rare. 

Despite the American 

Medical Association175

and some state-level 

medical associations, 

such as in Texas,176

recommending full and 

open disclosure to patients, surrogates, and 

families, most hospitals remain secretive with 

their policies. This truth is evident from the fact 

that many state laws are beginning to mandate 

disclosure, recognizing the clear ethical violation 

of withholding these policies from affected 

parties.177 Over the past several years, at least 

six states have attempted to enact laws that 

would mandate medical futility policy disclosure 

to patients, their surrogates, and their families.178

The legislative history behind these bills reveals 
that disclosure has been limited and hospitals 

have largely prioritized physician autonomy over 

patient choice. For illustration, consider the 

testimony of Mary Kellett, a mother of a child with 

a disability, who testified to Minnesota legislators 

about a state bill that mandates the disclosure of 

medical futility policies applying to children:

At 33 weeks pregnant, I had an emergency 

C-Section. Peter weighed 3 lbs and 2 oz. 

Peter was given excellent care until 

day 2 of his life when a test revealed he 

[had] Trisomy 18. At that time, it was 

recommended to us that we stop all 

treatment, wrap him up in a blanket, and 

let him die. We were told he would lead 

a life of terrible pain 

and suffering and 

would never know 

us or respond to us. 

My daughter went 

on the Internet and 

found many children 

living with this, some 

in their twenties and thirties. When I asked 

the doctor why he had lied to me, he 

said, “Well, how these children do largely 

depends on the choices their parents make 

for them.” I responded, “How can parents 

make decisions when they don’t receive 

accurate information?” He then said, “Well, 

we have to think about resources and, you 

know, Peter will never be able to contribute 

to society and will be a horrible burden 

to your family.” I started to cry, because I 

knew resources meant money, and it hurt 

so badly to have a doctor tell me my son 

wasn’t worthy of the needed treatment to 

help him live. . . .

Over the past several years, at least 

six states have attempted to enact 

laws that would mandate medical 

futility policy disclosure to patients, 

their surrogates, and their families

We were pressured over and over to sign 

a DNR. We were even told we could not 

receive home care visits from a nurse 

unless we signed a DNR. I called the 

Director of the Home Care Nursing Program 

and asked her if this was true. She was 

flabbergasted and told us this was not their 

policy, nor had it ever been their policy. 

When I confronted the doctor about that 

she said, “Well, they must have changed 

their policy,” to which I responded no, 

“it has never been their policy.”179

As Peter and his mother’s story demonstrates, 

the disclosure of medical futility policies is 

essential to providing patients, their surrogates, 

and their families with 

the information they 

need to protect their 

rights and ensure 

accountability. Contrary 

to what the physicians in 

Peter’s case assumed, 

he lived a joyous life for 

over 6 years.180 As Peter’s mother explained, the 

disclosure of futility policies “provides a level 

of consumer protection in health care choice. 

Parents shouldn’t carry the burden of fear and 

stress over the policies of the hospital, especially 

during a medical crisis. They have a right to know 

before they bring their child, [whether they have a 

disability] or not, to that hospital.”181

The reasons behind hospitals’ lack of 

historical disclosure of medical futility policies is 

twofold: hospitals largely support the concept 

and execution of physician autonomy and they 

want to protect against patient scrutiny and 

potential litigation. If a hospital were to disclose 

its policy to, for example, the family member 

44 National Council on Disability
of an individual who is reliant on a mechanical 

ventilator, then this disclosure opens up room for 

that family member to challenge the application 

of that policy. For decades, the concept of 

physician autonomy in decision making has 

dominated the medical profession. By disclosing 

the inner workings of their decisions, they 

allow room for patient 

questioning, and the 

potential for litigation is 

dramatically increased. 

It is no secret that, 

in the United States, 

hospitals are largely 

private operations and 

often operate for-profit; 

their goal is to maximize revenue and decrease 

expenditures.182 Litigation, especially if it is lost, 

is expensive. By withholding information that 

potentially provides fuel for disagreeing patients, 

surrogates, or family members, hospitals are 

protecting their bottom line. It is far safer, from an 

economics perspective, to make futility decisions 

It is far safer, from an economics 

perspective, to make futility 

decisions behind the scenes rather 

than out in the open, where they 

could be subject to questioning and 

eventual litigation

Medical Futility and Disability Bias 45

behind the scenes rather than out in the open, 

where they could be subject to questioning and 

eventual litigation. This is a stark characterization, 

but it is also the reality in a country filled with 

for-profit hospitals.

To protect against inappropriate medical futility 

policies and the improper application of futility 

policies, disclosure to 

patients, surrogates, and 

family members is key. 

It enables accountability, 

discussion, and mutual 

understanding among all 

parties; it fosters trust 

among the providers and 

the patients; and it has 

the potential to weed out biases and assumptions 

about the quality of life of a person with a disability. 

For these reasons, full and open disclosure 

of medical futility policies to patients, their 

surrogates, and their family members, in a format 

that is accessible to people with disabilities and/or 

limited English proficiency, should be required.
46 National Council on Disability
Chapter 4: State Laws on Medical Futility

All states have at least one statute that 

relates to medical futility—whether it be 

by immunizing a healthcare provider’s 

decision to deny life-sustaining care, protecting 

the patient’s right to receive life-sustaining care, 

or something in between.183 In June 2017, the 

Robert Powell Center for Medical Ethics at the 

National Right to Life Committee published a 

revised report analyzing the degree of protection, 

or lack thereof, that state laws provide to 

patients who face medical futility determinations 

in the context of life-saving or life-sustaining 

treatment.184 The comprehensive publication, 

which surveys statutory codes in all 50 states 

plus Guam and the US Virgin Islands, groups the 

state laws in accordance with how protective 

they are of the patient’s wishes for life-sustaining 

measures.185

State Laws Without Patient 

Protections

Nineteen states, plus Guam and the US Virgin 

Islands, have laws that allow healthcare providers 

to deny life-saving or life-sustaining treatment 

and provide no effective protection of a patient’s 

wishes to the contrary.186 These states are 

Arkansas, Connecticut, Illinois, Iowa, Kentucky, 

Louisiana, Montana, Nebraska, Nevada, New 

Jersey, North Carolina, North Dakota, Oregon, 

Pennsylvania, South Carolina, Tennessee, 

Washington, West Virginia, and Wisconsin.187

The impetus behind these state laws is clear: 

they protect healthcare providers from medical 

futility liability, with many explicitly codifying the 

physician’s civil and criminal immunity.188

In all of these states and territories, the 

healthcare provider may, on various “medical” 

or “moral” grounds, refuse to comply with 

the patient’s, their surrogate’s, or their family 

member’s life-sustaining treatment decision or 

the patient’s advance directive.189 For example, 

State Laws Without Patient 

Protections

1. Arkansas

2. Connecticut

3. Illinois

4. Iowa

5. Kentucky

6. Louisiana

7. Montana

8. Nebraska

9. Nevada

10. New Jersey

11. North Carolina

12. North Dakota

13. Oregon

14. Pennsylvania

15. South Carolina

16. Tennessee

17. Washington

18. West Virginia

19. Wisconsin

Medical Futility and Disability Bias 47
in Connecticut, a provider may base their denial 

of care on their “best medical judgment . . . 

in accordance with the usual and customary 

standards of medical practice.”190 In Nebraska, 

they may base their 

decision on “a formally 

adopted policy of the 

health care provider 

organization that is 

expressly based on 

religious beliefs or 

sincerely held ethical 

or moral convictions 

central to the operating 

principles of the [organization].”191 In West 

Virginia, it may be based on “the individual 

provider’s sincerely held religious beliefs or 

sincerely held moral convictions.”192 In Tennessee 

and North Carolina, it may be based on the 

provider’s “conscience.”193

If a provider does deny care contrary to the 

patient’s wishes, then the patient has the right to 

transfer to another provider under these laws.194

In 12 of these states and territories, the provider 

must take “all reasonable steps” to arrange the 

transfer of the patient to 

another facility that would 

provide the desired 

life-sustaining care.195

But in other states, a 

provider need only use 

some “efforts”196 or a 

“good faith attempt”197 to 

effectuate the transfer. In 

yet other states, the law 

puts the impetus on the patient or their surrogate 

to find a new provider,198 with some imposing a 

mere duty to “not impede”199 or to “cooperate”200

with the transfer.

Nineteen states, plus Guam and 

the US Virgin Islands, have laws 

that allow healthcare providers to 

deny life-saving or life-sustaining 

treatment and provide no effective 

protection of a patient’s wishes to 

the contrary

From a rights perspective, these 

laws are wholly inadequate; they 

endorse a dangerous level of 

subjectivity and expressly permit 

providers to make decisions based 

on their personal quality-of-life 

judgments

From a disability perspective, there are a 

number of problems with these 21 “unprotective” 

state laws. First, the standards, or lack thereof, 

by which a provider can base a denial of lifesustaining treatment 

under these laws are 

subjective. Grounds 

such as “best medical 

judgment,” “ethical or 

moral convictions,” and 

one’s “conscience” leave 

extensive room for the 

injection of the physician’s 

own value judgments 

and biases. In fact, the latter two are, on their 

face, wholly reliant on the physician’s personal 

beliefs. This subjectivity creates a potential for 

the physician’s treatment decision to be impacted 

by disability bias. What if, for example, the 

physician has a preconceived notion of what life 

with paraplegia is like, and then, citing grounds of 

“moral conviction,” chooses to deny life-sustaining 

treatment to that individual when they develop an 

acute infection? With malleable standards such 

as “ethics” and “morals,” this result would be 

permitted. From a rights 

perspective, these laws 

are wholly inadequate; 

they endorse a dangerous 

level of subjectivity and 

expressly permit providers 

to make decisions based 

on their personal qualityof-life judgments.

Second, after the 

provider denies treatment, it may be exceedingly 

difficult, as a practical matter, for a patient to 

find an alternative provider to whom they may 

transfer. Because none of these laws actually 

48 National Council on Disability
require the treating physician to effectuate

a transfer (but only, at its strongest, to use 

“reasonable efforts”), the burden is on the 

patient or their surrogate to find an alternative 

provider. This may prove to be a challenging task. 

Moreover, even if they do find an alternative 

provider, there is a glaringly obvious omission 

from these laws: They do not impose a duty to 

provide life-sustaining treatment while a transfer 

is organized or pending.201 As the Robert Powell 

Center succinctly explained: “It does the patient 

little good to be transferred already dead.”202 If a 

provider determines life-sustaining treatment is 

medically futile, especially when considering their 

own “morals” or “ethics,” it cannot be assumed 

that they will provide sufficient care in the interim 

period.203 There should be state law protections 

in place to ensure, at a minimum, that care 

is provided while a patient or their surrogate 

searches for an alternative facility.

State Laws with Weak Patient 

Protections

Eighteen states, plus the District of Columbia, 

have laws that arguably provide a right to receive 

life-sustaining measures, but there are notable 

problems with their 

language that reduce their 

protectiveness of patients 

with disabilities.204 These 

states are Alaska, Arizona, 

California, Colorado, 

Delaware, Georgia, Hawaii, 

Idaho, Indiana, Maine, 

Michigan, Mississippi, Missouri, New Mexico, 

Rhode Island, South Dakota, Utah, and Vermont.205

The laws of all states and territories within 

this category permit healthcare providers to deny 

life-sustaining treatment; however, each offers 

[T]here is a glaringly obvious 

omission from these laws: They 

do not impose a duty to provide 

life-sustaining treatment while a 

transfer is organized or pending

State Laws with Weak Patient 

Protections

1. Alaska

2. Arizona

3. California

4. Colorado

5. Delaware

6. District of 

Columbia

7. Georgia

8. Hawaii

9. Idaho

10. Indiana

11. Maine

12. Michigan

13. Mississippi

14. Missouri

15. New Mexico

16. Rhode Island

17. South Dakota

18. Utah

19. Vermont

Medical Futility and Disability Bias 49

some (albeit weak) form of patient protections 

after this decision is made.206 Five states require 

the treating provider to transfer the disagreeing 

patient to another provider.207 These laws are 

a clear improvement from those previously 

discussed, as they appropriately place the burden 

on the physician to find an alternative provider. 

However, they still 

allow providers to deny 

treatment on valueladen grounds such as 

one’s “conscience” or 

“moral convictions,” 

and they are silent 

on the provision of 

life-sustaining care during the interim transfer 

period.208 For these reasons, while perhaps 

intended to effectuate the medical preferences 

and decisions of the patient,209 these laws remain 

problematic from a rights perspective.
Closer to the goal of protecting the rights of 

patients with disabilities are the laws of eight 

states in this category, which require healthcare 

providers to either give “continuing care” or “care 

and comfort” pending the patient’s transfer.210

The problems with these laws, as the Robert 

Powell Center aptly identifies, is that the “care” 

required pending transfer is not defined.211

These laws do not say that “life-saving” or “lifesustaining” care must be provided—they only say 

some “care,” which could be interpreted to mean 

“palliative care, pain medication, and the like.”212

Three states in this category correct this 

ambiguity, either by requiring life-sustaining 

continuing care or requiring the provider to follow 

the patient advocate’s instructions.213 However, 

each of these states also immunizes providers 

from violating this provision if they were acting 

pursuant to the medical standard of care, thus 

wholly undermining the protection provided by 

these laws.214

In Missouri, state law permits healthcare 

providers to deny life-sustaining treatment on 

grounds of “sincerely held moral convictions”; 

however, it contains one important exception: if 

the provider has received the patient’s durable 

power of attorney for health care beforehand.215

While a step in the right direction, the Missouri 

law is clearly underinclusive of patients who 

wish to receive life-sustaining care, yet have not 

executed an advance directive. As is especially 

common among low-income individuals, they 

may simply have lacked the funds to draft these 

legal instruments, or lacked awareness that 

this was a necessary option. Regardless of the 

reasons, Missouri’s law, like the others in this 

category, fails to adequately protect the rights of 

patients with disabilities who are facing medical 

futility judgments.

Finally, Idaho law prohibits the denial of lifesustaining treatment if such care is directed by 

a competent patient or their surrogate decision 

maker, unless such care would be “futile.”216

The law narrowly defines “futile” as care that, 

in “reasonable medical judgment” would not 

prevent “imminent death” or the denial of which 

would “not result in or hasten” death.217 In other 

words, Idaho utilizes a physiological definition of 

futility that limits its application only to cases in 

which the treatment would not work medically. 

It does not, on its face, seem to permit qualityof-life considerations. However, Idaho’s law 

contains one very notable exception: it “does 

not require provision of treatment to a patient 

if it would require denial of the same or similar 

treatment to another patient.”218 Under this broad, 

unqualified exception, if a hospital experienced 

a shortage of ICU beds, ventilators, or any other 

life-sustaining services or devices, then it could 

use this resource shortage to justify denying 

treatment to a patient with a disability. This result 

is ethically unacceptable and a glaring hole in 

Idaho’s approach.

State Laws with Time-Limited 

Patient Protections

Two states, Virginia and Texas, have laws 

that require an unwilling provider to give lifesustaining treatment for a limited period of 

State Laws with Time-Limited 

Patient Protections

1. Texas

2. Virginia

50 National Council on Disability
time to patients pending a transfer to another 

facility.219 In Virginia, the physician has the right 

to deny any health care that they determine to 

be “medically or ethically inappropriate.”220 If the 

patient, their surrogate, or their family member 

disagrees, then the physician must make a 

“reasonable effort” to transfer the patient to a 

willing provider.221 During the interim period, the 

physician must provide life-sustaining care that 

is “reasonably available” to them; however, such 

care is limited to 14 days.222

Texas law also establishes time-limited 

protections; however, only after a highly 

controversial and binding extrajudicial process for 

the rending of medical 

futility determinations.223

In Texas, if a physician 

believes that a healthcare 

treatment is futile, then 

the physician must 

inform the patient or 

their surrogate of this 

decision and, after at 

least 48 hours, an ethics 

committee will hold a hearing to review this 

decision.224 If the ethics committee agrees with 

the physician, then the provider will discontinue 

life-sustaining care after 10 days (with an option 

for extension via court order).225 If, after 10 days, 

no willing provider is found, then treatment may 

be discontinued and the physician is immunized 

from liability.226

The problems with the laws in Virginia and 

Texas are rampant. First, it is highly likely that 

a person who requires life-sustaining care will 

need more than 10 or 14 days of treatment. While 

providing some care in the interim transfer period 

is a step in the right direction, these time-limited 

laws are wholly insufficient to protect against 

By granting physicians immunity 

through using [Texas’s] futility law, 

a disagreeing patient is left with few 

legal options. They have 10 days

to find a new, willing provider—or 

their life-sustaining treatment will 

be discontinued

value-laden futility judgments. Second, Texas’s 

law in particular creates a binding decision-making 

body, but fails to offer due process protections 

for patients and blocks them from any future 

challenges in a court of law. The lack of detail 

in Texas’s law gives hospitals a dangerous level 

of discretion to create and manage their own 

ethics committees and determine their own 

standards for a finding of medical futility. There 

is no continuity in these committees throughout 

the state, no diversity among its members, and 

little oversight of their operations. Even more 

concerning, however, is that the decisions they 

render are virtually unappealable. By granting 

physicians immunity 

through using the state’s 

futility law, a disagreeing 

patient is left with few 

legal options. They have 

10 days to find a new, 

willing provider—or their 

life-sustaining treatment 

will be discontinued. 

With the stakes so high, 

the lack of procedural protections in Texas’s law is 

unacceptable.

State Laws with Strong Patient 

Protections

Finally, the remaining 11 states—Alabama, 

Florida, Kansas, Maryland, Massachusetts, 

Minnesota, New Hampshire, New York, Ohio, 

Wyoming, and Oklahoma—each have laws that 

can be characterized as protective of the rights of 

patients with disabilities to receive life-sustaining 

care, even in the face of a disagreeing provider.227

Ten of these states—Alabama, Florida, 

Kansas, Maryland, Massachusetts, Minnesota, 

New Hampshire, New York, Ohio, and 

Medical Futility and Disability Bias 51
State Laws with Strong Patient 

Protections

1. Alabama

2. Florida

3. Kansas

4. Maryland

5. Massachusetts

6. Minnesota

7. New Hampshire

8. New York

9. Ohio

10. Oklahoma

11. Wyoming

52 National Council on Disability

Wyoming—have laws that protect the right of 

an individual to receive life-sustaining treatment 

pending a transfer to another facility, without 

time limit.228 These laws are a significant 

improvement from those in Virginia and Texas, 

enabling a disagreeing patient to actually survive 

the interim period through which they search 

for an alternative provider. The laws provide 

concrete, understandable, and unlimited 

protection for patients who wish to receive lifesustaining treatment.

In Oklahoma, state law prevents the denial 

of life-sustaining treatment when it is based 

on potentially discriminatory factors.229 The law 

provides:

A health care provider shall not deny to a 

patient a life-preserving health care service 

the provider provides to other patients, the 

provision of which is directed by the patient 

or a person authorized to make health care 

decisions for the patient:

1. On the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than 

extending the life of an individual who is 

younger, nondisabled, or not terminally 

ill; or

2. On the basis of disagreement with how 

the patient or person authorized to make 

health care decisions for the patient 

values the trade-off between extending 

the length of the patient’s life and the risk 

of disability.230

Oklahoma’s law provides strong protections for 

patients with disabilities by expressly prohibiting 

reliance on quality-of-life misconceptions. It 

notably covers any situation where inappropriate 

disability biases are injected into a futility 

decision, and not just a situation where the 

patient or their surrogate expresses their 

objection (as in Idaho). This places less of a 

burden on the patient or surrogate to identify and 

communicate their disagreement; instead, the 

burden is on the healthcare provider to critically 

examine their own potential biases and ensure 

that the criteria through which they are relying 

is purely objective, outcome-based medicine 

and is not impacted by their own values. Other 

states should adopt or amend their laws to 

incorporate either nondiscrimination protections 

in the medical futility context (such as Oklahoma) 

or mandated life-sustaining treatment pending 

transfer, without time limits (such as Alabama, 

Florida, Kansas, Maryland, Massachusetts, 

Minnesota, New Hampshire, New York, Ohio, 

and Wyoming)—or, ideally, both.
Chapter 5: The Lawfulness of Medical 

Futility Decisions

Medical futility disputes rarely make it to 

a court of law.231 For reasons previously 

discussed, it is often financially 

prohibitive or impracticable for patients or their 

surrogates to appeal to a court for injunctive relief 

from futility decisions and the treatment actions 

made pursuant to them. Despite this reality, 

medical futility decisions, especially in the context 

of advanced illness, implicate numerous federal 

and state constitutional and statutory provisions, 

and there are competing 

perspectives on whether 

and how the withholding 

or withdrawing of lifesustaining care, when 

based on assumptions or 

biases about the quality of 

life or capacities of people 

with disabilities, violates 

such laws. Disability 

nondiscrimination laws, 

including the ADA and Section 504 of the 

Rehabilitation Act, provide a viable, yet largely 

unexplored vehicle for enforcing the rights of people 

with disabilities in the medical futility context.

Surveying the Field: Legal 

Implications at the Intersection 

of Medical Futility and Disability

The concept of medical futility first emerged 

within legal discourse in the early 1990s, when 

Disability nondiscrimination laws, 

including the ADA and Section 504 

of the Rehabilitation Act, provide 

a viable, yet largely unexplored 

vehicle for enforcing the rights 

of people with disabilities in the 

medical futility context

cases such as In re Helga Wanglie gained national 

attention. Ms. Wanglie was a 87-year-old woman 

who was in a PVS following a cardiopulmonary 

arrest.232 Her physicians believed she would 

never regain consciousness and recommended 

that her mechanical ventilation be removed.233

Ms. Wanglie’s family strongly objected, believing 

that the withdrawal of life support would be 

contrary to her wishes and religious beliefs.234

When her family refused to consent, the medical 

center filed suit under 

the state’s surrogacy law, 

seeking to appoint an 

agreeing conservator for 

her.235 The court ultimately 

sided with Ms. Wanglie’s 

family, allowing her 

husband to continue 

to make her medical 

decisions.236 A few days 

later, while still connected 

to her respirator, Ms. Wanglie passed away.237

Since In re Helga Wanglie, there have been at 

least 40 appellate-level cases involving a medical 

futility dispute between a patient or surrogate 

who wishes to receive or continue life-sustaining 

treatment and a healthcare provider that seeks 

to withdraw or withhold it.238 These cases have 

been litigated under many different causes of 

action, including the Fourteenth Amendment 

to the US Constitution, the Emergency Medical 

Medical Futility and Disability Bias 53
Treatment and Active Labor Act (EMTALA), 

Section 504 of the Rehabilitation Act, the ADA, 

and state-level constitutions, statutes, and 

common law doctrine.239 The outcomes of these 

challenges have varied.

Fourteenth Amendment challenges have 

been historically unsuccessful at effectuating 

the rights of people with disabilities in the 

medical context. The Fourteenth Amendment 

provides that no state shall “deprive any 

person of life, liberty, or property, without due 

process of law; nor deny to any person within 

its jurisdiction the equal protection of the laws.” 

Because the Fourteenth 

Amendment only 

reaches state action, 

its application to the 

medical futility context is 

limited. However, were 

there to be a finding of 

state action, a wrongful futility determination 

or a state law that endorses such a result may 

violate an individual’s substantive due process 

right to life. It probably would not constitute a 

violation of equal protection.

The Fourteenth Amendment’s Due Process 

Clause protects against the arbitrary deprivation 

of fundamental liberty interests. In a doctrine 

known in the legal community as substantive 

due process, fundamental privacy interests 

such as the right to parental decision making,240

the right to choose an abortion,241 the right to 

use contraception,242 and the right to marry243

have been well established. In the context of 

healthcare decision making, there have been two 

highly controversial decisions by the US Supreme 

Court, neither of which directly address the 

issue of medical futility discrimination. In Cruzan 

v. Director, Missouri Department of Health, the 

There is a colorable legal argument 

that an individual with a disability 

has a right to life that is protected 

by substantive due process

Supreme Court upheld a state law that required 

clear and convincing evidence of the patient’s 

wishes if and when their surrogate wished to 

withdraw life-sustaining treatment.244 Citing the 

state’s interest in protecting and preserving 

human life, the Court held that the law did not 

unconstitutionally infringe on an individual’s 

right to refuse unwanted medical treatment.245

It explained: “a State may properly decline to 

make judgments about the ‘quality’ of life that 

a particular individual may enjoy, and simply 

assert an unqualified interest in the preservation 

of human life.”246 In Washington v. Glucksberg, 

a group of physicians 

tested the limits of the 

Cruzan holding, arguing 

that a state statute 

prohibiting physicianassisted suicide ran afoul 

of an individual’s right 

to medical self-determination.247 The Supreme 

Court disagreed.248 In holding that there is no 

constitutional right to commit physician-assisted 

suicide, the Court announced the outer limits of 

due process at the end of life.249 However, it left 

open the question of whether, in the opposite, an 

individual has a fundamental right to live and thus 

receive life-sustaining treatment in the face of a 

disagreeing provider.

There is a colorable legal argument that an 

individual with a disability has a right to life that 

is protected by substantive due process. While 

this legal theory remains largely untested in 

the federal courts, dicta from both Cruzan and 

Glucksberg support substantive due process 

protections in the context of medical futility. 

Namely, by engaging in analysis that balances 

the state’s interest in preservation of life and the 

individual’s right to medical self-determination, 

54 National Council on Disability
the Court implies that a competent individual 

has some sort of fundamental liberty interest 

in dictating their own course of medical 

treatment.250 In Cruzan and Glucksberg, that 

individual interest was framed as a negative 

right—that is, an individual may have a right to 

refuse unwanted medical treatment in certain 

circumstances; however, there are compelling 

arguments for extending the liberty interest to 

a positive right, one that provides an individual 

with a right to receive wanted medical treatment, 

especially in the face of a biased decision maker. 

Indeed, in many ways, an individual’s right to 

life is far more rooted 

in “our Nation’s history, 

legal traditions, and 

practices”251 than a right 

to death. Principles of 

the inherent value of 

life, nondiscrimination 

in health care, and 

equality are, at least in 

theory, central to the 

evolving traditions of 

US society.252 It is not 

a far stretch to assert 

a fundamental right to receive life-sustaining 

medical treatment and be free from quality-of-life 

judgments that cause discrimination in medical 

futility decisions.

However, medical futility laws or the decisions 

made pursuant to them that discriminate on 

the basis of disability would likely not violate 

the Fourteenth Amendment’s Equal Protection 

Clause. Equal protection does reach classification 

on the basis of disability, however, in Cleburne 

v. Cleburne Living Center, the US Supreme 

Court held that such classifications are only 

subjected to a rational basis test (“a rational 

The US Court of Appeals for 

the Fourth Circuit has expressly 

recognized that a hospital must 

provide life-saving treatment 

to a patient with a disability 

experiencing an emergent medical 

condition under EMTALA, even if 

the hospital deems that treatment 

“medically futile” in the long term

relation to a legitimate state interest”).253 As 

presently articulated, this low bar would make it 

exceedingly difficult to challenge discriminatory 

futility decisions through equal protection.

EMTALA offers a viable, yet substantively 

limited, cause of action for patients with 

disabilities facing a futility judgment. EMTALA 

is a federal statute that imposes a duty on 

hospitals to stabilize all patients who come to 

the hospital and have an emergency medical 

condition.254 EMTALA was originally designed 

to address “patient dumping,” a practice where 

hospitals would turn away or transfer patients 

for nonmedical reasons 

(such as lack of health 

insurance).255 The 

hospital’s duty under 

EMTALA is limited only 

to medical stabilization—

after the patient is stable, 

they may transfer them 

to another facility.256 The 

US Court of Appeals for 

the Fourth Circuit has 

expressly recognized that 

a hospital must provide 

life-saving treatment to a patient with a disability 

experiencing an emergent medical condition 

under EMTALA, even if the hospital deems that 

treatment “medically futile” in the long term.257

In In re Baby K, a hospital sought judicial approval 

to withhold life-saving respiratory treatment from 

an infant with anencephaly, asserting that it was 

medically “futile” to provide the care because 

of the baby’s anencephalic condition.258 Baby 

K’s mother vehemently opposed the measure, 

expressing her wishes that her daughter receive 

all treatment necessary to save her life.259 The 

court, citing EMTALA, refused the hospital’s 

Medical Futility and Disability Bias 55
request and required the facility to continue to 

provide life-saving treatment to Baby K when 

she presented at the emergency department 

as needed.260 The plain language of EMTALA 

required medical stabilization and the hospital 

could not avoid this duty by hiding behind 

an assertion that life-sustaining care would 

ultimately prove “futile” in saving Baby K’s life.261

While the In re Baby K holding was 

groundbreaking, it only offers a limited solution 

in the face of a provider who is relying on qualityof-life assumptions to gauge medical futility. 

EMTALA’s reach is limited to medical stabilization; 

while a provider, under common law principles, 

could not just abandon a patient, they could 

certainly attempt to 

transfer them to another 

facility. Moreover, in 

some jurisdictions, the 

hospital could simply 

admit the patient, 

immunizing it from 

liability under EMTALA’s 

provisions, which apply 

emergency department protocols.262 EMTALA 

thus offers an incomplete solution.

Section 504 of the Rehabilitation Act and the 

ADA offer a promising, yet largely unexplored, 

option for litigants with disabilities facing a 

wrongful futility decision.263 Section 504 and 

the ADA both prohibit discrimination on the 

basis of disability. Section 504 covers programs 

and activities that accept federal financial 

assistance;264 while the ADA covers programs 

operated by state and local governments and 

places of public accommodation (including 

private medical facilities).265 Section 504 

and the ADA are largely coextensive and, as 

detailed in the following section, provide a 

Litigation under Section 1557 is just 

emerging, with no known futility 

cases. However, given its similarity

to Section 504 and the ADA, it offers 

a promising legal mechanism for 

prospective litigants

broad and hopeful litigation solution for patients 

with disabilities.

Likewise, Section 1557 of the ACA offers 

a novel cause of action for an individual with a 

disability who has been discriminated against 

in futility decision making.266 In relevant part, 

Section 1557 prohibits disability discrimination 

by any health program or activity, any part of 

which is receiving federal financial assistance, 

and any publicly administered health program 

or activity.267 Litigation under Section 1557 is 

just emerging, with no known futility cases. 

However, given its similarity to Section 504 and 

the ADA, it offers a promising legal mechanism 

for prospective litigants.

Finally, many 

state constitutions, 

statutes, and common 

law principles offer 

potential causes of 

action to enforce the 

rights of people with 

disabilities and seek 

redress against wrongful 

medical decisions; however, these laws vary 

considerably from state to state. For example, in 

Rideout v. Hershey Medical Center, the parents 

of Brianne Rideout sued the medical center, 

which had withdrawn mechanical ventilation 

against their objections and subsequently allowed 

their daughter to die, under Pennsylvania law 

theories of negligent and intentional infliction 

of emotional distress, lack of informed consent, 

and privacy-based parental rights.268 In Gilgunn 

v. Massachusetts General Hospital, the family 

of Catherine Gilgunn sued the hospital, which 

had withdrawn life support and issued a DNR 

against their objections, under the Massachusetts 

common law doctrine of negligence.269 And in 

56 National Council on Disability
Betancourt v. Trinitas Regional Medical Hospital, 

the family of Ruben Betancourt sued for injunctive 

relief and guardianship under New Jersey law 

to restrain the hospital from discontinuing or 

suspending life-sustaining treatment.270 The 

outcomes of cases like Rideout, Gilgunn, and 

Betancourt have been mixed and are largely factspecific. In Rideout, the dispute settled before 

the court reached the full merits of the state 

law claims; in Gilgunn, a jury found in favor of 

the hospital, agreeing that further treatment 

would have been futile; and in Betancourt, the 

court granted the family’s guardianship petition 

and restrained the hospital from removing 

Mr. Betancourt’s life support.271 Because of 

the wide variability, individuals, their legal 

representatives, and state-level advocates should 

carefully explore the potential causes of action 

under their state’s constitution and doctrines of 

informed consent, surrogate, and tort liability.

Disability Nondiscrimination Law 

and Medical Futility

The ADA is the most significant and comprehensive 

legislation ever enacted to prohibit discrimination 

against and provide accommodations for people 

with disabilities. Enacted in 1990—just following 

the emergence of the medical futility debate—it 

affords broad protections to people with disabilities 

in employment, state and local governments, and 

places of public accommodation.272 All healthcare 

provider offices and hospitals are covered under 

the ADA, with public facilities operated by a state 

or local government subject to Title II and private 

medical offices and hospitals subject to Title III.273

Additionally, all medical providers and facilities 

that accept federal financial assistance (including 

Medicare and Medicaid reimbursements) are 

covered under Section 504 of the Rehabilitation 

Act. While it is clear that the disability 

nondiscrimination law is binding on providers, 

it remains unclear whether and under what 

circumstances futility decisions could constitute 

unlawful discrimination. This section will analyze 

that question, specifically examining whether a 

provider’s conscious or implicit considerations 

of disability-related quality of life in futility 

decisions can give rise to a successful claim of 

discrimination under the ADA.

The breadth and purposes of disability 

nondiscrimination law reveal congressional 

intent to eliminate the widespread exclusion 

and marginalization of people with disabilities. 

For example, the ADA affords broad protections 

to people with disabilities in employment;274

public services that state and local governments, 

departments, and agencies provide;275

public accommodations, including certain 

private entities that operate public services;276

and telecommunications.277 The statute’s 

express purpose is to provide “a clear and 

comprehensive national mandate for the 

elimination of discrimination against [people] 

with disabilities.”278 In its findings, Congress 

noted: “historically, society has tended to isolate 

and segregate individuals with disabilities, and, 

despite some improvements, such forms of 

discrimination against individuals with disabilities 

continue to be a serious and pervasive social 

problem.”279 In particular, Congress emphasized 

the importance of eliminating discrimination 

in certain “critical areas,” including “health 

services.”280 Moreover, during the ADA’s passage, 

legislative history shows that Congress explicitly 

recognized the pervasiveness of discrimination in 

the provision of medical treatment.281

Pursuant to these expansive purposes, Title II 

of the ADA and Section 504 of the Rehabilitation 

Medical Futility and Disability Bias 57
Act provide that “no qualified individual with a 

disability shall, by reason of her or his disability, 

be excluded from participation in, be denied the 

benefits of, or be subjected to discrimination” 

by a public entity (under Title II) or any program 

or activity receiving federal financial assistance 

(under Section 504).282 Similarly, Title III of 

the ADA provides that “[n]o individual shall be 

discriminated against on the basis of disability 

in the full and equal enjoyment of the goods, 

services, facilities, privileges, advantages, 

or accommodations of any place of public 

accommodation by any person who owns, leases 

(or leases to), or operates a place of public 

accommodation.”283

In order to succeed in an ADA or Section 504 

claim, a plaintiff must generally prove: (1) she 

is an individual with a disability; (2) she was 

discriminated against by a covered entity; 

and (3) discrimination was on the basis of 

disability.284 The ADA and Section 504 broadly 

define disability as “a physical or mental 

impairment that substantially limits one or 

more major life activities of such individual,” 

“a record of such impairment,” or “being 

regarded as having such an impairment.”285

Covered entities under Title II and Title III are, 

respectively, public entities and private entities 

that operate a place of public accommodation.286

A “public entity” includes “any State or local 

government” or “instrumentality of a State . . . 

or local government;”287 and a “place of public 

accommodation” is a facility whose operations 

fall into an enumerated category, including a 

“professional office of a health care provider, 

hospital, or other service establishment.”288

Covered entities under Section 504 are programs 

or activities that receive federal funding, including 

Medicaid or Medicare reimbursements, which 

are accepted by virtually every hospital and most 

healthcare providers.289

The second and third prongs of an ADA or 

Section 504 claim examine whether a person 

with a disability experiences discrimination and 

whether that discrimination was “by reason of” 

or “on the basis of” her disability.290 Unlawful 

discrimination under the ADA or Section 504 

can be proven through one of two primary legal 

theories—disparate treatment or disparate 

impact. Disparate treatment considers whether a 

covered entity treats an individual with a disability 

differently because of their disability; while 

disparate impact considers whether a facially 

neutral policy or practice disproportionately 

impacts people with disabilities. Notably, 

Congress intended disability nondiscrimination 

protections to reach not only discrimination that 

is the result of “invidious animus,” but also of 

“thoughtlessness,” “indifference,” and “benign 

neglect.”291

In the context of medical futility decisions, 

people with disabilities and their families 

have had some success in using the ADA 

and Section 504 to block the withholding or 

withdrawal of life-sustaining care. The most 

pertinent case is In re Baby K. In Baby K, a 

hospital sought a declaratory judgment permitting 

the withdrawal and refusal of life-sustaining care 

to a baby with anencephaly who was struggling 

to breathe.292 The hospital argued that providing 

ventilator care to Baby K was medically futile, 

given the baby’s low chance of living for more 

than a few days.293 Baby K’s mother strongly 

objected, asserting her belief that “all human life 

has value, including her anencephalic daughter’s 

life.”294 The US District Court for the Eastern 

District of Virginia, considering both parties’ 

positions, held that the refusal of life-sustaining 

58 National Council on Disability
care to Baby K would constitute disability 

discrimination within the meaning of the ADA.295

The court explained:

[T]he plain language of the ADA does not 

permit the denial of ventilator services that 

would keep alive an anencephalic baby 

when those life-saving services would 

otherwise be provided to a baby without 

disabilities at the parent’s request. The 

Hospital’s reasoning would lead to the 

denial of medical services to anencephalic 

babies as a class of disabled individuals. 

Such discrimination against a vulnerable 

population class 

is exactly what 

the American with 

Disabilities Act was 

enacted to prohibit.296

In sum, the court 

held that, because the 

treatment would be 

provided to an infant 

without a disability at 

the parent’s request, 

the hospital could not escape ADA liability by 

asserting that the treatment was “futile.”297 The 

hospital appealed the decision, and the US Court 

of Appeals for the Fourth Circuit affirmed—but 

only on grounds of the EMTALA violation.298 The 

court stated that it was unnecessary to review 

the lower court’s ADA decision because the 

denial of care would constitute a clear violation of 

EMTALA.299

Disability advocates have also seen success 

in using the ADA and Section 504 to prevent 

medical futility discrimination outside of the 

judicial context. In the mid-1990s, the state of 

“The Hospital’s reasoning would 

lead to the denial of medical 

services to anencephalic babies as 

a class of disabled individuals. Such

discrimination against a vulnerable 

population class is exactly what the 

American with Disabilities Act was 

enacted to prohibit.

Oregon proposed a revision to their Medicaid 

demonstration that would have expanded 

Medicaid to all individuals below the federal 

poverty line; however, to pay for it, they proposed 

a system of healthcare rationing.300 Under the 

plan, Oregon would have developed a healthcare 

prioritization system that relied on three 

criteria: the probability of death, the probability 

of returning to an asymptomatic state, and 

the cost of avoiding death.301 From a disability 

perspective, there were clear concerns over the 

disparate impact this plan would have had on 

the rights of patients with disabilities in need of 

life-sustaining treatment. The US Department 

of Health and Human 

Services, listening to the 

well-voiced concerns 

of disability advocates, 

rejected Oregon’s 

proposal on grounds that 

it would violate the ADA 

and Section 504.302

Some federal 

courts, however, 

have been resistant 

to applying disability 

nondiscrimination law to the context of 

withdrawal of life-sustaining treatment.303

Professor Pope explained the general reasoning: 

“when an individual’s disability is relevant 

to the patient’s capacity to benefit from the 

medical treatment at issue, then it may not be 

a violation of the ADA or Section 504.”304 The 

primary case cited for this position is Schiavo v. 

Schiavo, a case involving a woman diagnosed 

with PVS whose family members (not a family 

member and provider) disagreed over whether 

her life-sustaining care should be withdrawn.305

In Schiavo, the US Court of Appeals for the 

Medical Futility and Disability Bias 59
Eleventh Circuit considered whether the removal 

of nutrition and hydration from Ms. Schiavo 

on the basis of her PVS condition constituted 

discrimination on the basis of disability.306 The 

court rejected the discrimination claim on narrow 

grounds, holding that the surrogate-defendant 

was not a public entity or accommodation 

subject to the ADA and that the Hospicedefendant, following a court order, did not act 

“on the basis of [Ms. Schiavo’s] disability.”307

The Eleventh Circuit also asserted in dicta that 

“[t]he ADA was never intended to provide an 

avenue for challenging court orders in termination 

of care cases.”308 Schiavo’s precedent can be 

distinguished, both factually and legally, from 

medical futility disputes. While the disagreement 

in Schiavo was among family members, medical 

futility decisions are 

primarily characterized 

by a dispute between a 

provider and an individual 

or their family. Further, 

Schiavo’s holding is limited, only reaching the 

threshold issues of the ADA’s applicability and 

the challenged action’s nexus to disability. Its 

precedential value to medical futility disputes is 

therefore questionable.

Upon review of the limited caselaw, it is clear 

that people with disabilities may have a viable 

basis for enforcing their ADA and Section 504 

rights in the context of medical futility 

decisions.309 HHS and at least one US District 

Court have expressly recognized the rights of 

people with disabilities to receive life-saving or 

life-sustaining care. While there are dicta from 

other federal courts suggesting limitations to 

the ADA and Section 504’s protections, these 

cases, such as Schiavo v. Schiavo, can largely be 

distinguished and are arguably not binding on a 

[Schaivo v . Schaivo’s] precedential 

value to medical futility disputes is 

therefore questionable .

medical futility case. Indeed, an examination of 

the elements of a disability discrimination claim, 

especially when considered in the context of 

the statute’s broad purposes and the gravity of 

futility decisions, indicates that a medical futility 

determination that relies on disability-related 

quality of life assumptions likely would violate 

the statute.

As previously detailed, a successful ADA 

or Section 504 plaintiff must prove she has a 

qualifying disability; the provider is a covered 

entity; and she was subjected to discrimination 

on the basis of disability by that provider.310 The 

first element will be relatively easy to prove 

in the medical futility context: any substantial 

impairment to respiratory, cardiac, or other 

major body functions would qualify, and thus 

most individuals facing a 

futility judgment would 

likely have a “disability” 

within the meaning the 

ADA and Section 504. 

Likewise, nearly every provider is within the 

purview of the ADA and/or Section 504—if the 

medical entity is funded by the state or local 

government, it would be within the purview of 

Title II; if it is private, it would be covered under 

Title III, by virtue of all hospitals and provider 

offices being places of public accommodation; 

and if it accepts federal funding (including public 

healthcare program reimbursements), it would be 

covered under Section 504.311

The heart of the legal issue lies in whether 

the plaintiff, by virtue of being subjected to a 

decision that relies on biases and stereotypes 

about current or prospective disability, was 

“subject to discrimination on the basis of 

disability” by the provider. Admittedly, this 

element is heavily dependent on the facts of 

60 National Council on Disability
the case at issue; however, under the holding 

of Baby K, discrimination could generally be 

proven by showing that a medical futility policy, 

or a provider acting pursuant to it, denied lifesustaining treatment to a person with a disability, 

and that treatment would otherwise have 

been provided to a person without a disability. 

From an evidentiary perspective, this could 

be demonstrated though a similarly situated 

comparator; through medical records that either 

explicitly reference the individual’s disability or 

a low quality of life in relation to the treatment 

at issue; through a written policy of the medical 

facility that references consideration of the 

individual’s disability or a low quality of life; or 

through statistical evidence that a futility policy 

is disproportionately utilized on patients with 

disabilities unrelated to the reason for their office 

visit or hospital admission. The possibilities are 

potentially endless.

Counterarguments asserting that a provider 

is immunized from ADA and Section 504 liability 

when an individual’s disability is pertinent to 

the diagnosis miss the point and are indicative 

of medical model thinking. If an individual’s 

“disability” were truly relevant to a treatment 

outcome, so as to make that treatment 

physiologically futile (i.e., no chance of achieving 

the desired benefit), then such a determination 

would not run afoul of the ADA and Section 504. 

Put differently, discrimination in medical futility 

occurs when a decision relies on assumptions 

about the value of life with a disability. If a 

treatment simply will not work, the provider would 

not be making a decision “on the basis of” that 

person’s disability; they are making the decision 

based on objective medical facts. Therefore, 

there is no “slippery slope” to requiring any and 

all medical treatments, no matter how objectively 

futile, as opponents will have one believe. There 

is a clearly defined limit and that limit is treating a 

person with a disability’s life as having less value 

than that of a person without a disability. For 

these reasons, the ADA and Section 504 protect 

the rights of people with disabilities in the medical 

futility context and should be utilized as such.

Medical Futility and Disability Bias 61
62 National Council on Disability
Conclusion

Medical futility and disability intersect in 

complex and nuanced ways. A solution 

to the discrimination in medical futility 

decisions that people with disabilities experience 

requires a multifaceted approach, including action 

by medical and health professional schools; 

hospitals, medical facilities, and health provider 

offices; professional hospital accreditation bodies; 

healthcare insurers; state legislatures; the US 

Department of Health and Human Services; 

and Congress.

Medical Futility and Disability Bias 63
64 National Council on Disability
Recommendations

Congress

■ Congress should enact legislation that requires hospitals and other medical entities to have 

due process protections for medical futility decisions; utilize an independent due process 

mechanism for mediating and deciding medical futility disputes; and disclose medical 

futility policies to patients, their surrogates, or their family members.

■ Congress should enact legislation to make federal funding for hospitals and other medical 

entities contingent on the provision of due process protections in medical futility decisions.

Executive Branch

The US Department of Health and Human Services (HHS) 

Office for Civil Rights (OCR)

■ OCR should issue guidance to healthcare providers clarifying that medical futility decisions 

that rely on subjective quality-of-life assumptions or biases about disability violate federal 

disability rights laws.

■ OCR should seek compliance from hospitals and medical facilities that violate disability rights 

laws by making medical futility decisions that rely on subjective quality-of-life assumptions 

or biases about disability and withhold federal financial assistance when compliance cannot 

be obtained.

■ HHS should encourage hospitals and medical facilities to use an independent due process 

mechanism for mediating and deciding medical futility disputes and disclose medical futility 

policies to patients, their surrogates, or their family members.

Medical Futility and Disability Bias 65
Medical and Health Professional Schools

■ Healthcare provider education and training should include disability competence as a 

component of or in addition to cultural competence training. Such education, at a minimum, 

should include topics such as disability bias and stereotypes, physical and programmatic 

accessibility required by law, and clinical expertise.

■ Healthcare provider education must be physically and programmatically accessible for 

students and prospective students with disabilities, so as to facilitate and encourage greater 

diversity in the health professions. By fostering this diversity, more providers will experience 

and/or learn from their peers an accurate understanding of life with a disability, thus reducing 

bias in medical futility decisions.

Hospitals and Medical Facilities

■ Hospitals, medical facilities, and provider offices should utilize an independent board to 

mediate and, if necessary, make medical futility decisions for incompetent patients. The 

board should be independent from the relevant facility and provider(s), offer procedural due 

process protections, reflect diversity, and have at least one disability rights advocate as a 

member. Its decisions should be appealable to a court of law.

■ Hospitals, medical facilities, and provider offices should provide full and open disclosure of 

their medical futility policies to patients, their surrogates, and their family members. Such 

policies should be provided in an accessible format and in advance of the provider(s) making 

a futility recommendation.

Professional Accreditation Bodies

■ Professional accreditation bodies should identify and decertify any hospitals, medical facilities, 

or health provider offices that fail to follow pertinent state laws protecting patient’s rights 

in medical futility decision making; that fail to make their facilities and programs physically 

and programmatically accessible for patients and prospective patients; or that fail to disclose 

medical futility policies to patients, their surrogates, or their family members, when required 

by law.

66 National Council on Disability
Healthcare Insurers

■ Healthcare insurers should improve coverage of lifesaving and life-sustaining treatment, 

including the removal of arbitrary exclusions, limitations, and excessive cost sharing, to 

reduce healthcare disparities and improve meaningful choice in critical care decisions.

■ Healthcare insurers should improve coverage of long-term services and supports.

State Legislatures

■ State legislatures should enact or amend statutes and regulations to mandate that hospitals 

and health providers utilize an independent board to mediate and, if necessary, make medical 

futility decisions for incompetent patients. The boards should offer procedural due process 

protections, reflect diversity, and have at least one disability rights advocate as a member. 

Its decisions should be appealable to a court of law.

■ State legislatures should adopt or amend statutes and regulations to expressly prohibit 

the involuntary withdrawal of life-sustaining treatment, unless the treatment is objectively 

physiologically futile and such a determination is not based on a view that the life of a person 

with a disability is of lower value or of lower quality than that of a person without a disability, 

whether the person’s disability is pre-existing or newly acquired.

■ State legislatures should adopt or amend statutes and regulations to require health care 

providers to provide life-sustaining treatment to an individual pending their transfer to another 

facility, without time limits.

Medical Futility and Disability Bias 67
68 National Council on Disability
Endnotes

1 William J. Peace, “Comfort Care as Denial of Personhood,” Hastings Center Report 42, no. 4 (2012): 15.

2 Silvia Yee et al., “Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity,” 

National Academies of Sciences, Engineering, and Medicine (2017): 44.

3 Yee et al., 42; Mary Crossley, “Ending-Life Decisions: Some Disability Perspectives,” Georgia State University 

Law Review 33 (2017): 900–01; Robert Powell Center for Medical Ethics, National Right to Life Committee, 

“Will Your Advance Directive Be Followed?” (June 2017): 5, https://www.nrlc.org/uploads/medethics/

WillYourAdvanceDirectiveBeFollowed.pdf.

4 Mary A. Crossley, “Medical Futility and Disability Discrimination,” Iowa Law Review 81 (1995): 182–84.

5 Crossley, 182–84.

6 Amir Halevy, “Medical Futility, Patient Autonomy, and Professional Integrity: Finding the Appropriate Balance,” 

Health Matrix 18 (2008): 263, 272–74.

7 Halevy, 274–77.

8 Surrogates are representatives identified, or appointed by a court, to make medical decisions for or with the 

individual. A surrogate can be an individual previously identified by the patient through a legal instrument, 

designated by statute (usually their next of kin), or a representative assigned by a court. Deborah L. Kasman, 

“When Is Medical Treatment Futile? A Guide for Students, Residents, and Physicians,” Journal of General 

Internal Medicine 19 (October 2004): 1055.

9 See Robert Powell Center, 3–6; Crossley, 198–202.

10 Lawrence J. Schneidermann and Michael De Ridder, “Medical Futility,” Handbook of Clinical Neurology 118, 

no. 3 (2013): 169.

11 Crossley, 182–83.

12 Crossley, 182–84.

13 Robert M. Taylor and John D. Lantos, “The Politics of Medical Futility,” Issues in Law & Medicine 11, no. 1 

(1995): 7–8.

14 J. Andrew Billings and Eric L. Krakauer, “On Patient Autonomy and Physician Responsibility in End-of-Life 

Care,” Archives of Internal Medicine 171, no. 9 (2011): 849.

15 Mark A. Bonanno, “The Case of Baby K: Exploring the Concept of Medical Futility,” Annals of Health Law 4 

(1995): 155–56.

16 Billings and Krakauer, 850.

17 Crossley, 183.

18 Crossley, 183.

19 Crossley, 183; John M. Luce and Douglas B. White, “A History of Ethics and Law in the Intensive Care Unit,” 

Critical Care Clinics 25, no. 1 (2009): 5.

20 Crossley, 183; Luce and White, 5.

21 Luce and White, 5.

22 Taylor and Lantos, 7–8.

23 Taylor and Lantos, 7.

24 Taylor and Lantos, 7.

25 Taylor and Lantos, 7.

26 Taylor and Lantos, 7.

27 Taylor and Lantos, 7–8.

28 Taylor and Lantos, 8.

Medical Futility and Disability Bias 69
29 Taylor and Lantos, 8.

30 Taylor and Lantos, 8.

31 Billings and Krakauer, 849.

32 Bonanno, 155–56.

33 Andrew Courtwright and Emily Rubin, “Healthcare Provider Limitation of Life-Sustaining Treatment without 

Patient or Surrogate Consent,” Journal of Law, Medicine & Ethics 45 (2017): 442.

34 See Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990); In re Quinlan, 355 A.2d 647 (N.J. 1976).

35 Courtwright and Rubin, 442.

36 Lawrence J. Schneiderman and Nancy S. Jecker, “Medical Futility: Its Meaning and Ethical Implications,” 

Annals of Internal Medicine 112, no. 12 (1990): 949–54.

37 Schneiderman and Jecker, 949–54.

38 Hastings Center, Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying

(Bloomington: Indiana University Press, 1987): 32.

39 Courtwright and Rubin, 443; Halevy, 272–73; Dominic J. Wilkinson and Julian Savulescu, “Knowing When to 

Stop: Futility in the Intensive Care Unit,” Current Opinion in Anesthesiology 24, no. 2 (2011): 2.

40 Wilkinson and Savulescu, 2.

41 Courtwright and Rubin, 443.

42 Halevy, 272–73.

43 Halevy, 272–73.

44 Halevy, 274.

45 See In re Wanglie, No. PX-91-283 (Minn. Dist. Ct., Probate Ct. Div., July 1, 1991).

46 See In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), aff’d, 16 F.3d 590 (4th Cir. 1994), cert. denied, 115 S. Ct. 

91 (1994).

47 See Gilgunn v. Mass. Gen. Hosp., No. 92-4820 (Mass. Super. Ct. Apr. 21, 1995).

48 Halevy, 274–75.

49 Halevy, 274–75.

50 Courtwright and Rubin, 443; Halevy, 273–74.

51 Courtwright and Rubin, 443; Council on Ethical and Judicial Affairs, American Medical Association, “Medical 

Futility in End-of Life Care,” Journal of the American Medical Association 282, no. 10 (1999): 937–41.

52 Council on Ethical and Judicial Affairs, American Medical Association, 939.

53 Council on Ethical and Judicial Affairs, American Medical Association, 939.

54 See Diane Coleman, Not Dead Yet, “A Review of Evidence Supporting Certain Disability Rights Concerns About 

“End of Life” Advocacy,” Workshop, 3rd International Society of Advance Care Planning and End of Life Care 

Conference (May 31, 2012), http://notdeadyet.org/wp-content/uploads/2013/09/ACPELworkshop.pdf (Slides 20–23).

55 Coleman, 20–23.

56 Courtwright and Rubin, 443.

57 Wilkinson and Savulescu, 2–3, 14.

58 Not Dead Yet, “Futility Judgments—Some Doctors Think Patients Go Too Far,” last modified 2010, 

http://notdeadyet.org/some-doctors-think-patients-have-gone-too-far.

59 Crossley, “Ending-Life Decisions,” 893–922; Crossley, “Medical Futility and Disability Discrimination,” 179–259; 

Robert Powell Center for Medical Ethics, 2–6; Alicia Ouellette, “Context Matters: Disability, the End of Life, 

and Why the Conversation Is Still So Difficult,” New York Law School Law Review 58 (2014): 372–89; Michael 

Nair-Collins, Medical Futility and Involuntary Passive Euthanasia, Perspectives in Biology and Medicine 60, 

no. 3 (2017): 415–22.

60 Thaddeus Pope, interview with author, February 21, 2019.

61 Crossley, “Ending-Life Decisions,” 893–922; Crossley, “Medical Futility and Disability Discrimination,” 179–259; 

Robert Powell Center for Medical Ethics, 2–6; Alicia Ouellette, “Context Matters: Disability, the End of Life, 

and Why the Conversation Is Still So Difficult,” New York Law School Law Review 58 (2014): 372–89.

70 National Council on Disability
62 42 U.S.C. § 12102(1).

63 Crossley, “Ending-Life Decisions,” 900–01.

64 Kenneth A. Gerhart, et al., “Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of 

Emergency Care Providers,” Annals of Emergency Medicine 23, no. 4 (1994): 807–12.

65 Crossley, 900–01.

66 Dulce M. Cruz-Oliver et al., “Age as a Deciding Factor in the Consideration of Futility for a Medical Intervention 

in Patients Among Internal Medicine Physicians in Two Practice Locations,” Journal of the American Medical 

Directors Association 421–27 (2010): 424–25.

67 Yee et al., 42.

68 Yee et al., 41–44.

69 Nachama Wilker, interview with author, February 25, 2019.

70 Crossley, 900–02.

71 L. Bond et al., “Attitudes of General Practitioners Towards Health Care for People with Intellectual Disability and 

the Factors Underlying These Attitudes,” Journal of Intellectual Disability Research 41, no. 5 (1997): 391–400; 

Vasiliki Matziou, et al., “Attitudes of Nurse Professionals and Nursing Students Towards Children with Disabilities. 

Do Nurses Really Overcome Children’s Physical and Mental Handicaps?” International Nursing Review 56, 

no. 4 (2009): 456–60; Kenneth R. Mitchell et al., “An Investigation of the Attitudes of Medical Students to 

Physically Disabled People,” Medical Education 18, no. 1 (1984): 21–23; Raymond C. Tervo et al., “Medical 

Students’ Attitudes Toward Persons with Disability: A Comparative Study,” Archives of Physical Medicine 

and Rehabilitation 83, no. 11 (2002): 1537–42; Raymond C. Tervo, Glen Palmer, and Pat Redinius, “Health 

Professional Student Attitudes Towards People with Disability,” Clinical Rehabilitation 18, no. 8 (2004): 908–15.

72 Yee et al., 41–42.

73 Yee et al., 41–44; Clarissa Kripke, interview with author, February 28, 2019.

74 Clarissa Kripke, interview with author, February 28, 2019.

75 Clarissa Kripke, interview with author, February 28, 2019.

76 National Disability Rights Network, “Devaluing People with Disabilities: Medical Procedures That Violate Civil 

Rights,” (May 2012): 13, https://www.ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_

People_with_Disabilities.pdf.

77 National Disability Rights Network, 13; see also Buck v. Bell, 274 U.S. 200, 207 (1927).

78 Buck v. Bell, 274 U.S. at 207.

79 274 U.S. at 207.

80 274 U.S. at 207.

81 Yee et al., 44; William A. Garner et al., “Diagnostic and Treatment Overshadowing Bias Across Disabilities: Are 

Rehabilitation Professionals Immune?” Journal of Applied Rehabilitation Counseling 25, no. 2 (1994): 33–37; 

David A. Jopp and Christopher B. Keys, “Diagnostic Overshadowing Reviewed and Reconsidered,” American 

Journal of Mental Retardation 106, no. 5 (2001): 416–33.

82 Yee et al., 44; Garner et al., 33–37; Jopp and Keys, 416–33; Richard W. Goldberg et al., “Quality of Diabetes 

Care Among Adults with Serious Mental Illness,” Psychiatric Service 58, no. 4 (2007): 536–43; Susan L. 

Parish and Alison Whisnant Saville, “Women with Cognitive Limitations Living in the Community: Evidence of 

Disability-Based Disparities in Health Care,” Mental Retardation 44, no. 4 (2006): 249–59; Tom Shakespeare, 

Lisa I. Iezzoni, and Nora Groce, “Disability and the Training of Health Professionals,” The Lancet 374, 

no. 9704 (2009): 1815–16; Greer Sullivan et al., “Disparities in Hospitalization for Diabetes Among Persons 

With and Without Co-Occurring Mental Disorders,” Psychiatric Service 57, no. 8 (2006): 1126–31. The use of 

frailty scales to determine vital organ function has also proved problematic for people with disabilities. These 

scales use functional limitations as a proxy for determining vital organ functioning, which has predictably 

resulted in a disparate impact on people with physical disabilities, whose functional limitations may be 

misinterpreted as organ damage. The confusion can result in disparities in accurate medical diagnosis for 

people with disabilities. Clarissa Kripke, interview with author, February 28, 2019.

Medical Futility and Disability Bias 71
83 Yee et al., 43–44; Sara S. Bachman, “Provider Perceptions of Their Capacity to Offer Accessible Health Care 

for People with Disabilities.” Journal of Disability Policy Studies 17, no. 3 (2006): 130–36; Lisa I. Iezzoni et al., 

“Communicating About Health Care: Observations from Persons Who Are Deaf or Hard of Hearing,” Annals of 

Internal Medicine 140, no. 5 (2004): 356–62; Thilo Kroll, Phillip W. Beatty, and Shawn C. Bingham, “Primary Care 

Satisfaction Among Adults with Physical Disabilities: The Role of Patient-Provider Communication,” Managed 

Care Quarterly 11, no. 1 (2003): 11–19; Elizabeth H. Morrison, Valerie George, and Laura Mosqueda, “Primary 

Care for Adults with Physical Disabilities: Perceptions from Consumer and Provider Focus Groups,” Family 

Medicine 40, no. 9 (2008): 645–51; Melinda T. Neri and Thilo Kroll, “Understanding the Consequences of 

Access Barriers to Health Care: Experiences of Adults with Disabilities,” Disability Rehabilitation 25, no. 2 (2003): 

85–96; Annie G. Steinberg, Vicki J. Sullivan, and Ruth C. Loew, “Cultural and Linguistic Barriers to Mental Health 

Service Access: The Deaf Consumer’s Perspective,” American Journal of Psychiatry 155, no. 7 (1998): 982–84; 

Annie G. Steinberg et al., “Deaf Women: Experiences and Perceptions of Healthcare System Access,” Journal 

of Women’s Health 11, no. 8 (2002): 729–41; T. Witte and J. Kuzel, “Elderly Deaf Patients’ Health Care 

Experiences,” Journal of the American Board of Family Practice 13, no. 1 (2000): 17–22.

84 Yee et al., 43–44.

85 Clarissa Kripke, interview with author, February 28, 2019.

86 Clarissa Kripke, interview with author, February 28, 2019.

87 Clarissa Kripke, interview with author, February 28, 2019.

88 Clarissa Kripke, interview with author, February 28, 2019.

89 Robert Powell Center, 5–6.

90 Robert Powell Center, 5 (quoting Mildred Z. Soloman, “How Physicians Talk about Futility: Making Words 

Mean Too Many Things,” The Journal of Law, Medicine & Ethics 21, no. 2 [Summer 1993]: 231–33).

91 National Disability Rights Network, 28–30

92 National Disability Rights Network, 28.

93 National Disability Rights Network, 28.

94 National Disability Rights Network, 28.

95 National Disability Rights Network, 29–30.

96 National Disability Rights Network, 29–30.

97 National Disability Rights Network, 29–30.

98 National Disability Rights Network, 29–30.

99 National Disability Rights Network, 29–30.

100 National Disability Rights Network, 29–30.

101 Patricia Wen, “A New Life for Haleigh: For Child at the Center of an End-of-Life Battle, Family Created a Loving 

World,” Boston Globe (Aug. 3, 2014), https://www.bostonglobe.com/metro/2014/08/02/new-family-for-haleigh/

ZzKyT4wEkv7APZTHmiXMtO/story.html; Not Dead Yet, “Haleigh Poutre’s New Life and the Flawed Lessons 

People Are Taking Away from Her Story” (August 8, 2014), http://notdeadyet.org/2014/08/haleigh-poutres-newlife-and-the-flawed-lessons-people-are-taking-away-from-her-story.html.

102 Wen; Not Dead Yet.

103 Wen; Not Dead Yet.

104 Wen; Not Dead Yet.

105 Wen; Not Dead Yet.

106 Wen; Not Dead Yet.

107 American Academy of Neurology, “Practical Guideline Update: Disorders of Consciousness,” (August 8, 2018), 

https://www.aan.com/Guidelines/home/GetGuidelineContent/929.

108 Andrews et al., “Misdiagnosis of the Vegetative State: Retrospective Study in a Rehabilitation Unit,” British 

Medical Journal (July 1996): 313–16.

109 Jeneen Interlandi, “A Drug That Wakes the Near Dead,” New York Times Magazine (Dec 1, 2011).

72 National Council on Disability
110 James Lindemann Nelson and Joel Frader, “Brain Trauma and Surrogate Decision-Making: Dogmas, Challenges, 

and Response,” The Journal of Clinical Ethics (Winter 2004): 264.

111 Wilkinson and Savulescu, 2–3, 13.

112 Sigrid Fry-Revere, Thomas Reher, and Matthew Ray, “Death: A New Legal Perspective,” Journal of 

Contemporary Health Law and Policy 27 (2010): 24–25.

113 Jon D. Feldhammer, “Medical Torture: End of Life Decision-Making in the United Kingdom and United States,” 

Cardozo Journal of International and Comparative Law 14 (2006): 519.

114 Feldhammer, 519.

115 Fry-Revere, Reher, and Ray, 24–25;

116 George P. Smith II, “Utility and the Principle of Medical Futility: Safeguarding Autonomy and the Prohibition 

Against Cruel and Unusual Punishment,” Journal of Contemporary Health Law and Policy 12 (1995): 6–7.

117 Crossley, 187–88.

118 Crossley, 187–88.

119 Feldhammer, 519.

120 Schneiderman and Jecker, 949–54.

121 Schneiderman and Jecker, 949–54.

122 Eric Gampel, “Does Professional Autonomy Protect Medical Futility Judgments?” Bioethics 20, no. 2 (2006): 94.

123 Schneiderman and Jecker, 949–54; Smith, 6–7.

124 Kasman, 1053.

125 Bonanno, 157–60.

126 Bonanno, 157–60.

127 Thaddeus Pope, interview with author, February 21, 2019.

128 Thaddeus Pope, interview with author, February 21, 2019.

129 Thaddeus Pope, interview with author, February 21, 2019.

130 Schneiderman and Jecker, 949–54; Crossley, 188.

131 Crossley, 188.

132 Schneiderman and Jecker, 949–54; Crossley, 188.

133 Yee et al., 40–42.

134 Thaddeus Mason Pope, “Medical Futility and Potentially Inappropriate Treatment: Better Ethics with More 

Precise Definitions and Language,” Perspectives in Biology and Medicine 60, no. 3 (2017): 423–27.

135 Ronald Cranford and Lawrence Gostin, “Futility: A Concept in Search of a Definition,” Law, Medicine, and 

Health Care 20 (1992): 307.

136 Gampel, 95–96.

137 Smith, 20.

138 Smith, 20–22.

139 Smith, 20–22.

140 See, e.g., Smith, 20–22; Andrew I. Batavia, “Disability Versus Futility in Rationing Health Care Services: 

Defining Medical Futility Based on Permanent Unconsciousness—PVS, Coma, and Anencephaly,” Behavioral 

Sciences and the Law 20 (2002): 220.

141 Meir Katz, “When Is Medical Care ‘Futile’? The Institutional Competence of the Medical Profession Regarding 

the Provision of Life-Sustaining Medical Care,” Nebraska Law Review 90 (2011): 31–39.

142 Robert Powell Center, 6.

143 Taylor and Lantos, 7–8.

144 Kasman, 1055.

145 Kasman, 1055.

146 Kasman, 1055.

147 National Disability Rights Network, 29.

Medical Futility and Disability Bias 73
148 National Disability Rights Network, 29.

149 National Disability Rights Network, 29.

150 While this report briefly discusses surrogates and their role in medical futility decisions, note that surrogate 

decision-making is a complex legal and policy issue in itself and it is outside the scope of this report. This 

report focuses only on the dynamic between healthcare providers and patients (or their representatives), 

instead of between the surrogate and the patient.

151 Ashley Bassel, “Order at the End of Life: Establishing a Clear and Fair Mechanism for the Resolution of Futility 

Disputes,” Vanderbilt Law Review 63 (2010): 509.

152 Bassel, 495–96; Thaddeus M. Pope and Ellen A. Waldman, “Mediation at the End of Life: Getting Beyond the 

Limits of the Talking Cure,” Ohio State Journal on Dispute Resolution 23 (2007): 147–50; Wesley J. Smith, “Death 

by Ethics Committee: Refusing to Treat Lives Deemed Unworthy of Living,” National Review (April 27, 2006), 

https://www.nationalreview.com/2006/04/death-ethics-committee-wesley-j-smith/; Tuğba Arik, Muel Kaptein, 

and Edgar Karssing, “Ethics Committees (Including Research),” Encyclopedia of Business and Professional Ethics

(Springer International Publishing 2018), 1–2; Margaret Moon, “Institutional Ethics Committees,” Pediatrics 143, 

no. 5 (May 2019): 1–5.

153 Ellen Fox et al., “Ethics Consultation in United States Hospitals: A National Survey,” American Journal of 

Bioethics 7, no. 2 (Feb. 2007): 23.

154 Tex. Health & Safety Code Ann. §§ 166.046(b)(2); Bassel, 509; Thaddeus Mason Pope, “Dispute Resolution 

Mechanisms for Intractable Medical Futility Disputes,” New York Law School Law Review 58 (2014): 361–62, 367.

155 Tex. Health & Safety Code Ann. §§ 166.046(b)(2); Bassel, 519; Pope, “Dispute Resolution Mechanisms for 

Intractable Medical Futility Disputes,” 361–62, 367; Robert D. Truog, “Counterpoint: The Texas Advance 

Directives Act Is Ethically Flawed: Medical Futility Disputes Must Be Resolved by a Fair Process,” CHEST 

Journal 136, no. 4 (October 2009): 968–71.

156 Bassel, 495–96; Pope, “Dispute Resolution Mechanisms for Intractable Medical Futility Disputes,” 367; Pope 

and Waldman, 147–50; Smith, “Death by Ethics Committee”; Arik, Kaptein, and Karssing, 1–2; Moon, 1–2, 4–5.

157 Bassel, 521–22; Pope, “Dispute Resolution Mechanisms for Intractable Medical Futility Disputes,” 367; 

Thaddeus M. Pope, “Multi-Institutional Healthcare Ethics Committees: The Procedurally Fair Internal Dispute 

Resolution Mechanism,” Campbell Law Review 31 (2009): 274–75; Cynthia M. A. Geppert and Wayne 

Shelton, “Health Care Ethics Committees as Mediators of Social Values and the Culture of Medicine,” 

American Medical Association Journal of Ethics 18, no. 5 (May 2016): 536–37; Arun Bhatt, “Managing Conflict 

of Interest in Ethics Committee,” Perspectives in Clinical Research 9 (2018): 37–39; Mark Siegler, “Ethics 

Committees: Decisions by Bureaucracy,” The Hastings Center Report 16, no. 3 (1986): 22–24; see also Helen 

Kohlen, Conflicts of Care: Hospital Ethics Committees in the USA and Germany (Frankfurt/New York: Campus 

Verlag, 2009).

158 Bassel, 513; see Rideout v. Hershey Medical Center, 30 Pa. D. & C. 4th (Pa. Com. Pl. 1995).

159 Bassel, 513–14.

160 Bassel, 513–14.

161 Bassel, 513–14.

162 Bassel, 513–14.

163 National Disability Rights Network, 52; Thaddeus Pope, interview with author, February 21, 2019.

164 Alicia Oulette, “Growth Attenuation, Parental Choice, and the Rights of Disabled Children: Lessons from the 

Ashley X Case,” 8 Houston Journal of Health Law and Policy 8 (2008): 210–17 (describing the Ashley X case).

165 Nachama Wilker, interview with author, February 25, 2019; Thaddeus Pope, interview with author, February 

21, 2019.

166 Bill Peace, interview with author, March 14, 2019.

167 Nachama Wilker, interview with author, February 25, 2019.

168 Thaddeus Pope, interview with author, February 21, 2019. It is worth distinguishing between two types of case 

here: those where the patient is still alive, and thus is seeking a temporary restraining order or preliminary 

74 National Council on Disability
injunction to prevent the withholding or withdrawal of care, and those where the patient has already died 

because of a futility judgment, and thus their family is bringing a wrongful death or other tort action. The former 

is more likely to find pro bono representation than the latter.

169 Bassel, 524–25.

170 Bassel, 524–25.

171 Pope, “Dispute Resolution Mechanisms for Intractable Medical Futility Disputes,” 367; Pope, 

“Multi-Institutional Healthcare Ethics Committees,” 274–75.

172 See Thaddeus Mason Pope, “Hospitals—Futility Policies,” last modified 2017, http://www.thaddeuspope.com/

medicalfutility/futilitypolicies.html.

173 Thaddeus Pope, interview with author, February 21, 2019; Clarissa Kripke, interview with author, 

February 28, 2019.

174 Thaddeus Pope, interview with author, February 21, 2019.

175 American Medical Association, Council on Ethical and Judicial Affairs, “Medical Futility in End-of-Life Care,” 

Journal of the American Medical Association 281, no. 10 (March 1999): 940.

176 Texas Medical Association, “TMA Board of Councilors Current Opinions,” last modified March 23, 2010, 

https://www.texmed.org/Template.aspx?id=392.

177 See Laura C. Hoffman, “Hospital Medical Futility Policy & the Severely Disabled Child: Is Disability a Death 

Sentence?” Hamline Law Review 36, no. 2 (January 2014): 293–94 (describing disclosure bills in Michigan 

and Minnesota); Thaddeus Mason Pope, “Simon’s Law Legislation Introduced in Texas,” Medical Futility 

Blog, February 20, 2017, http://medicalfutility.blogspot.com/2017/02/simons-law-legislation-introduced-in.html

(describing disclosure bills in Texas and Kansas); Thaddeus Mason Pope, “Missouri Tries Again for Simon’s 

Law Red Light on Pediatric Medical Futility Policies,” Medical Futility Blog, January 1, 2017, http://medicalfutility.

blogspot.com/2017/01/missouri-tries-again-for-simons-law-red.html (describing disclosure bill in Missouri); 

Thaddeus Mason Pope, “Oklahoma Medical Treatment Laws Information Act: Futility Transparency,” Medical 

Futility Blog, May 22, 2014, http://medicalfutility.blogspot.com/2014/05/oklahoma-medical-treatment-laws.html

(describing disclosure bill in Oklahoma).

178 Hoffman, 293–94 (describing disclosure bills in Michigan and Minnesota); Pope, “Simon’s Law Legislation 

Introduced in Texas” (describing disclosure bills in Texas and Kansas); Pope, “Missouri Tries Again for Simon’s 

Law Red Light on Pediatric Medical Futility Policies” (describing disclosure bill in Missouri); Pope, “Oklahoma 

Medical Treatment Laws Information Act: Futility Transparency” (describing disclosure bill in Oklahoma).

179 Support Organization for Trisomy 18, Trisomy 13 and Related Chromosome Disorders, “Hospital Futility Policy 

Disclosures,” last modified 2012, http://trisomy.org/?page_id=2479 (transcript of Mary Kellett’s testimony to 

the Minnesota Senate Committee in support of SF 2238).

180 Support Organization for Trisomy 18, Trisomy 13 and Related Chromosome Disorders.

181 Support Organization for Trisomy 18, Trisomy 13 and Related Chromosome Disorders.

182 Taylor and Lantos, 7–8.

183 Robert Powell Center, 7–11.

184 Robert Powell Center, 1–12.

185 Robert Powell Center, 1–12.

186 Robert Powell Center, 7–8.

187 Robert Powell Center, Appendix 1–7.

188 Conn. Gen. Stat. § 19a-571(a); N.D. Cent. Code § 23-06.5-12(3); Wis. Stat. Ann. § 154.07(1)(a).

189 Robert Powell Center, Appendix 1–7.

190 Conn. Gen. Stat. § 19a-571(a).

191 Neb. Rev. Stat. § 30-34-28(1).

192 W. Va. Code § 16-30-12(a).

193 N.C. Gen. Stat. § 90-321(k); Tenn. Code Ann. § 32-11-108(a).

194 Robert Powell Center, Appendix 1–7.

Medical Futility and Disability Bias 75
195 Robert Powell Center, Appendix 1–7 (“All reasonable steps” to effectuate the patient’s transfer is required in 

Arkansas, Connecticut, Iowa, Louisiana, Nevada, New Jersey, Oregon, Pennsylvania, South Carolina, Tennessee, 

Guam, and the US Virgin Islands).

196 N.C. Gen. Stat. § 90-321(k).

197 Wis. Stat. Ann. § 154.07(1)(a).

198 755 Ill. Comp. Stat. Ann. 35/3(d); Ky. Rev. Stat. Ann. § 311.633(2); Wash. Rev. Code Ann. § 70.122.060(2); 

W. Va. Code § 16-30-12(a).

199 Ky. Rev. Stat. Ann. § 311.633(2).

200 W. Va. Code § 16-30-12(a).

201 Robert Powell Center, 8, Appendix 1–7.

202 Robert Powell Center, 8.

203 Robert Powell Center, 8.

204 Robert Powell Center, 8–9.

205 Robert Powell Center, Appendix 7–12.

206 Robert Powell Center, Appendix 7–12.

207 Robert Powell Center, 8, Appendix 7–12 (this mandate is found in the laws of Arizona, Indiana, Rhode Island, 

Utah, and the District of Columbia).

208 Robert Powell Center, 8.

209 Robert Powell Center, 8.

210 Robert Powell Center, 9 (state laws that require continuing care include those of Alaska, California, Colorado, 

Georgia, Hawaii, Maine, Mississippi, New Mexico, and Vermont).

211 Robert Powell Center, 9.

212 Robert Powell Center, 9.

213 Robert Powell Center, 9 (the state laws that require life-sustaining continuing care are Delaware and South 

Dakota; the state law that requires the provider to follow the patient advocate’s instructions is Michigan).

214 Robert Powell Center, 9.

215 Robert Powell Center, 9; Mo. Rev. Stat. § 404.830.

216 Idaho Code § 39-4514(3).

217 Idaho Code § 39-4514(6).

218 Idaho Code § 39-4514(3).

219 Robert Powell Center, 10; Va. Code Ann. § 54.1-2990; Tex. Health & Safety Code Ann. §§ 166.001–166.166.

220 Va. Code Ann. § 54.1-2990.

221 Va. Code Ann. § 54.1-2990.

222 Va. Code Ann. § 54.1-2990; Robert Powell Center, 10.

223 Tex. Health & Safety Code Ann. §§ 166.001–166.166; Robert Powell Center, 10.

224 Tex. Health & Safety Code Ann. §§ 166.001–166.166.

225 Tex. Health & Safety Code Ann. §§ 166.001–166.166.

226 Tex. Health & Safety Code Ann. §§ 166.001–166.166.

227 Robert Powell Center, 10–11, Appendix 19.

228 Robert Powell Center, 10–11, Appendix 15–18.

229 63 Okla. Stat. § 3090.3.

230 63 Okla. Stat. § 3090.3.

231 Bassel, 507.

232 In re Wanglie, No. PX-91-283 (Minn. Dist. Ct., Probate Ct. Div., July 1, 1991); Halevy, 274–75.

233 Halevy, 274–75.

234 Halevy, 274–75.

235 Halevy, 274–75.

236 Halevy, 274–75.

76 National Council on Disability
237 Halevy, 274–75.

238 Robert Powell Center, 3.

239 Courtwright and Rubin, 445–46.

240 Meyer v. Nebraska, 262 U.S. 390 (1923); Pierce v. Society of Sisters, 268 U.S. 510 (1925).

241 Roe v. Wade, 410 U.S. 113 (1973); Planned Parenthood v. Casey, 505 U.S. 833 (1992).

242 Griswold v. Connecticut, 381 U.S. 479 (1965).

243 Obergfell v. Hodges, 135 S. Ct. 2584 (2015).

244 497 U.S. 261, 269–85 (1990).

245 497 U.S. at 269–85.

246 497 U.S. at 282.

247 521 U.S. 702, 705–32 (1997).

248 521 U.S. at 705–32.

249 521 U.S. at 705–32.

250 Cruzan, 497 U.S. at 269–85; Glucksberg, 521 U.S. at 705–32.

251 Glucksberg, 521 U.S. at 710.

252 Increasingly, the substantive due process analysis also considers “emerging” or “evolving” American 

traditions. See, e.g., Obergfell v. Hodges, 135 S. Ct. 2584 (2015); Lawrence v. Texas, 539 U.S. 558 (2003).

253 473 U.S. 432 (1985).

254 42 U.S.C. § 1395dd.

255 Feldhammer, 525.

256 42 U.S.C. § 1395dd.

257 In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), aff’d, 16 F.3d 590 (4th Cir. 1994), cert. denied, 115 S. Ct. 91 (1994).

258 In re Baby K, 832 F. Supp. at 1024–31.

259 In re Baby K, 832 F. Supp. at 1024–31.

260 In re Baby K, 832 F. Supp. at 1024–31.

261 In re Baby K, 832 F. Supp. at 1024–31.

262 See, e.g., Bryan v. Rectors & Visitors of the University of Virginia, 95 F.3d 349 (4th Cir. 1996).

263 Philip G. Peters, Jr., “When Physicians Balk at Futile Care: Implications of the Disability Rights Laws,” Northwestern 

University Law Review 91 (1997): 798–864 (exploring the applicability and limits that disability rights laws place on 

critical care decisions and arguing that disability rights laws prohibit consideration of disability-impaired quality of life 

in treatment decisions except in the most extreme cases).

264 29 U.S.C. § 794.

265 42 U.S.C. §§ 12101–12213.

266 See 42 U.S.C. § 18116.

267 42 U.S.C. § 18116.

268 Rideout v. Hershey Medical Center, 30 Pa. D. & C. 4th (Pa. Com. Pl. 1995).

269 Gilgunn v. Mass. Gen. Hosp., No. 92-4820 (Mass. Super. Ct. Apr. 21, 1995).

270 Betancourt v. Trinitas Reg’l Med. Hosp., No. C-12-09 (N.J. Super. Ct. Mar. 4, 2009), available at http://thaddeuspope.

com/images/Betancourt_v_trinitas_3-4_2_.pdf.

271 Rideout v. Hershey Medical Center, 30 Pa. D. & C. 4th (Pa. Com. Pl. 1995); Gilgunn v. Mass. Gen. Hosp., 

No. 92-4820 (Mass. Super. Ct. Apr. 21, 1995); Betancourt v. Trinitas Reg’l Med. Hosp., No. C-12-09 (N.J. 

Super. Ct. Mar. 4, 2009).

272 42 U.S.C. §§ 12101–12213 (2010).

273 42 U.S.C. §§ 12131, 12181(7), 12182; 28 C.F.R. 36.104 (2017) (establishing that public accommodations 

include the “professional office of a health care provider, hospital, or other service establishment”).

274 Title I, 42 U.S.C. §§ 12111–12117.

275 Title II, 42 U.S.C. §§ 12131–12165.

Medical Futility and Disability Bias 77
276 Title III, 42 U.S.C. §§ 12181–12189.

277 Title IV, 47 U.S.C. § 225.

278 42 U.S.C. § 12101(b).

279 42 U.S.C. § 12101(a)(2).

280 42 U.S.C. § 12101(a)(3).

281 National Disability Rights Network, 49; see H.R. Rep. No. 101-485, at 31, as reprinted in 1990 U.S.C.C.A.N. 

303, 312 (quoting U.S. Commission On Civil Rights, Accommodating the Spectrum of Individual Abilities, 

p. 159). Testimony Before Senate Subcommittee on the Handicapped, S. Hrng. 101–156, May 10, 1989, p. 100 

(Robert Burgdorf, Jr., Professor of Law at the District of Columbia School of Law, testifying that “it makes no 

sense to bar discrimination against people with disabilities in theaters, restaurants, or places of entertainment 

but not in regard to such important things as doctor’s offices. It makes no sense for a law to say that people 

with disabilities cannot be discriminated against if they want to buy a pastrami sandwich at the local deli but 

that they can be discriminated against next door at the pharmacy where they need to fill a prescription. There 

is no sense to that distinction.”).

282 42 U.S.C. § 12132; 29 U.S.C. § 794.

283 42 U.S.C. § 12182(a).

284 See 42 U.S.C. §§ 12132, 12182(a).

285 42 U.S.C. § 12102(1). Title II of the ADA also requires the individual with a disability to be “qualified,” which 

means that, with or without reasonable modifications, she is otherwise qualified to participate in or receive 

the benefit of the services of a public entity. 42 U.S.C. § 12131(2).

286 42 U.S.C. §§ 12132, 12182(a).

287 42 U.S.C. § 12131(1)(B).

288 42 U.S.C. § 12181(7)(F).

289 See 29 U.S.C. § 794.

290 42 U.S.C. §§ 12132, 12182(a).

291 See Alexander v. Choate, 469 U.S. 287, 295–96 (1985).

292 832 F. Supp. at 1024–26.

293 832 F. Supp. at 1024–26.

294 832 F. Supp. at 1024–26.

295 Baby K, 832 F. Supp. at 1028–29.

296 Baby K, 832 F. Supp. at 1028–29.

297 Baby K, 832 F. Supp. at 1028–29.

298 In re Baby K, 16 F.3d 590, 592 n.2 (4th Cir. 1998).

299 Baby K, 16 F.3d at 592 n.2.

300 See Timothy B. Flanagan, “ADA Analyses of the Oregon Health Care Plan,” Issues of Law & Medicine 9 

(1994): 397–412; “The Oregon Health Care Proposal and the Americans with Disabilities Act,” Harvard Law 

Review 106, no. 6 (April 1993): 1296–1313.

301 Flanagan, 409–12; “The Oregon Health Care Proposal and the Americans with Disabilities Act,” 1296–1313.

302 Flanagan, 409–12; “The Oregon Health Care Proposal and the Americans with Disabilities Act,” 1296–1313.

303 Thaddeus Mason Pope, “Is the ADA an Obstacle to Appropriate EOL Care,” Medical Futility Blog, May 31, 

2008, http://medicalfutility.blogspot.com/2008/05/is-ada-obstacle-to-appropriate-eol-care.html (citing, generally, 

Schiavo v. Schiavo, 403 F.3d 1289, 1294 [11th Cir. 2005] noting that “[t]he Rehabilitation Act, like the ADA, was 

never intended to apply to decisions involving the termination of life support or medical treatment.”); Grzan 

v. Charter Hosp., 104 F.3d 116, 120–21 (7th Cir. 1997) (reviewing cases and legislative history); Rideout v. 

Hershey Med. Ctr., 30 Pa. D. & C.4th at ¶ 95 (1995) (quoting Anderson v. Univ. of Wis., 841 F.2d 737, 740 [7th 

Cir. 1988] that “the Rehabilitation Act forbids discrimination based upon stereotypes about a handicap, but it 

does not forbid decisions based on the actual attributes of the handicap.”); Johnson v. Thompson, 971 F.2d 

1487, 1492–94 (10th Cir. 1992).

78 National Council on Disability
304 Thaddeus Pope, interview with author, February 21, 2019.

305 403 F.3d at 1292–94.

306 403 F.3d at 1292–94.

307 403 F.3d at 1292–94.

308 403 F.3d at 1292–94.

309 Peters, 798–864.

310 42 U.S.C. §§ 12132, 12182(a).

311 42 U.S.C. §§ 12132, 12182(a); 29 U.S.C. § 794.

Medical Futility and Disability Bias 79
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Washington, DC 20004