elderly person's hand clasped in young person's hands

How Would You Like to be Treated if You Had Dementia?

The New Yorker just published an article full of ethical questions about the best health care treatment for dementia patients. It should make you think about which life you would choose. Larissa MacFarquhar’s piece is titled “The Comforting Fictions of Dementia Care.” Its subtitle suggests a sad story, noting “Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience.” The article tells numerous powerful stories of dementia patients’ good and bad experiences.

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Thad Pope on ‘The Week in Health Law’ Podcast

By Nicolas Terry and Frank Pasquale

Subscribe to TWIHL here!

Our guest this week is Thaddeus Mason Pope, Director of the Health Law Institute and Professor of Law at Mitchell Hamline School of Law. Thad is also a Ph.D. with multiple global academic posts. This week we discuss grave and complex problems in end of life care, focusing on the tragic case of Jahi McMath. Thad recently published “Brain Death Forsaken,” and offers a wealth of insight on this and similar situations. The definition of death has complex implications for insurance, reimbursement, malpractice, and even criminal law.

The Week in Health Law Podcast from Frank Pasquale and Nicolas Terry is a commuting-length discussion about some of the more thorny issues in Health Law & Policy. Subscribe at Apple Podcasts, listen at Stitcher Radio Tunein, or Podbean, or search for The Week in Health Law in your favorite podcast app. Show notes and more are at TWIHL.com. If you have comments, an idea for a show or a topic to discuss you can find us on Twitter @nicolasterry @FrankPasquale @WeekInHealthLaw.

It’s Time to Reinvigorate the Constitutional Claim for Physician Assistance in Dying

by  Norman L. Cantor

Since 1997, when the U.S. Supreme Court rejected federal constitutional challenges to New York and Washington prohibitions of assistance to suicide, the notion that a dying patient might have a constitutional right to obtain a lethal prescription has gotten short shrift.  Even when the dying patient’s claim for physician assistance in dying (PAD) has relied on state constitutional provisions, no state supreme court has ruled that state liberty or equal protection guarantees so benefit a competent, terminally ill medical patient.  See T.M. Pope, Legal History of Medical Aid in Dying: Physician Assisted Death in U.S. Courts and Legislatures,   N. Mex. L. Rev.  (2018). At least 5 state highest courts have rejected such claims.  Yet developments and insights emerging over the last 21 years in death and dying jurisprudence provide reason to reinvigorate constitutional challenges to state prohibitions on a physician’s providing a lethal substance to a competent, fatally stricken medical patient.

The first Achilles heel in current legal doctrine relates to the “liberty” concept invoked by fatally stricken claimants.   When Chief Justice William Rehnquist rejected the patients’ liberty claim in Washington v. Glucksberg, he labeled it as seeking a “right to suicide.”  That over-simplistic formulation of the constitutional claim presaged its failure.  Of course the guides to fundamental liberty, i.e., the traditions and collective conscience of the people, do not encompass “suicide.”  Suicide, broadly viewed as a choice to “prematurely cut short a viable life, usually for reasons of a transient nature and often involving depression,” has always been disdained and discouraged.  Pope, supra, at 29.  Law has customarily allowed physical intervention to prevent suicide, and has criminally punished assistance to suicide.

Rehnquist, though, was unfairly characterizing the liberty claim of dying patients.  Those dying patients in Glucksberg were not advancing a broad prerogative to terminate a life deemed unbearably unhappy.  Rather, they were asserting a fatally stricken person’s interest in medical management of the dying process and in control of the timing of an unavoidable, lurking death.  Only in the 20th century, with development of modern medical tools, did this issue really emerge.  Only then did a fatally stricken patient incur risk of a protracted dying process with accompanying suffering or degradation.  The 21st century is witnessing an expanded incidence of medically mediated death, a phenomenon warranting renewed focus on end-of-life self-determination.

The 21st century is also witnessing development in another measure of fundamental liberty – the collective conscience of the people.  Polls in 2017 show that 67% of Americans now support the concept of physician-assisted death.  Public sentiment may not be a determinative factor, but it is relevant in shaping the meaning of fundamental liberty.  Also relevant are developments in legalization of PAD as in California, Colorado, New Hampshire, Montana, and the District of Columbia. In short, a basis exists for refining and resubmitting the constitutional claim that self-determination in management of a looming, unavoidable dying process should be deemed a fundamental aspect of liberty.  Read More

Redefining Death in the Law

By: Gali Katznelson

Jahi McMath was issued a death certificate four years ago in California. Today, at the age of 16, she remains connected to a ventilator in an apartment in New Jersey. Jahi was declared brain dead by her clinicians at Oakland’s Children’s Hospital following a cardiac arrest after a tonsillectomy. A legal battle between Jahi’s mother and the hospital ensued, with the mother requesting that Jahi remain on life support. The hospital refused, and after the hospital released Jahi to a coroner who issued her death certificate, Jahi’s family transported her to a paediatric ICU in a New Jersey hospital. New Jersey is the only state with a law requiring hospitals to accommodate patients whose families do not accept a determination of brain death on religious grounds.

Religious objections to brain death come from some members of the Orthodox Jewish, Japanese Shinto, Native American and Muslim communities. New York, California and Illinois also mandate accommodations for religious objections to brain death but these states leave the nature of the accommodation to the discretion of individual hospitals. This is unlike New Jersey, which allows an exception to brain death criteria and imposes a duty to accommodate patients who reject brain death state-wide. Should all states enact some form of a religious accommodation to brain death? To consider the same person to be alive in one part of the country but dead in another seems illogical. But rather than adapting current laws to accommodate objections based on religion, a more coherent approach might be to redefine the nature of the law itself.

As it stands in the US, the determination of brain death by neurological criteria is equated to a legal definition of death. This history dates back fifty years, to a report by the Harvard Ad Hoc Committee on Brain Death that defined irreversible coma as a new criterion for death. Neurologic criteria for death eventually made its way into law through the 1981 Uniform Declaration of Death Act (UDDA). This model statute states that death could be determined for an individual who has sustained either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem, made in accordance with acceptable medical standards. Every state has adopted some version of this statute.

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The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.” Read More

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

Read More

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare.  Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness

The Development and Certification of Decision Aids: Promoting Shared Decision-Making for Patients with Serious Illness
April 18, 2018 8:30 AM – 4:30 PM
Wasserstein Hall, Milstein East AB (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

Decision aids can be highly-effective tools to promote shared decision making and support patients in becoming engaged participants in their healthcare. Join us for the first-ever convening with leaders behind a Washington experiment in certifying decision aids, as state officials, health systems, and on-the-ground implementation experts share lessons learned and discuss policy recommendations for national or statewide approaches to decision aid certification.  

Program Overview

Person-centered care presents a unique opportunity to achieve the Quadruple Aim, especially during serious illness when people are the most vulnerable. Building on the work of NQF and others, it is now clear that healthcare purchasers (states, plans, care providers) committed to person-centered care should also be committed to shared decision-making.

A number of policy initiatives have sought to increase the use of decision aids as an effective way to further shared decision making and person-centered care. Washington is the first – and so far only – state to recognize and act on this opportunity by establishing a process to certify decision aids across the health continuum, including during serious illness when people are the most vulnerable. The program will examine the Washington experience and also explore policy barriers for replication of the Washington model at the state and national levels.

This event is free and open to the public, but seating is limited and registration is required. Register now!

This event is part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 130 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity and improve public and private policies in advanced illness care.

Learn more about the event here!