www.mghcme.org/spauldingtbi

The Struggle to Retain Personhood After Severe TBI:

Ethical Issues, Rules and Rights

Joseph J. Fins, M.D., M.A.C.P. The E. William Davis, Jr., M.D. Professor of Medical Ethics Chief, Division of Medical Ethics & Professor of Medicine

Professor of Medical Ethics in Neurology & Medicine in Psychiatry Weill Cornell Medical College & New York Presbyterian Hospital

Co-Director, C.A.S.B.I.

Consortium for the Advanced Study of Brain Injury Weill Cornell and The Rockefeller University

Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law

Yale Law School

Rehabilitation Access and Outcome After Severe TBI:

A TBI Model System-Sponsored Stakeholder Summit

Washington, D.C.

16 May 2016

www.mghcme.org/spauldingtbi

I

In-depth IRB approved interviews with 50+ families of patients with disorders of consciousness. Provides window on barriers to care:

• Segregated class in chronic care

• Struggle for services

• Misdiagnosis

• Denied rehabilitation, thus community

• Insurance barriers

• Disability & Civil Rights

• Separate can not be equal…

www.mghcme.org/spauldingtbi

Brains recover by biological standards,

not reimbursement criteria

Fins JJ. "Wait, Wait --- Don't Tell Me"…Tuning in the Injured Brain. Archives of

Neurology. 2012

www.mghcme.org/spauldingtbi

A Mother on the “Improvement Standard”

You know how there’s those rules about

you only get physical therapy if you

progress from one level to another in a

certain number of days. So obviously

someone who is minimally conscious is

less likely to succeed in those categories

even though they might need physical

therapy. Those benchmarks don’t work for

people who are not conscious. But they’re

still used.

Nancy Worthen

Fins JJ Rights Come to Mind: Brain Injury Ethics and the

Struggle for Consciousness. Cambridge Univ Press (2015)

Nancy and Maggie Worthen

www.mghcme.org/spauldingtbi

Jimmo v. Sebelius

Settlement with CMS

Revision of Medicare Policy Manual:

- No “Improvement Standard”

- Lack of restoration not disqualifying

- No rule-of-thumb assessments re

skilled care

- Individualized assessment, not

categorical denial determines

“reasonableness”

- Skilled services to preserve

capabilities or prevent deterioration

But ongoing challenge with Local Care

Determinations Journal Law Medicine Ethics, 2016

www.mghcme.org/spauldingtbi

More than an Insurance Issue…

• Brain Injured individuals, ignored, sequestered, potentially salvageable

• Two tier system of care

• Young people with brain injuries segregated in nursing homes

• Ill-equipped for medical management

• Absence of rehabilitation

• Disrespect for human dignity Fins JJ Rights Come to Mind: Brain Injury,

Ethics and the Struggle for Consciousness.

Cambridge University Press, 2015

“Unless you’re there all the time and they

know you are coming, then they’re going

to do what they’re supposed to do. But

I’ve seen where patients, nobody doesn’t

come to visit them and the staff, they

don’t given a damn about them. That’s

why I saw my son, to make sure he was

taken care of…if I didn’y come here

twice a day I belive my son would be

dead by now.” John Harmon

“...my mother dislocated her own knee

(from contractures)... This really could

have been prevented because our

orthopedic surgeon yelled at the

physicial therapist, ‘how can you have let

this happen, because this is

unacceptable.’” Heidi Hansen

www.mghcme.org/spauldingtbi

A Question of Civil Rights…

• Segregation in chronic care

• Violation of human rights

• Americans with Disability Act (ADA)

• UN Convention on Disability

• Right to be maximally integrated into society

• Liberty Interest

• Overcome legacy of segregation

Fins JJ Rights Come to Mind:

Brain Injury, Ethics and the

Struggle for Consciousness.

Cambridge University Press, 2015

www.mghcme.org/spauldingtbi

Deeply Rooted Discrimination

“The Jim Crow system established after Plessy and the government-supported, systematic segregation of persons with disabilities during precisely the same time were no mere coincidence of historical events. The historical record abounds with evidence that disability discrimination emanated from the same attitudes and prejudices fomenting at the turn of the century regarding race.”

Professor Timothy Cook (Fins, Rights Come to Mind, 298)

www.mghcme.org/spauldingtbi

Congressional Intent & the ADA

“Mandate for the elimination of

discrimination against

individuals with disabilities”

precisely because “historically,

society has tended to isolate

and segregate individuals with

disabilities”

42USC 12101 DOJ,

Civil Rights Division

“Congress explicitly

identified identified

unjustified ‘segregation’ of

persons with disability as a

form of discrimination”

Justice Ruth Bader Ginsburg

Olmstead vs. LC 1999

Olmstead Enforcement Opportunity to improve care Bring services to segregated patients Integrate patients into community Give brain injured means to communicate Builds community and achieves integration A policy and legal wedge for reform. But need to ensure relevance for patients with brain injury…